Day to day with Parkinson's Disease

Dusty Brain

2012-02-08T05:43:00.000-08:00

I have a cold. Nothing serious, just a mild inconvenience, but it has added to another problem we have faced the past few days.

You see, I sneeze. I sneeze a lot. Fortunately for those close to me, my colds are very rare, but this virus seems to be characterized by a lot of sneezing, even for me. It began on Sunday with absolutely no warning. In fact, I had been feeling rather cocky about my constitution of steel and was congratulating myself in the morning while I wielded my vacuum cleaner and danced around to loud music blasting through my ipod earbuds. Michael dozed on the couch, as always.

At first I thought it was the large accumulation of dust that was responsible, stirred from its slumber after a few weeks of a January slump, a slump I was kicking out of the house with a vigorous round of housekeeping and an energetic dance session. A new Jack White song was on a fairly continuous loop all morning. Why is it that testosterone driven music fits the housekeeping bill so well?

The sneezing began in the afternoon. Now, my sneezing is not one of my most attractive features. If I can ever be described as lady-like, my sneezes quickly dispel that odd notion. They are roof-lifters. And they are never expelled singly. There is usually an entire volley of them, startling dogs, sleeping husbands, hidden spiders and any other creatures lurking in our house at this frigid time of year. They are almost as effective as the vacuum for ridding the house of unwanted life forms.

These sneezes are the most violent I have ever experienced, both for force and volume. They are terrifically satisfying too, bordering on orgasmic (hey, I take my fun wherever I can, folks). They are loud enough to wake the dead.

The dead, maybe, but not Michael. He seemed unusually unresponsive to my explosions. For weeks now he has been preoccupied with a right ear that seems to be plugged. Despite warnings to the contrary, he has been digging away at this ear in an attempt to clear it. Nasty, soiled Q-tips have been found in the oddest places. Each time I saw him performing his surgery, I would think about putting oil in his ear then forget about it until the next vigorous attempt. The action was always accompanied by wild facial contortions, forcing me to suppress a giggle.

Over the past few weeks he has been generally more withdrawn, confused and silent, usually not responding to anything I say, which I just put down to the progression of the disease and thirty-plus years of marriage. But yesterday, when I realized that he was now digging away at both ears, I asked him if he was having trouble hearing. Silence. This time louder, "Can you hear me?" Apparently he cannot unless I shout.

So maybe this has been the reason for his further withdrawal. Earwax. I dragged out some oils and potions designed to soften the wax but since the oil was to remain in the ear for a time with the small cotton plugs in place to be effective, it was immediately apparent that, since he repeatedly pulled out the plugs and dumped them onto the floor seconds after I inserted them, this was not going to work.

I called the nurse this morning for an ear exam and have yet to hear back from her. In the meantime, there is a lot of very loud shouting going on in my desperate efforts to be heard and understood. And I must compete with the television which needs to be jacked up to nearly full volume for him to hear anything. Add to that my occasional rhinal outbursts of the past two days and you will get an idea of the loud cacophony that no doubt must be heard throughout the community if not the country. And that's not even considering two rowdy dogs who need to yell at everything that moves.

Sheesh, for two otherwise pretty quiet, retiring folks, we make quite a racket.

A Night Out With Meryl

2012-02-01T07:42:00.000-08:00

And Shirley and Carol and Angela, all equally strong, fine women. There would have been more of us but the region was hit by a small snow storm that threatened to escalate to a road-blocking extravaganza, making a few of our company worried enough about the driving conditions to cancel. But it was my rare night out and nothing short of a serious tempest was going to stop me. I offered to do the driving in to town to see "The Iron Lady"; I am so glad we were not deterred by the weather.

Meryl Streep, as most of you already know, wrapped herself up in the role of Margaret Thatcher so completely that I forgot she was Meryl and not Maggie. Told from the perspective of the here and now with an elderly Mrs Thatcher in the advanced stages of dementia and flashing back through her incredible history, we get a glimpse of the strength of this woman's formidable character, for which she was roundly hated by many, and of the unbearable sadness of a brilliant life reduced to isolation and the hallucinations that can accompany dementia. That artistic device is employed to bring back her husband Dennis (Jim Broadbent) who, you believe at first, is still alive and well and enjoying a boiled egg with his wife. Through the movie she struggles with his persistent presence, realizing occasionally that he is just a figment of her addled brain, and then she tries to banish him by turning on every electrical noisemaker in her home, desperately believing that if she cannot hear him, she will not be able to see him.

Whatever anyone might feel about the real Maggie Thatcher, nobody, I wager, will walk out of the movie house untouched by the character's sadness and grief, especially if you have any experience at all with advanced dementia. Her husband's presence, albeit ghostly, gives her enormous comfort in her now circumscribed life. I was reminded of my mother who, in her last days on this earth, would be nodding off in her wheelchair, oblivious to her present company, then would chuckle happily and say, "Oh Jack!" in an admonishing tone, as if scolding my dad for some little joke he had told her, just as she used to when he was alive. It gave me great comfort to imagine Dad was there with her, teasing and cajoling her through her difficult last days.

Living in the past is not only a clever story-telling device but also a ruse played by the mind of a healthy soul to cope with a difficult present. I know Michael sometimes is thrown back into the past and can get locked into it, scrambling his perception of the present, but I too employ the device to get me through a troubled day. To remind myself of the man that once was allows all the love and admiration I felt for him to flood back as I change the diaper on the man with a now wasted mind. More and more often I find myself reliving past happy occasions. It is an odd feature of our memory how we can delete much of the not-so-perfect events of our lives together while idealizing the good. Even if it is not an altogether accurate history, I'd rather remember only the good.

We heard yesterday that my aunt had what is believed to be a massive stroke, though that has yet to be confirmed by the staff at the hospital in England where she is being treated. She is my last remaining blood relative of that generation, a fiercely independent woman who has had to live alone nearly thirty years after losing her husband far too early to a heart attack. I just spoke to her last week and listened to entertaining stories of her recent travels. Still bright and articulate at 87, she lived in her own home until yesterday morning when she was found unconscious by her cleaning lady. We have yet to learn what her prognosis is; childless, she has no other close family besides my brother and me so I worry about her loneliness. She was on my mind throughout the film last night, wishing I could share it with her and hear her perspective on the fierce and unforgettable Maggie Thatcher. But I was also fervently hoping that her own dear Alan is at her side right now, teasing and making light of her current condition, just as her brother, my father, seemed to do for my mother.

Be It Resolved.

2012-01-24T20:06:00.000-08:00

It's January and there has been a lot of snow over the past few weeks, some of it encrusted with a layer of ice requiring extra effort to remove it. Bitter winds. Playful dog getting in the way. Arthritic fingers throbbing from the repeated abuse of shoveling. Wondering if I can, if I want to, keep up the work on this house, my home, with a full time caregiving job. Winter is always a challenging time, isolation sometimes overwhelming especially with fewer days of respite; most weekends, some three long days, are the hardest with often no human contact other than the telephone/computer variety. Michael is weaker, quieter, crazier these days, occasionally breaking free in dangerously cold weather to flee down the driveway, inadequately dressed, escape all too easy out a basement door to the outside when I am distracted. I am amazed how he can go from a near-comatose state sprawled out on the couch to full mobility, full speed escape even now. Going out together on outings is more difficult than ever or maybe just in my head, so we don't. Car rarely leaves the driveway. Only 80 km logged since Christmas time. Great for the environment, not so great for state of mind.

My internal debate has resumed, if it ever stopped, always more fervent at this time of year: Be it resolved that Michael's care is better at home than in a care facility. Arguing volubly "For" is Claire the Ardent Caregiver. Arguing "Against", with far less conviction to make a cogent argument on her own behalf, is Claire the Tired Wife. Here are the questions being lobbed with some force from the Pro Side:

Who would do nightly prayers with him, an essential part of a calm night for him?

Who would patiently (but only after a deep breath) get up to the clanging of his whistle-alarm in the night to reassure him that all is well?

Who would tailor his medications to his needs rather than adhering to the strict schedules of an institution?

Who would allow him to walk as freely as he can in the house despite many falls, not worrying about litigious action?

Who would be there to rescue him from the obstacles of the television remote control, an act repeated many, many times each day?

Who would be there to monitor the subtle cues and clues he gives each day, often silently, a language that has taken me this long to decipher? Clues that tell me he is in distress when he cannot speak. Cues to his need for medication or assistance right now. He would never be able to figure out a simple call button to summon help, a man who can no longer use the telephone, remote control or any other electronic device.

Who would make him his favourite foods when he will eat nothing else, prepare a cup of tea or a snack at odd times of the day? Who would monitor his digestive functions as closely as I do?

Where would the loving, loyal dogs be who frequently demand that he pet them and give them attention, often unlocking a trance he has fallen into?

Where would all his familiar touchstones be that keep him as grounded as he can be these days? Things like the familiar trees in the front of our house that he gazes at for long periods, watching all the life therein. Or just watching the passersby on our road, seeing people come and go.

The answers to all of these questions very strongly support the case for Michael to stay put at home. Add to that the fact that I have seen life up close in an institution. I know how it goes. They are not bad places, and they provide a valuable service for those who have nobody else to care for them or whose care needs are impossible to manage at home. But they are less than perfect. They are chronically understaffed. Residents, especially those with mobility problems, spend long periods of time alone in their sterile rooms often in soiled diapers. If dementia is an issue, a resident like Michael might not even be able to understand how to summon help if needed. There are often residents who are coping with personality changes from the ravages of Alzheimer's, making them aggressive, sometimes violent and a very real threat to others. It can be a terrifying experience for many. I would guess that a lot of calming medication is used for the residents and maybe even the staff.

The guilt I feel at even contemplating such a decision is overwhelming and I know in my heart that life won't necessarily be any easier for me either. I know myself too well. If the staff in a care facility call upon me to help out - and they would if past experience is anything to go on - when Michael inevitably steps over the cliff into full insanity, I will step up to ease his pain and theirs because he can be completely unmanageable, even violent. I could find myself at his side all the time because I know I am the only one to calm his panic unless staff keep him permanently and heavily sedated and restrained. In the past, restraint has meant tying him up in bed, flat on his back unable to move for hours on end, or tied up in a chair from which he attempts to escape, always harming himself. Yes, I might have the freedom to do a few things by myself without requiring someone on board here at home, but I will be on the road all the time traveling the considerable distance up the highway to help out with his care. Many have argued that surely Michael would adjust. All past experience when Michael has been hospitalized has shown that his mental condition worsens the longer he is incarcerated. I could only expect the same in a nursing home.

Maybe I need to consider a move to ease the frustration of balancing onerous caregiving duties and home maintenance. But the effort required to even think the thought is exhausting. And there is no accommodation in our community that would suit his needs; no condominiums, no apartments, no accessible housing with small, low maintenance yards. This house suits him perfectly, if only I can manage. I would have to leave the community altogether to find anything better and that I am not ready to do yet. My friends are here, my support network. We are well located next to amenities making shopping for the essentials quick and easy, my volunteer work just steps away. These considerations do not even include how such a huge change - any change - would inevitably push Michael over the edge.

Besides, I don't want to escape my home, just, some days, my situation. To not hear the incessant crashes to the floor with almost every step he makes, a sound that most of the time doesn't even elicit a wince from me but on occasion I cringe and brace myself for what must be severe injury. It never is. At home he has fallen thousands of times throughout this disease. Thousands. But he is still independent enough to make that one small decision in his life, to get up and move if he wants to even if it means hurting himself. If he were in an institution, he'd never be allowed to fall so much. Liability issues would override.

Another consideration is the cost of institutional care. I can afford it, I think, but it will mean more fiscal restraint to manage the high cost of care. My round-the-clock services are free. We have two weddings this year and have committed a small, but not insignificant, amount to each offspring to help with their costs. We live on a reasonable pension but I would have to consider re-entering the workforce which, after being out of it for 30-plus years, is daunting to say the least. A degree in English Literature has never been a ticket to a lucrative job, even less so added to so many years of unpaid domestic work. I am severely out-of-touch with new technological advances in the modern libraries, a revolution that was just beginning when I left the profession. Besides, in those days, a degree in English was considered enough education for the job. I'd have to go back to school to qualify now. UGH. I don't think I'd enjoy that any more than when I did it the first time, not to mention the stress it would add.

Whether I ever take the plunge and make that phone call to place Michael remains to be seen. For now the debate continues as a loud chattering in my brain where it must stay. I know where many friends and family members stand on the issue, so sharing the conversation at this point would serve no purpose. I trust I will know on my own when it's time, when the noise is finally silenced, the guilt assuaged. For now Michael's needs supersede my own.

For now I will simply change of topic: Be it resolved that we are both better off maintaining the status quo.

* Lovis Corinth, Vater Franz Heinrich Corinth auf dem Krankenlager

Of Navies and Armies

2012-01-18T19:43:00.000-08:00

"Navy," he said, then a long pause. It was one of his only really coherent words of the day, few of them ever strung together into a meaningful sentence.

"Navy," again.

"Army," then a long thoughtful gaze out the window. The newspaper was spread before him so I peered over to see if there were any clues in the headlines. Maybe the recent cruise ship disaster in the Mediterranean. No. Nothing.

Michael worked as an engineer for Canada's Department of National Defence for most of his career, so topics about the armed forces often came up in our conversations. He has a strong reverence for our men and women in uniform and, until recently, never missed a November 11th Remembrance Day service in all our years together. He had never had any desire to be a military man himself, perhaps after the years of wandering from post to post with his dad in the Canadian airforce. He said once that he had craved stability as a child so, when the family finally settled in the Ottawa area more than four decades ago, Michael had no desire to go elsewhere. Deep roots were made.

I listened quietly, not making any attempt to prompt him or question what he was trying to say. I remained uncharacteristically silent.

"More seamen," he added minutes later, continuing his pensive and somewhat sad stare out into the snowy front yard. He seemed far away but his eyes looked intelligent, not dazed and glazed as they often are. Clearly he had something important on his mind.

If only he could express what is locked away inside. I haven't had a real conversation with my husband in a very long time, years, in fact. I miss him.

* Landing of Spanish troops in the Bay of Mos, the island of Terceira, Azores (26 and 27 July 1583). Mural Site at El Real de San Lorenzo de El Escorial, Madrid, Spain.

From Out of the Blue

2012-01-13T18:17:00.000-08:00

Michael already in bed, I was relaxing with my kids on Boxing Day after a hectic Christmas. Your email came out of the blue even though a few weeks earlier I had remembered that you might be in Ottawa over the holidays. But with all the craziness of the season, I'd forgotten, put it out of my mind.

As I read it I couldn't help but smile; my daughters picked up on it. I gave a mild response about an old friend in town with his wife. That night both you and she inhabited the blue, ethereal screen of my subconscious, a mildly anxious, crazy romp with a library as the backdrop - maybe one of the few I worked in during my short life as a librarian - and Kenny Wayne Shepherd or the Black Keys, or maybe both, as the improbable musical overlay.

Back and forth we wrote the next day, setting up the coffee meeting for that afternoon. I was on my way into town to drop off Anna at the airport. Serendipity. How about then, on my way back? So it was set up, as easily as that, with Emily at home to look after Dad, companionably watching a hockey game.

I was so nervous. Why? I don't know. What does it matter? We had met nearly forty years ago at school, were good buddies, and I hadn't seen you in well over thirty, possibly won't ever again. As I drove to the airport I didn't think about it much; I was involved in conversation with my daughter who was on her way home, to be terribly missed here at our home, as would her siblings. But once she was on her way and I was making my way back into town to our meeting, my stomach was tight with anxiety. Would you be alone or would your partner be there too? Would conversation flow after all these years? We'd only reconnected recently and hardly know each other now.

I parked the car just as you were texting me, warning me about turning restrictions in the area. You forget that I've lived here a long time but I appreciated your concern. At least I already know you are there before me. I'd hate to have been there first, waiting alone, cradling nervousness.

I see you before you see me. You look just the same, easy to identify after decades. And there is your wife. I think I am relieved. You are looking around, not yet seeing me. I think - I imagine - you look anxious too.

I wave just in case I am unrecognizable after years of childbearing and caregiving. You see me. An affectionate hug. A handshake with your wife. I make sure to make eye contact with her and keep the conversation light and equally balanced, not wanting to cause discomfort. Some awkwardness but not too bad. For a few seconds at the beginning I feel thrown back to those waning days of adolescence; I want to jump on you with childlike abandon, punch your arm, pinch your cheeks, but then conversation turns to Michael and I am again too much the adult. I can be uncomfortable talking about all that unless it is someone I know very well. I prefer to write about it, let people read rather than listen. The oral story seems more of an imposition than the written version. I have to see and take responsibility for the horror and sympathy breaking onto people's faces as they grasp the enormity of this saga, "scary stuff" as you described it.

An hour later, it seems time to wrap it up. Both women look at our watches nearly simultaneously. I could spend hours talking to you both without the constant reminder of Michael's needs before me, but we are grownups with commitments and it is time to leave. Home beckons. It is a warm good-bye with both of you; your wife is lovely and I am glad you are happily settled. Is it a forever-farewell?

The drive home, the whole unlikely encounter, is something of a dream, an interlude in my life, soon to be absorbed into the day-to-day grind, perhaps to disappear into the depths of the subconscious where all dreams go. A few details will remain, a vague impression of a happy sojourn.

Yet I sob all the way back. Lost and found friendship, only to be lost again? Vanished youth? Sadness over my return to a house emptying of family, leaving me essentially alone? Maybe, but I think it is more my overwhelming desire for a normal life, whatever that is, to be able to lightly agree to a coffee date without days of planning, to interact with new, interesting people and hear about their lives without an eye and an ear on Michael all the while. That and my usual undercurrent of sorrow and grief that only wells up when triggered by other emotions.

I arrive home, snap back into the here and now, and I'm fine again. Life continues.

(Painting by Pierre-Auguste Renoir, Sunset at Sea)

Technological Breakthrough

2012-01-09T05:07:00.000-08:00

The photograph above represents a major technological breakthrough for me. Something of a Luddite, I have focused simply on the written word, too nervous to attempt anything more exciting. When I recently syndicated with a website to promote my blog, the editor urged me to add illustrations to my words. Frankly, despite the fact that I was incapable of doing so, I really didn't see the need for anything more than the printed word. That was enough for my challenged brain.

But this photo is a favourite and I want to share it. My good friend Anne and her two kids, now all grown up, have spent Christmas with us for many years since her husband, their daddy, died suddenly in 1995 when the children were very young. They are family. Every year Anne takes a family photo, this year being no exception. Actually it was her son Jesse (bearded, in grey shirt at the front) who set it up this year by perching the camera on our staircase then bolting back into the photo in time for the shot. He is the reason we are all beaming so broadly since seconds earlier we had all been screaming and laughing loudly, cheering him back into the scene during his mad dash.

Jesse's beautiful sister Lily sits to his right, holding his arm. Anne, dressed in a red cardigan and as close to me as a sister, even sharing her name, sits next to me. I am in the back wearing purple. Darren, soon to marry Anna, sits to the left in the dark sweater with a sisterly arm draped over him. My four children: Emily in the back; Laura in the middle in front of Anne; and right in front of me, William and Anna glued together as they always were when she was ten and he an infant.

There is my brother with his wife who join us for Christmas when they can. They are seated to the right of the photo, Linda in front of Peter. Of my immediate family of birth, Peter is my only surviving family member after our father, mother, sister and her husband all died over the past eight years (though if you look very closely you might see they are with us in photographic presence on the shelf above). He has been my rock as his name suggests.

Missing and missed are Michael's family, celebrating a quieter Christmas together elsewhere; our son's fiancee Rhian, traveling with her family; and Laura's boyfriend, another Mike, yet to be introduced to her siblings. And, of course, two exhausted old dogs who spent their day trying very hard to be well behaved around the mischievous teasing of our son's visiting kitten.

Then there is Michael, seated to my left, my arm hovering protectively around him. My handsome man who has to work so very hard now to produce that smile, the smile that used to be so warm and quick, now reduced either to a leering contortion while in the throes of dyskinesia, or a rigid, blank mask when the medication fails which is most of the time.

It was a rough day for him with all the people, all the noise, but he made it through despite a few difficult and frightening episodes before Christmas. I was so busy I don't even remember if he had to retreat for a nap; the kids take on much of the Dad-care on Christmas day.

It was a day of animated conversation and wild, physically interactive video games that saw most of us leaping about in the same space that we occupy in this photo, a very welcome and lively interlude for me, so completely different from our normal day-to-day existence. It was a wonderful day, immortalized in this photo. And I can share it with you because I finally had the courage to figure out how to do so.

Ringing in the New Year

2012-01-01T06:20:00.000-08:00

Three a.m. I am awoken from a deep untroubled sleep, a sleep that until recently was a rarity. I was about to make a world-changing speech, on what I cannot remember, but the dream was probably inspired by Johnny Depp in the movie "The Libertine", a 17th century period piece where he plays John Wilmot, Earl of Rochester, who both saves (with a brilliant political speech) and threatens to ruin Charles II.

The watching of the movie to bring in the new year was an executive decision on my part. NO MORE HOCKEY. A friend had loaned it to me and it was a good choice. What movie with Johnny Depp isn't a good choice even if, towards the end of this film, his face and body are ravaged with advanced syphilis? He was a libertine after all.

We did not ring in the new year the conventional way by propping open our eyelids until midnight and toasting the occasion. No, a normal boring night for us, but I had a new eReader to look forward to in my room. So with Michael safely tucked away, I indulged in a new book, drifting off to sleep well before midnight.

Then the clanging began. Not the pealing of bells but the din of metal on metal, Michael's whistle hitting the metal bed frame, an overly efficient means of summoning my help.

I dragged myself downstairs to see to his needs which at first seemed unclear. He was rubbing his abdomen and then was able finally to tell me he needed to use the toilet. There was no way I was going to be able to get him into the washroom safely in his by now frozen state so I hoisted him up in bed and readied him for the commode, situated conveniently right next to his bed.

A bit of history: For ten days, Michael suffered a particularly stubborn bout of constipation, spanning the entire week before and well into the week after Christmas. It is often his way when anticipating any change in his routine but this was worse than usual. It was becoming very alarming especially since I had resorted to powerful laxatives and even, in desperation, an enema on Christmas Eve (yes, we have unique ways of celebrating the holidays in our house), all to no avail. I was putting off calling the nurse to come and administer the garden hose of enemas. No exaggeration. Well, maybe a little. I'd wait till after all the kids had left, as much for his own privacy as respect for their sensibilities. Besides, despite the slow down, he continued to eat. In fact he packed away a pretty impressive amount of food on Christmas day, all without any discernible discomfort. I was marvelling that all the measures I had taken were so ineffective.

Or so I thought. Apparently his body was just waiting for an opportune moment of quiet, which is a very rare commodity in our house over the holidays. One afternoon, when only the two of us and the two sympathetic dogs were at home - Wednesday, I think - the action began. I can tell you over the days between Wednesday and last night, he more than made up for ten days of inactivity.

But apparently not completely. Three a.m New Year's day was the Mother Load. Once I woke up enough to take in the whole situation, I couldn't stop laughing. Nor could he, despite his discomfort and Parkinson's rigidity. What else can you do at three in the morning when faced with a very large offering of human waste?

I'm taking this as an auspicious sign for 2012, an emptying out of the bad of 2011. A bit like rain on your wedding day, is how I'm looking at it, but a tradition I'm not wanting to become established.

Happy New Year. May you all begin 2012 as cleanly as Michael. Out with the old; make room for the new. Clean slate. Tabula rasa. Empty vessel.

The Bed

2011-12-30T07:53:00.000-08:00

Christmas Eve saw the arrival of the last returning child, my daughter from Thunder Bay. She and I were waiting for luggage at the turnstile, chatting happily, when I felt two hands on my shoulders. There stood Anna's fiance whom I immediately wrapped in a warm hug. A wonderful surprise but not entirely unexpected. I have learned to listen to what is not said by my children over the years and have thus solved and predicted all kinds of things about their lives. Something about being a mother, I suppose.

With the house and three beds already full with the other three adult children who had drifted in the night before, leaving only the smallest bed in the smallest room for the fourth, I quickly had to rethink the sleeping arrangements. My bed is queen-sized compared to the slightly-larger-than-a-twin bed in the room next door. I would vacate my bed for them and move into the small guest room.

This bed is a little gem and has been with us all our married lives. It dates back, in fact, long before Michael even met me. He shared a life with a woman for six years before that relationship disintegrated a year or so before meeting me. Their first bed had been a slab of foam on the floor. In an effort to improve their lot, Michael built a frame for this irregularly sized slab which happened to be smaller than a double but bigger than a twin, what I call a three-quarter-sized bed.

This frame is cleverly constructed and can be completely dismantled for easy moving. It consists of four two-inch thick planks of darkly stained pine, shaped and dovetailed to fit snugly together to form the outer frame. To form the infrastructure, Michael used three much thinner planks of pine, one going the length of the bed down the centre and two shorter ones spanning the width, all three dovetailing together to form the interior framework of six compartments that provide useful storage space. Then over top of these compartments there are three sheets of plywood, with finger holes bored into each for easy removal, providing the support for the mattress. Not a single piece of metal was used; it is all wooden dowel and dovetail construction.

When I first met Michael he was living as a bachelor in a cute little one-bedroom apartment, almost all the furniture therein he had constructed himself. The living room was furnished with simple but effective deep chairs, two of which were lashed together to form a couch, simple, attractive furniture that we kept for many years. In his very tiny kitchen he had built a tall table out of a butcher block to increase his counter space. It still graces our kitchen to this day. Then, of course, in the bedroom was this bed, but by then Michael had replaced the old slab of foam with a new, custom-made mattress when he resumed his bachelor life. His style was decidedly masculine but warm and I remember being so impressed with the calm, clean order of his home. It was a powerful aphrodisiac added to all his other charms, of course.

This bed became our bed. For two thin people who slept wrapped around each other, it was plenty large enough. Two children were conceived in that bed. But as the babies came and were tucked in between us to be nursed through infancy, our needs changed and we replaced the bed with a full double futon that, for the first few months until my dad could construct us a frame, lay on the floor. The Bed was moved down the hall for the now three-year-old first born who had made room for her newborn sister by vacating the nursery and moving into the other bedroom with this, in her eyes, huge bed.

Over the years that bed was inhabited by every one of our four children. It had a life in every single bedroom of this house and of our previous home. It was used by guests and even my mother who, deeply affected by dementia, needed to spend a few weeks with us when my dad was so ill in hospital just months before he died. It was the moveable bed, easily dismantled and reassembled by one person. When our third child Laura left for university in Montreal, it was the bed that got easily packed into the van with her meagre possessions and moved down the highway to another city.

When Laura graduated and was moving her things back home before setting off overseas, the bed returned with her but by now the over thirty-year-old foam mattress had to be abandoned. It did not make the trip, just the frame which got moved into our basement to collect dust, patiently awaiting its next call to duty.

Finally, as Laura prepared to leave home again, this time permanently for Montreal, she had a choice of beds to take with her. The Bed was rejected for a newer, characterless double, but it was happy to find its way up the stairs from the basement into the guest bedroom vacated by the favoured one.

And there it remained, now with a brand new custom-made mattress, retired to guest duty. So on Saturday afternoon with the arrival of not one but two more visitors, I decided I would offer them my big bed and I would move into the guest room.

This was the first time I had slept in that bed for a very long time, not including the many times I had nursed a sick kid through sleepless nights in it. And I had a revelation. Since Michael had come home from the hospital two years ago and could no longer sleep in the big queen-sized bed upstairs, he has been sleeping in the specially-made room on the ground floor in a hospital bed. Having had to sleep separately from him for a few years before this event (sleeping next to Michael at that time of severe and unmedicated sleep problems was like being next to a restless, troubled dragon who would lash out at me violently in his sleep), I decided to reclaim the master bedroom as my own. My son repainted it for me and I created an uncluttered sanctuary for myself. I was delighted to take over the large memory foam bed, believing it would solve my sleeping problems. And it did, somewhat, but lately, whether it's because the aging memory foam is losing its integrity or that my arthritis and menopausal symptoms are acting up, I have been less than comfortable in this bed. But when I climbed into The Bed for that first night on Christmas Eve, I slept better than I have in months.

Except for a sleepless night of worry over my son on an overnight drive back to Toronto - a night of anxious phone calls from him as he dealt with a minor accident, a troubled night that saw Anna and me huddled together in The Comforting Bed (almost everyone else slept through it) - the trend of good sleep continued and has improved significantly. I had also recently started a herbal supplement for the hot-flash invasion, which could also be credited with the sleep improvement, but The Bed seemed to allow me to lie on my side comfortably for the first time in many months.

When the house started to empty out, I didn't want to give up The Bed so I had the remaining visitors help me with a move yesterday and now The Bed is in my room. My sleep has been transformed.

It occurred to me as I lay awake this morning, feeling more refreshed than I have in months, that The Bed is Michael's history and our shared history. It was his bed with his first partner, it was our bed, it was our children's bed, it even left home and returned with a child, a well-travelled bed. It was our marriage bed, the bed that comforted my mother through an anguished time, the bed in which each child was nursed and nurtured, a bed for many well-loved guests. It is now my bed.

I feel as though I have come full circle back to The Bed, that something new has begun. Other beds have come and gone through our life together but none so full of rich, happy memories. Perhaps it is those memories of the shared history that are responsible for the improved sleep. I don't know. It could just be a well-constructed new mattress that has nothing to do with The Bed at all. But a dear old friend said to me the other day, his last words to me as we came to the end of our visit, that I would soon be facing transformation in my life. I think the transformation is beginning, at least in my soul, but it is deeply rooted in the history of The Bed. Wherever life and Parkinson's Disease take us now, I will have The Bed as my anchor and my eternal attachment to the memory of Michael, his gift to me.

The Anarchist

2011-12-22T06:21:00.000-08:00

Keeping order in a life dictated by an anarchist is challenging. The anarchist does not respect that quiet order I have tried to maintain. The anarchist removes appetite and interferes with meals. The anarchist flaunts wakefulness through sleepless nights. It lies hidden, stealthily awaiting a moment to attack. Lately the anarchist has been getting the upper hand.

Mealtime has been sacrosanct through my life as a mother and now as a caregiver. It was all through my childhood too, a time to connect with family after a busy day, to discuss, or more often argue, about life. I have carefully provided three sit-down meals a day for Michael who until this past year has been a keen food enthusiast even if meals are silent except for the strange noises he now makes while he eats. The routine seemed important if only to suggest I might have some control over this anarchistic disease.

But lately that routine has disintegrated, breakfast being the only meal I can count on him eating fully. I am losing interest too, often grabbing leftovers for myself when I'm hungry, tired and frustrated over the the years of silent meals. Most days I'd rather eat and read or do puzzles alone while Michael languishes in front of the television. He is losing interest in food so I break my rule and ply him with tempting foods while he gazes fixedly at the screen. Sometimes it works though I have to leave the room because the inevitable mess makes me crazy.

Communication has disintegrated even more over the past few days. On Monday night right after his evening medication, I was suddenly aware as I leaned against him watching television that there was something wrong. He was rigid and anxious. Thinking it was simply the anxiety that often accompanies the "off" time of his medication, that usually passes within an hour, I dismissed it, calmly assuring him he was okay. But he tried to articulate something to me and couldn't. I, in turn, painfully and unsuccessfully attempted to elicit a simple yes or no response to specific questions: Is there pain? Is there numbness? Do you need to go to the bathroom? Can you walk? Do you have a headache? Can you see clearly?

I took his blood pressure and it was very high. He was flushed and a bit sweaty. Thinking he might be having a small stroke (he's had one before), I focused on whether he could move both sides of his body. Apart from the normal Parkinson's rigidity he seemed balanced in the little movement he could manage at that moment. I continued to ask questions which he either could not answer or the responses were vague and inarticulate. He started uttering seemingly random single words, then touching each knee, counting "one, two". He touched his nose, then reached out to me. He knew my name but had difficulty naming his children. He was most certainly troubled. At one point he touched and identified his leg. I wondered if there was undue weakness or numbness or pain in the limb, but he couldn't tell me.

Early in the episode, my friend called for a chat. I told her I'd call her back and when I did, she offered to come over. Such a comfort. Michael was now lying down on the couch, very weak and looking more anxious. I had already given him a dose of anti-anxiety medication. At one point he started to shake.

What could it be? A urinary tract infection? Probably not - nothing like the last time which was marked by hyperactivity and deep psychosis, and there didn't seem to be any pain or fever. Was this just a stranger than usual low medication response? Or could it be a reaction to the rather stubborn constipation or mild cold symptoms that manifested this week? Maybe I rattled him by unwisely confessing earlier in the day that I might be reaching the end of my rope (I do that about once every six months and always regret it).

Then all of a sudden, two hours after the Parkinson's meds had been administered and this alarming spell had commenced, he started walking around, apparently okay. My friend went home and the evening continued as it usually does.

I had had a strong sense of dread that this was it, Michael was dying, even though the symptoms were so vague. I knew that a trip to the hospital would be not only useless but also dangerous with all the attendant panic-inducing procedures and general emergency room mayhem. It would have been a futile exercise causing more harm than good, as has been the case in the past. Better that he remain calm and comfortable at home. While my friend was here, I started to cry so I left Michael's side to distract myself in the kitchen cleaning up, my usual technique to keep panic at bay. My friend sat at Michael's side chanting a calming prayer with him.

I spent a fairly vigilant though oddly calm night listening for what I had convinced myself were Michael's last breaths. In fact, on waking in the early hours after a very tender dream about him, and not hearing his heavy breathing, I knew he was gone. I calmly got dressed and ready for the day, putting off the inevitable. Then I heard him clear his throat through the monitor. Awake and normal.

Well, not quite normal. His blood pressure was still dangerously high. All that day his communication was worse, muddled, and has since continued to be so at times. Tonight I offered him a breakfast supper, since he has been even more disorganized about his eating. Or maybe I have been.

"What would you like to eat?"

"Cereal."

"What kind?"

"Corn Flakes."

"We don't have Corn Flakes. We only have the usual stuff, Cheerios and Raisin Bran. Which do you want?"

"Frosted Flakes."

The conversation went on like this for longer than I could stand and we finally agreed upon Raisin Bran after much coaxing in that direction on my part.

I am on high alert because the anarchist has gained ascendancy, even though Michael's blood pressure has stabilized and everything is seemingly normal, normal at least for a war zone expecting sniper attack at any moment. With Christmas approaching and an anticipated houseful of family, I work to ready the house. In reality I need the order this activity provides to banish the anarchist to the far reaches of the house, to still its insidious undermining of my frantic efforts to maintain calm and normalcy.

Sleepless in Chelsea

2011-12-14T06:29:00.000-08:00

Insomnia. The bane of my existence. I am not a chronic sufferer but have had serious long-term bouts of it throughout my life. Of course, four infants contributed to the problem. I used to find it odd that a baby, or sometimes more than one child at a time, would waken me many times through the night, leaving me wide-eyed and sleepless rather than comatose. But then during the day, my battle would be to stay awake.

Lately the problem, I believe, is hormonal. My sleep cycle is interrupted several times through the night so my body can turn on its sprinkler system. The hot flash. I wish it were as sexy as it sounds. I wake up, check the clock and think,"This must be the 1 a.m. (or 3 a.m. or 5 a.m.) flash,", then wait for it. Moments later it's like the tap has been turned on and every pore in my body springs a leak. Wild kicking of duvet ensues and the body is instantly soaked. I have to be careful not to fall back to sleep (even if I could) because our house is very cold at night and as soon as the waterworks are over, evaporative cooling kicks in and I freeze. Very efficient cooling system if that's what you are looking for.

I know all the explanations for this phenomenon but I don't see the purpose in it. I have great faith that the body knows what it's doing most of the time, and since most menopausal women suffer with this problem - many seek hormone replacement therapy - there must be a grand scheme at play here other than just a big fat cosmic joke at our expense. You can always tell the menopausal women in a crowd. They're the ones repeatedly flinging off clothes only to bundle back up moments later. The desire to leap naked into a snow bank can be overwhelming. I have to say that in our fairly cool house, it is a welcome problem at times. I'll be sitting knitting in front of the television feeling a bit chilled, then remember that I'm due for a heat wave which takes care of the problem for a while. But then the chill usually returns.

Back to sleeplessness. I'm awake sometimes for long periods of time now because by the third or fourth wake-up my body wants to get up for the day. And I've tried that too but it means I'm a wreck by about ten a.m. I have podcasts and audiobooks to listen to that sometimes lull me back to sleep. If it were true that one can learn things through sleeping osmosis, I'd be one of the most informed people on the planet, but alas, I am not. With that system not working these days, I bought a herbal sleep remedy last week and gave it a try, valerian being the main ingredient and recommended by my menopause bible (yes, such a thing exists). It didn't work except to leave me feeling foggy and groggy by the second day. I am reluctant to take anything heavier because I need to be able to wake up in case Michael is in trouble.

Which happened last night. All night I was aware that he wasn't sleeping with the usual depth, if at all. I lay awake at times thinking I should get up and check on him but couldn't quite drag myself out of bed. At 4:31 (I am acutely aware of time through the night) the clanging began. I have devised a system for Michael. He is unable call out in the night so I have tied a metal whistle to the railing of his hospital bed. My intention was that he would blow it if he needed help but he is not capable of that either. Instead he bashes is against the metal bed frame. If I'm not already awake I am sure to be instantly with that noise blasting through the baby monitor. I dread the sound of it but it is extremely effective. Unfortunately last night I had finally dropped off to sleep myself so my reaction time was a bit slow.

When I arrived at his bedside, his eyes were like saucers and ringed with panic. "I haven't slept all night," he was able to whisper, more lucidly than usual. I sat with him for a moment stroking his face then offered him a dose of clonazepam, an anti-anxiety medication that he takes every night before bed and otherwise when needed. He nodded. When I went into the kitchen to get a pill, then over to the dining room table to retrieve his cup with the straw I noticed his bedtime medication sitting there untouched. DRAT (or unprintable words to that effect). In my exhausted state last night and my haste to shuffle him off to bed, I had completely forgotten to give him his medication which contains two heavy sedatives. That explains everything, the poor guy. So at 4:39 a.m. Michael took his bedtime medication and was asleep within ten minutes.

I, on the other hand, pretty much gave up for the night. It is nearly 9:00 a.m. as I write this and he is still happily and heavily sawing logs. I am on my second large mug of a heavily caffeinated beverage.

The Persistence of Memory

2011-12-12T18:08:00.000-08:00

My mother spoke often of disturbing dreams. Over many decades she was plagued with a recurring one involving a house, never the same house but always without doors. In each house, my mother was toiling away at her usual domestic chores, and each one had a different, often confusing layout. She would awaken troubled and anxious but never did she try to interpret these dreams, nor did she see them as significant, though over the years she spoke frequently of them to me.

Mom was a very bright woman who had dreamed of higher education and a profession. But she lived in prewar England that was still deeply mired in sexism; women did not flock to university. We now know that the war changed that somewhat for women as it did for my mother. Though she was unable to pursue a university education, she did secure a significant job in the civil service where she worked throughout the war. Women ably stepped into the jobs vacated by the absent men.

After the war, Mom and Dad married immediately and Mom, as a married woman, was forced to vacate her job presumably for a returned soldier. Besides, the thinking went, women must be happy to return to house and home.

Unfortunately, postwar housekeeping was one of drugdery. Added to that were the privations of rationing, making feeding one's family an enormous challenge. It was partly because of these difficulties and the fact that Dad could not see himself advancing as a teacher in a system that tended to favour who you knew over what you knew, that they left Britain for prosperity in Canada, or so they thought. What ensued were years of struggling in small, backwoods Canadian towns; they were always wondering if they would ever get ahead. They moved many times for many reasons throughout my childhood, settling in one small town after another, some of them extremely deprived. A string of small, cramped, poorly heated homes became my mother's reality. Yet never did I hear her complain about these circumstances. To me it seems obvious, though, that she tried to work out these frustrations and her sense of imprisonment in her graphic house dreams. As much as she tried to ignore these memories and emotions, they insistently reared up in her subconscious.

I have some understanding of my mother's desperate isolation. Yet throughout Michael's escalating symptoms and increased disability, I have strangely felt very much in control over my health, my home and my environment, if not his disease. I have been lucky not to have to worry in the same way Mom and Dad must have over financial security. I'm sure Dad felt equally trapped in what amounted to near-poverty as a school principal, so poorly paid was he for our first nine years in this country. Relative affluence did visit them finally when they moved to coastal British Columbia, and yet the irony is that this small mountain village was the most isolated of any they had lived in before. Boat, seaplane or helicopter were the only ways in and out. Then in winter many, many feet of heavy snow would fall, effectively burying houses and cars. I remember an eight foot wall of snow that faced us as we left our front door. So though my parents had escaped the trap of near-poverty, my mother's sense of physical vulnerability and isolation must have been supreme in this coastal town. Having entered middle age with accompanying health problems, she knew that facing a medical emergency in this small town was a serious problem. With no hospital or doctor in the village to treat serious illness, an anxious, sometimes fatal journey was required by helicopter over the mountains, into the next town.

A few nights ago I had my own house dream. It was this house, my castle, my sanctuary. I was upstairs on the landing, just outside my bedroom when suddenly the interior walls began to melt. No Salvador Dali clocks, just liquefying walls. It was a very brief dream. I awoke extremely anxious and in a cold sweat.

I pondered my subconscious murmurings and was somewhat puzzled at first. Then something happened a few days later that seemed to clarify the dream's meaning to me, revealing my own buried fears.

I have enjoyed very good health which I attribute to good genes, good luck and healthy living. I don't smoke or drink. I exercise a lot, in fact haven't been more fit in my life; I am probably more under- than overweight. I eat well and usually have lots of energy, despite the brain-numbing boredom of my job. I am generally a positive and happy person with lots of good friends. I feel that I handle stress fairly well.

On Friday night I suffered an attack. I immediately knew it was an extreme gastric event, something I haven't experienced in many years, really since an ulcer I suffered as a young woman. But I pride myself on my cast iron stomach now - I rarely have digestive difficulties - so when this violent and painful attack hit, I was concerned. At 55, I am entering that age when women become more susceptible to heart attacks, and though I knew this was not one, I still felt I should pay attention. Women's heart attacks manifest differently, often more vaguely from men's which tend to display the classic signs of crushing chest pain. This was upper abdomen, extending up my chest, into my shoulders and down both arms. I was in agony for about half an hour. I swallowed a glass of water with baking soda dissolved in it, a remembered remedy of my mother. I took my blood pressure and pulse - no significant elevation. I knew what this was. But suddenly I was aware that my complacence might be dangerous given my enormous responsibility to my husband. If something terrible should happen to me, he would be helpless, trapped inside this house. In fact I even asked him halfway through this attack if he knew what to do if I needed help. He stared back at me blankly, picking up the television remote control. It was then that I picked up the phone and called a friend, not yet to get help but just to warn somebody that I might need it soon. As her calming voice came over the phone line, my pain subsided and the now-mounting anxiety lifted; perhaps too the baking soda had taken effect. She offered to call back in half an hour, just to check in. She did and by then I was fine.

Though I was outwardly calm and fairly unconcerned throughout the attack, it was afterwards that I understood how vulnerable Michael is, so completely dependent on me. Visions of a nighttime heart attack or stroke that might kill or seriously disable me haunted me for a couple of days, not for myself but for a husband who in the morning is nearly paralyzed until medication can give him some relief and mobility. Using a telephone is out of the question for him. I am not sure if there is anything more we can or need to do to protect ourselves; I have many who check in routinely and I will continue to be vigilant about my own health.

But I think my dream signalled that my own interior landscape is changing and I may not be able to take my good health for granted. Our bodies usually have a memory and a knowledge that the conscious mind does not; it gives us signals if only we listen carefully.

Proud Daddy

2011-12-06T05:35:00.000-08:00

Michael has always had a chest-swelling pride for his children though he was quiet about it, never boastful. There at the birth of each, tightly gripping my hand and shedding tears, he has been a committed and deeply involved father, a comfortable dad. We met when Michael was 31 and I was 23, had a short courtship before marriage, then launched into producing a family immediately, not able to take the time for the travel we'd both agreed upon. Apparently we were destined for another kind of adventure together.

Michael stepped easily into his role of father, surprising his doubtful mother who had predicted otherwise. Over the years Michael has paced the floor with cranky babies while Mom had much needed naps. He has played games, watched movies and sung lullabies, albeit questionable ones involving pirates and other illegal activities. He has stood by me with a houseful of sick kids and stroked feverish foreheads at four in the morning, even on a work night, sometimes cleaning up copious amounts of vomit. One night, with a three-year-old croupy child and an unusually panicked mother, it was he who calmly whisked this child off to the hospital while I stayed behind with the others.

He has lovingly painted and restored second-hand two-wheelers then run miles behind a wobbly learner, scooping them up and dusting them off when they crashed to the ground. He has built skating rinks, assembled backyard play structures, and chased escaping toddlers. He coached soccer both officially on the field and casually in the backyard. All our kids learned to throw a mean football and slug a bat. Never one to sit still, on trips to visit now grown-up offspring in the big city, he'd be the first out the door to find a playground or any patch of green to kick a soccer ball, throw a frisbee, a football or a baseball to calm the restless young ones.

On visits with other families to our home, he and the other dad would play a demented form of hide and seek in the dark outside. The squealing children had to hide while Milan and Dad would seek them out, scaring them into a screaming frenzy. More fun was when the kids didn't know where on our acre property the stealthy dads had hidden, only to jump out at them unexpectedly. Sheer terrifying joy.

The kids always loved it if I went away for the day or a weekend, a rare occurrence unfortunately for them. Dad could always be relied upon to supply them with all the junk food I usually denied them. He too was starved for fat, salt and sugar apparently. When he wasn't traveling for work, he was always home for our rowdy family dinners, providing the intelligent discourse I craved. But we were outnumbered by our garrulous children and conversation often disintegrated.

He spent hours sitting through gymnastic lessons, driving to hockey games through nasty snowstorms, and in the summer, soccer games near and far with a carload of boisterous girls. He loved to watch sports of any kind but especially children's games. He read stories and sang songs in a deep sonorous voice that has long since disappeared. He attended concerts and plays, both professional (our singer moved beyond back-seat-of-the-car concerts) and amateur, equally nervous and thrilled for the performing child. He glowed with pride over the one child who more fully than the others attended school and achieved so highly, grabbing all the awards.

Though a gentle and loving father, he had his slightly menacing side. All four knew that if Dad peered at them silently over the top of his glasses, trouble was brewing. If their bad behaviour persisted, he would kick off his Birkenstock sandals to more easily chase a naughty child up the stairs; they knew then it was time to run - fast - and slam the bedroom door or be subjected to Dad's withering admonishment, though I think I was the only one who dished out the occasional corporal punishment. When bedroom doors got slammed too loudly or too often, he never hesitated to remove the offending door, effectively silencing the noisy problem. It was he who had the brilliant suggestion one day to disallow any conversation between two squabbling siblings after a nasty argument. Within hours they were begging to be allowed to talk to each other again.

Lately, with a nearly total shutdown of emotional expression, it is difficult to know how much he takes in about our adult children's busy lives. I tell him everything, of course, but he receives it all mutely and blankly. I have to remind myself to share the news with him since the response is usually minimal or completely absent.

But there was one episode recently that elicited a slight glimmer of emotion. Emily, a fine athlete and keen competitor, arguably the most like him in that department, called one morning weeks ago to report on a tournament she had played in the day before. It was very early and Michael was still in bed. She and I arranged a skype visit so I hoisted him up in the hospital bed and propped the computer on his lap, his medication not yet up to full speed to allow anything more. We were told by this excited young woman that her nearly all-female dodgeball team had wiped the floor with most of the other predominantly male teams, men who had, according to her, arrogantly paraded around the gym in their matching track suits, then angrily stormed out as this team of "girls" in hand-decorated T-shirts knocked them out. I must add that Emily is built the way her father was as a young man; she is thin, wiry and quick, and loves to win, even crows about it loudly, especially when the win is such a sweet one. They had nearly won the entire tournament, coming in second by a close margin, and she was ecstatic. The odds of any kind of victory had been heavily stacked against them. Her joy jumped infectiously off the screen. I was happy for her but Michael barely responded as usual. It was only after I had said goodbye and turned off the computer that I noticed the smallest hint of a smile on my husband's face. He was loving it.

He cannot tell his children he loves them in the same ways he used to with frequent verbalizations and affectionate hugs, but that parental joy is still there, deeply hidden.

The old Michael would have made one heck of a grandad. The new Michael will no doubt silently adore his grandchildren, whenever we are graced with them. Alas, with our vast store of memories of Daddy, we will simply have to imagine what the expression of that love might have been.

Lifelines

2011-12-02T18:20:00.000-08:00

Like many teenage girls, our oldest daughter - all our daughters - earned money through childcare, or babysitting as it was known then. Anna was particularly popular with kids and parents alike because she brought her artistic flair to the job. She has sung like an angel as long as she has spoken and cannot even carry on a conversation without at least humming the punctuation. Those of us less musical in the family had to learn that this girl could engage in coherent conversation AND pay attention to our words while singing. We might have been the only family that had a rule of NO SINGING AT THE TABLE. Anna also had a love for drama, starting, in early adolescence, a small theatre group for local children. These kids met in our basement on Saturday mornings and rehearsed plays they had "written" themselves to be performed as fundraisers later in the season. All was directed by Anna who cleverly managed to bring out the latent talents in these kids. The shows were comedic, sometimes farcical, with a splash of music. Even very young siblings, whose only talent might be an ability to burp on command, were put to work in a comedy sketch. Adults had no involvement in this project, the kids taking care of every single aspect of the production even down to booking a venue and choosing the charity they wanted to support. The oldest in the group was always Director Anna who retired from this project at the ripe old age of 13 or 14.

Others in the community got wind of this talent and occasionally Anna would get a request for something a little different. One such job was to appear at a twelve-year-old girl's birthday party as a fortune-teller and read the palms of a gaggle of girls. Knowing nothing about palmistry, Anna visited the library and immersed herself in the subject, using the rest of us as her guinea pigs. The day of the party she donned a flowing skirt, gypsy scarf and hoop earrings to round out the role. She was so convincing that what was to be only a small aspect of the birthday party became the main event, with girls clamouring to have their fortunes told. Anna was careful to keep her prophesies positive and general.

As her test subjects, we were compliant, though perhaps not her little brother who couldn't sit still for anything at the time. I have no memory of my own fortune, but one person's stood out. This was not long after Michael had been diagnosed in 1994 with Parkinson's disease, and of all the children, Anna, as a young teenager, was old enough to understand something of the challenges ahead with this disease and was terribly afraid for her daddy. Michael's palm was subjected to her scrutiny along with the rest of us. I remember her showing me Daddy's lifeline and telling us, grasping at anything to reassure herself, that his was a particularly long and strong one, that he would enjoy longevity and a vibrant and productive life.

These memories all came flooding back yesterday after returning home from a meeting at the bank. I had arranged the visit because, though I have managed the family's finances for years now, I realized I had never sat down with anyone to look at the global picture, to make sure there will be no nasty surprises if Michael leaves me suddenly in the near future. I came away reassured and confident that our financial lifeline is at least strong and unfrayed. At the meeting, the consultant asked if I had any idea what Michael's life expectancy is, how long his lifeline might be. I admitted that, to the best of my knowledge, he could live a day or a decade; I need to be prepared for both. It was when I relayed this conversation to our caregiver, she reminded me that his lifeline is long and strong; we might be talking years if there's any truth to this practice.

I don't put any stock in palmistry myself. I do believe our hands, indeed our bodies, have much to tell us about our state of being and who we are, but I think if palmistry had any real relevance we'd have solved a lot of life's mysteries by now. I like to look at the lifeline as something more symbolic, perhaps a metaphor for the strength of one's life force, how one faces the challenges in one's life. No one can argue that Michael's own force hasn't been strong and resilient, no matter how long he might live with this devastating disease.

It got me thinking about other lifelines. My mother-in-law uses a service actually called Lifeline. She wears a gadget around her neck that she simply presses if she finds herself in distress in her own home. She is immediately linked to an operator who assesses her situation and sends out the appropriate emergency teams, if necessary. Now that she is back in her own home, it is a critical link for her and allows her, and her anxious family, to have a modicum of confidence and security.

This lifeline of hers uses the technology at hand to keep her connected. I too rely on the wonders of the modern world to lessen my sense of isolation. The computer, the telephone and my cellphone are my only lifelines to the outside world some days, and to some degree the radio and the television, though they lack the interaction I often crave. A very satisfying day is one where some or all of my children have checked in and many friends too. I am blessed to have such strong lifelines of communication with so many.

I believe Michael's link to this world is strengthened by his recent embracing of a spiritual life. Nightly prayers give him solace and, most nights now, allow him a smooth transition into the dream world. When in a state of extreme anxiety, the chanting of a certain prayer is like a life preserver for him. Many a night after I have left him I can hear him muttering the chant through the monitor until I hear the steady breathing indicating sleep. His lifeline to the spiritual world is intact, strengthening day by day.

I peered at my own palm this morning. I know nothing of palmistry but was musing about what mine might tell me. My lifeline is strong and long but there is another line that merges with it and becomes one with my own. I like to think of it as Michael's blending with mine, our journey in this world inextricably linked.

In Praise of Older Men

2011-11-29T11:37:00.000-08:00

Women have always been my strength. I don't know how I would have survived any of life's challenges without my female friends and relatives. Over the years of raising children, homeschooling, and now caring for a sick husband, I have always been able to rely on those faithful females for help. During crises and the birth of babies, casseroles would appear on my doorstep, impromptu babysitting would be offered if I got sick, and general moral support could always be counted on over the phone or in person. Nothing has changed over the years except that those many, rich friendships have deepened and new ones have been added. I hope I have been equally supportive.

But the group that has surprised me is a different one, one that was essentially absent during those busy childcare years. They were involved in their own families and working hard to support them. You'd see them coaching your kid's soccer or hockey team but otherwise they were invisible to me, so busy was I in our own family affairs.

Growing up I hardly knew my brother. Older by ten years than I, he left home when I was only seven. Dad was a busy teacher and principal and always involved in community work. He was a kind but rather aloof and undemonstrative father whom I came to know and love much more deeply as I grew into a parent myself and was able to see him interact warmly with my own children. The same can be said of my brother. On top of the little contact I had with the most significant men in my life during those formative years, a time when my teachers were mostly female (except for Dad for three years in what was a purely student-teacher relationship), I then attended an all-girl high school where I boarded ten months of the year. In my work, I've always stood beside women, not men. Then in the world of romance there were few boyfriends, my interaction with boys limited and shy.

So, apart from my very warm relationship with Michael and now my son and my brother, I have been close to very few men in my life. Yet among the biggest delights for me over the past two years of Michael's intensive care are the friendly relationships that have developed with a number of kind men in our community. These fellows were friends of Michael during his sports days or they are the husbands of some of my female friends. Some are men in the neighbourhood, who, moved by Michael's plight, have simply stepped forward to help us out whenever they can on weekends. Most still work; some are retired.

These men arrive on our doorstep, sometimes toting batches of cookies baked by their wives or, in the case of one fellow, frozen delicacies culled from his five-star restaurant supply of gourmet food. Mostly they sit and keep quiet company with Michael while I dash out and walk my dogs, grab some groceries or spend the weekend working at the Nearly New Shop once a month. Some are old soccer buddies so if there is a game on the tube, the two of them sit in companionable silence. Others are not sports fans but keep company nonetheless, making tea and chatting to my mute husband who, I'm sure, welcomes the change of face. Occasionally one will help me with a household problem, adding expertise where I have none. One of them, last weekend, fed Michael his lunch then cleaned up my kitchen afterwards, a gold star moment.

What is most pleasing is that these fine fellows rarely seem to be in a rush and almost always stay for a time after I get home, allowing me to get to know them better. With sock-feet up on the coffee table, the television muted in the background and Michael listening in or snoozing on the couch, we cover a lot of topics from family news, community issues, health, political, financial and social topics - our reach is broad. I am grateful to these comfortable men who drop into my solitary space, adding to my world the male voice that has otherwise disappeared.

I still count on the women in my life, and that will never change, but I now have this gang of guys as backup too, people I might otherwise not have had the opportunity to get to know.

Sometimes there is great bounty in the challenge that is Parkinson's disease.

Football Fever

2011-11-27T18:56:00.000-08:00

Football Fever has descended upon our household; it is Grey Cup day, the final game of the Canadian football league and a much anticipated time of the year for many football fans. I am immune to this particular illness but must tip-toe around the afflicted one so he can watch with undivided attention.

It is a good sign that Michael has listened well enough to the endless television pre-game coverage to know that today was THE day. It was unavoidable, I guess, given how many hours a day the television is tuned to a sports channel. But I had hoped that he might not notice, that I could slyly divert his attention to something else like a movie or a crappy television show. No such luck.

Normally I can tune it out and immerse myself in my knitting. I have created quite a mountain of knitted works this fall - that's how much time I have on my hands - but tonight neither my brain nor my hands seem to want to work. A piece I was working on had to be ripped out repeatedly to the point that I snarled up the yarn badly enough and had to break it off, essentially ruining the piece. I threw it down in disgust and impatience, abandoning it completely. To top it off, one of my slender bamboo double-pointed needles snapped, crippling my progress. All the while, the players' atavistic chest-thumping and the crowd's rowdy cheers blaring from the television sharpened my edgy nerves. My eyes burned from the concentration on my fine stitches; I've given up.

It is rare for me to abandon a project. I hate to do it. The last time I did it was the shawl I started on our ill-fated train trip out west to see my sister and her husband, both very sick at the time - the trip that had to be abandoned suddenly for a hasty return home. It was just a few weeks ago that I picked up that piece again and reworked it into something else, closing the door on that dreadful escapade once and for all.

I am hoping that all I need to do is walk away for a while, divert my brain elsewhere. I know I'll probably be able to pick up my knitting again tomorrow, start fresh on a brand new project. But my restlessness tonight is disturbing, preventing focus. I can feel mild anxiety creeping in as the weather worsens and winter hearkens. If I fail to get this gnawing feeling under control, it will be a very long winter.

Room with a View (or at least a crystal ball) - apologies to E.M. Forster

2011-11-20T07:23:00.000-08:00

I stepped outside this morning to retrieve the daily newspaper from the box at the end of our driveway. Sometimes, on days without respite and therefore no opportunity for a walk with the dogs, this is my only foray outdoors, especially if the weather is lousy and Michael is particularly immobile, unable to even poke his head outside. On those days I hunker down and watch movies, knit, and nap between the various household tasks that must be done everyday, boring things like meals, dishes, laundry and, of course, whatever Michael's many needs might be beyond those basic domestic tasks. On those days sometimes the only utterance from Michael is to mimic the yawns, whines and other chirps emanating from the two dogs.

This Sunday morning feels like it could morph into one of those sluggish days. The sky has an ominous hue of dark grey to the west, the wind is murmuring, hinting at pent up rage, and the air feels oddly heavy and summery despite the cooler temperature, almost as if a thunderstorm looms. It is an appropriate measure of my mood, that I could have a meltdown but I'm just too tired to do so, preferring the prospect of wrapping myself up and retreating from the world, if only I could step away from the essential tasks at hand.

Michael's 87-year-old mom went home yesterday. I bowed out of that task, insisting to her that other family members accompany her home, fill her fridge and make sure she was comfortably settled. She phoned as usual this morning to report her immense relief. She sounded happy. Fingers crossed. But I could feel my energy suddenly draining out of me, perhaps from my own relief of being able to stand down for a while. It has been an intensive three months, culminating in sleeplessness and high emotions this week as we all faced this next step of her life - her desire to resume "normal" activities. All have agreed to step back and let things unfold, however that may be. More fervent crossing of fingers.

That aside, though murmuring like the wind in the background, I can take stock of my reserves. If only I could see into the future and know how much more energy I need for this job. Not that I want it to be over - though I have to confess there are days when I wish it were so - but it would be nice to have a crystal ball to plan and prepare for what I can only imagine will be a difficult time ahead. Will I be able to see this through to the ideal end of Michael spending his final days or years comfortably at home? Will I have to muster up the strength and courage to hand him over to others to care for him? That is a prospect I dread, especially as I have had the opportunity to watch a cousin attend to her frail, anxious husband in the same retirement home where Norma convalesced. This woman, who makes daily visits and stays overnight on weekends, looks worn out, stressed out. The placement of loved ones into institutional care doesn't necessarily lessen the load, I've learned. And it can most certainly add to the guilt that all caregivers seem to carry.

Obviously, I cannot map out the future. Can anyone? I have a few big hints how this story will end but I can't cheat and flip to the last page, something I admit to doing when I read a book where it becomes too difficult to go forward without assurances of the end results. I just have to continue to plod through what is becoming a story of epic length and hope that the stormy plot twists aren't too dark and ominous.

The Walk

2011-11-18T18:09:00.000-08:00

It is a route I have taken hundreds, no thousands, of times. In the early days of puppy ownership, I made the trek twice a day to wear out an exuberant collie-shepherd mix hound whose boundless energy wreaked havoc on our home if I didn't. Then, in 2004, my sister fell very ill with the cancer that eventually took her last spring. Michael was not yet completely disabled with his disease, but, in the event of my presence being required by my sister's side in British Columbia, I knew he would not be capable of the required twice-daily dog walks. It was then that I invested in the underground fencing system that allowed the dogs complete freedom within our acre property, charging around after the many squirrels in our yard and barking joyously at passers-by, eliminating the need for those walks.

But I came to love them. I no longer needed to go for the dogs' sakes, but every morning, before Michael arose from bed, I would slip out for up to an hour and immerse myself in the calm and solitude of the nearby forest, Woof and Calvin at my side. It became my very necessary escape from the mounting caregiving duties - Michael was already on permanent leave from work, no longer able to meet his own workplace duties.

Most mornings I briskly covered the two or more kilometres. During the summer I indulged in a dawn swim in the river, a true escape, all completely alone. It was the time for the introspection and meditation necessary for me to remain stable throughout the day.

The past two years, with Michael needing constant care, I can only embark on my walk when my caregiver is present or, if it's the weekend, a generous friend who has volunteered to drop in and watch sports in silence with Michael if no offspring are home for a visit. That means, most weeks, I average about four walks, maybe five. It is a priority. Every Monday morning, if there are no other duties for me to attend to, my best friend joins me and we solve the world's and our families' problems together, accompanied by the calm of the natural setting she too loves. It provides the backdrop to my connection to God and peace.

So this week, with my heart heavy, it was the one time of the day when I could escape my extreme anxiety and distress. I am not good at expressing my emotions orally; I always resort to the written word. On writing my last entry, I was venting overwhelming frustration, knowing full well that the involved parties would read my diatribe. It ate me up; it caused terrible unrest in the family, perhaps permanent damage, and I have since deleted the post. I apologize to my readers, as I have done to the offended parties, for any discomfort I caused. It is not usually my way.

But thank God for the few moments of peace my walk afforded me.

Wealth and Poverty

2011-11-02T05:53:00.000-07:00

I spent last weekend at my favourite place. Thanks to a few volunteers and my usual caregiver, who held down Fort Michael for me, I was able to help out at the monthly sale of the Chelsea Nearly New Shop, housed in the basement of the local United Church, an old, slightly rundown but well-loved, well-used little church.

It so happens that this church, and therefore the shop itself, is right across the road from my house. It couldn't be closer, a mere minute from my doorstep. If it were otherwise, I most likely wouldn't be as involved as I have been. Our house is well-situated in our little village with a full grocery store and hardware store only a few steps farther than the church, or even closer if you dare cross the ditch over the now-rickety bridge that my son built many years ago. The proximity of these amenities means that I can complete the week's grocery shopping in less than half an hour with no travel time and, better yet, on foot with no gas consumption required. The hardware store is my preferred location to pick up furnace filters, plumbing materials and gardening supplies. I find myself increasingly overwhelmed in the big box stores like Canadian Tire, which I reluctantly have to visit on rare occasions if my little stores next door cannot help me. The closeness of these places gives me comfort and a sense of security, requiring little reliance on the car despite our distance from the city.

I have been thinking a lot about poverty and consumption lately with all the "Occupy Wall Street (or insert your city's name)" demonstrations. I haven't learned much about them, I must confess, but something about them makes me squirm for reasons I couldn't really identify at first. As I thought about it I realized that my personal style is not that of an "activist" who protests, sits in, camps out and speaks loudly. My preferred statement is made through direct action where words are not really necessary. I realized I don't want to focus on the perceived "evil" rich who will always be among us, most of them honourable citizens who contribute greatly to the economy and the advancement of our civilization through their accomplishments or their support of programmes outside their expertise. I personally have no issues with the rich. But I do have an issue with poverty. Whether the rich can be blamed for the existence of poverty is not for me to answer; I tend to think not. What does seem to be happening is a widening in the gap between rich and poor and that is where I would like to put my energies, trying to narrow that gap somehow. For the record, I do include myself and my husband in the category of the rich even though our annual income falls in the modest mid-range, not the soaring six-plus figures.

To that end of narrowing the gap, which I have no illusions that I can accomplish on my own, I belong to a faith that promotes the equality of all people, all races, all religions. It promotes the narrowing of that gap between rich and poor and embraces all humanity. Also I have recently thought a lot about broadening my charitable donations to include an organization that has international reach, another with a more national reach and finally my hands-on work at the Nearly New which is a decidedly local, grass-roots organization directly assisting those in need in our community both with financial aid and clothing. We too have a broad reach, giving to projects near and far, but our focus is mostly our community and the poor in our midst.

Our sales are wonderful monthly events spanning a Friday evening and four hours midday on Saturday. Our nearly-new merchandise is modestly priced, most things selling for under $4.00 with no tax. On a good weekend, like last weekend, we will make well over $1000.00 but we usually manage to raise at least a grand each sale. That's a lot of stuff when the average price for things is about $2.00. What strikes me at these sales is the diversity of our clientele. Being a small town, we all know each other pretty well and have a good idea of each person's relative wealth or poverty. But this store is not just for the impoverished. It has become "The" place to hang out and find incredible bargains. It is also the place to see all your friends, almost like a local pub except you can walk away with an armload of great "new" clothes rather than just a hangover.

The week before this sale our little community was shaken by tragedy. A couple of local teenagers died in a horrific car accident and then a few days later a little girl lost her life, her mother charged with her murder. We all know each other, at least peripherally. We were all stunned and saddened, especially those of us at the Nearly New who knew the mother and daughter. We are a poorer community for the loss of these young souls.

I was worried that our sale might be a sombre event, all of us grieving deeply for the senseless losses added to our own individual troubles. But I was amazed. It was, of course, bittersweet, people quietly, tearfully and respectfully reminiscing, but it was also a nearly joyous event, our hearts so heavy but reaching out in appreciation of each other.

It is a place where we can put aside our sadness and our troubles and be a community, laughing and crying together. It is a place to feel wealthy in our relationships while we directly contribute to assisting those less fortunate; with our overhead costs at nearly zero, every dollar spent is a dollar to someone in need. It is a place where I can step away from my role and isolation as caregiver for a while and feel connected to the world.

Puzzled

2011-10-22T14:13:00.000-07:00

I am addicted to puzzles. They are probably the only reason I continue to subscribe to the local city newspaper because I prefer to do them pen in hand, unlike my writing process where the computer screen suits me better. I'm not sure I'll ever make the jump to doing most of my reading online either since something strange starts to happen to my eyes and the screen not long after I start reading.

My morning ritual is to hop out of bed early, feed the dogs, fetch the paper from the end of the long driveway (no doorstep delivery in the country), check in on Michael (this is usually long before he needs his 8:00 am dose of medication), check my email and facebook, put the kettle on for tea, then scan the paper. I read an op-ed article or two but most of the news stories are old by the time my hands touch newsprint, news I've already heard on the CBC morning radio show. What I really want are the puzzles - all the puzzles. I attack them like a junkie on speed. My focus is complete and if I'm lucky enough, I have time to do them all before I have to clean, dress and feed Michael for the morning. There is nothing quite so delicious as a steaming mug of tea, a quiet house and the paper spread out all over the dining room table.

I start with the Ken Ken puzzle, mysteriously hidden away all by itself in the sports section. It's a variation of Sudoku, but usually a quick study, with wild claims to "make you smarter". I ignore the basic puzzle on offer and go straight for the advanced. I can usually, on a good morning, polish that one off in about three minutes. Then it's on to the full puzzle page where I start with the word jumble, generally pretty easy unless it's the Sunday paper. Following that I hit the cyberquote which is a coded quotation of a few lines by a noted Canadian. I've been doing those since I was ten when I used to dream about being a code cracker in some covert spy mission. I had a wild imagination, what can I say? Then there's the Sudoku which starts out really easy on Monday, hardly worth the effort unless I'm really bored, but works up to the killer by Sunday, the day most people have a bit of time to waste on such indulgences. I could use the challenge every day, I'm afraid, since I have nothing but time. Finally I do the crossword, which during the week is ridiculously easy but fun nonetheless. It's the weekend papers that really dish out the posers with the New York Times crossword as well as a brand new challenger called Kakuro - Ken Ken on crack. I have managed to complete that one only twice because it takes me a long time and I usually get drawn away to do something more important, unfortunately. One day maybe I'll master it and finish it before breakfast like all the others with the exception of the New York Times crossword which, if I have the time and the brain, takes an entire day to complete, often with a bit of healthy cheating.

So that's how I waste my time. They are like a drug I have to submit to every day. I don't exactly go into withdrawal if I miss them but I do enjoy the challenge. It's where I put my nervous energy.

It is very satisfying to see the end of something so quickly. It's a limited task requiring a set amount of concentration with a pretty strong guarantee that I'll see completion. No loose ends. If I get stuck, I simply walk away for a while, do another puzzle or something else entirely. Usually when I get back to it, suddenly the puzzle unlocks itself.

Conventional wisdom says these puzzles are good for guarding against dementia and general brain rot. I'm not so sure of that but I'll tell myself that's why I'm doing them. That sounds better than the pure addiction it really is. Michael used to kill those puzzles at one time but that didn't make the least bit of difference to what has happened to his brain. I don't believe for a second that if he had done a few more of them he'd be better today, just as I don't believe it when well-meaning souls used to tell me that maybe he just didn't eat the right foods when he was growing up. That's just too neat and tidy and simplistic, not to mention incorrect. If there is one thing I've learned, it's that the human body, especially the brain, is so complex that some days I think we haven't got a tiny clue what causes what; we are groping around primitively in the dark most of the time, with no neat, easy solution to most of our physical puzzles. So let's not make people feel bad that they didn't eat right, do enough puzzles or weren't adequately loved by their mothers.

It is interesting, and of course indescribably sad, to watch the rapid deterioration of Michael's cognitive skills. For a short while I was trying hard to stimulate his brain by attempting card games, board games, jigsaw puzzles, but quickly realized he just cannot fathom them most days. I got overwhelmingly frustrated, having to explain every single step he needed to play something simple like Yahtzee, a game I used to play with very young children with more success. The grid of a crossword puzzle confuses him and he ends up filling the squares with random letters. If the clue is read out to him he can sometimes come up with an answer, just as he can knock me down with surprise with an answer to a tough Jeopardy question. But he cannot work out a crossword grid. Even the simplest Sudoku baffles him just as very easy arithmetic sums do now. And this is a man who studied engineering and advanced mathematics, could blow anyone out the water playing games like Trivial Pursuit, and maddeningly blurt out the solution to the mystery three minutes into a complex crime show.

Things have declined hugely since the neurologist performed this very simple test on Michael nearly three years ago when he finally recognized that Michael's cognition was declining: Among other tasks, he asked Michael to draw the face of an analog clock, apparently a basic test for cognitive decline. Michael wasn't even that bad yet, but I was shocked when he could not do it. As I sat there next to him I wanted to whisper, "Just look at your watch," but it didn't even occur to him to do so. I knew I couldn't help him out of this jam. After the appointment he came home and spent hours with a pen and paper trying to figure out the puzzle, as though he were studying for an upcoming exam. He drew clock after clock with my help, showing him the correct way. He'd duplicate accurately a few times then forget again. He continues to wear an analog watch but he is usually not able to tell whether he even has it on the right way up, let alone tell the time.

Today, Michael has trouble with the simplest things. Some days the plumbing of the toilet confuses and troubles him. Anxiety can overwhelm him as he struggles to understand what is happening to his waste, so convinced is he that he is voiding onto the floor. If I'm not being watchful, because it doesn't happen that often, he will start to take things apart in his attempt to comprehend, falling back on his innate curiosity of how things work and a desire to fix them. He is no longer allowed to touch any appliances, heavy equipment, power tools or any other electrical devices which he finds particularly confusing for some reason. In short, he's not allowed to touch anything more than the television remote control which at least he cannot damage too severely even if he can't figure it out. I spend a good deal of my day rescuing him from remote control purgatory. Most of the time he can no longer remember how to take his pills, which just started as an end of day deterioration but is now something I have to cue him for most of the time: put the pills in your hand, now put the pills in your mouth, now water. If I don't walk him through those steps, he has been known to drop the pills into the water or I'll see him just staring at them in confusion until I cue him. I don't like to jump in right away in case he can remember for himself. Some days he still can.

Michael's cognitive decline will continue and puzzling new developments will no doubt occur. How far down he will fall before he leaves us is a big unknown but one thing is certain: there will be no easy conclusion, no neat and tidy wrapping up of this puzzle.

My Teachers

2011-10-20T05:09:00.000-07:00

"..the education of women is of greater importance than the education of men, for they are the mothers of the race, and mothers rear the children. The first teachers of children are the mothers."
'Abdu'l-Baha.

But fathers are a close second, at least mine was. My mother nurtured me gently but firmly the first six years of my life, years that were spent almost entirely alone in her company for we lived in very remote Alberta communities after our arrival in Canada in 1957. Schools in those rural farming and ranching communities were not wealthy enough to afford kindergarten, a term I never even knew until I was much older. Children stayed at home with their mothers. There were no play groups, no nursery schools, no daycare. Mothers toiled away at home in those somewhat deprived communities, their lives dictated by domestic labour. My mother, even as the school principal's wife and therefore sharing a rather higher social status in the community with the church minister's wives, was nonetheless subject to all the same harsh realities of life in a remote community.

But not all her time was spent immersed in domestic drudgery. My mother read a lot. And she read to me. I remember that we belonged to a mail order library of some sort, perhaps from the University of Alberta, and books were a constant in the various "teacherages" (housing, often quite rough and basic, provided by the school board) we inhabited over the nine years we spent in Alberta. My mother was a voracious reader and, happily, she loved to read to me. I think I was a late bloomer, like many of my own children, when it came to reading independently, but my mother made sure I was well-exposed to good books. Dad, on his many trips out of town to meetings or summer courses in "The City", as Edmonton was known, often brought back wonderful books. Among them were "Wind in the Willows", "Winnie-the Pooh", "Anne of Green Gables" and a fat volume of "Grimms Fairy Tales", all of which I still possess. At about age eight for Christmas I was given a copy of the Oxford English Dictionary, also still in my possession. I have very fond memories of bedtime as a child.

I loved being at home with my mom, who really just left me to my own devices as a child. I'd listen to Gilbert and Sullivan on the record player, taking special delight in the devilish laughter of the Mikado on a D'Oyly Carte recording of that operetta. I was probably a pretty odd little girl, never bored by a solitary life, good training for my life now, I realize. There was almost no television, a few toys and books but apart from that I would just hang out with my mom, helping her as much as a little preschooler could, or play all by myself, lost in an imaginary world. Mom didn't drive or have access to a car even if she could, so we spent most of our time alone at home together.

But eventually the apron strings had to be cut. I really looked forward to entering grade one though I must have been rather terrified to share a classroom with over thirty other children. I missed my mom hugely and remember being terribly embarrassed when I called my sweet young grade one teacher "Mom" one day.

I hated school even though, paradoxically, I excelled at it. I was skipped ahead in my early years, thanks, I'm sure, to my mother's early tutelage, though she never attempted to teach me anything formally at home. She just talked and read to me a great deal and played a lot of games, experience that strongly influenced my approach to teaching my own four children at home. It was a wonderfully free childhood, despite the isolation. In comparison, I was shy, bored, stressed out and somewhat lonely at school despite the large class sizes. But there was one thing that gave me comfort in those early years. Dad, as principal, was at school too, as were my siblings for the first couple of years.

The school I first attended in Grassland, Alberta, had about three hundred students, grades one to twelve. Though the town itself was very tiny, a mere widening in the highway that passed through it, the school and local businesses served the farming community surrounding it. I would guess, from the many school buses I remember lined up outside the school each day, that nearly all the children were transported into town from their farms. Every year during the sowing and reaping seasons when all hands were needed at home, the school emptied out leaving only the littlest who were too young to help and those of us whose families lived in town and simply benefited from the bounty of the annual crops.

Dad taught the upper grades which meant my two siblings were lucky enough to have him as their teacher for some courses. I had to wait a few years and another town for that privilege. Dad was well loved and respected by all, at least that was my impression. He knew every single kid by name and treated all equally with his wry good humour. He always said that a school was too big if the principal could not identify a retreating student from behind, which loosely translated into anything over about three hundred students. How many schools are there like that anymore, I wonder, in this world of bigger-must-be-better? Dad was also rather formidable if you ever found yourself in trouble, a situation I wisely avoided all my school-life. He was fair but tough and everyone knew it.

So, though I didn't enjoy Dad as my teacher until I was ten, he was a soothing presence for me. For the three years that he was my teacher in the small town of Kemano B.C, where class sizes were small, intimate and multi-graded, I can safely say he was the best teacher I ever had. Those were the only years that I didn't wake up with dread and anxious stomach cramps from my terror, a feeling that came back with a vengeance when I was sent to Vancouver to attend boarding school. The little school in Kemano stopped at grade eight and all the children had to be sent away to high school at a tender age or your family moved away to another community. I had learned to love school, and my dad's relaxed approach and emphasis on self-directed learning, a revolutionary approach back in the sixties, also influenced me greatly when I came to teach my own children. Dad was an inspired teacher, a Renaissance man; he could do anything and knew everything, it seemed to me, and what he didn't know, he freely admitted and set about finding out.

Not only did I learn the most about my own learning-style from my dad but he taught me something else, something he probably didn't even consider especially significant. Many of you probably remember the long-lost custom of gathering the school community together every morning for prayers and announcements. Today, school size and religious anxiety prohibit that practice in most schools, but in those days, in those communities, everyone was considered to be Christian, even if you weren't, though I think the population in those towns was pretty homogeneous. We'd shuffle into the auditorium with the youngest at the front, the oldest at the back, and listen to Dad give the daily announcements, then recite the Lord's Prayer, or maybe it was the other way around.

I was never sure of Dad's spiritual leanings. Like sex, it was a taboo topic in our home. We were never sent to Sunday School, unless we wanted to; we never attended church, unless we wanted to. We were never taught the Bible beyond what was part of the school curriculum which Dad wholeheartedly supported, probably believing it was an essential part of a well-rounded education, if nothing else. Mom was often called upon to play the organ or piano at some of the local churches but we were never forced to accompany her. One summer I tagged along on a week-long Christian summer camp probably conducted by young, zealous traveling missionaries. Mom and Dad were both happily supportive of the venture, though I quickly became bored and wished I had stayed home instead.

So it was really by accident that Dad became my first spiritual teacher. That recitation of the Lord's Prayer every morning became the only connection I really had to any faith back then, but even that was tenuous. I had no real interest but I dutifully memorized and recited it every day as did we all. I have vivid memories of standing at the front of the auditorium as a little six-year-old with my classmates and feeling the need to recite this prayer as loudly as I possibly could, probably shouting it. I felt God needed to hear my voice alone amidst the throng. Dad and my teacher must have known all too well who the offender was but all that was said by my teacher was a quiet reprimand to the entire class that such behaviour was unseemly. If she didn't already know it was me, my reddened face would have revealed my culpability. I quieted down after that. In later years I would stand next to my best friend, now well at the back of the small Kemano School common room where we gathered every morning, with my eyes tightly shut to see how long before I started to sway and risk falling over. I'm not sure I ever had a single spiritual or reverent thought all those mornings.

That prayer is still one I recite daily, having come back to it after abandoning all things spiritual for years. It now stands with several others I have memorized from my new faith, but it is the one that, as I recite it, I summon up my dad's presence along with all the other family members and friends who have left us. I imagine us all together again, standing close just as I did with my schoolmates, while I recite the Lord's Prayer on my solitary morning walk, my meditative time.

It surprised me a few nights ago when Michael asked that we start saying that prayer at bedtime along with the two others I always recite. We dedicate it, as I do when I'm on my own, to all those who have gone. It is the only prayer Michael has embedded in his memory, now incapable of memorizing new ones, but it is one thing we can still do together, in unison.

Thanks Dad.

The Educator

2011-10-08T05:32:00.000-07:00

"The mind and spirit of man advance when he is tried by suffering...suffering and tribulation free man from the petty affairs of this worldly life until he arrives at a state of complete detachment."

Those are the words of Abdu'l-Baha, son of Baha'u'llah, founder of the Baha'i Faith , put to paper in Paris during his 1911 visit.

In no way would I compare our affluent, comfortable lives with those of the aforementioned family who suffered terribly through years of exile and imprisonment, but with each passing day of Michael's illness, I begin to understand those words. I have come to see Parkinson's Disease as my educator. I would not want to guess at or comment on Michael's spiritual experience with this ordeal, except to say that he seems to have achieved a detachment from the world and, most days, a serenity and acceptance of his condition that I have never seen in anyone else. It is I who must be taught.

I am learning to smooth the rough edges of my speech, to speak without judgment, without anger, sarcasm and frustration, to speak cheerfully when I'd rather scream.

I am learning to wait calmly and without hurry for my husband to search for and utter the words he needs to tell me something important or not so important, and to give each equal weight. I am learning to take the simplicity of those words and thoughts and dig below the surface to the intelligent mind buried within, to find meaning in the spaces.

I am learning to listen to wordless communication, to understand a facial expression, or simply a look in the eye when Parkinson's leaves his face a stricken mask, unable to communicate in even that most basic way.

I am learning to love my husband unconditionally beyond the physical reality of our relationship, a reality that means little communication, little intimate contact, no equality of minds or exchange of ideas, to love the man within the returned, needy child.

I have learned many skills through these challenges.

I was a shy, quiet girl when we first met; Michael was my strength, always socially adept and affable, qualities that attracted me. He talked and listened and loved all at once. I leaned on him. Over the years we have switched roles; my confidence has improved, his has waned. Now he is the one who looks to me for reassurance socially. He leans on me. His eyes dart to me immediately to fill in the words for him if he cannot find them himself. I have found my voice when he has lost his.

I have learned to take care of business, all business whether it is household accounting, small repairs, catastrophes, car shopping, home renovation decisions, yard work, parenting as though a single parent, pet care, problem solving, all domestic work. I am learning how things work like sump pumps and furnaces and tractors and generators. I can light fires to keep us warm and haul the wood we still have from when we heated that primitive way but might have to again with frequent power outages. I can haul water, cut grass, clear driveways. In short, all skills required in the running of a household and busy family I have had to learn or at least know to whom I can affordably delegate.

I have acquired an assertiveness I never had before. Years of advocating for this voiceless man have given me courage to speak out on his behalf, to complain about inaccessible buildings, to insist on medication changes. I am not sure I can yet do it for myself but it has become easier to do so for him and for others whose care has been bestowed upon me. I have learned that my natural courtesy accompanying a decisive and informed approach are a powerful combination and almost always meet with success.

I am learning to have an awareness, an empathy and an understanding for those who suffer with illness in our world, especially those with mental health afflictions. Michael's behaviour has sometimes bordered on what I imagine schizophrenia to be like: paranoia, delusions and hallucinations with accompanying fear and aggression. When I witness similar wild behaviour in the streets, I understand and wish the world would too. Many are self-medicating to escape the horrors in their brains. It is sobering to know that if Michael's condition weren't properly managed he too might be living and raving in the streets, if he could survive long enough.

I have learned a lot about what well-wishers need to know. They need to know to offer specific assistance such as, "I can give you an hour of respite on Sunday," not, "Just call if you need anything." A caregiver WILL call when she really needs something, but the day-to-day needs are so great that a community of people would soon be exhausted by constant requests for help; they must understand that a caregiver does not want to burden folks to the point of burnout and avoidance. It is better for those who can to step forward themselves to offer specifics and not burden the caregiver with their guilt if they cannot. This knowledge I will carry forward to all future involvement with the frail and their caregivers.

I have learned to shut out loud noise, to tolerate the constancy of the television, to enter my own inner world. I am learning to write and silence the editorial voice that haunted my brain and froze my pen all my life. I have cast aside that pen and taken up the computer instead, an instrument that has freed a flow of unfettered words onto the screen, to be cleaned up later.

I am learning to be patient with the course of this disease, to understand there is no formula, no straight trajectory. Michael could live ten minutes, ten days or ten years, but that is no different for any of us, is it? I have to accept that my impatience to "get on with my life" must be put aside, to realize I am engaged in meaningful work no matter how boring and frustrating it might be at times. I am also learning to be patient with myself, to pare down my expectations of perfection so that when I mess up I forgive myself more quickly.

I am learning to pace myself with that patience. There is time for everything and what there isn't time for turns out to be unnecessary or unimportant; "petty affairs". I have learned that to be an active member of my community I simply need to try to be the best person I know how to be, to treat all who cross my path with reverence and respect, in itself an act of revolution. I do not need recognition from anyone outside the little world of my home and my caregiving. One can have an impact on one's community without going more than a few steps from one's door.

I am a calmer, stronger, more efficient person than I've ever been before.

I am learning how to pray and put my trust in a higher order; to put aside my ego; to understand that what I want is inconsequential; that this is the job I have been given and this is what I must do. Nothing else matters. I am aware there may be divine mercy and justice at play here, allowing me to make amends for what in my mind looms as an egregious long-past offence. Atonement.

It is an impossibly long and arduous road to that "complete state of detachment," a destination I will never reach but must persevere nonetheless, as we all do. My ego frequently rears up with insistence and blocks the path. But I am learning, I think, and must be patient with that process too.

A Dream

2011-10-02T19:00:00.000-07:00

A dark, starless night along an unlit road. Pitch black. Michael is at the wheel; I am in the seat next to him. We are otherwise alone in the car. He has failed to put the headlights on so we are driving ahead blindly. When I realize this, I calmly reach over and turn them on, illuminating the road ahead at last. Then, a second or two later, I understand I am to take the wheel and steer this car, but from my position in the passenger's seat. Michael sits back and allows me to take over; we drive safely through the night.

This dream came to me years ago when Michael was still well enough to be working, driving, and participating fairly fully in family life. I understood immediately its meaning, though I hoped it wouldn't be so. Alas, I have had to take full control of our drive through life; I have had to illuminate the road before us. But Michael is still the provider, his pension allowing us to survive comfortably without worry despite the discomfort of this disease, still in the driver's seat even if he cannot work the controls anymore, our relative material wealth his accomplishment.

We are alone together, navigating the dark road of this illness.

One day, I suppose, I will be completely alone in that driver's seat.

The Evil Eye

2011-09-30T06:20:00.000-07:00

We have a television. We even have it dominating the living room, that hallowed space in large modern houses that often sits in pristine elegance and neglect. No relegating this essential appliance to the dark basement or a messy family room for us. We tried that a long time ago when we first moved into our current home which, at the time, had a room we proudly referred to as our family room, our first ever (it has since been transformed, with the addition of a couple of walls, into a bedroom for Michael and a hallway). It was really nothing more than a mud room, a very large open space across which children would fling their messy boots and shoes as they rushed in through one of the two doors, missing every mat and shoe rack intended for their footwear. This room was also the toy room which meant Thomas the Tank Engine chugged his way around couch and table legs, and Lego blocks and small metal vehicles dug sharply into bare feet. We had one futon couch for the six of us and two cats to cram ourselves onto and pretend we were actually comfortable. Bonding. Meanwhile, an enormous, nearly empty living room sat unused, somehow raised to the status of the room for entertaining and quiet reflection. But we never entertained, at least not in any kind of sophisticated and genteel way, and no one ever reflected quietly in our house, at least not on the main floor. I will remind you that we had FOUR children, and even though our three daughters were pretty civilized, the same could not be said of their little brother. Unless we invited our own extended family or families with equally unruly little boys, we almost never entertained. Nor were we ever asked out, now that I think about it. So it was after a few years of discomfort and squabbling that I made a momentous decision: the television is going into the living room. More space, better couches, still lots of toys (they always seemed migrate with the crowd) but happily comfortable. We have never looked back.

We have graduated from a tiny screened contraption to a much larger gizmo, not big enough for the avid sports fans in the family but a reasonable compromise between the bigger-is-better school of thought and the lone voice of moderation and fear that our lives would be taken over by the Evil Eye.

And guess what? They were, taken over that is. It was a gradual, insidious process as children wheedled and whined over the years, breaking down my rather severe restrictions. With the television in the living room and essentially in the centre of our open concept house, it was now inescapable, so in order to remain sane I had to impose harsh parameters. At mealtime, the television was always off, still is. I cannot bear the racket while I try to eat, even if the silence emphasizes the complete lack of conversation between the two of us now. Only on rare occasions were meals allowed in front of the television. Also, certain shows were taboo, though over time even those restrictions were lifted as I came to appreciate the irony of shows like the Simpsons. Instead of listening to the characters' voices on the television while I ate, my children treated me to Simpson quotation contests. For several years my children only seemed able to communicate with each other through the words of Bart and Lisa Simpson. Perhaps it was payback for the original ban imposed on the show.

We have now evolved to the television blaring ALL day, save mealtime and those blissful early morning and late night hours when I find myself alone in the house with Michael in bed. I have learned to enter my Zen state as he whiles away the hours watching sports shows and horrendous documentaries about air crashes and boat explosions which curiously don't seem to bother him. My standards have flown out the window. And when you can't beat 'em, you might as well join 'em. To that end I have discovered a number of shows I really like (I'm partial to movies, murder mysteries and law shows) and, as long as I am stretched out on the couch with my feet resting on Michael's lap or at least touching him somehow, he is perfectly happy no matter what we watch, unless it freaks him out. If that happens I give up and switch to rugby or soccer or hockey or football or darts or poker (I had no idea that one was a "sport") and retreat to do something else, leaving him glassy eyed or peacefully dozing in front of the hypnotic screen.

So imagine my surprise when I had to interrupt an entertaining telephone conversation with an elderly friend who was regaling me with hilarious tales of her experiences in her new retirement residence. Michael was putting on his shoes, not glued to the television as always. It was nine o'clock and dark, not to mention very close to the ebbing of his mobility with end-of-day akinesia.

"Where are you going?" I asked with my hand over the telephone receiver.

"To get a movie," came the reply, his body now poised to step out into the darkness.

Oh. I said a hasty good-bye to my friend. The closest movie store is about two kilometres away, a short drive but an impossible excursion so late at night. Getting there would be no trouble, but negotiating through the narrow aisles of the store to the back room where the movies are displayed an impossibility for Michael at this time of night. I suppose I could have left him in the car while I dashed in to find the movie myself ("Blackhawk Down" was for some reason the desired film) but I wasn't feeling very charitable at that moment. Besides, the choice of film was completely inappropriate for my husband's unstable brain at such a late hour; he has seen it before and it unnerved him. Also we have Apple TV, a generous Christmas gift from the kids aimed at eliminating this problem by making movie rental a couple of simple clicks on a tiny remote control. I suggested we look first to see if it was available through this medium, hoping by making this suggestion it might derail the project. It did. He forgot all about it.

But what was so ironic about this whole episode was Michael's unusually articulate and vociferous assertion that he never gets to watch what he wants. It was a deluded declaration of annoyance at my perceived control over the television, which, I suppose, has some truth since, without my intervention with the now very complicated remote control, he would never watch anything. I had to suppress my amusement as I distracted him with a hockey game, but as deluded as it was, it was nice to see a rare flash of independence and annoyance. Perhaps this was a statement of his resentment of the need for my entire control over his life, indeed the disease's control over both our lives.

Too bad we can't just turn that off with a simple click of the remote control.

A Fit of Pique

2011-09-23T20:50:00.000-07:00

Red hot anger rarely boils up in me and even when it does it is always short-lived, usually unexpressed. I am learning not to burden my husband's tenuous grasp of life's complexities with my pent up emotions, especially wrath. It serves no useful purpose. Most of the time I can explain it all away by consulting the calendar and realizing it is that proverbial "time of the month" when most women feel like eating their young and sacrificing their husbands.

I find it odd how my ire can always be triggered by some perceived injustice that happens to surface right at that most vulnerable time of the month. Is it that I just overlook these things the rest of the time, taking it all in my stride, blind to injustices and inequalities, or is it my hormone-addled brain overreacting to the normal day-to-day frustrations?

Tonight the trigger was my still unwell, anxious mother-in-law who was worried that her holidaying son and his wife were not yet home from their two week jaunt overseas. I had to be the reassuring, calming voice, as always. It was her second call, to announce happily that they were safely home, that blew my gasket. After the call, I lay on the couch simmering from the frustration of always being the reliable one who never leaves her post. Michael was completely unaware of my turmoil, I hope, as was his mother. He wandered around in his back-to-front shorts muttering something I couldn't understand, then rifling through my phone book for mysterious phone numbers. I tried my best to ignore him until burnt toast and spilled juice jolted me off the couch and into action. A slammed plate and glass on the counter did nothing to alert him to my anger which I realized was aimed at myself for always being reliable, cheerful and probably very dull.

I'm over it now. As always, it was a quick snit with no one the wiser. I can't help myself; I'll continue to be that boringly dependable one who dreams of vacations but never takes them because there will always be someone who needs care. On the whole, I'm a pretty contented soul despite the holiday deficit and the occasional fit of pique. And so far my offspring remain unconsumed and my husband walks this earth in blissful ignorance of his wife's occasionally murderous sentiments.

The Sound of Silence

2011-09-18T07:55:00.000-07:00

The human heart must be made of uncut diamond. Otherwise the events of the past several years would have shattered mine many times over. The losses pile up. I marvel at the toughness of my heart and wonder what can ever make it crack. If anything should threaten my currently healthy, happy children, that would be a force likely to pulverize earth's hardest substance. But so far my heart remains intact.

That doesn't mean that an occasional fragment isn't chipped off now and again. With each loss, my heart shudders mightily from the force. And witnessing my husband's suffering means daily chiseling.

Last night sleepiness overcame me. But it was the good kind. I was physically tired after a rare day out with friends, hiking in the Gatineau Park and feasting on a pot-luck lunch in the late-summer sunshine. Divine. I was lobbying for an early bedtime, so Michael was ready well before the usual ten o'clock. But we had left the television on and tuned to a 1969 documentary on Simon and Garfunkel, those balladeers of our youth, so after teeth-scrubbing and pill-popping, Michael drifted back into the living room. He sat perched on the coffee table right in front of the television. I curled up on the couch, trying to stay awake but drifting peacefully to the sounds of this famous duo performing their songs.

Then I opened my sleepy eyes to see my husband intently watching the screen and noiselessly mouthing the words to "The Sound of Silence", tears in his eyes. My heart lurched; a new facet lay exposed:

Hello darkness, my old friend
I've come to talk with you again
Because a vision softly creeping
Left its seeds while I was sleeping
And the vision that was planted in my brain
Still remains
Within the sound of silence

In restless dreams I walked alone
Narrow streets of cobblestone
'Neath the halo of a street lamp
I turned my collar to the cold and damp
When my eyes were stabbed by the flash of a neon light
That split the night
And touched the sound of silence

And in the naked light I saw
Ten thousand people, maybe more
People talking without speaking
People hearing without listening
People writing songs that voices never share
And no one dared
Disturb the sound of silence

"Fools", said I, "You do not know
Silence like a cancer grows
Hear my words that I might teach you
Take my arms that I might reach you"
But my words, like silent raindrops fell
And echoed
In the wells of silence

And the people bowed and prayed
To the neon god they made
And the sign flashed out its warning
In the words that it was forming
And the sign said, "The words of the prophets are written on the subway walls
And tenement halls"
And whispered in the sounds of silence

Silence is not Golden

2011-09-17T05:38:00.000-07:00

Test results are in. The laboratory gods have spoken. There's nothing wrong with my husband. Well, you know, beyond the obvious.

Michael's thyroid is apparently fine despite the swelling. There was no insight given as to why this gland in the neck is bigger than it should be, just that the blood tests showed nothing. Kidneys, liver and everything else that could be studied - all working fine. Therefore no need for further investigation. The only slightly imperfect result was a low-normal reading for Michael's vitamin B12 levels but not enough to cause any alarm. I could put him on a supplement, or not. Up to me. When I asked if there might be any connection between the B12 malabsorption and the thyroid, the answer was an abrupt no, even though some of the internet links I found do make the connection. I understand that internet sites are not always reliable and need to be corroborated, but it is an interesting link nonetheless. I will continue to watch the thyroid closely.

I know the system is overloaded, and where there isn't any real smoke, no need to bring in the fire brigade. But I am left with a lingering feeling that things aren't right. Mind you, as I have said repeatedly, Parkinson's disease is an all-encompassing disease that seems to affect every organ in the body, though so far none of his seem to be seriously compromised. Except maybe the heart, though I suppose that could be mutually exclusive to the PD. All that is happening, perhaps, is just the progression of this nasty disease.

I have learned through years of caring for sick parents and my husband that medicine is an inexact science despite confident assurances otherwise from the good people in the profession. I am finding, as I become more confident myself in challenging the doctors when pronouncements are made, that most are willing to admit they don't know or that they are struggling with a difficult choice of treatment. Recently my mother-in-law suffered a mysterious attack of pain to her right thigh that rendered her incapable of walking. It took days of hospitalization and oodles of tests (she claimed that "gallons" of blood were drawn from her frail body) to conclude days later that she had suffered a massive spontaneous rupture in her leg caused by raised levels of the powerful anticoagulant Coumadin in her system. She was given many blood transfusions, vitamin K injections, and the drug was eventually withdrawn in an effort to stem the alarming bleed. It is more than three weeks later and she still sports an enormous ugly, swollen bruise that stretches from hip to ankle and is very slowly getting back on her feet.

What was interesting to observe, when I had the good luck to be present when the parade of doctors paid their visits, was how uncertain they all were on how to proceed. But the uncertainty was only admitted when I pressed for answers. Their dilemma was this: to keep her on the drug meant risking another bleed; taking her off might trigger a fatal clot. Their job was one of risk analysis, a tricky one at best. For a few days they were back and forth on their course of action and in the end opted to resume the Coumadin, assessing that to be the less risky course. I sympathized with these doctors who were trying their best to make the right decision. I was amazed at one doctor's honesty when I challenged her by suggesting, after the frustration of listening to the team's vacillation over several days, that their decisions were much like tossing a bunch of balls in the air and whichever one they caught was the decision of the day. She admitted that was a pretty accurate assessment in this case.

So medicine is an imperfect science based on the vast but still very incomplete knowledge of the human body. Medical folks do their best in difficult circumstances but have to rely on sometimes spotty information from the patient whose condition, fear and anxiety may render him/her incapable of giving a complete picture. Often they are only making an educated guess, I have discovered. Their tests, of course, help considerably in the process of diagnosis but are by no means the whole picture. In my mother-in-law's case, for example, no test seemed to show the cause of the terrible pain in her leg. At first it was being dismissed as an old woman's confusion over a forgotten fall, despite the absence of telltale bruising on Coumadin-sensitive skin in the first few days. When I realized this attitude prevailed, I told a staff member that if this still very sharp, lucid woman had said there had been no fall, there had been no fall, and no, she was not exaggerating her pain; I speak to her at least once a day and know very well how clear, aware and stoical she is despite her advanced age. She has a better memory than I do. Then as the days wore on, the terrible bruise emerged giving them the indicator they needed, the indicator that no sophisticated tests could reveal and proving that Michael's mother hadn't been imagining it.

This is where a knowledgable advocate can be so helpful. This is why I continue to do my homework whenever a new symptom arises. I may be way off base and exaggerated in my own amateur assessment of what is happening to Michael on any given occasion, but as the person who knows him best and is most acquainted with his experience with this disease (second to him, of course, but his powers of articulation are gone), I am in a unique position to offer much insight to the doctors, saving them a lot of time. It is important for the advocate to feel confident enough to put forward respectful observations and ideas, no matter how silly it may feel. This isn't about my ego so it doesn't matter if I get it wrong. My job is to observe closely, toss around ideas, make connections, then put them out there to the people who know better than I. Then my job is to listen carefully to the diagnosis and treatment instructions, and protect Michael's right to humane considerations. Oftentimes I have guessed correctly what ails my husband; often I am way off base. But I'd rather be wrong than silent.

What frightens me more than anything is the realization that many, if not most, people do not have advocates when they are seriously ill and cannot speak for themselves. All of us, in these times of beleaguered medical staff and overcrowded hospitals, need someone to stand up and speak out for us so we are taken seriously and don't get lost, forgotten or ignored in the system.

The Patchwork Quilt Disease

2011-09-11T20:02:00.000-07:00

Throughout the many years of Michael's illness, seventeen since diagnosis, I have been learning steadily about Parkinson's Disease along with all the complicating illnesses Michael has suffered. It feels as though I am very slowly working on my medical degree acquired through the internet and my dog-earred Merck manual. It's like a patchwork quilt, each calamity and complication a new colour I add to the work, none of it seeming to connect until I stitch it all together into the big picture. Michael has truly been a study of diversity of ailments.

The latest piece being added is a chapter on the thyroid gland. I have to credit my friend who hadn't seen Michael in several weeks but noticed on a visit last weekend that there is a swelling in Michael's neck. I hadn't seen it at all. Most days my head is down just getting through the rigours of life with a seriously disabled person and it worries me that I'm not seeing things anymore. Nevertheless, my friend did and I'm grateful for that.

On inspecting Michael's neck right after my friend left, I discovered a butterfly-shaped swelling below his Adam's apple. I felt my own neck to compare. Definitely a considerable enlargement in his neck. I hit the books and the internet, knowing only that the thyroid gland is situated in the neck and that hypo- and hyperthyroidism are associated conditions but I knew very few of the symptoms.

Now it turns out that days before this discovery we had visited Michael's neurologist. When I told him about Michael's plummeting blood pressure and steps I had taken to reduce his heart medications, he knitted his brow and filled out a requisition for a series of blood tests, saying that perhaps the kidneys need checking, among other things. When the visiting nurse arrived last week to administer Michael's monthly blood test for agranulocytosis, a rare but severe side effect of the anti-psychotic medication Clozaril, I handed her the requisition for the other tests. I showed her the swollen thyroid. She noted that the doctor had ordered a number of tests to be run, including one for the thyroid. Aha. Maybe the Good Doctor is already on to something without having been told about this new discovery. That's why these guys go to Med school.

We have had no results back from the tests but in the meantime I hit the information highway. Various lights have gone on in my brain as I realized that this could have been an issue for a while, though I'd like to think that with all the bloodletting Michael has endured over the past few years, somebody would have discovered this if it had been a long-standing problem.

Among the various diseases associated with the thyroid, two basic ones exist: hyper- and hypothyroidism. And these afflictions may not be easily discovered unless you have a sharp doctor who can piece together your symptoms. Many other diseases can mask this problem, including Parkinson's disease, I discovered. Conversely, a thyroid condition might mask underlying Parkinson's.

Hyperthyroidism, which very simply is where too much thyroid hormone is being produced, is characterized by fast heartbeat, high blood pressure, moist skin and increased sweat, shakiness and tremor, nervousness, increased appetite with weight loss and confusion just to name a few listed in my trusty Merck Manual. Hypothyroidism, too little thyroid hormone, has an equally long list of symptoms: slow pulse, hoarse voice, slowed speech, constipation, confusion, depression, dementia, weight gain, loss of hair, especially eyebrows. You can see by the italicized symptoms a possible overlap with Parkinson's symptoms.

There is no doubt that Michael has Parkinson's Disease. But the overarching nature of this disease that affects the entire body so completely makes it the big bully that pushes out the little guys and always cries out for attention. Symptoms that I have noticed lately, such as an annoying dry cough throughout the day, but especially at mealtime, and ridged fingernails, I have simply put down to the mysteries of PD and have discounted them somewhat. (Swallowing can be a serious problem for PD patients leading to weight loss for some.) But according to a couple of websites, these two symptoms might instead be an indication of a malfunctioning thyroid, namely hypothyroidism. Michael's overwhelming sluggishness, his very low blood pressure and at times low pulse rate might also be part of a thyroid problem.

We will find out soon enough whether the swollen thyroid gland is cause for concern and treatment. It will be interesting to see if there is improvement in any of Michael's symptoms that we have all just assumed were part of the Parkinson's quilt. Whatever the results tell us, if anything, my knowledge continues to grow.

Distracted

2011-09-05T17:08:00.000-07:00

It was a long week of visits to Michael's hospitalized mother whose condition steadily worsened until mid-week when things started to turn around. She is by no means cured or even back on her feet and can anticipate many more days in hospital, I fear, but at least the concentrated worry is over. For now.

Michael has fared very well through it all, enduring several visits over the week. After our first successful foray to the emergency ward last Sunday, I have boldly dragged him along on almost all of my visits. That way I haven't needed to use up my precious respite hours.

There is a long uphill climb from the parking lot to this hospital's entrance. One day, a highly observant individual, on seeing me push Michael up this hill in his wheelchair, helpfully commented on how steep an incline it is. I responded with a polite but, I hope, ironic thank you. So Michael's job was simply to sit still, remain calm and not stir up trouble, all of which he accomplished admirably. The rest I could take care of.

By week's end two children arrived home, one with a rather large dog in tow that he had been dog-sitting for a couple of weeks at his home in Toronto and was returning to its owners on Sunday night. This boisterous horse-sized creature bounded into our house wreaking havoc with my old and grumpy dogs. At least, that's how they saw his visit, I'm sure. He was well behaved and obedient on the whole and listened astutely whenever he was scolded by an annoyed elder. He'd submissively take up a resting spot well away from them for an hour or so until he thought he could try pestering them again. He was to be credited for his persistence.

With my mother-in-law's care, the arrival of this gangly energetic dog, two adult offspring dashing in and out and, of course, my husband's ongoing needs, I was truly distracted by Sunday night. And tired. A couple of sleepless nights, one nursing a sick and frightened dog during a noisy thunderstorm, saw to that. So when it was time for Michael's seven o'clock dose of Parkinson's meds, it seems it all caught up to me.

Michael's various medications are spread throughout the day over five dosing times. But the plastic container into which I divide up his weekly meds only contains four little boxes per day. The fourth box contains both his seven o'clock PD drugs and his bedtime pills which I carefully separate out into an egg cup for later. This bedtime collection contains his cholesterol medication, any laxatives he is currently taking, his anti-anxiety medication Clonazepam and his anti-psychotic medication Clozaril. The last two ensure a peaceful night, usually knocking him out within minutes but within half an hour at the latest.

Last night I administered Michael's seven o'clock dose while shooing the visiting dog away from the butter dish he was happily licking, and carrying on a conversation with my son who had just walked in the door. Michael settled himself in front of the television for yet another night of viewing. Ten minutes later I gasped. There on the counter, next to the well-licked butter dish, were the untouched Parkinson's meds. I rushed into the living room to check the other egg cup, hoping that I had dreamed the part where Michael had swallowed his pills. No such luck. Empty egg cup.

Great. Seven o'clock and Michael is doped up for the night. Our son went out with the offending dog and I took my usual position next to my husband on the couch. As the minutes wore on, Michael sank deeper and deeper into me with his head resting alongside my outstretched legs. He had a bowl of cherries in his lap that were being dropped ever so slowly one by one into his mouth, Roman orgy style. Then equally slowly he was removing the pit and stem and dropping them heedlessly onto the floor. He drunkenly got up to use the washroom and fell like a rag doll six times in the six steps needed to reach the room, then a loud crash as he entered it. Another six falls back to the couch. I held on until nine o'clock with him again safely slumped against me on the couch, but then I decided to pack him into bed. My stoned husband was not taking in anything by this point. Nor was I after a fairly sleepless weekend. To avoid further injury, I loaded him into his wheelchair and got him ready for bed, no easy feat with a drunken sailor.

I fell into bed moments after his collapse and was asleep instantly. A stupid mistake but I was too tired to feel badly. Obviously there had been too many distractions, but at least I got an early night out of it.

Celebration

2011-08-28T19:03:00.000-07:00

Though I like to think of myself as a quasi-vegetarian, there is no denying the occasional craving for a bloody steak now and again. This afternoon we were out and I decided I really didn't want to cook - ever again, if I were pressed to admit - so I suggested a meal out. After laying before Michael all the acceptable options - fast food preferably but I might consider a real meal at a real restaurant if the service was quick - he hesitated for several minutes then uttered one word: Steak.

Poor Michael is not a vegetarian even though he is subjected to tofu-this and soy-that on a regular basis. Many years ago when I served my rather tasty tofu cutlets for the first time, he declared it was akin to eating erasers. Too bad. All future meals of tofu cutlets were then served with copious amounts of chutney for his sake. I won't say he came to love them but he learned to be a good boy and choke down half a cutlet with gobs of sauce and large glasses of beer in the days when he was still allowed such pleasures.

But when the idea of steak was presented to me, my hungry taste buds went into overdrive. As we were heading back towards home at this point, I quickly racked my brain for a suitable restaurant. It was only late afternoon (we had skipped lunch) so the crowds would be minimal making our arrival and departure less of a freak show for the assembled diners.

I declared this first meal in a real restaurant in over a year and a half to be a celebration of that anniversary I wrote about a couple of weeks ago. A year ago on August 30 I busted my husband out of hospital, leaving a trail of bloodied floors, wounded nurses and annoyed doctors. He was not released on good behaviour, I can assure you of that.

We were celebrating something else too, though Michael was unaware of the significance. We were returning home from a visit with his 87-year-old mother who was rushed into hospital over three days ago with severe pain in her leg, tachycardia and an elevation in her white blood cell count, though the last two symptoms were only discovered at the hospital. She could not walk and had to be carried out of her home on a stretcher. This poor woman, who has been fiercely independent in her own home until now, was lying frightened and disheartened that nobody could figure out why the pain in her leg is still so bad, rendering her completely unable to walk. Obviously, if the problem doesn't sort itself out, she cannot go home and we will have to make other living arrangements for her. Like so many of her generation, she has no intention of living anywhere but home, though now she is at least open to the idea of a few days in a convalescent home if necessary once she is discharged.

I have visited her three of the past four days in hospital, the first two with the help of a friend or our caregiver to sit with Michael. I had little desire to risk taking him in to see his mother while she was languishing in the emergency ward but resolved to take him if and when she is transferred up to a proper room on a ward. Well, that hasn't happened yet; the hospital she is in is so overcrowded there simply isn't a bed for her. When I spoke to her this morning on the phone, she sounded so unhappy and frightened that I couldn't bear leaving her there all day alone. So early this afternoon when he was finally mobile, I packed Michael and his wheelchair into the car and off we went.

Emergency wards, in fact all things associated with hospitals, are anathema to Michael, as you may remember. Both his mother and I had agreed that he would not visit her there, but since the likelihood of her ever being transferred elsewhere during this stay is slim, I decided to risk it.

We stayed well over an hour with my mother-in-law who seemed genuinely happy to see us and our pile of newspapers and books, despite her frustration, fatigue and fear. Michael was perfect, not the least bit perturbed, so we have promised to try again tomorrow.

A celebration of a thick, juicy steak was definitely in order.

The Agony of Reading

2011-08-28T05:09:00.000-07:00

I don't read much anymore. I'm not sure why because it used to be a consuming pastime. I blame the constant babble from the television set. But on the rare occasion when I do get completely absorbed in a book, the drone is easily blocked out. When that delicious moment happens, it is an effort to attend to the frequent interruptions of Michael's needs and the dogs, who are so spoiled by our constant presence that they have me well trained to jump whenever they need to pass through an outer doorway. Maybe I've just partly solved the mystery of why I don't read - frustration.

But today I finished a book that held me in rapt attention for the few days it took to read it, and I am eager to read this author's second novel. "Still Alice", by neuroscientist Lisa Genova, is the story of Harvard professor Alice's rapid descent into the severe dementia of early onset Alzheimer's disease, somewhat mirroring another famous Alice's stepping into the crazy world beyond the looking glass. It is a heart-wrenching but, I believe, accurate account from the patient's perspective of this terrible disease and how it affects all her relationships, professional and personal, but especially the relationship with her husband.

Though Michael is not afflicted with classic Alzheimer's disease, the dementia he experiences is very close to what this woman suffers, though her descent is far more rapid and is not, of course, accompanied by the same mobility issues of a Parkinson's patient. Otherwise, many of Alice's challenges closely mimic my own poor husband's. It was difficult to read the story from Alice's viewpoint and see articulated all the horrors and awareness she possesses through it all, at least in the early stages. It made me wonder, if Michael had been able to articulate his own experience, would he have expressed the same devastation?

As well as my sadness at reading about Alice's plight and inserting my own husband's unspoken pain into her words, I came away feeling very angry.

Alice's husband is also a well-respected Harvard professor who, upon hearing of his wife's unbelievable diagnosis, throws himself into learning everything he can about the disease to advocate for her. He does this very well at first. He loves his wife and wants to do all he can to help her. But his life is a busy one with many hours spent at his university lab conducting research experiments and weeks away at conferences. His work, of course, is very important, as was his wife's. They had even collaborated on a significant book together.

As the novel progresses and Alice's disease moves forward with terrifying speed, John becomes more frustrated dealing with her developing idiosyncrasies. He is even disgusted by an episode where she collapses laughing on discovering she cannot get her sports bra over her head because, as John points out, it's a pair of underwear instead. He spends more and more time away from his wife whose sense of abandonment is palpable. Finally, John is offered an important job in New York that he decides to take even though his wife's stability depends on her familiar surroundings. She, while still able to, argues her case, but he has made up his mind. In the end (***spoiler alert***), he goes, leaving his wife in the care of his three very busy adult children and a weekday caregiver. Alice is able to remain at home.

This is when my blood boiled and I had to put the book down. Not that I blamed John for pursuing his career. On the contrary, I envied him. He had three adult offspring unrealistically ready to jump in despite busy careers and families of their own. As well he had ample financial resources for expensive outside care. And apparently little guilt or concern for the others who had to shoulder the burden for him. That was the sticking point for me.

Is it guilt that makes me so reluctant to hand over Michael's care to an institution, given the limited options for homecare? My social worker is offering more weekend respite since well-meaning volunteers have nearly completely dried up over the past several months. Understandable. They're tired, busy and have lost interest. Like John, it's time to move on. But I now realize I absolutely must have at least one day per weekend when I can count on getting out for a walk with the dogs. So, in the middle of yet another silent weekend, I have resolved that I will call her back on Monday morning to get that set up.

If that is not enough, she is also offering temporary or permanent institutional care for Michael. I am baulking. I cannot do it. Not yet. That's when I get angry at this fictitious John, or is it with myself for not having even an iota of John's determination to carry on without his wife? Is this a gender issue, where women are more likely to give up everything for their mates? Perhaps it is. I am fairly certain that if the tables were turned in our family and I were the sufferer, my husband would NOT give up everything to take care of me. Our early days of childrearing taught me that; Michael's life, apart from giving up a few parties and enduring a few sleepless nights, changed far less than my own. No, if he were still physically and mentally well, he would no doubt be working and fully immersed in his sports, his defining activities. In fact, during those most rigorous years of childrearing, Michael actually travelled far more for business, something not altogether coincidental, I suspect.

On analyzing my motives, I believe they are pure. I cannot bear to think of Michael suffering in institutional care which has only been his experience thus far. In recent years there have been no positive moments of separation from me, except for those spent at home with a caregiver, so I can only believe that would continue to be the case. Some have wondered if he might "get used to it" but past experience has taught me that his condition of extreme psychosis worsens with time. Part of my reluctance is an unwillingness to knowingly subject others, albeit professionals, to his inevitable violence and irascibility when I know he is calm and happy at home with me. It would be a cruelty to all concerned, including me who would undoubtedly be called upon frequently to calm the wild beast. At least, that's how it has played out every other time.

Perhaps my anger was just an expression of the injustice of this disease, of any disease that affects an entire family so completely and mercilessly. I was angry that John could walk away and I cannot. I was angry at Michael's complete and utter dependence on me alone. I was angry because it's Saturday and another long quiet weekend with the television blaring. I was angry and wondered if I should give up the sometimes painful stimulation of reading and just succumb to the numbing boredom.

Mirth and Meditation

2011-08-18T20:58:00.000-07:00

The bedtime ritual at our house is immutable. That is the secret to a successful, peaceful night, as all parents and caregivers well know. To change a single step can spell disaster or at least supreme annoyance and frustration.

Tonight was a usual night. At ten o'clock Michael shuffled into the bathroom to perform his nightly ablutions. Only a few falls on his way this time. Then a short shuffle into the dining room where his bedtime medications await, another essential component of the peaceful night. Usually he needs to be helped through this process, his tired mind unable to remember the few steps required to take his pills. Then it's off to bed.

I have pared down the nightly ritual considerably from when I first started all this a couple of years ago. By bedtime I am restless or tired and ready for some much needed time alone. So I have dispensed with the book reading and now only recite a couple of prayers, trying hard to focus on meditation and not bolting impatiently out the door.

All was going smoothly until a loud bang echoed through the night. A local had decided to let off a few firecrackers or else someone was discharging a firearm (not unheard of around these parts, especially from bedroom windows during hunting season). I was betting on the former. It's a fairly common occurrence in our neighbourhood but usually the immediate locals are too impatient to wait until dark, somehow finding daylight explosions more fun.

Now, my dogs are terrified of this particular noisemaker, especially if it's dark. I had just gotten Michael into bed and was about to cover him lightly for the warm night when the bang occurred. The dogs, who sleep just outside Michael's room, started madly scratching at his door. Oh, all right, tonight you can come in, but just for a while.

Both dogs charged in, momentarily forgetting their fear in favour of sheer joy at being allowed into hallowed territory, not believing their good fortune. Much dancing and hopping about, with tails wagging madly.

Prayers are the next step in a peaceful preparation for sleep. I pull up a chair next to the bed, recite the prayers, then slip out for the night. Here's how successfully that went tonight:

"I bear witness, O my God"-snort, snort, snuffle, a giggle from Claire - "that Thou hast created" -LOUD horking of nasty hairball - "me to know" - pant, pant, pant, whine - "Thee and to worship Thee." - Claire's shoulders shake with laughter, trying hard to concentrate on the solemnity of the moment - "I testify, at this moment" -scratch, scratch, scratch - "to my powerlessness" - loud guffaws of laughter from Claire who must breathe deeply for about a minute to refocus, and then VERY quickly - "andtoThymight/tomypovertyandtoThywealth/ThereisnoneotherGodbutThee/theHelpinPeril/theSelf-Subsisting" - PHEW - then Claire's total riotous collapse.

The dogs take this mirth as their cue for general silliness. The smaller one tries to leap onto Michael's bed but has miscalculated with the security bars in place for the night and finds himself dangling then falling backwards onto the floor. He retreats under the bed, feelings and stomach no doubt bruised. The bigger one continues his anxious heavy breathing at my side, gradually settling as I stroke him with my foot.

The ninety-five meditative Allah-u-abha's I recite each night, which have become Michael's calming lullaby, I managed to get through by sheer willpower and no further explosive laughter. Finally I was able to lure the dogs back out to their own beds with the promise of a cookie and left Michael somehow settled for the night.

God loves a good laugh, I figure. Besides, it was the first moment of wild, silly mirth since my meltdown a week ago. It felt like the veil had been lifted.

Hurricane

2011-08-16T12:36:00.000-07:00

A few unexpected shudders of tears, nothing I couldn't control, only the usual quiet murmuring of sadness. I locked eyes on the television screen banality to banish the now increasing babble of my brain.

Rolling waves rushed in, washing rhythmically over the shore. Still controllable, a nice rainy day feel.
But that was just the warm-up for the storm, a violent, unexpected, pummelling gust. A howling, moaning wind tore through me. A roiling, merciless ocean poured out of me. All life around me trembled from the force of the outburst; a wild horse kicking, bucking, running amok.

Then a gentle hand of God lay on my body to still the torrent. The storm weakened, the waves ebbed,
my body left ravaged and beaten, emptied and cleansed.

An Anniversary

2011-08-07T13:31:00.000-07:00

We are marking a significant anniversary this month; at least, I am. I realize I may be jinxing it by announcing it a bit early - by announcing it at all - but the end of this month will be a year since Michael was released from hospital the last time. Now this may not seem that important to the casual observer, and I'm fairly certain Michael has absolutely no awareness of its significance, but to me it is huge. An entire year without a single visit to the hospital is a record for Michael over the past several years. And I intend to keep him out.

As you are no doubt aware from your patient reading of my accounts, the past six or seven years have been defined by our hospital visits. And there have been many: a heart attack, suspected heart attacks, a mini-stroke, a kidney stone (affectionately dubbed Pierre), bowel obstruction, weird breathing issues, psychotic melt-downs. That's not counting the many trips to Montreal hospitals for those dastardly consultations for Deep Brain Stimulation. In short, rarely did a couple of months go by without a visit to our friendly healthcare professionals whose gentle natures and kind smiles turned brittle and wary over repeated visits as they came to recognize my dear husband, knowing that his arrival guaranteed a turbulent shift.

It is thanks to the support of a wonderful team of nurses and a doctor assigned to Michael's home-care that we have been able to keep him safely out of hospital. It is also a recognition on the part of all those concerned that my husband's wellbeing is seriously endangered the moment he crosses the threshold of these institutions and that, no matter what befalls him from now on, he is far better being treated at home than abroad. Of course, if he were to break a limb, heaven forbid, I will have no choice but to take him back, but for almost everything else - and I mean everything else - we have all agreed to keep him comfortable and happy at home, no matter what the consequences might be. With someone whose mental state is now so very fragile, I have come to realize there are worse things than dying comfortably - and perhaps prematurely - at home. I have become a firm believer that Quality is now preferable to Quantity.

This past year, as you know, has not been without its challenges even without the hospital visits. Many times I have had to phone the on-call nurse to consult on urinary tract and breathing issues, but each time, if required, a prescription has been dispensed with a nurse sent out to check Michael, then report to the doctor. Have I said yet how grateful I am to these kind souls who brave nasty weather and late hours to come to our door, always with a smile and a soft manner? Never has Michael lashed out at one of these valiant home-visit nurses and yet the same cannot be said of their hospital counterparts who may still bear the wounds from physical and verbal attacks thrown by my normally gentle husband.

I pray that Michael will one night just slip away in his sleep with only calmness and serenity in his soul. I have seen too many of his nightmarish delusional attacks accompanied by devilish hallucinations to wish that kind of fear on anyone at their end. And I know that is exactly how he would leave this world if he were to spend his last hours in a hospital. I pray, too, that I can hang on long enough to grant him that kind of peaceful departure whenever it might come.

A Medical Interlude

2011-07-28T17:58:00.000-07:00

Lately, Michael's blood pressure has been playing a dangerous game of yo-yo with wild ups and downs. I usually take a reading a few times a month at different times of the day, then take an average of the readings to make sure that overall he is within the normal boundaries.

Michael was diagnosed with hypertension more than thirty years ago, before I met him. A battery of tests was performed showing no definable cause. He refused pharmaceutical intervention at the time, but agreed to be monitored closely for a while. With dietary changes, such as a reduction in his salt intake, things levelled out. It was decreed that he probably suffered from white-coat syndrome since his blood pressure normalized when he was able to visit the less threatening nurse at work for a few months, rather than the doctor's office.

Over the years of our marriage, Michael was cavalier about his health, rarely visiting a doctor, so the blood pressure went unmonitored. I was aware of the situation and did my best to provide low sodium, low cholesterol foods. He seemed to be healthy - before the diagnosis of Parkinson's disease in 1994, that is.

Then in 2006 there was the mild stroke. When his blood cholesterol and blood pressure were assessed, both were found to be high, so medication was prescribed. It was at this point that we became more serious about monitoring the blood pressure, so a home kit was purchased. Medications were adjusted accordingly, especially after the heart attack in February 2007. At that time, drugs for angina were added, and medication doses remained stable until recently.

I started noticing a drastic drop in his morning blood pressure readings, so, in consultation with the doctor some months ago, I reduced the diuretic he was on by 50%. Things improved slightly, but orthostatic hypotension was becoming a serious problem. For somebody with mobility and stability issues already, the added instability caused by this drastic reduction in blood pressure on standing can be serious.

But lately the daily readings have been extremely erratic, occasionally dangerously high (systolic in the low 200's), at other times bottoming out to 75/58 or lower. The resulting unsteadiness with the very low readings was alarming, not to mention the accompanying risk of dangerous cardiac issues. Another call to the doctor. My instincts were to eliminate the diuretic and reduce the drug Amlodipine (a hypertensive and angina medication) by 50%. The doctor concurred. Immediately, the mild swelling of the feet disappeared, a common side-effect of the Amlodipine, I discovered. Also the blood pressure readings rose to a more normal and fairly consistent 110/80.

The doctor mentioned that blood pressure (heart functioning) can be impaired with dementia. Curious, I started researching and discovered an interesting study in the Journal of Neurology, Neurosurgery and Psychiatry, vol. 78(7); July 2007, entitled "Autonomic dysfunction in dementia". In the study, patients with Alzheimer's disease (AD), Parkinson's Disease with dementia (PDD), dementia with Lewy bodies (DLB: a more severe and fast advancing variation of PD), and vascular dementia (VAD: caused by a series of small strokes) were studied.

The results were interesting: In all cases some autonomic dysfunction occurred, but it was particularly common among Parkinson's and Lewy body dementia patients, with the greatest severity seen in those with Parkinson's disease. This means that all of those bodily functions that function "largely below the level of consciousness" (Wikipedia) such as heart rate, blood pressure, digestion, respiration rate, salivation, perspiration, dilation of pupils, urination and sexual arousal, can be severely impaired. The study found PDD and DLB patients had considerable cardiovascular autonomic dysfunction, with PDD showing "significantly more impairment than DLB in some autonomic parameters", and VAD and AD showing limited evidence of autonomic dysfunction. However orthostatic hypotension was common to all.

The autonomic nervous system is divided into two subsystems: parasympathetic and sympathetic. The parasympathetic nervous system (PSNS) controls "rest and digest" activities such as salivation, lacrimation, urination, digestion and defecation. The sympathetic nervous system (SNS) is responsible for the stimulation of the activities surrounding the fight or flight response (Wikipedia).

I have known about the all-encompassing effects of this disease on the body, but this study gathered together all of Michael's symptoms under the one umbrella of a dysfunctional autonomic system that the other diseases do not display, at least not as severely. This explains the constipation, the urinary incontinence, the wild blood pressure and heart rate irregularities, and the drastic breathing problems, all seemingly unrelated but now clearly part of a single malfunctioning autonomic system. I am guessing it might even be responsible for much of the anxiety and extreme fight or flight responses Michael experiences at times. The brain is spinning helter-skelter, with none of its usual controls in place. It makes me wonder if the early blood pressure issues that were maybe caused by anxiety, in fact most of his seemingly unrelated symptoms over the years, might be directly attributable to the Parkinson's disease. One thing is clear: the more we learn about this disease, the easier it will be to predict as we become aware of early signals. For example, it is already well known that the loss of sense of smell together with constipation and depression might be an early indication of PD even before any motor degeneration is evident.

I am guessing that as this disease advances, we can have every reasonable expectation that all of the systems that have already shown to be dysfunctional will continue to degenerate, especially as we are seeing fairly rapid cognitive decline now; a new development, for instance, is that he must now be reminded how to take his pills each time. Careful monitoring of medications is essential, not because we can fix these problems but we might be able to reduce their severity by removing those drugs that will exacerbate the lowering of the blood pressure and the risk of even more severe falls, "a major cause of increased morbidity, institutionalization and mortality" (JNNP, July 2007).

Forewarned is forearmed, I suppose.

High Fidelity

2011-07-25T03:45:00.000-07:00

"I'm afraid you will leave me," was the surprising and unusually articulate response to a probing question I posed yesterday to determine whether there was any definable reason for Michael's increased withdrawal and fatigue. Frankly, I expected a more mundane answer: a virus was lurking or his stomach hurt. But I have learned that, even if it is something as simple as a mild cold, that can be enough to unhinge his thinking and push him into the depths of paranoia and delusions. And render him oddly articulate.

I reassured him, somewhat sourly and not as gently as I should have, that I have no intention of going anywhere. I have stuck it out this far, right? Besides, I'm not the one who is leaving. He is. Has. The Michael I knew and married left me a long time ago for the demanding and unforgiving new mistress that is Parkinson's Disease. I have simply been relegated to the post of Chief Cook, Nurse, Housekeeper and General Factotum. On occasion the old Michael will emerge, but that person has almost completely gone now and only surfaces unexpectedly, rarely and usually in the company of others, not just for me.

There was one occasion, in the throes of one of his many psychotic crises, that he actually accused me of having an affair. If he hadn't been so ill, I would have been highly offended but instead I let out a loud guffaw at the silliness of such an idea. Even if I wanted to, when on earth would such an occasion present itself, let alone a willing partner in crime? My thirty-one years of marriage have been devoted to my children and my husband - and happily so - but it has been a busy life, affording no opportunities for clandestine affairs, especially during the past two years of very intensive care.

But his comment, quickly forgotten by him, rattled around in my brain long after. Michael and I, over the years, have had an uncanny connection; finishing the other's sentences, sensing things before they were articulated. Michael even went into "labour" with me the first time. Most long-married couples experience this, I am sure. I don't think I am particularly good at hiding my feelings either. Perhaps everyone can read me like a book. Nevertheless, I started to think about it and felt twinges of guilt because recently my mind has been stepping out.

Lately, as reported in an earlier post, I must engage my fantasy world to assuage certain longings. During my conscious, waking hours, I can easily summon the ghost of my relationship with Michael. But it is during my nocturnal subconscious wanderings that I am seeing the change. Where, until recently, my dreams only ever involved my husband, now I am summoning other faces and bodies, some achingly familiar. I awaken feeling sad, and though I can in no way control where and with whom my subconscious decides to travel while I sleep, I am still left with a sense of my own betrayal. I miss intimacy terribly, often painfully, but I know in my heart that I would never consciously betray my bonds with my long-suffering Michael. Only in my dreams am I doing that.

So, rather than Michael merely expressing his own dark irrational fears, perhaps he is still finely tuned to me, sensing, at least on a subconscious level, that I have already taken a dangerous step away from him. And maybe I am preparing myself for the ultimate separation.

Midsummer Madness

2011-07-18T18:54:00.000-07:00

Bold steps were taken this weekend. Bold steps out the door and down the highway.

The approach of summer had had me worried before the season even got going. Dread of long quiet hot days imprisoned at home stuck in my heart.

Michael's condition has me more alert than usual these days. There have been some dramatic plunges and peaks in his blood pressure, making me wonder how on earth he functions even the little bit he does. I have no real reason to suspect there is anything wrong, anything more serious than the usual, that is. Just misplaced worry and anxiety perhaps, leaving me feeling mildly manic.

So this week I got tired of my nurse's vigil. When a discussion with the In-laws arose about how to celebrate Michael's mom's 87th birthday, my usual tendency to take a cautious and isolationist approach by offering to have a quiet tea here took a back seat, and I decided I wanted a fast drive, somewhere, anywhere, instead. Michael's brother lives on the other side of town, a 45 minute drive away if the traffic is good. But a pool party was on offer and for once I agreed. What the heck. Even if the worst thing happened, how much worse could it be away from home and in another province?

Caution was thrown carefully to the wind: wheel chair was stuffed into our tiny car; bathing suits and towels were packed (ensuring that a floatation device existed at our destination so my husband wouldn't drown), drugs for twenty-four hours (you never know), a bottle of water, extra diapers, change of clothes and bandaids. Sound familiar to any of you who have travelled with children? With all that taken care of I was ready for a wild and wacky time.

Our arrival at the pool party (which was a very small gathering of family) was spectacular, one of Michael's best. He lurched his way down a narrow path to the back of the house, falling hard on the stone and ripping open his knees. Nothing unusual in that. The path ended at a gate that opened to the beautiful patio and pool in the back. Michael negotiated the gate well enough and I gave a premature sigh of relief, thinking we were home-free for this stage at least. With a chair in his sights, he lunged toward it but fell into the small glass-topped table around which everyone had gathered. Sangria-filled glasses flew free and smashed onto the patio with the table wobbling precariously, threatening to tip over. Chairs collapsed as Michael fell to the ground, spreading his blood liberally around. Shocked faces from family members who never see these displays. I set to work bandaging knees and mopping up blood, quietly satisfied that they were getting a look at how life really is.

We never made it into the pool. Too much effort. Michael's meds ran out quickly so he sat rigidly and silently in a chair, blank-faced and withdrawn. I swilled what I thought was alcohol-free Sangria only to find my head spinning after a sip or two, my first taste of alcohol in a very long time. I discovered that alcohol makes me very chatty, even tiny amounts, and inhibitions drop away. I do not drink for religious reasons but I suggest that those of you who do should take an extended booze holiday sometime just so you can relive that heady first sip feeling as soon as you resume. I immediately switched to soft drinks, needing to keep all my wits about me.

The rest of the day was incident free. Feeling emboldened by the relative success of the outing (nobody died), I thought about the possibility of a day-trip to Montreal, a mere 200 kilometres from here. Michael would have no more to do than the previous day: sit in the car there and back, get into his daughter's second storey apartment and stay put till it's time to go home. No discussion about this embryonic plan with Michael. I know too well how that works; he'd work himself up into a frenzy and disappointment would prevail. No, I've learned my lesson. When feasible, last minute attacks are the best. So this morning, while he munched on his cereal, I quietly packed the same bag I had the day before, only this time with enough drugs for a week (you never know) and without swim suits. As his head started it's morning dip into his cereal bowl, signalling the time for a nap, I issued the orders: bathroom, shoes, cane, car. In minutes we were on the road, the hosting daughter hastily informed (she and I had sketched out tentative plans in secret the day before).

I love road trips. I have a healthy collection of music on my ipod which immediately got jacked up. Once the open highway was reached, I let her rip. Now, keep in mind I own a small, rather spineless little Hyundai Accent but I am a master of fantasy. Shades on, music blasting, countryside zipping by.The world was my oyster, as they say, whatever the heck that means.

Michael sat in dazed, slightly panicked silence. I had anticipated he would sleep all the way but nary a nod either direction. I ignored what looked suspiciously like white knuckles gripping the door. I wasn't driving THAT fast.

Soon it was time for medication: skillful uncapping of the pill bottle while clutching the water bottle between my thighs, one hand on the steering wheel. The madness of Mick Jagger's "Midnight Rambler" pulsed through the car. Drugs successfully administered. There's probably a law against such practices; at least, there should be.

The journey was mercifully uneventful . On arrival in Montreal, there was a moment of panic as I settled him onto our daughter's bed for a snooze but I assured him he would be fine soon. If not, there was an entire arsenal of drugs at hand if necessary. However the big guns were not needed.

We arrived home eight glorious hours later. What a great weekend. Michael collapsed in an exhausted heap back on the couch and snored through a replay of the Women's FIFA final game (Oops, I forgot to tell him he'd miss that). It might take all week for him to recover. His breathing on our return home was disturbing but I dismissed my worry. Whatever happens, it was worth it.

Nameless

2011-07-02T20:45:00.000-07:00

"What's my name?" has become my fairly constant refrain the last couple of days. It started two nights ago at the end of a good movie (I won't disclose the title for fear of ruining it for others) where the main character is afflicted with Alzheimer's disease and cannot even manage to figure out what to do with his fork. Though I had been enthralled by this excellent new film, Michael was distracted throughout, concentrating more on making pen squiggles on my bare legs, a favourite activity of late and not altogether unpleasant (except when the ink refuses to flow so Michael then works hard on my tender skin to get it going). At the end I dissolved into tears, the situation in the movie being all too familiar. And maybe a little bit from the pain of the pen nib.

He must have been paying some attention because when I tucked him into bed for the night he felt the need to recite the names of his children. The first two, born well before the onset of any of his Parkinson's symptoms and even longer before the arrival of any of the cognitive decline, were easy to remember, as are all his old memories. But it took him a few seconds to recall the names of the youngest two. At least he remembered he'd had four.

Then I asked him my name. Blank. Hmmmm. He stared at the ceiling, willing my name to float back into his memory. Nothing. I waited a minute or two then gave him a hint in the way of another question: "What's your name?" No trouble there. Michael. And then in the next breath- ah there it is - Claire.

I wasn't terribly disturbed by this. After all it has happened before. The difference this time was that he had been otherwise untroubled throughout the evening. In the past when he has forgotten my name, he has been in the throes of some crisis, physical or otherwise, that messes with his grasp on reality and plunges him into delirium where all his brain circuitry gets muddled up. This was a new development or maybe I had just never asked the question before under these circumstances. Maybe he never knows who I am.

The next morning I quizzed him again. Another long pause before he could recall my name. I suggested that he might want to work on that, maybe check the engraving on his wedding ring. It might be important to remember the name of the head nurse, and no, I don't want to kiss you right now.

I don't really mind, I suppose, but it does seem to be a symbol of the all-encompassing nature of this disease. I sometimes feel as though my whole identity has been sucked into the black pit of Parkinson's, that I only exist in his mind as part of who he is and what his needs are, that whole Adam's rib thing. I mostly have a pretty good sense of my identity and independence, such as it is, but it has occurred to me that when - if - there is a life beyond Michael and this disease, will I still be able to crawl up out of that deep, dark hole into an existence of Claire or will I have been completely subsumed by all that is Michael?

Floods and Arks

2011-06-27T17:52:00.000-07:00

Last December I had a series of dreams involving large amounts of water and violence. The general theme of the water dreams was always that of being swept away in a storm, losing control of whatever situation I was in but always in the most literal way: a house I was in was lifted from its moorings and carried away on a deluge, or in another I was swept to safety from my flooded house on a raft or door down a street that had turned into a river, with people waiting to rescue me and my family at the end. There was another with gunfire from which I was able to hide.

Never was I alarmed by these tempests. In fact the prevailing emotion I had was of control and a sense of challenge on how to deal with the latest calamity. And never was I trying to resist the tide either; I was controlling what I could, protecting myself and my family successfully in an otherwise uncontrollable scenario.

On analyzing these vivid, unforgettable dreams I was puzzled at first, thinking they were just an indication of an emotional flood I needed to experience. Then a terrible tragedy occurred where a dear friend was killed in circumstances that mirrored the events in the trilogy of dreams, at least symbolically. At first I thought the dreams had been prophetic, preparing me somewhat for what did happen a few days later. And these dreams did comfort me, seeming to point out the inevitability of the tragedy that befell my friend. You might think I was "dreaming" about the meaning of these visions and well I might have been. I don't think it matters whether or not they were prophetic; their purpose was perhaps only to give me some comfort at a difficult time.

But lately I have been thinking about them again as we faced a literal flood of our own this weekend, indeed as many people the world over have been experiencing. We had the rainstorm of the century over a twenty-four hour period that left many houses if not completely destroyed, as in one case I heard about, then at least severely damaged. Very few people in the swath of this storm were left untouched. At the very least, most of us dealt with badly flooded basements. Many were left feeling unhinged and overwhelmed by the deluge, struggling with the physical demands of cleaning up a huge, soaking mess in the aftermath. Roads were swept away in the torrents that roared down streets and driveways, including our own, though ours mercifully remained intact. At one point I looked out and our entire acreage was nearly underwater. A lake had formed where there had been lawns, roads and ditches. My neighbour wryly noted that if she had been quick about it, she could have stuck up a "For Sale" sign, claiming waterfront property. I noted that if the rains had continued she'd have had a houseboat for sale instead.

The flood, of course, was nothing on the scale of those suffered by others this year, such as in North Dakota or along the Richelieu River in Quebec to name just a couple. But it took us all by surprise since the forecasts I heard were calling for "thunder showers" and "drizzle", not the 120-160 mm of water that fell over a couple of hours in parts of the region. More along the lines of "monsoon" I would think.

We were mercifully lightly touched compared to many, but there were some anxious moments as the water poured into my house through a basement doorway the first night, and on the second day, the power failed for two and a half hours, rendering the sump pump in our basement useless. With the water table so high, it was only a matter of minutes before the water rose up and spilled onto the basement floor. My son (who had rushed home early from work) and I made a futile attempt to bail out the sump pit, hauling buckets of water well away from the house, but the effort was like a scene from the "Sorcerer's Apprentice". The water rose up faster than we could manage. Finally I declared it was useless to continue and sent my son out to find a generator at a hardware store, thinking that, otherwise, the entire basement might fill with water before the power came back on. William drove into the city during another heavy bout of rain, tackled dreadful traffic, all the while wondering if the roads might be washed out upon his return, but he did successfully snag a generator for us. As it happened, the power came on before he returned and the sump pump resumed the heavy task of pumping out what was now a couple of inches of water covering the entire basement floor, far less than I had prepared myself for. It took us hours to push the water toward the hole, vacuum up the residue, then set about drying the floors with an assortment of old sheets, towels and blankets I had kept for just such occasions (we've had various water mishaps in the past involving broken sump pumps and a malfunctioning washing machine). In total, with the two days of flooding and subsequent clean-up, we put in over three days of hard work. But, having had a few smaller water calamities in the basement before, I had flood-proofed it as well as I could so that nothing of value lay close to the floor. Since our basement is unfinished, the clean-up was fairly quick compared to neighbours whose carpeting and belongings are still being dragged out of their homes and insurance claims are being made.

Apart from a few moments of despair, I remained calm, just as I did in my dreams about floods, not that the danger in real life came anywhere close to the frightening scenes of my subconscious. It helped that our very competent son was on hand for most of the mess and without whom I would have had a far more difficult time of it. Not the least of my worries was Michael who, in the past, has had emotional washouts over similar calamities. I needed to keep him calm and reassured that all was under control. Perhaps it is a sign of how advanced his cognitive degeneration is that he was singularly unperturbed and seemed to approach it like a young boy splashing in the water. At one point I found him outside digging trenches in the mud and I decided that since he was neither doing himself nor our situation any harm, he could carry on. At other times, he quietly sat watching television (when we had power), as always. The only alarming thing for me was hearing his falls from my position in the basement beneath him. I hadn't realized how thunderous it is when he tumbles, and each time I held my breath to hear him get up safely again.

What struck me about the entire calamity was how good I felt when the sun finally emerged and I could declare there was nothing further to be done beyond keeping the dehumidifiers going non-stop to dry things out. In the process of the clean-up, every nook and cranny of the basement was exposed and dried out, and sometimes a problem was revealed that needed fixing, such as my discovery that the dryer hose was broken. All kinds of soul-cleansing metaphors and images of bringing light to dark places sprang to mind during my rigorous clean-out. The increased isolation I felt for those few days of all-consuming work evoked thoughts of the Biblical family isolated on an Ark and the joy one must feel at the end of such an ordeal, upon hitting solid ground. It felt like we had emerged from some spiritual darkness swept away by the drying sun. If nothing else, I at least now have a cleaner basement floor and maybe even a slightly stronger spirit.

These Hands

2011-06-20T13:03:00.000-07:00

My hands have served me well and continue to do so. But they are stiff and are becoming gnarled and enlarged. I have one that holds my witch's finger, so bent at the knuckle. Arthritis, I'm told. I'll just have to live with it. The pain is manageable, just annoying. Mild medication helps if I need them to be reliable and not give out on me, not feel like shattering glass if I bump them. On an otherwise strong and healthy body, these hands, which were once my strength, are becoming my weakness.

These hands are my history.

These hands let me play as a child, turn my jump rope, dress my dolls, toss knuckle bones and jacks. They have grasped the chains of the swing that carried me high so I could leap off into the sand below, my hands cushioning the fall. They climbed trees and shinnied up a playground pole. They landed on the hard gravel from a wobbly bicycle and brushed off my torn knees. My hands knew only blissful childhood freedom.

Before computers, when all had to be written in a neat schoolgirl hand, my right middle finger developed a large calloused bump from the pressure of the pen. These hands have felt the heft of many books.

These hands have always wanted to work. They have hauled heavy loads. They have shoveled driveways and skating rinks, dug deeply into garden dirt, planted flowers, vegetables and trees; they have pulled millions of weeds, raked and mowed lawns, pruned trees. They have carried and stacked huge piles of wood for winter burning, then rubbed sore backs. They have been speckled with paint and have assembled and taken apart many things. They have knitted sweaters, socks, toys, blankets; they have sewn a multitude of small clothes. They have hauled and sorted seemingly limitless bags of used clothes for charity work.

They have held and been held. They have gripped in ecstasy.

These hands have held four babies at the breast, mourning a lost fifth. They have dressed small children, changed diapers, built tall block towers, laced skates, lifted small bodies. They have taught the three R's. They learned to do many things at once during busy years. They have cuddled and stroked while holding the story book. They have comforted one while wagging admonishment at another, and sometimes, regrettably, they have smacked a small bottom. They have cooked countless meals, washed dishes, floors and windows, and enough clothes, bedding and diapers to make a mountain. They have cut wispy hair and twisted many braids; they have bathed and towelled dry little people. They have bandaged injured elbows and knees, then wiped away tears. They have nursed through many a night of sickness. They have carried the heavy belongings of now grown children into new lives.

They have trained four cats (not well) and two dogs (more successfully). They have sunk into soft fur.

These hands have helped me glide across the river during solitary swims. They have gripped bicycle handlebars and ski poles and racquets, lifted weights, stretched in yoga and Tai Chi, thrown a crooked bowling ball, slugged a baseball bat, bounced on a trampoline with joyful children. They have laced my own skates as well as those of smaller feet.

As adult hands, they learned to drive, to shift the gears of the car and of life. They learned the new technologies, at least a little bit, allowing me to write, to listen to music in my own little space, to learn about the world and stay connected to it.

Untalented hands that recognize and appreciate talent in others, they have applauded loudly and enthusiastically.

These hands have clasped and consoled the hands of the dying.

They have loved, comforted, shaken in anger, caressed in tenderness and passion. They have held my tearful face and that of my husband; they have pounded the floor; they have railed at God; they have been pressed together in prayer, gratitude and submission. They have held my stricken husband and calmed his terror. They have steadied his lurching Parkinson's body, lifted him from the floor when he falls, propelled him in a wheelchair when he finally submits. They have cleaned him in ways I thought I'd only have to do for my children. They have bathed him, dressed him and tied his shoes and skates. They now attend to his every need.

These hands are tired, in need of rest. But I fear the cessation of busyness. I fear they will seize up completely when no longer needed.

I would rather endure the pain.

Stone walls and iron bars

2011-06-14T05:52:00.000-07:00

Stone walls do not a prison make,

Nor iron bars a cage;

Minds innocent and quiet take

That for an hermitage;

If I have freedom in my love

And in my soul am free,

Angels alone, that soar above,

Enjoy such liberty.

Last stanza of "To Althea, from Prison" - Richard Lovelace

Moving day. Daughter number three, who has been living away for a few years, has moved into a new apartment in Montreal and has taken the rest of her possessions from home with her. A great big van was booked for the occasion. We packed up in the morning, leaving Michael behind for the day with his caregiver, then drove off to Montreal.

We have done this before, she and I, to and from university. In fact I've repeated this job several times with all but the youngest so far. It is an expedition I rather enjoy, a special bonding time with the child who is leaving. When the move is complete and good-byes are being said, there are usually more than a few tears as yet another one flies away to independence. With this daughter already well launched into her life in Montreal - three years of university and now a full-time job - there was only happiness this time for this independent young woman. I have shed my tears for her already as I have for her sisters.

At the end of the month comes the last move. Alas, I cannot assist much with this one because our son is moving to Toronto for a job promotion, and where a move to Montreal is an easy day-trip from here, not so a trip to Toronto. I've done it twice before for the others and it requires at least an overnight commitment, something I can no longer do. I will have to content myself with assisting all I can from this end to make his departure as smooth as possible.

This is my baby who is leaving. Though we rarely see him with his busy life, it is the idea of his never being here that I struggle with. And the knowledge that this is the last. The nest will be well and truly empty.

I'm imagining all the vacant rooms we will have, two of them already only filled on holiday visits. I am trying to envision other uses for them, but it is a relatively large house and Michael and I need only a few rooms. Michael's life is confined to the main floor which has been fully adapted to his needs. I occupy my sanctuary on the second floor but only really use three rooms: bedroom, bathroom, office. That leaves three others, large gaping holes.

Will we stay here? Is it worth keeping a large house for the rare occasions that all the kids are home together? These are questions I do not need to answer yet. A move for Michael now would be catastrophic. Even slight change can be life-altering for him, so it is impossible to consider such a thing, unless, of course, something happens to me and I can no longer manage the work.

He loves our home, as do I. We have lived here twenty-two years and have truly made it our own. Besides, it is now so well adapted to his needs, it would be difficult to find anything comparable. It is our own small paradise, nestled in a little village between the Gatineau hills and the river. Over the past year, with little else to do, I have been able to cast my gaze farther than my indoor domestic duties, which were always my chief concern, still are. I have been able to focus on the outside, restoring it to the sanctuary it was before the years of adapting to the harsh new reality of Michael's illness left it sadly neglected.

Financial constraints might be a deciding factor for a move but for now we are secure. Michael collects a decent pension from a full career with the federal government, and, though it isn't a princely sum, we have always lived frugally and continue to do so. I am grateful I do not have to concern myself too seriously with money matters, one less thing to worry about. I manage all our finances, of course, and I am confident and secure that I can take care of my husband in the comfort we now enjoy for the foreseeable future.

With the long-term financial concerns under control, what worries me more are the short-term issues. With a long summer ahead and both of the youngest truly gone, I am thinking of the increasing isolation and quiet. Laura has always been home for summer jobs, William has always just been here. The walls are starting to feel closer already, highlighting the prison sentence this disease has imposed on us both. At least it is summer and the large yard allows us to expand our living space. So, though we are confined to our property most days, it is a prison-paradise for Michael to wander through and enjoy when his medications allow. I believe it gives him a sense of peace and stability that I too enjoy.

The Long Dead End Road to Surgery

2011-06-04T14:18:00.000-07:00

Last week two references to Deep Brain Stimulation were made to me on the same day, prompting me to revisit a piece I started to write over a year ago and couldn't complete. My emotions on this difficult experience were still too raw at the time to allow a measured writing. Perhaps now I can do the subject justice.

Deep Brain Stimulation (DBS) has been fairly successful, not in curing the disease, but by increasing mobility and allowing the patient to function on fewer Parkinson's medications. It is not a static procedure; it allows long-term post-surgical adjustments to be made as the patient continues to degenerate, in theory allowing an expectation of stasis of symptoms at least.

It has been used to treat PD for well over ten years and was discovered almost by accident during a procedure called pallidotomy that has now fallen into disfavour because of its short-term efficacy. Very simply, during a pallidotomy, a small lesion was created in the brain, killing a tiny amount of brain tissue. This destruction of tissue helped to minimize the debilitating dyskinesia caused by the Levadopa drug therapy. While performing this surgery, it was discovered that the electrodes or probes being used to locate the optimum location in the brain for "frying" were actually causing an immediate improvement in the patient. (The surgery must be performed with the patient sedated but awake so he can give feedback to the surgeons). The pallidotomy, which permanently destroys brain matter, was replaced by DBS, which does not.

The description of DBS, as it was given to us, reads like something from the script of a Frankenstein movie or the Bionic Man. The surgery at the Montreal Neurological Centre lasts many days and the patient is also mildly sedated but awake for most of the operation. The first thing that must be accomplished (apart from the months of preparatory assessment - more about that later) is the fitting and construction of a metal frame in which to secure the head, rendering the patient's skull completely immobile and allowing the surgeon to map the patient's skull and brain. The next step is to bore holes on either side of the skull with something that eerily resembles a Black and Decker drill, then carefully implant electrodes into the brain. That takes two days of three to six hour procedures on each side of the brain and the patient must be unmedicated the entire time. The third day of surgery, the only day under general anesthetic, is to implant the battery pack underneath the collar bone and attach the electrode wires that run subcutaneously from the electrodes, through the neck and down to the battery box. The patient is then monitored for several days to make sure he is stable, but the power is not turned on for some time until he has recovered from the surgeries. Then the power is gradually ramped up over a period of several months until the optimum level of juice is achieved. Thereafter a patient must visit the clinic repeatedly for the rest of his life to check for tolerance and to adjust the power level accordingly. Drug therapy must be adjusted too as the patient responds to the treatment.

There are great risks with this surgery, infection being very common and stroke a little less so. There are also, of course, all the risks associated with any brain surgery. The patient is assessed thoroughly for months beforehand to determine suitability. The factors that make a Parkinson's patient a good candidate for this surgery are many: good response to conventional Parkinson's medications, specifically Levodopa, the synthetic dopamine drug that has revolutionized Parkinson's treatments in the past half century; good overall health; good mental health; no deterioration in cognition; a good home support system.

In Michael's case his neurologist had to recommend him for this surgery attesting to his suitability in all the above factors. Once that letter was sent we were to await a summons from the Montreal Neurological Institute, one of the few centres in Canada that offers the procedure. That summons came many months later and the ball was rolling.

The doctor recommended Michael in the early months of 2007, not long after a mild heart attack, suffered in February of that year. The heart attack had followed a minor stroke or TIA in the fall of 2006. These two episodes did not seem to be an impediment to the surgery, at least not in the eyes of the neurologist. At the time of the heart attack, we were gradually weaning Michael off the new drug Azilect (Rasagiline) which had seemed so effective in the first few weeks but then very suddenly, for unknown reasons, Michael was back to his previous levels of low mobility and lethargy, if not even more so. Given the toxicity of this drug, I was reluctant to keep him on it if it was no longer effective. The doctor agreed and we started the long process of weaning. Michael had been completely off the drug for just a few days when the heart attack hit, but the literature warned against any surgery until the body had been free of the drug for a full two weeks. The neurologist, when questioned, denied that there could be any connection between the introduction, and subsequent withdrawal, of this new drug and the heart attack, even though some literature did make a loose one.

You can imagine, then, my terror that bypass surgery would be necessary for Michael. The medical staff was pressuring me to sign permission papers and waivers for such surgery if necessary. I had no choice if he were to go forward with any corrective procedures for his heart. Michael underwent an angiogram, angioplasty and the placement of two stents to open up a nearly completely blocked artery. In the end there was no need for him to go under the knife, but for the entire four days he spent in hospital awaiting those procedures, I repeated my concerns to every single hospital staff member I could lay my hands on to warn them of the problems with this new drug, afraid someone might not read his chart where a warning was written. At one point I think I may have accosted a rather confused janitor who happened to be dressed in scrubs, virtually indistinguishable from the medical staff. All this while Michael was in the throes of an extreme attack of psychosis, the most frightening one he had experienced up to that point. He has since had many equally serious attacks to which we are now all quite accustomed but that first one was most alarming. Fortunately, he has no recollection of the event but for the rest of us, it is seared into our brains.

By late summer of 2007 we were on our way to Montreal for the first of many consultations. We met with a PD neurologist and the surgeon who specialized in this surgery. I had done my homework and was convinced that the cognitive impairment I had seen developing slowly over the years might disqualify Michael. I tried to discuss this with the doctors as well as the deep concern I had over his occasional displays of severe psychosis especially in a hospital setting. My concerns were dismissed. Of course the only word they were willing to consider was that of the referring doctor who had never witnessed these episodes and seemed to have ignored my reports. These two doctors confidently assured Michael he was on his way to a new life and sent us on our way with the promise of immediate follow-up for pre-admission tests. Michael left that appointment buoyed with hope. I left in a rage so overwhelming that I speedily and nearly violently pushed Michael in his flimsy portable wheelchair over four kilometres, all the way back to the train station to make the two hour trip home. I knew in my heart this was a mistake.

Over the weeks of waiting for the next stage, I reminded myself that I am not a doctor and surely these men know better than I. Why would they offer false hope? I calmed down.

The next stage was pre-op preparation: visits with an internal specialist, a physiotherapist, an occupational therapist, a psychologist, then an MRI and blood tests. Things were moving ahead quickly and we made many difficult trips to Montreal, some day trips, some overnight. I planned for the ten day stay I would have to arrange in Montreal so I could be nearby for his entire hospital visit, all the while trying to keep at bay the wolves of serious doubt.

The visit to the internal specialist sounded an alarm bell. Michael's heart condition needed to be reassessed. I was able, by some miracle, to make a telephone connection straight through to Michael's heart surgeon a day or two later. Michael was in for reassessment soon after, another angiogram scheduled immediately. A clean bill of cardiac health was issued. It seemed that the path was being magically cleared for the DBS surgery.

Then everything seemed to come to a grinding halt. Any contact I tried to make with the surgeon in Montreal met a dead end. His sweet, but slightly batty sounding receptionist kept giving me vague but cheerful responses. She couldn't give me any idea how long things might be, yet on other occasions she gave great hope that surgery could be imminent, all the while obviously shielding the great man from my pestering calls. All this took well over a year and a huge toll on Michael's mental health. We put everything on hold, making his surgery the priority, not wanting to miss the call giving us a definitive date, the call that never came. No reasons were ever given for the delay besides vague murmurings about a new fiscal year and budgets.

Finally, in frustration, I tracked down the surgeon on the internet and actually found an email address. I expressed my concern about the debilitating effect the wait was having on Michael and how his dementia was now escalating. But none of this was new, just more extreme than it had been that first visit in 2007.

This was spring of 2009, more than two years after that reference letter was written by Michael's attending neurologist. My email must have penetrated because some time after it was written, I received a phonecall from the surgeon himself asking me to clarify my concerns. I had to stifle a sarcastic laugh. Wasn't that what I had been trying desperately to do for the past two years? Why was he suddenly listening now?

An appointment was made; we were to be in Montreal a week later. Michael was filled with hope. I was not but I kept that to myself. Once again we met with both doctors and yet another cognitive test was issued. The doctors made another grand pronouncement that all my husband needed was the reduction, if not removal, of certain Parkinson's drugs, what they deemed to be responsible for these problems. "You will get your husband back," they asserted. My doubting heart fluttered hopefully for a moment and I set to work administering the new drug regimen.

Several weeks later, time for the new drug reductions to have worked the promised miracles, we were summoned again. The appointment was for April 30. Be there. I remember the date clearly because I had booked an appointment for myself on that day, an appointment for which I had had to wait months. When I raised this issue with the person issuing the summons, she told me I'd have to reschedule my own appointment. Okay. Done. I wasn't looking forward to that first mammogram anyway.

Both doctors were present again. Another cognitive test was administered but Michael failed it miserably. This time the news was bad: Absolutely no surgery, dementia far too advanced, the risks too great. Surprise, surprise. Michael was devastated. I was struggling simultaneously with enormous relief and another attack of extreme anger. I wanted to rip these men apart. My poor husband sat slumped in his wheelchair and announced he didn't think he could go on.

It took me a long time to come to terms with the callous treatment my husband suffered. I know these doctors are compassionate people and are working within a complicated, underfunded and imperfect system, but I wonder if they are aware of the impact these long uncertain waits have on their patients, indeed on their families. I wonder, too, if the wait exacerbated my husband's condition and, if things could have progressed as quickly as was first promised, whether the outcome might have been happier. Or maybe my instincts were right all along and I might have lost my dear man under the knife (drill?) much sooner, or worse, have him return home in a vegetative state, a fate that has befallen some who have undergone this surgery. I have come to realize that such retrospective second-guessing is futile. We have put it behind us now, the writing of this the last nail in that coffin.

*Reference: Blair Ford, M.D., Deep Brain Stimulation for Parkinson's Disease, Parkinson's Disease Foundation, New York, 2005

Diversions

2011-06-01T12:02:00.000-07:00

Hot. Humid. Hazy. A true summer's day. Thank goodness for the heat pump I had installed six years ago that has reduced our energy costs hugely and provided us with air conditioning on those days when it's just too hot to function. Yesterday was one of those days but, as it was the first such day of the year, our log house didn't have time to heat up and stayed cool all by itself, making it a haven from the furnace outside.

Michael is terribly heat-sensitive now, though he still seeks the sun. I have to be very watchful that he doesn't over-exert himself. That's difficult. With advanced Parkinson's disease, every single move he makes requires a Herculean effort, especially if his medications have run out. Every movement now can leave him sweating and raggedly labouring for air even without the added heat.

I managed to keep him in the cool most of the day yesterday, but as late afternoon approached, his most active time of the day, I did urge him to accompany me outside for a quiet stroll around the yard in the shade. I was busy inspecting a small grove of trees I've been thinning when I realized he'd disappeared. Good grief, he can still be so quick and quiet at times.

Inside I found him in the cool basement hunched over an ancient bicycle, bike helmet perched on his head. This poor old bike is past its glory days but it is still the one Michael gravitates to despite a fancy new thing purchased about eight years ago. Michael bought this old girl back in the 70's and has ridden, I would guess, thousands and thousands of kilometres on her. Old and faithful, this was the bike that transported Michael to and from work for years. He spent hours servicing and repairing this old ten speed, lovingly cleaning and touching her up over the years.

But Old Faithful has suffered at his hands too. With creeping dementia, his focus has continued to dog this poor bike and has seen her painted haphazardly, stripped down and put back together in a fashion that will never see her on the roads again. The seat has been removed, not a difficult thing to fix, unless you are Michael and have bent and distorted the appropriate hardware. All in all, she's only fit for tinkering now I'm sad to report.

So when I saw Michael with his helmet on and tire pump out to pump up the tires on this sad relic, I quietly announced supper was nearly ready, attempting to divert his fixed attention from what I guessed was an intention to hit the roads. The diversion lasted only throughout the meal, then back down into the basement he disappeared. I followed him and babbled on about the danger of a bike ride right now, just as his meds were about to fail him, not that I have any intention of EVER allowing him out on his own again for a bike ride. No response from Michael, just dogged concentration. I retreated upstairs to await the inevitable failure of the medication.

Minutes later, Michael is upstairs with helmet still on, now buckled under his chin. He rummages around in his room and emerges with a few pairs of soccer socks and his soccer cleats. Okay, it seems like we've shifted gears or now his intentions are becoming clearer. As he is lacing up his shoes I enquire about his plans. Apparently he's going up to the soccer field on his bike to meet his friends to play soccer. I remind him it's Tuesday, not Friday, the usual night for Old-Fart's soccer. Oh. Now what?

"Let's drive up to the soccer field just to have a look," I suggest, "and leave the bikes behind. It's too hot to cycle."

Okay. The soccer field is just a stone's throw away, a mere ten minute walk from our house, a shorter car or bike ride. On arrival he sees none of his cronies on the fields, just scads of children and their parents. I wonder if he feels any nostalgia for the years of kids' soccer coaching he did with such dedication. My guess is that over those many years of gentle coaching, he probably met most of the community's children now between the ages of 20 and 28.

Soccer was a passion for Michael. He came to it late in life, like most older Canadian-born adults in this country. The first year there was a men's team here in our small town, back in 1994, he was out there willing to learn.

Michael was, still is, a natural athlete and could play almost any team sport. Though he loved his cycling and cross-country skiing, it was team sports that really fired him up. He was a very skilled hockey goalie for decades, coming back to the sport in Canada as an older teenager after three years away in the American south where hockey didn't exist at the time. There instead he tried out for American football despite his tiny frame and short stature until he hit puberty at age sixteen and shot up into a tall but very skinny boy. Needless to say, he didn't make the cut, but his physical limitations didn't prevent him from trying out. He has played basketball and baseball too, the latter with an adult men's team that spent as much time partying as they did playing.

Michael used to throw himself into any sport he played, a kind of take-no-prisoners approach. How he escaped serious injury all those years is a wonder. As a hockey goalie, you'd see him diving and falling for speeding pucks with an agility, even later in life, that bespoke skill and passion. I've often thought that he has been protected from serious injury in this latest athletic endeavour called Parkinson's disease by that former ease and skill that he displayed while flopping all over the ice through many decades of hockey. Michael has literally fallen thousands of times throughout this disease and has never had a serious injury beyond a slightly scraped knee or elbow. I believe that hockey, sports in general, was his best training for this disease.

But there might be a flip-side to the sports too. Recently there has been a frenzy of media attention on the dangers of repeated concussions, especially in sports like hockey and football. In those early days of hockey, Michael's protective headgear was nearly non-existent, and, though he has no memory of any serious dings to the head all those years, perhaps there were a few at least. Having no memory of them could be symptomatic of repeated concussions that would never have been recognized or treated as such. Then there were a few whacks to the head during pick-up football games back in his youth, one sending him to the hospital with a nasty cut to the eye where his eyeglasses had shattered to bits. He was lucky not to lose the eye but there could also have been silent injury to the brain. But most dramatically was a blow to the head during his very first competitive game of soccer where he took an elbow to the skull and dropped like a sack of potatoes, unconscious. There were many more minor bangs to his head as he furiously but inexpertly headed the soccer ball. Knowing what I now know about repeated concussions, it is possible that these many blows to the head caused the neurological damage that led to Parkinson's disease, especially when I think that his disease manifested itself most aggressively right after that knockout blow to the head on the soccer field. As was the case in sports until recently, he got back on his feet and carried right on playing, soldiering on. Experts now tell us that is the worst thing to do after a concussion. Obviously, Parkinson's disease does not develop that quickly - he was already showing early signs of the disease - but I do think it was the proverbial icing on the cake.

In the end last night, there was no cycling, no soccer. Diversionary tactics worked again. But once we were out in the car, I suggested a drive in our beloved Gatineau Park where we used to ski, swim, cycle, hike and picnic so much with the kids. There were dozens of cyclists out on the steep roads, some labouring heavily up the hills. We drove slowly, carefully and wistfully past them all.

What Next?

2011-05-26T06:04:00.000-07:00

Friday night we were settling into a weekend of family. One offspring was home from Montreal and another was returning very late at night from a three week vacation. The other two were only able to pay phone and skype visits.

It had not been a particularly dramatic week for Michael despite some anxiety over the bedsore that had developed a few days earlier. And that was only when the nurse visited after I thought it prudent to alert the medical staff of its existence at least. I had already gotten treatment under control but somehow the presence of medical people always raises his anxiety levels no matter how minor the problem - the main reason I hesitate to include them unless absolutely necessary and I'm not sure why I did this time. I suppose it was a moment of doubt that crept in when I read about pressure sores online and the advice was categorically to alert a health professional.

In fact, the week had been rather positive despite that slightly rocky beginning. After all, Michael outdid himself mowing the lawn on Thursday and repeated the performance on Friday for about five minutes, albeit with frequent falls. On both occasions he came in exhausted and drenched in sweat. Michael, who used to love the sun and would tan to a beautiful mahogany-brown every summer, has become terribly sensitive to the heat now, a function of some of his Parkinson's medications. Profuse sweating is a common problem he suffers in the full sun, so really I shouldn't allow him too much exposure at all. But he does still love it and it's hard to deny him the pleasure of rare Canadian heat.

Perhaps he was dehydrated on Friday night. I don't know. I was rather preoccupied and happy about the arrival of our kids and was probably not paying much attention to whether he rehydrated sufficiently or not after his exertions. Not long after our first child arrived home late in the evening, I became aware that he was spending a lot of time in the bathroom. Whenever that happens I barge in on him, denying him any privacy in that department. That night he was perched on a stool I keep in there for his use in the shower. He was inspecting himself rather carefully and anxiously. When I asked him what was wrong he showed me bright red blood in the toilet, obviously produced during urination and, from what I could tell, it had followed his pee, not preceded it, resting on the bowl of the toilet above the water line. He was understandably alarmed. My first thought was that he was on the brink of another urinary tract infection like the one that had caused so much trouble back in September. I asked him all the usual questions: Is there pain on urination? No. Is there any pain in your pelvis? No. I checked his temperature and blood pressure but both were normal. I felt his pelvis and his back around his kidneys for pain, thinking that he might have a kidney infection or another stone, something I hoped he'd never have to experience again after an agonizing attack several years ago. But there was obviously no pain. Hmmmm. What could it be?

Thinking that dehydration could somehow be the culprit, I forced him to drink two tall glasses of water on the spot. What was puzzling was that normally in the evening he is trotting back and forth to the washroom several times an hour. Fortunately he only has a few paces to travel each time with his specially equipped washroom right next to the living room. But after all that water, he didn't produce any urine for over an hour and had become rather distended in the pelvis.

When urination finally resumed I watched closely. Yes, still a fair bit of blood but still no burning or pain anywhere. The blood was obviously following the urination process and was even staining his daytime protective underwear. He was so alarmed I had to stop him from pulling down his pants to inspect himself while sitting on the couch. There are a few things I try not to expose the kids to.

I have a very old book, simply entitled "Symptoms" by Dr. Isadore Rosenfeld, that has helped over the years to calm my nerves when faced with various ailments and odd symptoms displayed by family members. I pulled it out and consulted the section on blood in the urine. It indicated that any bloody urine should be reported, and that painless and post urination blood might be nothing other than a mild UTI or the result of an injury (perhaps incurred during one of his many falls that afternoon). Or it could be an indicator of something more serious. In any case, I realized I'd better make a call.

It was now fairly late but I have learned that the special number I have been given for medical support of my home care patient will connect me with a sympathetic nurse at any time of the day or night. Michael's file is immediately available to the on call nurse, so after she had consulted it she felt that, with no other symptoms, I could probably relax and do a reassessment in the morning, calling again if necessary. I felt comfortable enough to let it go for the night, not wanting to add to Michael's anxiety. I reassured him it was probably nothing and hustled him off to bed, needing, however, to give him extra anti-anxiety medication and extend our prayer time to calm him. He had a night of noisy breathing but was otherwise quiet once he finally relaxed.

The next morning he had mercifully forgotten all about the incident. There was no further blood and there hasn't been any since, at least nothing visible. There could, of course, be microscopic blood present. After reading in my book about one of the more alarming possibilities, I hit the computer to do more research on bladder cancer which is often pain-free and can show frank bleeding following urination. All the other possible symptoms are present too but are misleading because he has displayed frequency of urination and low pressure for years, common symptoms of Parkinson's disease. Colour change of his urine is not a reliable indicator of anything either since his medications are responsible for a rather alarming array of urine hues. He has never been a smoker, at least not for any extended period and not for over thirty years, so he is not in the highest risk category for this disease, but he is male, which makes him several times more susceptible than a female the same age. There could also be prostate trouble.

With all this in mind, I finally called the visiting nurse today, now Wednesday, and left a message requesting a urinalysis which, I believe, may only show if there is infection and blood present, not if there is cancer lurking. That, from what I understand, would require a whole raft of tests that I shudder to even read about let alone pursue, given my poor husband's sensitivity to all things hospital related. I have yet to hear back from her.

But I am getting way ahead of myself imagining the worst case scenario even though, in the past, I have found it to be a very useful strategy to prepare myself for terrible things. In my experience, often those dreadful things come to pass so having imagined them first has helped me to cope. Last night I asked Michael a hypothetical question: If he were ever diagnosed with a life threatening disease like cancer, would he want me to pursue all possible treatments for him or not. I'm not sure whether his silence on the matter indicated a refusal to talk about it or an inability to absorb and process the question, but that silence is leaving me, once again, to guess and do the best I can on the bumpy road ahead.

Just when you thought...

2011-05-19T19:16:00.000-07:00

Michael never ceases to amaze me.

This week I was preparing for yet another dip into calamity. There was the pressure sore, of course, which has been duly treated and seems to be improving with careful attention. Michael also seemed more distracted, more lethargic, more delusional than he has been in a few months. He seems to have been hallucinating mildly, in the evenings especially, and has done some pretty odd things. Today I came home to an apologetic caregiver who explained that, on receiving this week's issue of the local rag, Michael felt compelled to tear it into individual sheets which lay muddled all over the table. I did manage to piece it together somewhat. In truth it made an otherwise fairly mediocre paper into a slightly more interesting and challenging read.

The weather has been enough to make anyone slightly squirrelly with non-stop rain for over a week, cold temperatures and general low pressure making everyone feel draggy, me included. But today, summer suddenly arrived at about three pm. It was hot, sunny and muggy, perfect for my annual visit to the garden store to buy my bedding plants. On returning home with my tiny car full of soil and flats of flowers, I saw Michael and his caregiver basking in the sun on our front deck. Michael was dressed in his rubber boots, ready for some action apparently. As I unloaded the car he rushed over to the shed and started hauling stuff out. It became clear he wanted the lawn mower.

Now, we own two lawn machines, both gas-powered and terrible polluters for the hypocritical environmentalist. One is a lawn tractor Dad bought for us just before he died, concerned that the lawn would become too much for my ailing husband. His intention was that our then eleven-year-old son would take over lawn duty with a fancy new machine to drive. He was right. William would tear around the place at high speed, putting life and limb in peril, but the lawn always got mowed. Everyone just took cover when William was at the wheel.

The other is a simple gas push mower for the more delicate work. Not that any of our dandelion-strewn lawn is the least bit delicate. William paid for most of that machine himself and used it for a few years for his small yard work business.

After Michael nearly asphyxiated himself a year ago while "repairing" the tractor in the closed shed, I have hidden the key. He is only allowed to use the push mower which, most days, is far too challenging for him to operate. The forward pitch he must maintain while pushing the mower makes him fall almost every other step, making the ordeal a very painful one to watch. Since he barely got off the couch all winter and has been falling constantly lately, I was sure the mower would remain untouched this year.

Our acre of land has a lot of trees and a beautiful meadow that was Michael's pride and joy for years, filled with native plants and grasses, and visited by butterflies and birds all summer long. Michael let this corner of our lot grow to minimize the mowing we must do. He carefully mowed paths through the meadow making it a haven for small children seeking a hiding spot and deer looking to rest. It is my favourite part of the yard. I call it Michael's Meadow and it will never come down as long as I live here.

But there still remains a lot of grass to mow. After a week of non-stop rain, the grass - which is mostly crabgrass and weeds, but very green - was thick and tall. Last year I hired a fellow to cut the grass for me, hoping this arrangement would prevent Michael from attempting it himself, but with all the rain, our lawn man hasn't paid us a visit yet this year. Enter Michael.

Out came the push mower, and a "discussion" ensued once again about why he cannot use the tractor. With some annoyance he started up the other and set off. Deep breath. This won't last long, I assured myself. Sure enough the mower spluttered to a stop a few minutes later and Michael took a breather. His lower back always gets very sore whenever he is upright, his muscles are so weakened. I found him crouching. But he got himself up and set off again, falling every few paces and making me wince. The stop and start of the mower continued for several minutes. I disappeared into the house and made myself a calming cup of tea, knowing that I would not be able to divert my determined husband from his task.

From the porch where I had retreated, I realized I was hearing a steady roar from the engine, with no punctuating stops. I peeked around the side of the house. There he was, labouring intensively, but making great headway up and down the flat stretch at the back of the house. At one point I hid my eyes as he bee-lined for my garden. There was some loud crunching as he hit dirt but, on later inspection, there was mercifully little damage. He even managed straight and methodical lines, unlike his usual approach which is rather free-form, criss-crossing, confusing paths. What was so surprising was that once he got warmed up, he hardly fell at all. There was the occasional stop for a rest and I would find him sitting happily amid the dandelions accompanied by a playful dog. Then he'd pick himself up and set off again. In the end he was not able to complete more than a fraction of our huge lawn but what he did manage was well done, apart from one wide swath cut through my beloved meadow. Finally his medication ran out and he struggled to get into the house before he collapsed completely.

He was drenched in sweat, a tired but happy mower.

Nitty Gritty

2011-05-17T14:05:00.000-07:00

Bedsores. The new reality. Michael is not completely bedridden so the single sore took me by surprise yesterday, but I suppose he now spends so much time in bed or reclining on the couch that it should have been expected.

Bedsores are caused by immobility and continued pressure on one spot for several hours. Blood circulation is impaired, so the skin is not being nourished and starts to break down. Fortunately, this single butterfly-shaped red sore at the bottom of his tail bone is only a day or two old and, from what I have read, is only at stage one, meaning there is no broken skin, no suppuration. With vigilance I am hoping we can clear it up.

Michael spends at least nine hours locked in one position all night. His preferred position is on his back, with the hospital bed slightly raised at the head and at the knees. Movement is impossible once his last dose of Parkinson's medication has worn off, usually long before midnight, so there he must stay. Lying on his side is less comfortable but it also poses problems with the diaper he must wear every night. Michael is completely incontinent now, at least he is through the night, so lying on his side leads to far more leakage onto the bed, far more discomfort by morning. I have a collection of large square cotton bed pads; one covers his bed sheet every night and takes most of the excess moisture that the ultra-absorbent adult diapers do not retain. These pads are gortex-lined on the bottom, rendering them impermeable. There is always laundry every morning but at least with these pads, usually the rest of the bedding is left dry. Occasionally there is a deluge.

Back to the bedsores. For now, I won't try to change his position at night, but during the day I will try to keep him off his backside as much as possible. This will mean that when he wants to recline to watch television, I will try to have him on his side, not his back, and try to get him up moving more often throughout the day. Anything that will take the pressure off that spot. Friends have recommended a mixture of aloe vera and vitamin E which I will try if this first approach is unsuccessful. This morning I placed a memory foam overlay I had lying around onto his mattress, hoping that will relieve some of the pressure. I will also consider waking up once in the night to turn him if necessary but that will be a last resort only. Sleep is too valuable at the moment for both of us.

If someone had asked me ten years ago if I could ever deal with my husband in diapers, I most probably would have said no, but it is remarkable what you can get used to. It doesn't bother me but it is probably the most significant factor in my distancing myself from my husband physically. Our relationship has become one of simple affection.

My biggest concern with the diapers was not the aversion factor but the environmental one. For all four of my children I was dedicated to the use of cloth diapers exclusively. On the rare occasion I used a disposable one for travelling, I felt that I, personally, was responsible for all environmental disaster. In fact, for short trips, I was known to carry along lots of plastic bags to store the rinsed out soiled diapers until I could return home to wash them. A bit extreme, I know. It wasn't just the use of an unrecyclable paper product that bothered me but also the disposal of human waste that should have gone into a sewer but was ending up in a landfill, despite every effort I made to remove solid matter.

But with an incontinent adult, using cloth diapers is really not an option. With my children, their use arguably hastened toilet training (anything to get out of those soggy, heavy messes); with an adult, comfort is the most important consideration, and the amount of cloth that must be used to stem the flow of an incontinent adult male would be more than uncomfortable. The one consolation is that the technology has advanced to the point where thinner and thinner diapers are holding more and more fluid. The same can be said for infant diapers too, so I suppose the impact on the environment has been diminished somewhat. I still shudder at the thought of all that human waste being dumped into landfills, though. Surely we have advanced further than that as a society. It seems ironic to me that we have perhaps the most advanced plumbing systems we've ever seen and are so preoccupied with hygiene and the spread of disease, especially in public washrooms, yet we are so cavalier about our disposal of that kind of waste that has the unfathomable potential to spread disease into our soil and water systems. But I'll get off my high horse now.

As this disease marches on, indeed as any of us progress toward our earthly end, I am struck by the circle of life, how much my husband has returned to a childlike state: diapers, unstable gait, inability to articulate his needs, teeth falling out, an inability to dress himself, a complete childlike egocentricity where his needs are paramount. I saw it with my parents and my father-in-law, and my niece probably saw it in my sister in the months before her death. It is a sobering inevitability for most of us.

Methinks Shakespeare said it more eloquently than I:

All the world's a stage,
And all the men and women merely players:
They have their exits and their entrances;
And one man in his time plays many parts,
His acts being seven ages. At first the infant,
Mewling and puking in the nurse's arms.
And then the whining school-boy, with his satchel
And shining morning face, creeping like snail
Unwillingly to school. And then the lover,
Sighing like furnace, with a woeful ballad
Made to his mistress' eyebrow. Then a soldier,
Full of strange oaths and bearded like the pard,
Jealous in honour, sudden and quick in quarrel,
Seeking the bubble reputation
Even in the cannon's mouth. And then the justice,
In fair round belly with good capon lined,
With eyes severe and beard of formal cut,
Full of wise saws and modern instances;
And so he plays his part. The sixth age shifts
Into the lean and slipper'd pantaloon,
With spectacles on nose and pouch on side,
His youthful hose, well saved, a world too wide
For his shrunk shank; and his big manly voice,
Turning again toward childish treble, pipes
And whistles in his sound. Last scene of all,
That ends this strange eventful history,
Is second childishness and mere oblivion,
Sans teeth, sans eyes, sans taste, sans everything.

-"As You Like It", Act II, Scene VII.

Passion

2011-05-10T12:52:00.000-07:00

One of the biggest challenges of this job of full time caregiving is staying balanced and content. The constant repetitions of each day, the isolation, the stress of being on high alert at all times take their toll. On the whole, I manage the balance fairly well and can actually report that most days I am content, even happy.

But there are days when life overwhelms, not often but occasionally. The meltdowns are usually short-lived for me, thank goodness, and cathartic, allowing me to press my reset button and face the monotony again. Or a simple call from a friend or family member is enough to jolt me out of my morass for a few more days.

Recently, though, a connection of another sort occurred that has gotten under my skin and is chafing. Long lost unrequited relationships sometimes surface that trigger memories and longings that I have mostly been successful in suppressing. But this one has uncovered feelings and yearnings I have kept well hidden over the past few years of intensive caregiving.

I have always described myself as a person without definite passions. I've often thought that perhaps I suffer from anhedonia . But that is defined as a mental disorder, one where the sufferer no longer finds pleasure in previously enjoyed activities, not what I am. No, I take simple pleasure from simple things: a prayerful walk in the forest alone save the company of my dogs; watching my garden spring forth every year; my children; my friends; my volunteer work. I have, of course, loved my husband, sometimes very passionately, and still do, though the passion is sadly long gone. Something must die when a spouse must cross that line from lover to nurse (despite male fantasies to the contrary), and, with a chronic severe degenerative disease like PD/dementia, there is no turning back, at least, not for me. Sometimes I think I am better suited than most for this job because I do lack passion for many of those external things like hobbies and causes. I don't feel I am missing much and on the whole I am a contented homebody.

I am not ready to give up my job as caregiver, as onerous as it is, but I am realizing that a life without passion is a sad one. I wish I could abandon myself in a hobby that might fulfill me if I only had the freedom for such things. But there is still this chafing yearning that will not go away, a reminder that I am, after all, human with all my physical needs calling out to be met. A cruel joke that is keeping me awake at night. A spiritual life is helpful but only an occasional panacea.

My solution is to engage in time travel and fantasy. In the case of time travel, I am able to lose myself in memories of my husband in better times, when he was well, fit and amorous. It is a useful strategy and gets me through lonely times just imagining his comforting, protective arm around me in the night. But I am now the Protector so the illusion quickly vanishes, leaving only the yearning. It is merely a ghost of the past.

Fantasy, on the other hand, offers the promise of future, though a rather hollow promise at that. It works for a while but, again, is only an illusion that vanishes perhaps even more quickly than the other because there is no past memory to fuel it. It is a chimera. It is less satisfying, perhaps even destructive, because it does leave the longing with nothing tangible in its wake. The time travel indulgence at least still has all the fine material products of that relationship before me as a reminder that it was real.

Ann

2011-04-21T15:39:00.000-07:00

"She's gone" were the words transmitted to my cell phone at 10:14 pm, April 19, what would have been my mother's 91st birthday. Appropriate day for my sister to leave us and head home to Mom and Dad and her husband, who had paved the way a mere sixteen months ago. It was the twenty-first day of her coma but when I realized the night before that it would have been Mom's birthday, I hoped it would be then. Comforting in an odd way.

I had been grieving for years but especially so the past three weeks. The final week we were all exhausted but not nearly as much as my dear niece who had been keeping a lonely vigil all that time, far away in Vancouver. I think we had all become rather numb so I was shocked at my response to the expected news. I thought I was ready and all tapped out, but when my grief picked me up and threw me violently to the ground, wailing and screaming for what seemed a long time, I was surprised. It was almost an out-of-body experience as my rational self stood aside calmly and watched the display. I had no more control over it than I would have over a raging bull bearing down on me.

Michael looked on in silence, laying a comforting hand on my convulsing back. He seemed rather confused. I think he understands what has happened. He had quite a bond with my sister, only two months apart. A sister to him too.

That night I crawled into bed very late, my throat raw, my head pounding, shivering uncontrollably. The keening wind allowed little sleep. I awoke in the early hours from a brief sleep, aware of a strange silence in the house and realized the wind had knocked out the power. It was a cold, wet, miserable day, perfect for the occasion. The house was freezing, the electric furnace unable to warm us. Damn, I'd have to light a fire in the living-room wood stove if there was to be any hope of a cup of tea and comfort. My brain was so foggy that it didn't occur to me to call the Hydro company to find out how long we might be in the cold. It seemed entirely appropriate for me to play pioneer and huddle around the fire alone in the dawn half-light. It was at least something to do while I reflected on my sister's life.

Ann Verney Kakuno: May 10, 1948 - April 19, 2011. Daughter, sister, mother, surrogate mother to a much younger me, wife, dedicated teacher, friend, long-time stamp collector, professional standard seamstress and craftsperson, volunteer worker.

In old movies of our childhoods during our early years in Canada she and I seem inseparable, I a toddler, she a gawky but pretty young girl, just launching into adolescence, stuck with my care. There is an image of us hanging out together on the flat, bald prairie, another of us leaping through a sprinkler on a hot summer day. We shared a bed for a few years during my parents' first impoverished Canadian years, even a bedroom with my brother for a couple of years. I remember wetting our shared double bed a few times, in a house that was bitterly cold through winter nights and with no running water to bathe away the rank smell I must have spread all over my patient sister.

Ann left home for university when I was only nine but before that had been a dedicated creator of beautifully sewn doll clothes, and she patiently and meticulously cut out all my finicky paper dolls and their clothes. I was the envy of all my friends. Ann orchestrated my only two birthday parties as a kid, complete with treasure hunts and a fancy hairdo for one.

Years later, I am away at boarding school for four years of high school, hating it but always excitedly checking my mailbox after school for letters from the Outside. There were regular missives from Ann and frequent, thrilling boxes containing all kinds of contraband. We were never allowed to have food in the dorms but my sister recklessly ignored the rules and sent all kinds of fantastic treats that fed many a secret dorm feast. On one occasion we got caught but I never ratted out my sister.

She bought me my first and almost only make-up along with the coolest sunglasses ever, unfortunately long gone. I had my first and almost only cigarette from my sister, experimenting herself in our parents' kitchen.

I was her only bridesmaid at her wedding in June, 1971 to Fred Kakuno, a fine, handsome young teacher at her school. A thrill to an almost fifteen-year-old. In 1980, she stood by me at mine with her feisty little three-year-old daughter dashing around us. I remember looking back to see Fred waving a stick of red licorice trying to lure his daughter to him, all to no avail. I didn't care. I loved my pirouetting little niece and her free spirit.

Ann wept with me at the near-break-up with a bad boyfriend and later at the real end. I held her daughter and cared for her after Ann's first serious operation for a brain tumour, her little girl only a few weeks old. Ann sent me beautiful Christmas decorations every year, mostly made by her. Without her, I would have a bare tree.

In recent years, there were all those roses on a multitude of gifts: quilts, paintings, books, clothing, pottery, all riotously festooned with roses. In fact just three months before she died, she came to me in a dream, bearing red roses. The fact that these roses turned mysteriously into pot scrubbers attested to her sense of humour and my dad's, who was with her in the dream, awaiting her in the wings.

I loved my sister. I am bereft. But she is finally at peace after a long, fiercely determined battle with her body. It let her down oh so many times but through it all, she remained patient but tough, filled with a special grace and dignity.

Fly free Ann.

Limbo

2011-04-17T17:48:00.000-07:00

I look outside and see a variety of nastiness. a kind of winter-spring limbo where the weather gods cannot make a decision about the season. Or it could be a cosmic joke so common to Canadian weather systems. Today alone we've had it all it seems: sunshine, hail, snow, rain, wind and something mysterious called graupel that I just learned about this weekend. Graupel is a German word and is used to describe "precipitation that forms when supercooled droplets of water condense on a snowflake", softer than and not to be confused with ordinary hail which are "snow pellets encapsulated by ice". This information was passed on to me by an avalanche expert so I'll take his and Wikipedia's word for it. It's been that kind of weekend. I think I even heard thunder at one point.

Despite the confusion of the weather, I decided to leap into spring cleaning, a decision forced upon me, arguably, by the weather itself after a particularly violent night of thunder storms and heavy rain last weekend that left our basement more than a little damp. The basement had been calling to me for a couple of years now; the disorganization and accumulation of junk had overwhelmed and nearly paralyzed me all that time. But a few damp boxes and piles of wet dust were enough to mobilize me. Most of the mess was manageable and easily controlled but it was Michael's long-neglected work bench that had me terrified.

Michael has never been a particularly neat person and in over thirty years of marriage I have had to make peace with the chaos that defined that space in the basement. As long as he could find what he needed, who was I to complain, especially since I rarely needed to use any of that equipment myself. In the first twenty years of our marriage, that was his department.

But in the past few years, I have had to take over many minor repairs in the house, and the challenge of finding the appropriate equipment in Tool Purgatory was beyond frustrating. With Michael's advancing dementia, he no longer knew where anything was nor what an appropriate tool might be, as illustrated when he took a hammer and large screwdriver to our now-defunct turntable.

Yesterday I rolled up my sleeves and spent a happy couple of hours purging (interrupted, of course, by frequent dashes upstairs to check on Michael, hoping that he wouldn't cotton on to my activities - he's still remarkably protective and defensive of that mess). I filled canister after canister, bound for the recycling bin, with loose and random metal objects, ranging from rusty nails of all sizes to free-roaming nuts, bolts, broken tools, and odd bits and pieces that had no significance to me. I pared the whole mess down to only what I would use and need. To that end, during a morning outing last week, I purchased a full set of screwdrivers and wrenches for myself because Michael's set is not only incomplete but also horribly maimed in some cases from botched "repair" jobs. I bought two briefcase-sized (and probably overpriced) containers filled with a lovely, well-organized and labeled array of nuts, bolts, and screws so I will no longer have to forage through the clutter on the workbench to find appropriate hardware. The miracle of all this effort was a satisfying, clear, empty space on the table inviting actual work to take place, the first such space in thirty years.

The focus of the work allowed me to shut out the ambivalent Weather which was just a reminder of the current limbo and confusion that life has thrown at us right now. My sister, somehow, still clings to life after nearly three weeks in a coma and more than two without sustenance. An offspring has cancelled a wedding and is uncertain of the future of that relationship, leaving it, at present, in a hellish limbo and with it a heavy sadness. And there's my Michael, who left me years ago for the limbo of Parkinson's dementia and withdrawal.

I saw the work as life-affirming and a hopeful step towards clearer, more decisive, perhaps happier times, even if the weather cannot figure it out.

The Wait

2011-04-06T15:56:00.000-07:00

My niece informs me it is now seven days since my sister has had any sustenance in the form of saline IV and more than eight since she entered her coma. The wait for the inevitable is an agony, but the pain I can imagine my niece is suffering at her mother's bedside is worse for me.

I flip back in my memory to the deaths of three parents, both of mine and, most recently, Michael's dad. All three were well into their eighties and all three took the long road home instead of the quick leap of a sudden death that has become a far more attractive route to me now that I've witnessed these three and am now awaiting news of the fourth from afar. Just today, in fact, I have informed my kids that short of taking a pillow to my face, they are to agree to whatever a doctor offers to hasten my departure if I decide to take the slow painful route. I must formalize that request because I would like to minimize their suffering.

My daughter recently read out to me a passage about women and waiting, though I think the phenomenon is not always exclusive to my gender. The gist of it was this:

We are generally the caregivers who minister to the sick and dying in our families, making their lives as comfortable and happy as possible, but waiting for the end.

We wait impatiently for men to ask us to marry them or ask us out (Though in our case, my husband proved to be not much of a self-starter and I had to take matters into my own hands in our courtship. I'd have waited forever otherwise). We wait excitedly to get pregnant or we wait as single, unattached women in a panic for our periods to come to confirm no pregnancy. We uncomfortably wait through nine long months for our children to gestate and then we wait through sometimes long excruciating hours of labour.

We are more likely to do the nighttime vigils with sick children who always seem their sickest and, in our addled, sleep-deprived brains, closest to death in the wee hours of the night. It was always my mother, not my father, who waited sleeplessly and anxiously for me or my sister, as carefree and thoughtless young adults, to arrive home far too late and sometimes too inebriated. To my knowledge, my brother spared my mother that anguish.

But it is this wait for the death of a chronically ill loved one that has a special agony. In Michael's case and in my sister's, their longterm ill health has brought them to the brink so many times that the rest of us should all be inured by now. Yet every night becomes a kind of vigil because it could happen anytime for Michael whose heart has proven wonky in the past. If he has even a simple cold, his mental state is altered drastically and threateningly, setting off the vigil alarm and triggering the wait response through long dark nights. I have spent many nights simply listening to the rise and fall of his breathing over the monitor to be sure he's okay, just as I used to when my children were babies. Every morning I lie awake listening for his breath before I brace myself for a day of waiting to attend to his every need.

Patience is a virtue, I hear.

Volcanic Eruptions

2011-03-30T16:50:00.000-07:00

The sunshine is full and warm, streaming through winter-speckled windows. It is one of the first real spring days we've had in a while and I nearly feel guilty for not stepping out, but fatigue weighs me down. No Workout Wednesday today. I was too afraid to be cut off from the ring of the phone even though I've never missed a call with earbuds plugged in.

My sister seems to be near her end. But this is my sister, so nobody, not even doctors well-rehearsed in such matters, is willing to make predictions about her. We've all come to see her as immortal, having survived so much over the decades of ill-health. She always pulls through. I am reminded of the birthday card I bought this year for my husband that held a large button pinned to the inside. It declared: "I've survived damn near everything". I made him wear it all day.

But this seems grave this time. Not that it hasn't been before but this is the first time she has retreated this far. She has been unconscious since yesterday afternoon after suffering a series of violent seizures and, some are guessing, a stroke or two which might be the cause of the seizures. Or, they speculate, maybe she is suffering the effects of the abrupt withdrawal of an anti-depressant she's been on for a few years. She has been on IV for over a week - no food - after something left her incapable of swallowing. But we've seen all this before, just not this severe and not with the loss of consciousness. She seems to be in a state of constant seizure, rigid and unresponsive, a life-threatening condition called status epilepticus, I believe

My niece is keeping me well informed during a nearly constant, solitary vigil at her mother's bedside. She sounds strong. She's coping well, it seems, but then she has had years of practice. Her mother first fell seriously ill two weeks after her birth. She is hesitant to declare it is nearly the end but she is bracing herself. We all are. How is it after years of preparation for this possible day of departure, we are still not ready? At least, I am not. Sadness bubbles up like hot lava all day long.

Last week, when we heard Ann was back in hospital, I momentarily entertained the thought of a hasty trip to see my sister in Vancouver. One of our daughters was to come home for the weekend. I could leave Saturday morning, be back on Monday when she had to return to her new home. Two nights of looking after Dad. I even went so far as checking flights and hotels, not really thinking this could actually come to pass. Yet I was feeling daring after, two weeks earlier, I had ventured out for my first successful evening of entertainment in a year and a half, with my very competent caregiver in charge for the six hour break. She was to feed Michael his supper, spend the evening watching a televised hockey game, then put him to bed, the first time ever someone but me would deal with that task. All went smoothly. It helped, I think, that I gave Michael no warning of this plan until the caregiver walked through the door. He seemed calm with the news that I was going out, except for a sudden concern about money and a momentary flash of panic in his eyes that seemed to ask if I was leaving him. I stuffed a twenty dollar bill into his wallet and went out to dine and chat with an old friend. I felt buoyed and confident this could be repeated soon.

But a weekend away could not be sprung upon him at the last moment. Packing and preparation would tip him off, so I mentioned my wish to go. Immediate fear crossed his face, his silent panic quickly cancelling such a crazy idea. I reassured him I would not go and he seemed to forget about it instantly. I could not leave my daughter alone to cope with the insanity that would most likely befall her father shortly after my departure. I know my husband too well to subject her to that.

My nerves are raw, intensified as well by unaccustomed disharmony in my family. An angry and hurt offspring broods silently from afar, scorched by rare but misspoken, judging words from me over a painful personal issue. My apology hangs uselessly between us. The imposed internet and telephone moratorium shrieks at me through the ether. I am chastened and destabilized. Michael seems to know that this, more than all the rest of life's issues right now, threatens to unhinge me. There are frequent anxious glances in my direction.

I must be careful to rein in my own anxiety or we will be plunging into our own crisis again. Two this week are quite enough.

Exercise

2011-03-15T17:32:00.000-07:00

Last week I had every excuse not to start work on this year's income tax forms.

Last week it snowed. And it snowed. Our thirty-plus meter driveway is well cleared by a contracted snow-plough operator but the last ten meters or so, between house and shed, are too narrow for the fellow to pass with his truck. That and the equally long or longer wheelchair ramp attached to a large deck, several sets of stairs leading from various doors, and a path linking them fall to me to clear. Arguably I could reduce my work and simply clear one doorway and the ramp but I have a mortal fear that fire or some other calamity might trap us in a part of the house where I cannot get out with a severely disabled man. I am extra careful.

I used to clear the entire driveway myself - by hand - but as the years progressed and I aged, my dear old dad bought me a snow blower a year or two before he died. He hoped that the remaining offspring might take up the task and that I, at least, could be relieved of what he considered too much for one person. I actually loved the work and took delight in the fact that I was the only person - and the only female - clearing my driveway by hand and doing so quietly. I hate the roar of the engines and the smell they spew into the atmosphere from my neighbours' driveways. But the year we had over three meters, nearly four, of snow, I was damned glad to have that smelly, noisy machine. The offspring, by the way, are all but gone.

Unfortunately, arthritis has crept into my hands, leaving them swollen at the knuckles and, recently, quite painful. I found out the hard way that the vibrations from a snowblower exacerbate the pain to the extreme. I had to return to the old fashioned method.

Then one winter about three years ago, the children bought us that snow clearing contract. I had stubbornly resisted hiring one myself, my ridiculous sense of independence thwarting me. But when it was handed to me on a platter, during another winter of very deep snow, I was grateful. I have hired the same fellow ever since, contenting myself with the areas he cannot reach.

I sold the snowblower to a friend, hoping Dad wouldn't mind, resolving that once I can no longer do the small amount left to me, perhaps it would be time to sell this place. Last week I came perilously close to making that decision.

It's not that it was a huge amount of snow. Mercifully it came in several batches over many days, not all at once as it has done previous winters. The problem with snow in March is that it is usually very wet and very heavy so that even a small amount on your scoop or shovel becomes a challenge. I had thought that, so far, we had had a relatively snow-free year, but as I pushed heavy loads up what had become nearly two meter high snow banks, I quickly revised that assessment.

By the end of it all, my body was tired. But what I find more difficult is managing to complete the task while caring for Michael. If my caregiver is here, then it's easy to not worry, but if Michael is in the house alone, I am constantly popping my head inside to make sure he is okay, napping or watching television.

I survived the snow, of course, and probably became stronger for it, but I looked at my sedentary husband again and again over the week and resolved to get him moving too. Over the past few months, his mobility has nearly ground to a complete halt. Recent swelling in his feet and ankles highlighted the potential danger of inactivity. We try to get out for a short walk a few times a week but if the timing is off a bit, then we often get no farther than halfway down the nicely cleared driveway. A few times I have been able to lure him onto my elliptical machine, set at the easiest level, but after two minutes he is huffing and puffing, then he quits. It's just not very much fun.

Last week I had a brainwave and set to work to find and order a small, inexpensive gizmo designed for disabled folks in wheelchairs. It is a pedal machine with a very simple knob to adjust the resistance. Michael can be parked in front of the television as always and pedal away from the comfort of the couch.

It arrived at our door last Thursday. I had it assembled in five minutes and he set to work immediately. I am a realist; I know Michael's interest will wane, but the first three days, he actually pulled the machine out himself and sat for thirty minutes each time pedalling steadily. The machine can even be used on top of a table to give the arms a workout but that is slightly less appealing to him than using his legs.

The past few days he has not touched it much but, with the glorious sunshine and warmth, I've been able to drag him outside for short walks with only a few falls each time. Perhaps the hint of spring in the air is motivating him and giving him strength.

The swelling in his feet has receded and there has been no further snow since last week. Revenue Canada and Revenue Quebec are not very seductively calling my name.

Journeys

2011-03-01T14:26:00.000-08:00

This story was written in October 2010 near the first anniversary of the journey described below:

It was to be an epic journey; British Columbia had been beckoning to me from beyond the mountains for decades. I wanted to retrace the path that had ended there so many years before, forged by my family on our way to a new life.

My life began in the damp Midlands of England 54 years ago but my home was soon to become this vast empty country. My parents, fed up with the privations of post-war England, or perhaps merely possessed by a sense of adventure, sought the proverbial better life.

Our feet touched Canadian soil in Montreal, the week-long ocean voyage leaving my father weak from sea-sickness and jubilant or nervous imbibing. But my mother's face beams in the few photos from that journey, her first respite from domestic drudgery since their hasty marriage immediately after the war.

In Montreal my mother's tall willowy frame, in a printed frock, patiently stands with her brood, awaiting the train to carry us to our new home in an unknown land. My father's presence only felt as the eye behind the camera lens, observing his family.

Two long days on that train. How awed they must have felt at the vastness of the landscape, the barrenness, the emptiness after crowded England. Mom was well used to train travel after years of wartime commuting, often in black-out conditions, awaiting the whine of enemy planes over industrial Birmingham. She took up smoking for those journeys, and knitting, often blindly working on some project through the darkness. I can see the glow of the cigarette in her mouth and hear the click, click of her needles marking time with the train. Did she knit across Canada too or was she content to let the experience go by recorded only in her mind?

BC was still nine years away. We first arrived in Medicine Hat on our way to Etzikom to a principalship Dad would never have dreamed of acquiring in England. But he had a restless spirit and over those years we threaded our way through small towns in Alberta: Smith, Grassland, Cold Lake, all of them exposing us to new cultures - ranch life, farm life, a First Nations community, a military base.

And finally the three day trek to the coast. Mom, Dad and I drove, my older siblings now far away at university. Our Rambler station wagon was filled with necessities for six weeks until our furniture could find its way to Kemano, an isolated company town that finally promised the prosperity my parents had left England for. All three of us were crammed into the front seat of our aptly named vehicle. I remember my first sight of mountains, coming over the crest of the hill; ten years old and I was spell-bound by the majesty.

-------------

Years later I leave home tracing my way back to the East. Two days of travel out of mountain-bound Kemano for a new life at university in Kingston. What I didn't know was I would never really return to BC, a hurried visit here and there, but nothing sustained. I wish I had known that. I might have taken in my last sights of the places better, stored them away safely, but I was cavalier, youthful, unaware of the fragility of those memories over the years.

I settle in Ottawa with my husband, my last visit to BC in 1979, thirty long years ago. We have four children; we build a life together. We are happy and confident in ourselves and our longevity. We are strong and healthy.

Then in 1994 there is an unraveling. Michael is diagnosed with Parkinson's disease, early onset, only 46 years old, still fit, vigorous, otherwise healthy. We cry, but only briefly. Both of us have inherited our parents' stoicism, work ethic, their pioneering spirits, and without really discussing any plans, we resolve to raise our children, continue the tangled job of life. Our children grow and thrive.

Illness is expensive and busy, four children even more so, and in the intervening years I have developed a pathological fear of flying, all of these factors conspiring against any kind of travel let alone a long journey back to BC. We content ourselves with boisterous caravan-style camping trips over the years. My sister, the only sibling to stay in the West, makes annual treks to Ontario, my parents, in retirement, having abandoned the outback for the first time in their Canadian lives to join my brother and me in the Ottawa region.

This same sister fights her own battles with illness. She teases Death so many times over the years but when she can no longer make her annual visit, when illness finally starts to win the war, I begin to plan my way back to the West.

We hear news that her time is drawing to an end and that of her husband too, her life-partner, her patient caregiver over the years of unrelenting ill-health. I must go.

I still cannot imagine setting off in an airplane; the panic invades my sleep. Besides, my husband's condition is now bad enough that I do not feel I could adequately give care while succumbing to fear.

Then I remember how much I love the train and excitedly plan our journey across this land. I summon my parents' spirits and strength. We will board the train in Ottawa, hop off in Toronto onto the cross-Canada train late in the evening, snug in a small roomette. Three nights on the train, then debarkation in Jasper where I will drive us out of the Rockies to Quesnel, my sister's home.

I work out all the details. Michael seems keen to go but dementia has crept in over the past few years, a nasty feature of an already devastating disease, and I notice that he is getting worse in the weeks leading up to departure. I start to have serious doubts about the trip. But my sister, I have to see her for perhaps the last time.

The day before and I am now alarmed. My husband is fighting with invisible forces. I book an emergency appointment with the doctor vowing I will cancel everything if he thinks it unwise to go. The Demons are wily and hiding so the unsuspecting doctor is cheerful and confident, dismissing my fears. Of course the train will be safe. No, you were quite right not to book a flight - very risky - the train is so calming and peaceful.

I am only slightly reassured by the doctor. I have seen my poor husband succumb to those dark forces in the past while hospitalized for a heart attack. I know that any change can unleash delusional paranoia but I talk myself into believing that since he will be with me, his touchstone in adversity, all will be well. I pack my diversions for a long journey, six days there and back on the train: books, audiobooks and a new knitting project, homage to my mother.

We are nearly in Toronto, the first leg of the trip, when my cellphone rings. Our youngest, left in charge of the house, reports that he is suddenly very ill. I can hear how ill he is, even frightened, or maybe that's just my Mother's Panic clouding things. But what can I do? For now the draw of my sister is stronger and I have to obey.

Later that evening, on board in Toronto, I find our roomette impossibly small; with the beds down for the night there is barely room to turn around. I take the top bunk, leaving the bottom to my disabled husband. I plug myself into my ipod and look forward to being lulled to sleep by the train, imagining this same journey 52 years earlier.

Early in the night the Demons invade. Michael cannot grasp where we are and what all the noise is. Calming words from me have limited effect; he hallucinates wildly. He becomes paradoxically mobile, something I have now learned to expect when he is in adrenaline rush. He is now immersed in some elaborate, imagined conspiracy and starts to hunt for weapons to protect us. I tell him gently that I must have forgotten to pack them. We snatch only moments of sleep.

Morning dawns and I look forward to a breakfast that I have had no hand in preparing but all my attention is on my husband. He seems normal but I know his roving eye is following unseen companions. His halting, mumbling Parkinson's speech confuses our table companions. They look away uncomfortably. Conversation is stilted.

Our first full day is spent mostly in our room. Michael is ambulatory only a few hours a day with medication so I carefully tailor his drug regimen for optimum mobility at mealtime. The Panorama car with a full vista of the passing landscape is too far away for him to negotiate the narrow hallways so I content myself with watching the scenery from our own window. We are in northern Ontario, an endless parade of spindly conifers, rocks and small frigid lakes. We doze together on the bottom bunk, catching up on lost sleep. I knit a few rows of my intricate, delicate, cable-patterned shawl. The Demons are resting.

Nightfall. I slip away for a hasty shower, nervous about leaving Michael alone for even a few minutes. I summon the porter who promises to watch for me. All is well and later I settle happily into my bunk, anticipating a calmer night. Surely exhaustion will prevail tonight.

But this time the Demons are impatient and storm in as soon as the lights are dimmed. Michael tries to flee what has become his prison cell. I fear he will hurl himself off the train so I lock and barricade our door with a suitcase. Mercifully his mechanical prowess has disappeared over the years of this ravaging disease and he cannot fathom the simple lock. Together we wage war through the night as quietly as possible.

A second dawn approaches and I weigh my options. We have one more night on the train before our arrival in Jasper. My husband's eyes are ringed with fatigue and mental illness. Probably mine are too but I refuse eye contact with myself in all mirrors. I must make a decision now as we approach Winnipeg. With still a long journey ahead and then five days in the company of two very ill people, I realize we must disembark in Winnipeg and get home somehow. I consider renting a car to drive the long way back but the thought of being trapped alone with Michael's unpredictable behaviour is unbearable. I know we must fly. The thought of death in a fiery plane crash is oddly less worrying than continuing this hellish journey.

We are ready to depart our prison as soon as the doors open at 8 am. The porter is immensely helpful for I am left to struggle with the wheelchair and luggage, but my husband is mercifully and suddenly calm now that he knows he is free and going home. We make our way to the ticket counter in the Winnipeg train station to negotiate a refund. I am prepared to forfeit it all, I am so desperate to go home, but I am touched and surprised that the compassionate clerk, on hearing my tale, refunds all but the portion we have already used. I am, I think, calm and coherent, knowing that any panic I might exhibit will only set Michael off again. He needs me to be serene at all times.

With money refunded we grab a cab and make our way to the airport through the wide empty streets of this prairie city. Our driver and I try hard to be cheerful despite the obvious madness that has invaded his car.

At the airport our only option appears to be to fly immediately to Montreal and make our way home from there, having missed the only two early Saturday flights to Ottawa. A computer glitch forces an inordinate wait time for the hasty tickets we require. I offer full disclosure about our volatile predicament but suddenly am gripped with fear that they could refuse us passage. Michael is currently calm and lucid but feels a duty to inform approaching strangers of imminent danger at the hands of some terrible terrorist conspiracy. The flash of near panic across one face prompts me to grab his arm and admonish him to stop talking to people. He obeys.

We are offered a quiet resting place in the airline staffroom as we wait for the computer to be convinced to process our tickets. With only fifteen minutes to spare, a cheerful young attendant rushes with us to the security gate, then to the door of the aircraft, where all have been apprised of our predicament.

I settle Michael into the window seat and myself in the aisle; I refuse to look outside. Michael is now as happy as a small boy on a new adventure. He has always loved flying, having travelled the world for his work as an engineer with the federal government before this disease robbed him of nearly everything. I brace myself for my first flight in thirty years, prepared for complete panic. Save a few long moments on takeoff and a few longer ones on landing, I am prayerful but calm. It helps that Michael is positively beaming with joy.

The rest of the journey home is anticlimactic and uneventful. We arrive on time in Montreal, hop on the shuttle bus two hours later, arriving at the Ottawa bus station, then home-sweet-home, by late afternoon. The only Demons who reappear sneak onto the bus in Montreal but I have been wise to invite them to join us in the front seats, everyone else on board near the back. The final stretch of the journey, the car ride home, Michael is anxiously hiding in the backseat, certain we are under attack. My ailing son and I chat amiably in the front seat, careful not to acknowledge Michael's fear, and intent on getting this poor sick man home.

---------------

That journey was over but not the bigger one that continues to move us in unknown directions. Michael's health declines ever so rapidly now; this disease seems to be taking its final hold on his body and mind. My sister miraculously still lives but her husband ended his journey with life Christmas day last year, exhausted from his disease and his onerous duties.

The return to the West was not to be, not yet, and my tangled knitting project has been all but abandoned for now. I pick it up occasionally but cannot complete it.

Silence

2011-02-16T21:22:00.000-08:00

It's late. Boredom exhausts but sleep eludes.

A day without respite. A usual Wednesday with the day's only plan to get in a workout and get through the day. Success at least on that front.

Television tyrannized my attention. Three meals created welcome structure to the day. Michael loves to eat and only left his couch-bed to do so and heed the call of nature. All my senses acute; couldn't bear to hear him chew. Focused all my attention on the paper's daily puzzles. I knitted a few desultory rows but the television aggravated my mood. Edgy. Hustled him off to bed promptly at ten to escape to my room. Felt like confessing that I've had enough but knew my words would wound even if only for a moment and then be forgotten. The response is always silence when I unload my heart. I pray for conversation but there is no point in wasting words; I don't anymore. Instead loud wailing to God, the silence, the darkness but no response either.

Yet writing these words, seeing them form, brings lightness. Imagining a world beyond the screen. Yawning, I think I can sleep. Tomorrow will be better.

Playing with Fire

2011-02-13T08:16:00.000-08:00

I conducted an experiment this week and it failed. At least I think it did. Not spectacularly or catastrophically, just quiet failure, but it was worth the try. I had been giving this decision much thought and felt we had nothing to lose.

Some time ago I wrote about the newest drug in Michael's arsenal, Clozaril. It is a powerful neuroleptic drug used to treat stubborn cases of schizophrenia and patients with Parkinson's Disease where dementia progresses to the point of deep psychosis. It is a dangerous drug and only used in difficult cases because of the many serious and not-so-rare side effects, but it is indicated for Parkinson's patients because, unlike many of the other drugs in this family, this one is less likely to cause tremors or exacerbate existing ones.

Michael has tolerated the drug very well, passing his weekly blood tests that monitor his white blood cell count, a test ordered by the drug company in case of the fatal occurrence of agranulocytosis, which, very simplistically, is the destruction of those important infection-killing cells leaving the patient very vulnerable. And he has experienced very few of the other nasty side effects. On the whole the drug has been successful and Michael has been very well the past few months.

But, since the fifty percent increase in this drug last August when he lost the connection with his world during a hospital stay, he has been more lethargic than ever. He rarely moves off the couch these days, not because he cannot but more because he simply lacks the will. He sleeps a lot and is more withdrawn than ever except for occasional moments when friends visit. For those moments he seems able to rally all his resources, physical and mental, surprising his guests who expect to see him in the near-zombie state I often see. (Could thirty-plus years of marriage be the real culprit?)

I am not complaining about the new calm that has settled over our lives, but, as the caregiver and always trying to figure out ways to improve his life, I have become worried about this immobility and the implications for other aspects of his health, such as his cardiovascular system that has already shown itelf to be compromised, and his musculature which is rapidly atrophying.

On thinking this through I jotted down these observations: Michael's psychosis is triggered by internal or external changes in his condition - constipation, urinary tract infection, a planned trip anywhere - and Michael's plunge into psychosis does not seem to be prevented by this drug when he does experience these changes. Ergo, perhaps the drug is not necessary, and the anxiety that bubbles up as a precursor to full-blown psychosis could be controlled by the other anti-anxiety medications I have at hand.

I had been thinking about this for weeks, probably because I miss my husband whose chattiness and sense of humour were always such good company. I haven't seen much of this man for a long time, I admit, well before the introduction of this drug, but he has gone even further away the past few months. So I decided, without consultation I confess, to pare back to the pre-August dosage which meant keeping the full 25 mg pill at night but not the more recently introduced half pill in the morning. My logic was that he might have more energy and less lethargy during the day but still have that nice hit at bedtime to see him peacefully through the night.

Wednesday was the morning for the first missed dose. Coincidentally it was also the morning for another task I'd been avoiding for weeks. Though I am conscientious about my own health, popping various immune-boosting remedies when the first sign of a cold strikes or just maintaining good nutrition and exercise so that I almost never get sick, I had to admit there was no home remedy for deteriorating eyesight and no substitute for the occasional visit to the dentist. So Wednesday was the day to book all those long-neglected appointments for myself and while I was at it, I thought I might as well book a dental appointment for Michael whose rapidly deteriorating teeth have been neglected since his care needs escalated back in November 2009.

There is a reason for my reluctance to visit his dentist. Five years ago, Michael underwent a routine root canal and at the time seemed to tolerate the procedure well. That evening he suddenly fell into a delirium we'd never seen the likes of before but with which we have since become all too familiar. He had his dinner, then started picking up invisible objects from the floor and pointing to and communicating with an invisible crowd in the living room. Not much later he fell into a frighteningly heavy sleep. I had no idea what to do so did nothing but wait it out, which, knowing what I now know about this disturbing condition and how it responds to hospitalization, was the best thing I could have done.

Since life has been so stable lately, I thought it was time to address the dental problems. As it happened, his own dentist could see him that afternoon. It was a free day (it almost always is) so I agreed to the visit which was just to be a cleaning and a check-up. I did have a moment of doubt that perhaps I should wait a day or two to see how Michael fared with the new drug schedule but then quickly discounted that and threw caution to the wind.

Anxiety almost immediately kicked in on learning of the appointment but did ebb away as the morning progressed. I assured him nothing much would happen that day. Even so, the visit was a bit challenging as he choked a lot through the cleaning process, but the hygienist was very patient and propped him up every few minutes to clear his throat. The only visible sign of anxiety I could see were his clenched fists but he declared he was fine whenever I asked.

The dentist decreed that one badly decayed tooth that had recently lost its capping would have to be extracted and two others filled. The extraction might be lengthy if the tooth broke in the process so it could mean up to an hour in the chair. I decided not to book the appointment immediately but wait a week to see if there was any fallout from this simple stage of the process.

I anxiously monitored his behaviour throughout the evening but there was no recurrence of the post-procedure delirium of five years ago, just a bit of agitation, nothing that couldn't be handled with a mild dose of anti-anxiety medication.

All was well the next morning, day two of the reduction campaign. Michael was noticeably more alert, more mobile, more communicative. Things were looking good; my experiment might be a success. But later in the day, some old symptoms reappeared. The nagging ache in his upper right abdomen returned which might be explained by the slowing down of his digestive system again over the past few weeks (the flax continues to work but less well than at first, forcing me to reintroduce small doses of the drugs) but I think it was a symptom of anxiety. More medication.

On Friday, day three, he was even more alert, That afternoon dear old friends dropped by for a most welcome visit and Michael was better than ever, partly because of the reduced drugs but mostly, I think, because of the happy visit. He joked coherently, making us all laugh. I was feeling happy and confident that my decision was right.

But Friday evening things began to change. The haunted, hooded look that crosses his face as the pre-cursor to psychosis had appeared. I asked him how he was feeling and for once he was able to give me a fairly detailed response. He said he felt so much more alert and clear-headed and enjoyed being back in the world but he recognized that the Darkness was approaching. An odd phenomenon I have noticed is that extreme delirium is always accompanied by increased mobility and intellectual activity. That's what I was seeing on Friday night. I asked him if he wanted to continue the experiment with the reduced medication and I could see he was torn, enjoying the renewed lucidity but afraid of going down that dark alley again. I realized I was too and I lost my nerve to continue. There is always the fear he may not find his way back the next time.

So today, day four, I resumed the full dosage of his Clozaril and he sank back into lethargy and calm. I also cancelled the appointment for the tooth extraction because he had become quite fixated on that. It can wait. It is difficult to say whether the increased anxiety was a result of the drug reduction or just the anticipation of the dental procedure. It is unfortunate that I allowed both to occur simultaneously because I will never be sure what was happening, but I am certain that with the significant increase in the anxiety and the wild look returning, it was too risky to continue. Obviously I cannot have both a lucid and calm husband. We are opting for calm.

"Perfectly balanced variation within sameness"* OR How to Survive the February Blues

2011-02-06T20:55:00.000-08:00

It's February and it's a Saturday morning. On the one hand I want nothing more than to curl up, read a book or lose myself in a long movie or two, my lethargy is so huge. On the other, it's a sunny, sparkly Saturday and, with the fat weekend paper spread out before me and my cup of tea, there seem to be endless possibilities to the day, if only I had the energy and a different job. Restless, yet enervated. Bad combination.

This is not a new state of being for me. For years I have battled mildly low spirits at this time of year. Who doesn't? The darkness is long even with the slight increases in daylight every day. The days are cold, triggering that hibernation instinct that most of us experience, save those who embrace winter sports. I do not anymore; I cannot with the restrictions Michael's care imposes.

But there are strategies I have found that work. These I have employed since the kids were little and often sick through the winter months, and then again through the long years we homeschooled, though then we were always very busy and active with little time for low spirits.

Routine is critical for me, but at the same time that unwavering routine that is so imperative for Michael's health can be oppressive. Every day his medications, dispensed five times a day, are administered with clockwork precision. The eighteen pills a day are essential if Michael is to have any hope of mobility or lucidity, but at least he takes fewer now than the thirty-plus a day of recent history.

Michael's routine rarely varies, especially during this current period of calm and relative well-being. Nearly an hour after his first dose of medication at eight in the morning, which is how long it takes his body to loosen up from the near-paralysis of the night, I lift him up in bed, clean and dress him, none of which he can do on his own anymore. I throw in the load of laundry generated through the night then serve him breakfast. He slowly eats and reads the paper, nodding off here and there. When it is apparent that he has fixated on the same word for more than about five minutes, I wheel him over to the couch where I prop him up with pillows, cover him with a blanket and turn on the television to a sports news channel; Michael snoozes peacefully most of the morning.

Afternoons are usually not much different. He doesn't really gain any significant wakefulness until about one or two in the afternoon, at which time he eats. Then I encourage him to move around the house a bit to get the legs moving while he can. Or, if he is really well, we try to walk around outside or hop in the car for a change of scenery. By three o'clock, he is running out of steam and is back in front of the television, if he ever left, nodding off again. Supper at six, more television in the evening, bedtime at ten when the morning's process is reversed, prayers, sleep.

These routines, in the comfort of his home, keep Michael on an even keel mentally. Any change can spell catastrophe without extreme vigilance on my part. Sometimes I don't know what the change might be because it is something silently and mysteriously lurking within his own body, my only clues being his mental state and the state of his bowels, accompanied by much guess work on my part.

So I have had to develop my own strategies for remaining sane in the midst of these rigid routines. I embrace whatever time I have to myself in the house which is only early in the morning and late at night when he is safely in his bed. At these times, though I am plugged into the monitor that allows me to be elsewhere in the house, I quietly enjoy my early cups of tea or, if it's late at night, I immerse myself in our luxurious claw-footed tub with a good book for companionship. Reading is otherwise difficult during the day with the constant drone of the television.

Every day I try to have a plan of action that I review in my head each morning. If it is one of the four three-hour shifts that our caregiver comes, I have plans to go out, even if it's just to walk the dogs and shop for groceries at the nearby store. Monday morning I always meet a good friend for a walk and breakfast when we rehash the week's events in our respective families. Tuesdays I work across the street at my favourite place with my favourite people on a volunteer project we've all been committed to for years: the Nearly New Shop processes and resells gently used clothing, the significant proceeds from which go to support various worthwhile community, national and international charitable projects. I love the work; I love the people. They feed my soul. Other days I may simply have a plan to do housework or a workout in our basement while Michael sleeps.

As long as I have one thing planned I am content. I don't even have to be rigidly fixated on completing it; I could be easily derailed by something else that comes along, like a wonderfully long and unexpected phone call from any or all of my children. But I must have something to anticipate every morning to give the day some shape. The rest of the day I can fill in with small projects like knitting and writing and the endless tasks of caregiving. Variety of activities throughout the day is essential.

I have also learned that I need order and cleanliness in my environment so I take a great deal of the time available to me to ensure that chaos is controlled. It is a small thing but I do believe that order of the mind is maintained by order in my environment, inside and out. I take immense pleasure in keeping house, something I am nearly shy to admit. I plug myself into my ipod with loud, usually testosterone-driven music blaring, while happily vacuuming, singing, dusting and dancing with my partner the mop. Fortunately Michael is extremely good at sleeping through very loud noises and has even slept through shoving his couch around to clean underneath. I knew those weight lifting exercises would come in handy for something.

Internet provides a link that allows me to keep in touch with the world at large without having to engage in long conversations with folks over the phone if I lack the energy for such things. Facebook, msn and email keep me connected and anchored to the world, assuaging that feeling of isolation, adrift at sea, that can overcome caregivers in the winter. And a laptop with WiFi is critical for flexibility of movement.

I cannot say enough about friends, family and neighbours who, though this has been and will continue to be a marathon event, keep in touch and help out when I need them or simply are a friendly, smiling hello in the street. I am far better at asking for help than I ever used to be, but I am also aware that this is a very long- term commitment and I must not wear out any one person's goodwill. Fortunately there are many to dilute the requests.

I am also blessed with a cheerful and competent caregiver with whom Michael is very comfortable, as comfortable as he is in my company. A telling sign of his ease with her is how readily he will fall asleep in her company. With visitors he sees less often, he will force himself to stay awake and strive so hard to be engaged in conversation, a very, very difficult task for him. Afterwards he collapses with fatigue, but I believe the effort he must make is good stimulation and it is usually rare enough that he has plenty of recovery time in between.

I have to protect my own health in this endeavour because I have learned that if I get sick or injured this ship is at serious risk of sinking. To that end I have found that regular meals and healthy eating are critical for both of us. When our family of four children was growing up, it was a wonderful time of laughter and sharing even if loud, raucous and sometimes argumentative. I have mostly enjoyed the meal planning and cooking experience though there are times when I could hurl the pots out the window. Our meals, with just the two of us, after all those years with loud, riotous children, are usually spent in monkish silence, but I believe there is still much value to breaking bread together. It provides a semblance of the normalcy of family life, at least, and I believe that contributes to Michael's continued connection to his environment.

Sleep, of course, is essential to good health and good spirits. These days I am getting plenty, but I am always aware that could change in a heartbeat. With recent adjustments in medications, Michael now sleeps very well with only the occasional restless night which I can usually predict from the day's activities and emotions. If anyone is going to wake me in the night, it is more likely to be one of our aging dogs with their weakening bladders. I am a huge fan of afternoon naps, and Michael's usual sleepy demeanour allows lots of opportunity for a snooze together. It is a warm, intimate time, the two of us spread L-shaped on our couch for about an hour most afternoons.

After painfully putting out my back four years ago and eschewing all but the most minor of pain relievers, I went on a campaign to eliminate the recurrence of the problem by embarking on a regular exercise programme. Last Mothers' Day, to augment my routine, I bought myself a third-hand elliptical machine that creaks and groans more loudly than my own body but it does the job. Combining that with strengthening exercises, I have managed to lower my risk of back injury significantly and have flattened the old abdomen as a bonus, for what it's worth. While Michael naps I slip down into the basement and, once again, out comes the testosterone-fueled music which motivates me and allows a lapse into fantasy; Annie Lennox's raunchy "I Need a Man" fits the bill too, even if her "Sisters are Doing if for Themselves" more aptly describes that aspect of my life. Did I say monkish?

I have two regular days a week that I am without respite so I make the workout the plan for those days. But at least four days a week I can get out for brisk walks with the dogs, an activity I prefer to the workout, but the effects of the two are quite different: Peaceful, meditative walks alone in the fresh air and nearby forest feed my spirit, whereas the exercise programme is purely for strengthening the body.

This morning, for once, I had no real plan beyond the usual routine, so a rare but brief sense of despair and lethargy had time to morph into a restive streak. Sometimes on a weekend, volunteers step forward for an hour allowing me time for a walk, but today nobody came. My restlessness mounted throughout the morning, the sunshine beckoned. In frustration, I declared to Michael that we would go for a walk or a drive in the afternoon, and before that, while he slept, though I hadn't planned to, I threw myself into some housework that didn't really need to be done. In the end, the housework got done around surprise phone calls from my girls, and we only got out for a short walk. Michael's meds ran out and I had to run to get the car, putting a quick end to our stroll, but I think we both felt better for the five minutes in the sun.

So, it turned out to be a good day after all, a full day when I was afraid it would drag. No plans, but my family and the physical activity of creating order in my home came to the rescue. That and the music of a few rock stars.

* from Lionel Shriver's "The Post-birthday World"

Our Daily Bread

2011-01-13T16:15:00.000-08:00

One day last week was bread-making day. No, more accurately, it was bread-making month or even year; it had been a very long time indeed since my bread-making machine had seen the light of day. I was not driven by any virtuous motives or new year's resolutions to eat more wisely or more frugally. I was simply cleaning out a cupboard from which a suspicious smell was emanating, worried that the mice had moved in again for the winter and were perhaps living and dying in my kitchen.

Everything came out of the cupboard, prompting that purging instinct I have when faced with a cluttered mess. I discovered, among all kinds of now useless odds and ends - old thermoses and lunch boxes, as well as a multitude of plastic containers - not one but two bread machines. Apparently one such appliance is not enough, even when the cook never makes bread. Then I remembered why I had two. I had found the second machine at our local second-hand store; it was an exact replica of my own which happened to be missing a very essential part, the small mixing "paddle". I had kept my own incomplete model just in case the piece decided to reappear one day, because it seemed such a shame to toss out an otherwise perfectly good appliance. It hadn't occurred to me yet that I could simply order a new part, especially since a much cleaner and newer model had fallen into my possession for a very low price.

So the mice (who had, in fact, taken up residence in the cupboard, but who really couldn't be blamed for the smell, which in the end came down simply to bad housekeeping) can be credited for my renewed enthusiasm for this most ancient and revered of domestic tasks, made so simple by wondrous technology. I bought yeast and set to work planning a meal of soup and warm bread for supper. I started early in the day to be sure the bread would be nicely cooled and crusty by mealtime.

The entire process takes only about two and a half hours. The machine mostly sits quietly on the counter, resting and raising the dough, then baking it. On occasion it emits a nice purring sound while it stirs things up or an intermittent beep to alert the cook of certain stages. Nothing could be simpler. That is, unless the power is cut.

The machine was doing its thing when Michael needed lunch. I was preoccupied with something nearby, but since he only wanted a toasted bagel, I let him do most of it himself. Toasting is still a manageable task most days. I was not paying close attention, but something in my brain registered the drop of an electrical plug onto the counter. My reaction time was certainly not lightening speed; it was probably several seconds before I realized what he had done. For no apparent reason he had simply unplugged my machine, even though the toaster was already connected to the same wall outlet.

At first I didn't realize that this amounted to a bread-making catastrophe. I naively thought I could just plug the thing back in again and carry on. What I learned from the handy little manual is that when this happens, the current bread-making mission must be aborted. No salvaging possible. Red alert. ARGH!!!

I was so frustrated that I couldn't think straight. My immediate reaction, when I thought the whole loaf would have to be discarded, was to jump up and down, waving the instruction manual threateningly at no one in particular and uttering expletives. Michael, who by now was happily munching away on his bagel, looked bewildered. He'd already forgotten he'd unplugged my machine, if it had even registered in the first place. He must have thought I had lost my marbles. I thought I had too.

You might be thinking, quite justifiably, that my reaction was a tad extreme. I am normally so calm and composed that I rarely have such a tantrum. In fact, rare would be an exaggeration. I NEVER have tantrums, especially over such silliness as a spoiled loaf of bread. I ran up to my room, locked my door, threw myself onto my bed and sobbed. After about three minutes of these histrionics, I came to and realized I could quite possibly salvage the loaf after all, since it was very close to completion; I could simply throw the metal canister into the oven to finish off the baking process. When that was done, just in case it hadn't worked, and since there was still plenty of time before supper, I set to work making another batch in the clean canister from the second machine (Ah-ha, the real purpose of the second machine was now crystal clear). I had retrieved the only paddle from the first, possibly failed loaf and inserted it into the fresh canister. In the end both loaves turned out beautifully, and I felt very sheepish indeed. Fortunately, Michael remained completely unperturbed by the little tempest that had swirled around him so I suppose I can at least congratulate myself that on the Tantrum Richter Scale, mine was probably only about a 3.0 and barely felt.

Later in the day, with the sun set and the kitchen cleaned up after the successful evening meal, I reflected on my dramatic reaction. I think it was more symbolic than anything because the bread really didn't matter to me. It wasn't as if I had never had kitchen failures before. No, it was more about that plug being pulled and what that represented to me.

"Pulled plugs" have been my recurring theme this year. I have learned over the past year not to make any real plans because usually they must be cancelled or aborted. I have come to see a pattern in Michael's mental and physical health. Whenever something out of the ordinary is looming, like a planned trip out west to see my sister or a carefully planned day-trip to Montreal for our daughter's graduation, Michael starts to slide into a serious mental health crisis often accompanied by alarming physical symptoms. All must be abandoned. When this same daughter made plans to travel to Indonesia in August for a four-month teaching contract, he went into sharp decline again and had to go to hospital twice that month with very serious consequences, as you might remember. When she asked if I thought he might be upset and worried about her leaving, I had to admit she was probably right. But when she offered to cancel her trip, I told her she must go. I had long ago resolved that the children's lives must carry on as normally as possible. It is not their place to put their lives on hold.

I have no proof, of course, that this is what caused August's melt-down, but it does seem to fit this pattern I've now seen repeated many times. He has no control over it, of course. Having made this connection, I now know how to try and avert disaster, partly by never planning anything that might upset him, which means most things I might want to do. But some things are unavoidable. As I wrote in a recent entry about Christmas, I was uneasy about how he might handle a houseful of boisterous family over the holidays. I was very vigilant for several weeks before their arrival and did notice a significant slowing down of his bowels, always the first sign that he is struggling quietly inside. I administered the occasional laxative and was conscientious that there should never be more than two days without action. Despite my interventions, everything did come to a grinding halt for him in that department over the three days everyone's visits overlapped. But I was able to get him back on track soon after, probably because the house started emptying out and he began to relax.

We have a big event this summer that has me worried he might pull the plug on this too. One of our daughters is getting married and our plan is to host the event in our own backyard. An event anywhere away from home would mean limited participation by her parents since Michael cannot endure any lengthy event away from home or away from me. This way he can, I hope, retreat to his room if he needs to but can at least see his daughter married and maybe even partake in the wedding supper. It will be a very simple affair, but it will mean a fairly large gathering, the likes of which he hasn't experienced in a long time. I will try to plan for every possible eventuality and not be shy about administering calming medication if necessary, but given his fragility, a melt-down may be unavoidable. He remains the wild card and could scuttle the entire event.

Many have suggested I consider placing Michael in a nursing home now that his care needs are so extreme at times. I have investigated the possibility but have come to a decision, at least for now while I still enjoy good health and strength myself. To take Michael out of his home, which is the only place he can be calm and happy, would mean the end of him, I am certain. I would be effectively pulling the plug on him, and for now, at least, I cannot live with that. As long as I can cope and remain healthy, he will stay at home but will have to endure the occasional shake-up of his otherwise quiet, calm existence. Things like family visits, dinners with occasional guests and even a wedding have to happen if I am to remain sane. We may experience some serious turbulence at those times, but, with careful planning, perhaps we can avert disaster. I have resolved that as long as he is happy at home and I continue to be his solace, all this I can endure. The moment I permanently become unknown to him and maybe also become the enemy, that will be the time to reassess, and plans are already in place for that eventuality. If home becomes alien to him then it won't matter where he is or with whom.

In the meantime, I will have to allow myself the occasional tantrum over pulled plugs.

"Skating away on the thin ice of a new day" *

2011-01-10T12:23:00.000-08:00

Canadian winters are particularly difficult for the disabled unless you live on the balmy southern west coast of this country, but even they have had their fair share of cold and snow this year, effectively paralyzing unprepared cities like Vancouver. Ours here in eastern Canada has been mercifully mild and dry so far, but then it is only early January and in a country where winter weather can occasionally strike as late as May, it is too much to hope that this might actually be the trend this year. If there is anything I've learned about Canadian winters it's that there are very few trends beyond cold and bloody cold with usually buckets, but sometimes truckloads, of snow thrown in.

But we in this household, at least those not responsible for the removal of snow and winterizing the family shelter (which is everyone but me), used to eagerly anticipate the season's harsh blasts. Winter means skiing on local hills, skating on Ottawa's lengthy canal, and, above all, hockey and a backyard rink.

Our first backyard rink was lovingly crafted by Michael back in 1984 when our eldest child was only three. We had bought her those little skates that one attaches to the boots of small children. They have two "blades" but really are just pretend skates to fool children into venturing out onto that slippery stuff they can't stand up on. One can never learn to skate in those things, just stand up, if you're lucky. But our little Anna tottered out onto her very own rink, a mere 4'x6' little space on which she'd have been hard pressed , even if she could skate, to gain any speed and momentum before tumbling headlong into the surrounding snow. I can accurately report she did NOT learn to skate that year.

For the next few years, while we lived in the heart of the city, Michael gave up on future rinks in our too-small backyard and instead we made many forays to the famous Rideau Canal in Ottawa, an eight kilometre long skating rink cutting right through the centre of the city. I remember many a romantic late-night skate with my new husband back before children, and even after the offspring began to arrive, we still made time to go with the kids, or even without on the occasional lucky night out (It's one activity we both felt our children should learn given how much pleasure it gave both of us). Often there was a baby bundled into a stroller but our first child seemed born to skate, just like her dad. No stroller for her. By age four she could skate the entire length of that canal like a pro and even conned her uncle into sponsoring her in a fundraising skate-a-thon one year. He foolishly pledged an enormous amount per lap thinking there was no possible way this child could skate THAT far, and he ended up forking out a rather large sum of money to a very smug little girl.

Our next rink didn't materialize until after we had moved into our current home that sits upon an enormous acre lot on the outskirts of the city. But given the constraints of Michael's work and domestic duties (and, now I realize, the quiet but inexorable progress of his disease), there was little time to really devote to this all-consuming task. There were one or two over the first years in this home but generally the learning-to-skate duties fell to me who homeschooled these four children and spent the most time with them. I discovered local arenas that offered free skating twice a week throughout the year so that became the biggest part of our phys-ed programme. Often we were the only visitors and had the entire arena to ourselves. We happily did laps to lousy pop music, and races were held up and down the ice. Anna practised figure skating moves she'd taught herself. We almost always hit the doughnut shop for treats afterwards.

None of our kids ever had a single skating lesson, my approach being more from the sink-or-swim (skate?) methodology books. But they all learned to skate, some better than others. I skated for so many years pushing one child then another in a stroller on the ice, I was worried that when the last one grew wings on his feet I would be incapable of standing up without the comforting support of a child in a stroller. I was never as confident as my husband on skates.

It was once our youngest child, our only son, began hockey and became an addict like his dad that the real devotion to the backyard rink began. With a vigour and enthusiasm heretofore unseen for this task, Michael would start to plan the rink as soon as the snow started falling, spending hours packing it down, perfecting strategies over the years for flooding and creating the ideal rink which, of course, was always subject to the vagaries of the weather. Every year it expanded as the youngest grew into a more confident hockey player. They would spend hours out there passing the puck and taking shots on goal (we have a full-sized hockey net, of course). One year our son laboriously painted wobbly lines on the ice with his little paint box. Only a few years ago we spent far too much money on a "Zamboni" made from sewer pipes, towels and an attachment for the hose; it actually works. Dedication was complete, nearly a religious experience.

Over the years the disease wore my husband down and the task became too onerous. He would try but couldn't really carry through because physically and mentally it was becoming too difficult. Confusion had taken hold of his brain, making the planning and execution impossible.

But a wondrous thing had happened in the years that father and son had worked side-by-side on this shared passion: our son had learned the family business and started to take over. There were a couple of difficult years as the baton was being passed, while Father came to terms with his interfering disease, demoting him to support staff, and Son took over as the Boss, making all the decisions about the construction. Finally, Michael seems to have accepted his subordinate role and is simply happy to contribute.

This year the rink construction began just before Christmas, but with our son's busy work and social life, it wasn't looking terribly hopeful that this project would take off. I questioned why he had even started, given his limited available time to devote to it, but his response hit a chord with me. He assured me that really it didn't matter if it was ever completed. What mattered to him was the process and how much he loved it. This I realized was true of his father who seemed so much at peace engaged in this rather Zen-like activity. A perfectly finished rink was just a bonus, not necessarily the goal.

I realized another thing too. Our son's initiative this year has been a gift, something for his dad to enjoy. With all the drama surrounding Michael's health last winter combined with unfavourable weather conditions, the rink never got started. With winter now upon us, Michael has become almost completely house-bound and unwilling to go anywhere. The effort seems just too Herculean. He spends most of his day dozing on the couch in front of the television, and when I ask if he'd like to go outside with me, he nearly always declines. But as soon as our rink got to the point where it actually looked like more than just packed down snow, there seemed to be a renewed interest in the outdoors. Every morning I prop him up in his hospital bed, fling open the curtains and let him see through his window to the backyard. He quietly assesses the progress our son has made overnight, most of the work being done very late after all have gone to bed as his dad used to do in the good years. In the afternoon when Michael is at his best physically, I find him pulling on his boots and coat preparing to go out and have a look. He inspects the rink for the weak spots that need extra attention and then, with my help hauling out the hose for him, he sets about flooding. He falls all the time, every few seconds in fact, but he is undeterred. He pulls himself up on the ice, no easy feat for someone with advanced Parkinson's disease, and carries on, usually in a rather haphazard, confused fashion but who cares? I am vigilant at the living room window, seated at a table and pretending to type on my computer; I don't want him to think I am really just keeping an eye on him. When it looks like he can no longer carry on I suggest he come inside before he seizes up completely. His pants are drenched from the many falls into the unfrozen water and his back is obviously hurting but his cheeks are flushed with fresh air and pleasure.

I miss skating with my husband. After he left work disabled in 2003, we would seek out those same arenas I visited years ago with our kids, this time for seniors' free skate. On a good day he might last about fifteen minutes before collapsing with exhaustion. For the first time in our lives together I had become the better skater, a distinction I'd rather not have. Now he in his advanced condition and I still fearful after breaking my wrist skating on the canal two years ago, we will probably never skate together again.

But I can help him in small ways to get out and happily lose himself in a few minutes of rink-building. And perhaps he'll even strap on those skates again this year.

(* from Jethro Tull's "Skating Away")

Bittersweet

2010-12-29T17:10:00.000-08:00

Christmas 2010 has been and gone, accompanied by a host of strong emotions.

As a Baha'i, Christmas is no longer my holiday, but as I have been the sole Baha'i in the household for years until Michael himself declared last year, and since Christmas was a strong tradition in our household and extended family long before I chose to follow this Faith - for which one of the main pillars is an acknowledgement of the equality of all religions - I feel it is entirely appropriate to continue the practise of this tradition which for me has always symbolized unity and love and a celebration of the light that Christ brought into the world, a light shared by all the world's great religions.

The preparation for this glorious life-affirming celebration is long for me. This year I started in the fall with my various knitting projects that kept me sane through a quiet season and will continue to sustain me throughout the long winter months. I furiously knitted my way through five pairs of zany socks and three scarves, completing my last project mere hours before deadline. All that aside, there was also shopping, cooking, cleaning, and bed-making for our now large family of four adult children and their various partners, all of whom descended for a rare family reunion. All these tasks had to be carried out around my caregiving duties.

It was a wonderfully loud, boisterous, laughter-filled, exhausting few days, with our healthy, happy children, reminding me that I am, in fact, getting older and far less tolerant of the late-night chat sessions I indulged in for two nights before I succumbed to fatigue on Christmas Eve and retired before midnight. I love it all, but this year, the evening when the last out-of-town offspring and her fiance left, I collapsed on the couch and languished in front of the television for three hours of what amounted to more napping than viewing.

But it has been a celebration tinged with very mixed emotions, not the least of which was a strong sense of gratitude that we still have Michael with us, something I cannot take for granted given the dramatic events of the past few years, beginning with a mild stroke in September 2006, followed by a heart attack five months later and a host of other calamities since then, most of them documented in these pages. The previous Christmas had been difficult as Michael struggled to adjust to the new powerful neuroleptic drugs administered in a desperate attempt to stabilize his wild psychosis. He was still suffering from extreme anxiety attacks, and Christmas day last year, with a houseful of guests, sent him into a particularly deep and harsh attack requiring extra calming medication and time out in his room away from the crowd. I was so busy with meal preparation that day that I had to recruit kids and guests to take turns sitting with him in his room to keep him calm. Finally after two hours he was able to rejoin the crowd.

So this year I braced myself for a replay of last year's events. But, perhaps because we were a smaller group of family and close friends, only eleven, or perhaps because he has generally been so much better the past two months, mentally and physically, he was happy and stable all day and truly seemed to enjoy having his rambunctious and adoring offspring around him.

I was grateful for the stability because I was battling my own emotional turmoil. It has been a very sad year for me and Christmas Day was especially poignant. It marked exactly a year since my dear brother-in-law had died, leaving behind my very sick sister and their only daughter who has had a heavy load coping with her mother's care. Fred died quickly of cancer but had been my sister's primary caregiver for years, only giving over her care to others when he was too ill to continue himself, a few short weeks before he died. That same December we also lost two members of the same branch of our extended family in England, my cousin and his mother, one leaving the week before Christmas, the other, the week after, with my brother-in-law sandwiched in between. A very sad time indeed.

Christmas morning I opened a gift that my sister Ann had clearly had a hand in choosing. Baha'u'llah, the founder of my adored Faith, had a fondness for roses. One day many years ago I mentioned this in passing to my sister when she was still quite healthy. Since then, every single gift she has given me over the years has had roses as the predominant theme. There have been quilts, paintings, carved wooden boxes filled with rose-petal potpourri, and diaries, all riotously covered in roses. Last year there was nothing from her for Christmas which didn't surprise me given how challenging their lives had become. Her continued survival was gift enough; so imagine my surprise when a small package arrived a few days before Christmas this year. Knowing how very ill she has been lately, in and out of hospital with her cancer, a stroke and related problems, I was sure Ann had sent her daughter out to buy the small gift for me, or even that her daughter had shopped without consulting her mother, but when I opened it I wept, realizing Ann had at least had a small part in its purchase. It was a tiny little porcelain pot with a hinged, clasped lid and a thin vertical slit up the side, a mysterious little gem, but it was the pretty painted roses all over it that made me cry. Ann had obviously been thinking of me at a time when she is clinging to life by a thread.

As I sat and wept for a while, my children assured me it was appropriate to remember those we have lost and are close to losing. We all quietly took another few moments out of what would be a hectic day to remember another passing. Only weeks before Christmas this year, on December 2, I lost one of my oldest friends to a horribly violent, murderous attack on his sailboat with his adult daughter, stranded in a sheltering cove from a stormy sea. A seasoned and cautious sailor, Milan was travelling from Honduras to Panama when pirates killed him in what was probably an attempt to board the boat and rob him. He had enough presence of mind to slip the only weapon he carried on board, a flare gun, behind his daughter while he tried to help these violent men whose ruse was to ask for assistance with their motor. As Milan bent over to help them, they shot him four times, killing him instantly, but his daughter miraculously was able to scare off her father's attackers by waving the flare gun and shouting, "What have you done?" They fled but left her to survive seventeen hours in stormy seas alone with her dead father before being rescued. The horror of this story still haunts me, and the ache of losing my old friend, whom I met in 1974 when I was still just a kid of seventeen, is sometimes overpowering. Our families were close for years when our kids were little, and he managed to keep in touch with us through the difficult years of his divorce, visiting us for the last time just last summer. It comforts me that he looked so well and so happy after years of sadness, so obviously enjoying his new life as a sailor in the Caribbean.

I sit here writing, feeling somewhat spent and emptied in the wake of these powerful emotions. Christmas is always a wild, busy, happy time for us with a large family but this year there is so much to be grateful for and so much to be saddened by that my heart nearly burst.

The Thread of Life

2010-11-21T10:04:00.001-08:00

I have abandoned writing lately and thought I should explain why. After I wrote the piece "A Stern Talking-to", I did, in fact, have that serious chat with myself and took action. This is a process I have had to repeat every fall for the past few years as winter approaches and I find myself dreading the long quiet dark days ahead. This year is no different.

It was through the process of writing, actually, that I came up with a solution. I recently wrote a short story based on our aborted trip in October 2009 to the west coast to visit my very sick sister and her equally sick husband, who died only two months later. We never made it because Michael's battle with deep psychosis peaked on that long train journey and we had to jump off in Winnipeg to return home immediately. I was deeply saddened and disappointed not to see my sister for what I thought might be the last time. As it turned out we never saw her husband again.

During that voyage I had started a new knitting project to while away the hours of a six day train journey, three days each way. But with Michael so ill I had little opportunity to accomplish much the two days we did spend on the train. All my energy went into keeping him calm which during the night was nearly impossible. During the day when the daylight pushed away the demons, we both succumbed to naps, leaving my knitting project mostly untouched.

On returning home I resolved to finish the project through the winter months but I didn't realize how challenging that time would be. It was a period of adjustment for both of us: for Michael there were months of difficulty adjusting to the new drug regimen with extreme peaks and valleys in his health; and for me there was the challenge of just staying on top of all the new duties thrown at me with a now very disabled husband, both physically and mentally. So the knitting sat ignored. Every time I did have an opportunity to work on it I found myself completely uninterested. The project languished in my knitting bag.

Processing that ordeal through writing, I realized the real reason I was rejecting the project. It represented something of a chronicle of that terrible experience on the train that I had little interest in revisiting . I felt no pain or anguish on picking it up, just an overwhelming fatigue and annoyance. I wanted nothing to do with it anymore. I had at first thought that my reluctance to pursue the shawl was a lack of interest in knitting in general but it was when I made up my mind to give it up completely and start something fresh that I suddenly felt excited about my hobby again.

Recently, whenever I have had a moment of respite, I'd rush off to the wool shops and spend a happy hour or so poring over the pattern books and the vast array of splendid colours each store had to offer. I spent far too much money on complicated patterns, so convinced was I that I could tackle anything. I spent money on wool and triumphantly brought home materials for several projects. I started on one very difficult cardigan pattern for myself but quickly realized that my concentration was impaired by the constant din of the television, Michael's sole source of entertainment throughout the day. And I couldn't abandon him and flee to another room to pursue my hobby; I needed to be close by in case he needed me.

I settled on more modest projects, easily completed in a few days, and I am on fire. I've thrown the old shawl into a closet where I'm sure it will live out it's days until I decide to unravel it and start something new with it. In the meantime my current projects beckon to me throughout my day, urging me to finish them, so eager are they to become whole and functional. I find myself rushing to finish up my various domestic duties, so eager am I to sit with my new friends. And the television, which two months ago I thought might completely derange me, has become a nice backdrop to my simpler projects. Michael and I sit companionably, he watching or snoozing through his various sports shows and I happily knitting away.

With this entire commitment to Michael's care, I cannot look further than a few months down the road. I have given myself permission to reevaluate my own strengths every once in a while and not look beyond. It is why I think I am having difficulty committing to a long complicated project; it's easier to see the endpoint with the shorter ones.

So, dear Readers, if I abandon my writing it is because, for now, at least, I have a new love, and like a new love, I cannot quite get enough of it. It is making the prospect of a long quiet winter more than bearable.

In praise of the humble flax seed

2010-10-09T17:00:00.000-07:00

Just when you think things could never get better, after two months of a variety of extreme symptoms, some brand new developments, and serious mental illness, suddenly the sun comes out and you realize that your dear husband is actually much better than he has been in months. Miraculous? Maybe not.

The extreme abdominal pain that sent Michael to hospital in early August, that had been working up to that climactic moment for months with daily anxiety-causing discomfort, has completely disappeared.

The alarming breathing issues that also climaxed in late August, resulting in another more prolonged hospital stay, also gone.

The kidney/urinary tract infection that for two weeks caused all kinds of pain, restlessness and delirium - gone. The bad cold that followed close on the heels of that infection and threatened to descend mercilessly into his lungs, that kept him and me awake for two weeks of horrible coughing - gone. Mind you there has been a temporary recurrence of bladder issues in the past week, but it was milder than the first a month ago. That, I fear, will be an ongoing issue now.

Michael lurched from crisis to crisis for two months and things looked very bad. His mental state had deteriorated to the point that he was even unaware of his own identity many mornings and on several occasions he was unable to identify me or his son. He was eating very little, losing weight rapidly. We were all once again braced for the worst. I was reviewing my finances, generally making sure, as well as I could with a serious sleep deficit, that all our affairs were still in order.

Gradually over the past month, as I emerged from under the heavy cloud of insomnia, I realized that Michael is more lucid and generally healthier than I have seen in quite a while. This does not mean that the severity of his Parkinson's symptoms has improved; in fact, if anything, he is far less mobile, he is still falling and he is sleeping much more during the day. But the summer complications of the disease, that at times made me think Michael was on the brink of death, have all but gone. And a most life-affirming development, his appetite is once again very hearty.

I have given this return to health much thought and I think there are several factors at play here. One may be (and I'll get this one out of the way quickly for those who are uncomfortable with any mention of spiritual matters) that just about everyone I know, and probably even more, has been praying for him. I am a firm believer in the power of prayer and positive thinking even if it is simply an awareness that others are thinking of you. It is empowering. I won't cite here any of the scientific research done on this mysterious force but it does exist.

Another factor is that Michael often takes weeks to recuperate from a hospital stay. If you have been reading my entries you will be aware how devastating a hospital stay is for Michael, and the longer the stay, the longer the recovery time. In August he had two visits within a couple of weeks of each other, the first one lasting two nights, the second, eight nights. We are now more than eight weeks away from that last visit.

An adjustment in medications is also a possible reason for the improvement. The neuroleptic drug Clozaril, that was prescribed last November when Michael was so mentally ill, was increased slightly during the most recent stay in hospital for the breathing issues. It takes at least three weeks for any change in medications of this kind to take full effect. Since the cause of those breathing issues still remains a mystery - lots of conjecture but nothing certain - maybe this adjustment is finally having its full effect in controlling the frightening breathing irregularities. I'm not sure how but I'm willing to keep an open mind. The drug itself is a very dangerous one and makes me very nervous but to return to that frightening pre-drug state I believe is not an option.

A couple of weeks ago, I expressed concern to the visiting doctor that Michael's blood pressure and heart rate had both been alarmingly low. I asked if there was any way we could reduce his diuretic. The doctor agreed that of all the heart drugs Michael is on, this one made the most sense to adjust, so the next morning I reduced his Apo-Hydro by fifty percent as instructed. Since then his blood pressure has still been low but slightly improved. That could explain some of his general improvement; low blood pressure makes him feel extremely tired and lethargic and causes more falls.

In consultation with the neurologist, I have reduced his Parkinson's medication by twenty per cent. The reason for this change was survival, my survival. While he was in hospital for the longer stay in August, he was so delusional and anxious that he became aggressive, constantly trying to flee. The staff resorted to hiring guards and restraining him physically whenever I or anyone else he trusted wasn't there to keep him grounded. I suggested to the staff that they reduce his Parkinson's medication, thereby disabling him throughout the day more effectively and safely. On his return home from hospital I resumed his normal levels of the drugs but, when he fell ill with the urinary tract infection in September and became very agitated and manic, I once again reduced the drugs by the same amount. What I have discovered is, that with carefully timed doses, he is actually no more disabled throughout the day; in fact he now enjoys more mobility during his more wakeful times and sleeps better at night. He always sleeps most of the morning so I can stretch the time between doses during those sleepy hours and shorten the time between the more wakeful afternoon hours.

But I believe there is one small change I have made that could be responsible for much of the improvement. Constipation has been an ongoing complication for poor Michael, and the treatment over the past year has been drug therapy. First a nasty overly sweet liquid called Lactulose was prescribed and as the problem worsened, it was increased to the maximum dose. Then a "natural" non-prescription laxative called Sennosides was added and gradually increased to above the maximum daily dose. Finally a stool softener known as docusate sodium (trade name Colace) was prescribed and, again, increased to the maximum dose as all the treatments became less effective over time. When he was up to twelve pills a day (eight Senna, four Colace) and four tablespoons of the sickly orange syrup, I became alarmed when things deteriorated to the point that for several weeks he was only able to evacuate using an enema. Though I desperately wanted to, I was terrified to reduce the drugs because I was afraid that removing them would exacerbate the problem. I should add that all the while I was using the time-honoured home remedies of increased fiber and lots of fluid, though nothing seemed to help.

It was a close relative who told me about the wonders of flax seed for such problems. I dismissed it at first thinking it would be no more effective than all the fruit, whole grains, bran and fluid I was trying to shove down Michael's throat. But after the last hospital stay when things got much worse and his abdominal pain was nearly constant, I realized there was nothing to lose in trying the humble flax seed which can be obtained very inexpensively in almost any grocery or health food store.

I started Michael very gradually with one teaspoon of ground flax, pulverized in my ancient blender and soaked for a few minutes in a tall glass of water. On swallowing this glutenous mass every morning, Michael would grimace but bravely persevered. Two days later we had action, nothing dramatic, but it was independently produced. Do you know how exciting an event like that can be after weeks of having to assist this poor man perform what should be a normal bodily function? I could have danced in the street. Actually I think I let out a joyful shout.

Every day I increased the amount (he is now up to and stable at a heaping tablespoonful daily), not wanting to overdo things too quickly in case it caused further abdominal cramping. But the first miracle, before even regular activity was established, was the almost immediate disappearance of that nagging discomfort. Even if nothing else was achieved, that in itself was a major accomplishment; every evening I had watched Michael doubled over and anxiously rubbing at his upper right abdomen.

Finally after a few weeks of his body taking over on it's own once again, I began very cautiously to reduce the laxatives. Every Saturday night, as I set out his medications for the coming week, I reduced one of the three constipation drugs very slightly. The first victory was to eliminate completely the Lactulose. Now a few weeks later I can happily report that he is down to one Senna pill and one Colace, a mere two pills a day, not twelve. My hope is that we will be able to eliminate the drugs completely and it seems that we might. I will, of course, keep them on hand. Once his body has been free of the drugs for a period of time, I believe they will once again be effective when and if we need to use them. But my first line of defence will be to increase the flax before I do anything else.

I am wondering, too, if the flax might be responsible for the elimination of the breathing problems. I know it's a bit of a stretch but, with the disappearance of the upper abdominal pain as more normal bowel activity resumed, perhaps there is less pressure on the diaphragm. I'd never be able to prove it, of course, but the breathing issues did improve along with the disappearance of the abdominal problems.

Whatever the reason for all of these improvements, I think the general reduction of medications can only benefit his overall health. Obviously Michael will never be drug free - he needs them to survive - but it is encouraging to see such positive results after such bleak expectations. I know there will be further challenges and mysteries that befall him in the coming months and years as this disease advances but for the first time in ages, I feel as though we have regained some control. And that is empowering.

A Stern Talking-to

2010-09-28T12:15:00.000-07:00

It's time for me to sit down with myself and have an encouraging but stern chat. September arrived damply and as we approach the end of the month the ground is now thoroughly soaked and my spirits are correspondingly heavy. Inertia has soaked into my body.

The last two months of Michael's battle with advanced Parkinson's disease have been more challenging than usual. Two hospital visits for a bowel obstruction (aka serious constipation) and severe breathing issues, a severe kidney/urinary tract infection and now a cold have been Michael's burden. We just seem to get back on our feet from one crisis when another follows quickly on its heels, leaving Michael even weaker each time. I have often said that with each crisis he seems to take two steps backwards, then one step forward, never quite returning to the pre-crisis state of health. What we have seen over the past year is a steady drop in his weight (30 lb. loss), a corresponding loss of appetite, less energy, more serious and frequent falls, more limited mobility and an overall decline in his general health. Hallucinations are becoming commonplace where before they were isolated to health crises, and confusion is increasing. Michael doesn't really become at all functional now until about two in the afternoon and is ready for bed by eight at night with many naps in between.

Michael's level of care has increased to the point that I must be that much more vigilant when he is mobile those few hours a day. Until recently I could leave the room comfortably and engage in a small project such as housework, cooking, gardening, writing, talking on the phone, but I must now be even more alert to potential problems. There is this new breathing issue that requires nearly constant awareness. There are bathroom issues. There is help with food and mobility. There is the nearly constant assistance he needs with the television which has become a huge mystery for him but as it is his only source of entertainment, I need to be alert to any trouble he gets into with channel changing or I will find him "fixing" the problem in an entirely inappropriate and usually destructive way.

As it has always been, it is my responsibility to change with the disease and adjust my approach to situations as they change day to day. I am usually very quick to adapt and like to think of myself as easily going with the flow. But lately I am finding the constant changes difficult to keep up with. Repeated sleeplessness makes me cranky and the mounting demands leave me frustrated sometimes.

This past weekend I awoke to yet another grey and damp Saturday morning and to the prospect of no respite all weekend. The desperation overwhelmed me and I found myself talking to my poor sick husband about my fatigue. I rarely discuss my own problems with him but suffering from a mild cold myself and feeling resentful that I could not take a moment to pamper myself, I felt I had reached the end of my rope. I told Michael that I might have to think more seriously about longterm care for him. He was mute through my tirade. I'm not sure he took any of it on board. Though the release of tears did me a lot of good, I desperately hope he has forgotten the entire conversation.

I find myself doing very little beyond the basics of keeping the house in order, cooking the meals and taking care of Michael. Anything I enjoy has been abandoned. I am watching a lot of television because it seems to be the only thing we can do together now. I just cannot seem to get interested in much else.

But when people miraculously showed up on the weekend after all when I was expecting no one, I realized that the support continues to be out there and I need to make the effort to get some projects going throughout what will probably be another harsh winter (we live in Canada, after all): abandon the boring knitting project that has lasted an entire year and gotten nowhere and find another more interesting pattern; get back on track with exercising as soon as I get some sleep banked; dust off my sewing machine and get something, anything going on that; overcome my reluctance to use my newish digital camera; scan older photos to share with people; maybe pursue more writing projects; find interesting books to read; anything that can fill my time within the confines of this house.

My parents came to this country from England 53 years ago when I was an infant and settled in remote small towns in Alberta and British Columbia where sometimes modern conveniences were non-existent (including plumbing in one community) and domestic labour for my mother was all-consuming. And yet, I never heard her complain about her isolation. She was always hard at work and found great satisfaction in her sewing, knitting, reading and community involvement when harsh weather conditions allowed. I believe she even found great satisfaction in her various and many domestic chores. She never drove and spent many, many days on end confined to small, cold houses with sometimes even limited telephone contact with the outside world. She was a very intelligent person and truly a pioneer woman, making the most of what was often a very difficult life.

It is her spirit I summon when I feel most alone and overwhelmed. I hear her firmly but patiently telling me to just get on with it and not complain.