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Friday, December 30, 2011

The Bed

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.

Thursday, December 22, 2011

The Anarchist

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?"


"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.

Wednesday, December 14, 2011

Sleepless in Chelsea

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.

Monday, December 12, 2011

The Persistence of Memory

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.

Tuesday, December 6, 2011

Proud Daddy

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.

Friday, December 2, 2011


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.

Tuesday, November 29, 2011

In Praise of Older Men

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.

Sunday, November 27, 2011

Football Fever

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.

Sunday, November 20, 2011

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

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.

Friday, November 18, 2011

The Walk

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.

Wednesday, November 2, 2011

Wealth and Poverty

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, 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.

Saturday, October 22, 2011


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.

Thursday, October 20, 2011

My Teachers

"..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."

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.  

Saturday, October 8, 2011

The Educator

"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.

Sunday, October 2, 2011

A Dream

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.

Friday, September 30, 2011

The Evil Eye

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.

Friday, September 23, 2011

A Fit of Pique

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.

Sunday, September 18, 2011

The Sound of Silence

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