My niece informs me it is now seven days since my sister has had any sustenance in the form of saline IV and more than eight since she entered her coma. The wait for the inevitable is an agony, but the pain I can imagine my niece is suffering at her mother's bedside is worse for me.
I flip back in my memory to the deaths of three parents, both of mine and, most recently, Michael's dad. All three were well into their eighties and all three took the long road home instead of the quick leap of a sudden death that has become a far more attractive route to me now that I've witnessed these three and am now awaiting news of the fourth from afar. Just today, in fact, I have informed my kids that short of taking a pillow to my face, they are to agree to whatever a doctor offers to hasten my departure if I decide to take the slow painful route. I must formalize that request because I would like to minimize their suffering.
My daughter recently read out to me a passage about women and waiting, though I think the phenomenon is not always exclusive to my gender. The gist of it was this:
We are generally the caregivers who minister to the sick and dying in our families, making their lives as comfortable and happy as possible, but waiting for the end.
We wait impatiently for men to ask us to marry them or ask us out (Though in our case, my husband proved to be not much of a self-starter and I had to take matters into my own hands in our courtship. I'd have waited forever otherwise). We wait excitedly to get pregnant or we wait as single, unattached women in a panic for our periods to come to confirm no pregnancy. We uncomfortably wait through nine long months for our children to gestate and then we wait through sometimes long excruciating hours of labour.
We are more likely to do the nighttime vigils with sick children who always seem their sickest and, in our addled, sleep-deprived brains, closest to death in the wee hours of the night. It was always my mother, not my father, who waited sleeplessly and anxiously for me or my sister, as carefree and thoughtless young adults, to arrive home far too late and sometimes too inebriated. To my knowledge, my brother spared my mother that anguish.
But it is this wait for the death of a chronically ill loved one that has a special agony. In Michael's case and in my sister's, their longterm ill health has brought them to the brink so many times that the rest of us should all be inured by now. Yet every night becomes a kind of vigil because it could happen anytime for Michael whose heart has proven wonky in the past. If he has even a simple cold, his mental state is altered drastically and threateningly, setting off the vigil alarm and triggering the wait response through long dark nights. I have spent many nights simply listening to the rise and fall of his breathing over the monitor to be sure he's okay, just as I used to when my children were babies. Every morning I lie awake listening for his breath before I brace myself for a day of waiting to attend to his every need.
Patience is a virtue, I hear.
Blog Farm
Wednesday, April 6, 2011
Wednesday, March 30, 2011
Volcanic Eruptions
The sunshine is full and warm, streaming through winter-speckled windows. It is one of the first real spring days we've had in a while and I nearly feel guilty for not stepping out, but fatigue weighs me down. No Workout Wednesday today. I was too afraid to be cut off from the ring of the phone even though I've never missed a call with earbuds plugged in.
My sister seems to be near her end. But this is my sister, so nobody, not even doctors well-rehearsed in such matters, is willing to make predictions about her. We've all come to see her as immortal, having survived so much over the decades of ill-health. She always pulls through. I am reminded of the birthday card I bought this year for my husband that held a large button pinned to the inside. It declared: "I've survived damn near everything". I made him wear it all day.
But this seems grave this time. Not that it hasn't been before but this is the first time she has retreated this far. She has been unconscious since yesterday afternoon after suffering a series of violent seizures and, some are guessing, a stroke or two which might be the cause of the seizures. Or, they speculate, maybe she is suffering the effects of the abrupt withdrawal of an anti-depressant she's been on for a few years. She has been on IV for over a week - no food - after something left her incapable of swallowing. But we've seen all this before, just not this severe and not with the loss of consciousness. She seems to be in a state of constant seizure, rigid and unresponsive, a life-threatening condition called status epilepticus, I believe
My niece is keeping me well informed during a nearly constant, solitary vigil at her mother's bedside. She sounds strong. She's coping well, it seems, but then she has had years of practice. Her mother first fell seriously ill two weeks after her birth. She is hesitant to declare it is nearly the end but she is bracing herself. We all are. How is it after years of preparation for this possible day of departure, we are still not ready? At least, I am not. Sadness bubbles up like hot lava all day long.
Last week, when we heard Ann was back in hospital, I momentarily entertained the thought of a hasty trip to see my sister in Vancouver. One of our daughters was to come home for the weekend. I could leave Saturday morning, be back on Monday when she had to return to her new home. Two nights of looking after Dad. I even went so far as checking flights and hotels, not really thinking this could actually come to pass. Yet I was feeling daring after, two weeks earlier, I had ventured out for my first successful evening of entertainment in a year and a half, with my very competent caregiver in charge for the six hour break. She was to feed Michael his supper, spend the evening watching a televised hockey game, then put him to bed, the first time ever someone but me would deal with that task. All went smoothly. It helped, I think, that I gave Michael no warning of this plan until the caregiver walked through the door. He seemed calm with the news that I was going out, except for a sudden concern about money and a momentary flash of panic in his eyes that seemed to ask if I was leaving him. I stuffed a twenty dollar bill into his wallet and went out to dine and chat with an old friend. I felt buoyed and confident this could be repeated soon.
But a weekend away could not be sprung upon him at the last moment. Packing and preparation would tip him off, so I mentioned my wish to go. Immediate fear crossed his face, his silent panic quickly cancelling such a crazy idea. I reassured him I would not go and he seemed to forget about it instantly. I could not leave my daughter alone to cope with the insanity that would most likely befall her father shortly after my departure. I know my husband too well to subject her to that.
My nerves are raw, intensified as well by unaccustomed disharmony in my family. An angry and hurt offspring broods silently from afar, scorched by rare but misspoken, judging words from me over a painful personal issue. My apology hangs uselessly between us. The imposed internet and telephone moratorium shrieks at me through the ether. I am chastened and destabilized. Michael seems to know that this, more than all the rest of life's issues right now, threatens to unhinge me. There are frequent anxious glances in my direction.
I must be careful to rein in my own anxiety or we will be plunging into our own crisis again. Two this week are quite enough.
My sister seems to be near her end. But this is my sister, so nobody, not even doctors well-rehearsed in such matters, is willing to make predictions about her. We've all come to see her as immortal, having survived so much over the decades of ill-health. She always pulls through. I am reminded of the birthday card I bought this year for my husband that held a large button pinned to the inside. It declared: "I've survived damn near everything". I made him wear it all day.
But this seems grave this time. Not that it hasn't been before but this is the first time she has retreated this far. She has been unconscious since yesterday afternoon after suffering a series of violent seizures and, some are guessing, a stroke or two which might be the cause of the seizures. Or, they speculate, maybe she is suffering the effects of the abrupt withdrawal of an anti-depressant she's been on for a few years. She has been on IV for over a week - no food - after something left her incapable of swallowing. But we've seen all this before, just not this severe and not with the loss of consciousness. She seems to be in a state of constant seizure, rigid and unresponsive, a life-threatening condition called status epilepticus, I believe
My niece is keeping me well informed during a nearly constant, solitary vigil at her mother's bedside. She sounds strong. She's coping well, it seems, but then she has had years of practice. Her mother first fell seriously ill two weeks after her birth. She is hesitant to declare it is nearly the end but she is bracing herself. We all are. How is it after years of preparation for this possible day of departure, we are still not ready? At least, I am not. Sadness bubbles up like hot lava all day long.
Last week, when we heard Ann was back in hospital, I momentarily entertained the thought of a hasty trip to see my sister in Vancouver. One of our daughters was to come home for the weekend. I could leave Saturday morning, be back on Monday when she had to return to her new home. Two nights of looking after Dad. I even went so far as checking flights and hotels, not really thinking this could actually come to pass. Yet I was feeling daring after, two weeks earlier, I had ventured out for my first successful evening of entertainment in a year and a half, with my very competent caregiver in charge for the six hour break. She was to feed Michael his supper, spend the evening watching a televised hockey game, then put him to bed, the first time ever someone but me would deal with that task. All went smoothly. It helped, I think, that I gave Michael no warning of this plan until the caregiver walked through the door. He seemed calm with the news that I was going out, except for a sudden concern about money and a momentary flash of panic in his eyes that seemed to ask if I was leaving him. I stuffed a twenty dollar bill into his wallet and went out to dine and chat with an old friend. I felt buoyed and confident this could be repeated soon.
But a weekend away could not be sprung upon him at the last moment. Packing and preparation would tip him off, so I mentioned my wish to go. Immediate fear crossed his face, his silent panic quickly cancelling such a crazy idea. I reassured him I would not go and he seemed to forget about it instantly. I could not leave my daughter alone to cope with the insanity that would most likely befall her father shortly after my departure. I know my husband too well to subject her to that.
My nerves are raw, intensified as well by unaccustomed disharmony in my family. An angry and hurt offspring broods silently from afar, scorched by rare but misspoken, judging words from me over a painful personal issue. My apology hangs uselessly between us. The imposed internet and telephone moratorium shrieks at me through the ether. I am chastened and destabilized. Michael seems to know that this, more than all the rest of life's issues right now, threatens to unhinge me. There are frequent anxious glances in my direction.
I must be careful to rein in my own anxiety or we will be plunging into our own crisis again. Two this week are quite enough.
Tuesday, March 15, 2011
Exercise
Last week I had every excuse not to start work on this year's income tax forms.
Last week it snowed. And it snowed. Our thirty-plus meter driveway is well cleared by a contracted snow-plough operator but the last ten meters or so, between house and shed, are too narrow for the fellow to pass with his truck. That and the equally long or longer wheelchair ramp attached to a large deck, several sets of stairs leading from various doors, and a path linking them fall to me to clear. Arguably I could reduce my work and simply clear one doorway and the ramp but I have a mortal fear that fire or some other calamity might trap us in a part of the house where I cannot get out with a severely disabled man. I am extra careful.
I used to clear the entire driveway myself - by hand - but as the years progressed and I aged, my dear old dad bought me a snow blower a year or two before he died. He hoped that the remaining offspring might take up the task and that I, at least, could be relieved of what he considered too much for one person. I actually loved the work and took delight in the fact that I was the only person - and the only female - clearing my driveway by hand and doing so quietly. I hate the roar of the engines and the smell they spew into the atmosphere from my neighbours' driveways. But the year we had over three meters, nearly four, of snow, I was damned glad to have that smelly, noisy machine. The offspring, by the way, are all but gone.
Unfortunately, arthritis has crept into my hands, leaving them swollen at the knuckles and, recently, quite painful. I found out the hard way that the vibrations from a snowblower exacerbate the pain to the extreme. I had to return to the old fashioned method.
Then one winter about three years ago, the children bought us that snow clearing contract. I had stubbornly resisted hiring one myself, my ridiculous sense of independence thwarting me. But when it was handed to me on a platter, during another winter of very deep snow, I was grateful. I have hired the same fellow ever since, contenting myself with the areas he cannot reach.
I sold the snowblower to a friend, hoping Dad wouldn't mind, resolving that once I can no longer do the small amount left to me, perhaps it would be time to sell this place. Last week I came perilously close to making that decision.
It's not that it was a huge amount of snow. Mercifully it came in several batches over many days, not all at once as it has done previous winters. The problem with snow in March is that it is usually very wet and very heavy so that even a small amount on your scoop or shovel becomes a challenge. I had thought that, so far, we had had a relatively snow-free year, but as I pushed heavy loads up what had become nearly two meter high snow banks, I quickly revised that assessment.
By the end of it all, my body was tired. But what I find more difficult is managing to complete the task while caring for Michael. If my caregiver is here, then it's easy to not worry, but if Michael is in the house alone, I am constantly popping my head inside to make sure he is okay, napping or watching television.
I survived the snow, of course, and probably became stronger for it, but I looked at my sedentary husband again and again over the week and resolved to get him moving too. Over the past few months, his mobility has nearly ground to a complete halt. Recent swelling in his feet and ankles highlighted the potential danger of inactivity. We try to get out for a short walk a few times a week but if the timing is off a bit, then we often get no farther than halfway down the nicely cleared driveway. A few times I have been able to lure him onto my elliptical machine, set at the easiest level, but after two minutes he is huffing and puffing, then he quits. It's just not very much fun.
Last week I had a brainwave and set to work to find and order a small, inexpensive gizmo designed for disabled folks in wheelchairs. It is a pedal machine with a very simple knob to adjust the resistance. Michael can be parked in front of the television as always and pedal away from the comfort of the couch.
It arrived at our door last Thursday. I had it assembled in five minutes and he set to work immediately. I am a realist; I know Michael's interest will wane, but the first three days, he actually pulled the machine out himself and sat for thirty minutes each time pedalling steadily. The machine can even be used on top of a table to give the arms a workout but that is slightly less appealing to him than using his legs.
The past few days he has not touched it much but, with the glorious sunshine and warmth, I've been able to drag him outside for short walks with only a few falls each time. Perhaps the hint of spring in the air is motivating him and giving him strength.
The swelling in his feet has receded and there has been no further snow since last week. Revenue Canada and Revenue Quebec are not very seductively calling my name.
Last week it snowed. And it snowed. Our thirty-plus meter driveway is well cleared by a contracted snow-plough operator but the last ten meters or so, between house and shed, are too narrow for the fellow to pass with his truck. That and the equally long or longer wheelchair ramp attached to a large deck, several sets of stairs leading from various doors, and a path linking them fall to me to clear. Arguably I could reduce my work and simply clear one doorway and the ramp but I have a mortal fear that fire or some other calamity might trap us in a part of the house where I cannot get out with a severely disabled man. I am extra careful.
I used to clear the entire driveway myself - by hand - but as the years progressed and I aged, my dear old dad bought me a snow blower a year or two before he died. He hoped that the remaining offspring might take up the task and that I, at least, could be relieved of what he considered too much for one person. I actually loved the work and took delight in the fact that I was the only person - and the only female - clearing my driveway by hand and doing so quietly. I hate the roar of the engines and the smell they spew into the atmosphere from my neighbours' driveways. But the year we had over three meters, nearly four, of snow, I was damned glad to have that smelly, noisy machine. The offspring, by the way, are all but gone.
Unfortunately, arthritis has crept into my hands, leaving them swollen at the knuckles and, recently, quite painful. I found out the hard way that the vibrations from a snowblower exacerbate the pain to the extreme. I had to return to the old fashioned method.
Then one winter about three years ago, the children bought us that snow clearing contract. I had stubbornly resisted hiring one myself, my ridiculous sense of independence thwarting me. But when it was handed to me on a platter, during another winter of very deep snow, I was grateful. I have hired the same fellow ever since, contenting myself with the areas he cannot reach.
I sold the snowblower to a friend, hoping Dad wouldn't mind, resolving that once I can no longer do the small amount left to me, perhaps it would be time to sell this place. Last week I came perilously close to making that decision.
It's not that it was a huge amount of snow. Mercifully it came in several batches over many days, not all at once as it has done previous winters. The problem with snow in March is that it is usually very wet and very heavy so that even a small amount on your scoop or shovel becomes a challenge. I had thought that, so far, we had had a relatively snow-free year, but as I pushed heavy loads up what had become nearly two meter high snow banks, I quickly revised that assessment.
By the end of it all, my body was tired. But what I find more difficult is managing to complete the task while caring for Michael. If my caregiver is here, then it's easy to not worry, but if Michael is in the house alone, I am constantly popping my head inside to make sure he is okay, napping or watching television.
I survived the snow, of course, and probably became stronger for it, but I looked at my sedentary husband again and again over the week and resolved to get him moving too. Over the past few months, his mobility has nearly ground to a complete halt. Recent swelling in his feet and ankles highlighted the potential danger of inactivity. We try to get out for a short walk a few times a week but if the timing is off a bit, then we often get no farther than halfway down the nicely cleared driveway. A few times I have been able to lure him onto my elliptical machine, set at the easiest level, but after two minutes he is huffing and puffing, then he quits. It's just not very much fun.
Last week I had a brainwave and set to work to find and order a small, inexpensive gizmo designed for disabled folks in wheelchairs. It is a pedal machine with a very simple knob to adjust the resistance. Michael can be parked in front of the television as always and pedal away from the comfort of the couch.
It arrived at our door last Thursday. I had it assembled in five minutes and he set to work immediately. I am a realist; I know Michael's interest will wane, but the first three days, he actually pulled the machine out himself and sat for thirty minutes each time pedalling steadily. The machine can even be used on top of a table to give the arms a workout but that is slightly less appealing to him than using his legs.
The past few days he has not touched it much but, with the glorious sunshine and warmth, I've been able to drag him outside for short walks with only a few falls each time. Perhaps the hint of spring in the air is motivating him and giving him strength.
The swelling in his feet has receded and there has been no further snow since last week. Revenue Canada and Revenue Quebec are not very seductively calling my name.
Tuesday, March 1, 2011
Journeys
This story was written in October 2010 near the first anniversary of the journey described below:
It was to be an epic journey; British Columbia had been beckoning to me from beyond the mountains for decades. I wanted to retrace the path that had ended there so many years before, forged by my family on our way to a new life.
My life began in the damp Midlands of England 54 years ago but my home was soon to become this vast empty country. My parents, fed up with the privations of post-war England, or perhaps merely possessed by a sense of adventure, sought the proverbial better life.
Our feet touched Canadian soil in Montreal, the week-long ocean voyage leaving my father weak from sea-sickness and jubilant or nervous imbibing. But my mother's face beams in the few photos from that journey, her first respite from domestic drudgery since their hasty marriage immediately after the war.
In Montreal my mother's tall willowy frame, in a printed frock, patiently stands with her brood, awaiting the train to carry us to our new home in an unknown land. My father's presence only felt as the eye behind the camera lens, observing his family.
Two long days on that train. How awed they must have felt at the vastness of the landscape, the barrenness, the emptiness after crowded England. Mom was well used to train travel after years of wartime commuting, often in black-out conditions, awaiting the whine of enemy planes over industrial Birmingham. She took up smoking for those journeys, and knitting, often blindly working on some project through the darkness. I can see the glow of the cigarette in her mouth and hear the click, click of her needles marking time with the train. Did she knit across Canada too or was she content to let the experience go by recorded only in her mind?
BC was still nine years away. We first arrived in Medicine Hat on our way to Etzikom to a principalship Dad would never have dreamed of acquiring in England. But he had a restless spirit and over those years we threaded our way through small towns in Alberta: Smith, Grassland, Cold Lake, all of them exposing us to new cultures - ranch life, farm life, a First Nations community, a military base.
And finally the three day trek to the coast. Mom, Dad and I drove, my older siblings now far away at university. Our Rambler station wagon was filled with necessities for six weeks until our furniture could find its way to Kemano, an isolated company town that finally promised the prosperity my parents had left England for. All three of us were crammed into the front seat of our aptly named vehicle. I remember my first sight of mountains, coming over the crest of the hill; ten years old and I was spell-bound by the majesty.
-------------
Years later I leave home tracing my way back to the East. Two days of travel out of mountain-bound Kemano for a new life at university in Kingston. What I didn't know was I would never really return to BC, a hurried visit here and there, but nothing sustained. I wish I had known that. I might have taken in my last sights of the places better, stored them away safely, but I was cavalier, youthful, unaware of the fragility of those memories over the years.
I settle in Ottawa with my husband, my last visit to BC in 1979, thirty long years ago. We have four children; we build a life together. We are happy and confident in ourselves and our longevity. We are strong and healthy.
Then in 1994 there is an unraveling. Michael is diagnosed with Parkinson's disease, early onset, only 46 years old, still fit, vigorous, otherwise healthy. We cry, but only briefly. Both of us have inherited our parents' stoicism, work ethic, their pioneering spirits, and without really discussing any plans, we resolve to raise our children, continue the tangled job of life. Our children grow and thrive.
Illness is expensive and busy, four children even more so, and in the intervening years I have developed a pathological fear of flying, all of these factors conspiring against any kind of travel let alone a long journey back to BC. We content ourselves with boisterous caravan-style camping trips over the years. My sister, the only sibling to stay in the West, makes annual treks to Ontario, my parents, in retirement, having abandoned the outback for the first time in their Canadian lives to join my brother and me in the Ottawa region.
This same sister fights her own battles with illness. She teases Death so many times over the years but when she can no longer make her annual visit, when illness finally starts to win the war, I begin to plan my way back to the West.
We hear news that her time is drawing to an end and that of her husband too, her life-partner, her patient caregiver over the years of unrelenting ill-health. I must go.
I still cannot imagine setting off in an airplane; the panic invades my sleep. Besides, my husband's condition is now bad enough that I do not feel I could adequately give care while succumbing to fear.
Then I remember how much I love the train and excitedly plan our journey across this land. I summon my parents' spirits and strength. We will board the train in Ottawa, hop off in Toronto onto the cross-Canada train late in the evening, snug in a small roomette. Three nights on the train, then debarkation in Jasper where I will drive us out of the Rockies to Quesnel, my sister's home.
I work out all the details. Michael seems keen to go but dementia has crept in over the past few years, a nasty feature of an already devastating disease, and I notice that he is getting worse in the weeks leading up to departure. I start to have serious doubts about the trip. But my sister, I have to see her for perhaps the last time.
The day before and I am now alarmed. My husband is fighting with invisible forces. I book an emergency appointment with the doctor vowing I will cancel everything if he thinks it unwise to go. The Demons are wily and hiding so the unsuspecting doctor is cheerful and confident, dismissing my fears. Of course the train will be safe. No, you were quite right not to book a flight - very risky - the train is so calming and peaceful.
I am only slightly reassured by the doctor. I have seen my poor husband succumb to those dark forces in the past while hospitalized for a heart attack. I know that any change can unleash delusional paranoia but I talk myself into believing that since he will be with me, his touchstone in adversity, all will be well. I pack my diversions for a long journey, six days there and back on the train: books, audiobooks and a new knitting project, homage to my mother.
We are nearly in Toronto, the first leg of the trip, when my cellphone rings. Our youngest, left in charge of the house, reports that he is suddenly very ill. I can hear how ill he is, even frightened, or maybe that's just my Mother's Panic clouding things. But what can I do? For now the draw of my sister is stronger and I have to obey.
Later that evening, on board in Toronto, I find our roomette impossibly small; with the beds down for the night there is barely room to turn around. I take the top bunk, leaving the bottom to my disabled husband. I plug myself into my ipod and look forward to being lulled to sleep by the train, imagining this same journey 52 years earlier.
Early in the night the Demons invade. Michael cannot grasp where we are and what all the noise is. Calming words from me have limited effect; he hallucinates wildly. He becomes paradoxically mobile, something I have now learned to expect when he is in adrenaline rush. He is now immersed in some elaborate, imagined conspiracy and starts to hunt for weapons to protect us. I tell him gently that I must have forgotten to pack them. We snatch only moments of sleep.
Morning dawns and I look forward to a breakfast that I have had no hand in preparing but all my attention is on my husband. He seems normal but I know his roving eye is following unseen companions. His halting, mumbling Parkinson's speech confuses our table companions. They look away uncomfortably. Conversation is stilted.
Our first full day is spent mostly in our room. Michael is ambulatory only a few hours a day with medication so I carefully tailor his drug regimen for optimum mobility at mealtime. The Panorama car with a full vista of the passing landscape is too far away for him to negotiate the narrow hallways so I content myself with watching the scenery from our own window. We are in northern Ontario, an endless parade of spindly conifers, rocks and small frigid lakes. We doze together on the bottom bunk, catching up on lost sleep. I knit a few rows of my intricate, delicate, cable-patterned shawl. The Demons are resting.
Nightfall. I slip away for a hasty shower, nervous about leaving Michael alone for even a few minutes. I summon the porter who promises to watch for me. All is well and later I settle happily into my bunk, anticipating a calmer night. Surely exhaustion will prevail tonight.
But this time the Demons are impatient and storm in as soon as the lights are dimmed. Michael tries to flee what has become his prison cell. I fear he will hurl himself off the train so I lock and barricade our door with a suitcase. Mercifully his mechanical prowess has disappeared over the years of this ravaging disease and he cannot fathom the simple lock. Together we wage war through the night as quietly as possible.
A second dawn approaches and I weigh my options. We have one more night on the train before our arrival in Jasper. My husband's eyes are ringed with fatigue and mental illness. Probably mine are too but I refuse eye contact with myself in all mirrors. I must make a decision now as we approach Winnipeg. With still a long journey ahead and then five days in the company of two very ill people, I realize we must disembark in Winnipeg and get home somehow. I consider renting a car to drive the long way back but the thought of being trapped alone with Michael's unpredictable behaviour is unbearable. I know we must fly. The thought of death in a fiery plane crash is oddly less worrying than continuing this hellish journey.
We are ready to depart our prison as soon as the doors open at 8 am. The porter is immensely helpful for I am left to struggle with the wheelchair and luggage, but my husband is mercifully and suddenly calm now that he knows he is free and going home. We make our way to the ticket counter in the Winnipeg train station to negotiate a refund. I am prepared to forfeit it all, I am so desperate to go home, but I am touched and surprised that the compassionate clerk, on hearing my tale, refunds all but the portion we have already used. I am, I think, calm and coherent, knowing that any panic I might exhibit will only set Michael off again. He needs me to be serene at all times.
With money refunded we grab a cab and make our way to the airport through the wide empty streets of this prairie city. Our driver and I try hard to be cheerful despite the obvious madness that has invaded his car.
At the airport our only option appears to be to fly immediately to Montreal and make our way home from there, having missed the only two early Saturday flights to Ottawa. A computer glitch forces an inordinate wait time for the hasty tickets we require. I offer full disclosure about our volatile predicament but suddenly am gripped with fear that they could refuse us passage. Michael is currently calm and lucid but feels a duty to inform approaching strangers of imminent danger at the hands of some terrible terrorist conspiracy. The flash of near panic across one face prompts me to grab his arm and admonish him to stop talking to people. He obeys.
We are offered a quiet resting place in the airline staffroom as we wait for the computer to be convinced to process our tickets. With only fifteen minutes to spare, a cheerful young attendant rushes with us to the security gate, then to the door of the aircraft, where all have been apprised of our predicament.
I settle Michael into the window seat and myself in the aisle; I refuse to look outside. Michael is now as happy as a small boy on a new adventure. He has always loved flying, having travelled the world for his work as an engineer with the federal government before this disease robbed him of nearly everything. I brace myself for my first flight in thirty years, prepared for complete panic. Save a few long moments on takeoff and a few longer ones on landing, I am prayerful but calm. It helps that Michael is positively beaming with joy.
The rest of the journey home is anticlimactic and uneventful. We arrive on time in Montreal, hop on the shuttle bus two hours later, arriving at the Ottawa bus station, then home-sweet-home, by late afternoon. The only Demons who reappear sneak onto the bus in Montreal but I have been wise to invite them to join us in the front seats, everyone else on board near the back. The final stretch of the journey, the car ride home, Michael is anxiously hiding in the backseat, certain we are under attack. My ailing son and I chat amiably in the front seat, careful not to acknowledge Michael's fear, and intent on getting this poor sick man home.
---------------
That journey was over but not the bigger one that continues to move us in unknown directions. Michael's health declines ever so rapidly now; this disease seems to be taking its final hold on his body and mind. My sister miraculously still lives but her husband ended his journey with life Christmas day last year, exhausted from his disease and his onerous duties.
The return to the West was not to be, not yet, and my tangled knitting project has been all but abandoned for now. I pick it up occasionally but cannot complete it.
Wednesday, February 16, 2011
Silence
It's late. Boredom exhausts but sleep eludes.
A day without respite. A usual Wednesday with the day's only plan to get in a workout and get through the day. Success at least on that front.
Television tyrannized my attention. Three meals created welcome structure to the day. Michael loves to eat and only left his couch-bed to do so and heed the call of nature. All my senses acute; couldn't bear to hear him chew. Focused all my attention on the paper's daily puzzles. I knitted a few desultory rows but the television aggravated my mood. Edgy. Hustled him off to bed promptly at ten to escape to my room. Felt like confessing that I've had enough but knew my words would wound even if only for a moment and then be forgotten. The response is always silence when I unload my heart. I pray for conversation but there is no point in wasting words; I don't anymore. Instead loud wailing to God, the silence, the darkness but no response either.
Yet writing these words, seeing them form, brings lightness. Imagining a world beyond the screen. Yawning, I think I can sleep. Tomorrow will be better.
A day without respite. A usual Wednesday with the day's only plan to get in a workout and get through the day. Success at least on that front.
Television tyrannized my attention. Three meals created welcome structure to the day. Michael loves to eat and only left his couch-bed to do so and heed the call of nature. All my senses acute; couldn't bear to hear him chew. Focused all my attention on the paper's daily puzzles. I knitted a few desultory rows but the television aggravated my mood. Edgy. Hustled him off to bed promptly at ten to escape to my room. Felt like confessing that I've had enough but knew my words would wound even if only for a moment and then be forgotten. The response is always silence when I unload my heart. I pray for conversation but there is no point in wasting words; I don't anymore. Instead loud wailing to God, the silence, the darkness but no response either.
Yet writing these words, seeing them form, brings lightness. Imagining a world beyond the screen. Yawning, I think I can sleep. Tomorrow will be better.
Sunday, February 13, 2011
Playing with Fire
I conducted an experiment this week and it failed. At least I think it did. Not spectacularly or catastrophically, just quiet failure, but it was worth the try. I had been giving this decision much thought and felt we had nothing to lose.
Some time ago I wrote about the newest drug in Michael's arsenal, Clozaril. It is a powerful neuroleptic drug used to treat stubborn cases of schizophrenia and patients with Parkinson's Disease where dementia progresses to the point of deep psychosis. It is a dangerous drug and only used in difficult cases because of the many serious and not-so-rare side effects, but it is indicated for Parkinson's patients because, unlike many of the other drugs in this family, this one is less likely to cause tremors or exacerbate existing ones.
Michael has tolerated the drug very well, passing his weekly blood tests that monitor his white blood cell count, a test ordered by the drug company in case of the fatal occurrence of agranulocytosis, which, very simplistically, is the destruction of those important infection-killing cells leaving the patient very vulnerable. And he has experienced very few of the other nasty side effects. On the whole the drug has been successful and Michael has been very well the past few months.
But, since the fifty percent increase in this drug last August when he lost the connection with his world during a hospital stay, he has been more lethargic than ever. He rarely moves off the couch these days, not because he cannot but more because he simply lacks the will. He sleeps a lot and is more withdrawn than ever except for occasional moments when friends visit. For those moments he seems able to rally all his resources, physical and mental, surprising his guests who expect to see him in the near-zombie state I often see. (Could thirty-plus years of marriage be the real culprit?)
I am not complaining about the new calm that has settled over our lives, but, as the caregiver and always trying to figure out ways to improve his life, I have become worried about this immobility and the implications for other aspects of his health, such as his cardiovascular system that has already shown itelf to be compromised, and his musculature which is rapidly atrophying.
On thinking this through I jotted down these observations: Michael's psychosis is triggered by internal or external changes in his condition - constipation, urinary tract infection, a planned trip anywhere - and Michael's plunge into psychosis does not seem to be prevented by this drug when he does experience these changes. Ergo, perhaps the drug is not necessary, and the anxiety that bubbles up as a precursor to full-blown psychosis could be controlled by the other anti-anxiety medications I have at hand.
I had been thinking about this for weeks, probably because I miss my husband whose chattiness and sense of humour were always such good company. I haven't seen much of this man for a long time, I admit, well before the introduction of this drug, but he has gone even further away the past few months. So I decided, without consultation I confess, to pare back to the pre-August dosage which meant keeping the full 25 mg pill at night but not the more recently introduced half pill in the morning. My logic was that he might have more energy and less lethargy during the day but still have that nice hit at bedtime to see him peacefully through the night.
Wednesday was the morning for the first missed dose. Coincidentally it was also the morning for another task I'd been avoiding for weeks. Though I am conscientious about my own health, popping various immune-boosting remedies when the first sign of a cold strikes or just maintaining good nutrition and exercise so that I almost never get sick, I had to admit there was no home remedy for deteriorating eyesight and no substitute for the occasional visit to the dentist. So Wednesday was the day to book all those long-neglected appointments for myself and while I was at it, I thought I might as well book a dental appointment for Michael whose rapidly deteriorating teeth have been neglected since his care needs escalated back in November 2009.
There is a reason for my reluctance to visit his dentist. Five years ago, Michael underwent a routine root canal and at the time seemed to tolerate the procedure well. That evening he suddenly fell into a delirium we'd never seen the likes of before but with which we have since become all too familiar. He had his dinner, then started picking up invisible objects from the floor and pointing to and communicating with an invisible crowd in the living room. Not much later he fell into a frighteningly heavy sleep. I had no idea what to do so did nothing but wait it out, which, knowing what I now know about this disturbing condition and how it responds to hospitalization, was the best thing I could have done.
Since life has been so stable lately, I thought it was time to address the dental problems. As it happened, his own dentist could see him that afternoon. It was a free day (it almost always is) so I agreed to the visit which was just to be a cleaning and a check-up. I did have a moment of doubt that perhaps I should wait a day or two to see how Michael fared with the new drug schedule but then quickly discounted that and threw caution to the wind.
Anxiety almost immediately kicked in on learning of the appointment but did ebb away as the morning progressed. I assured him nothing much would happen that day. Even so, the visit was a bit challenging as he choked a lot through the cleaning process, but the hygienist was very patient and propped him up every few minutes to clear his throat. The only visible sign of anxiety I could see were his clenched fists but he declared he was fine whenever I asked.
The dentist decreed that one badly decayed tooth that had recently lost its capping would have to be extracted and two others filled. The extraction might be lengthy if the tooth broke in the process so it could mean up to an hour in the chair. I decided not to book the appointment immediately but wait a week to see if there was any fallout from this simple stage of the process.
I anxiously monitored his behaviour throughout the evening but there was no recurrence of the post-procedure delirium of five years ago, just a bit of agitation, nothing that couldn't be handled with a mild dose of anti-anxiety medication.
All was well the next morning, day two of the reduction campaign. Michael was noticeably more alert, more mobile, more communicative. Things were looking good; my experiment might be a success. But later in the day, some old symptoms reappeared. The nagging ache in his upper right abdomen returned which might be explained by the slowing down of his digestive system again over the past few weeks (the flax continues to work but less well than at first, forcing me to reintroduce small doses of the drugs) but I think it was a symptom of anxiety. More medication.
On Friday, day three, he was even more alert, That afternoon dear old friends dropped by for a most welcome visit and Michael was better than ever, partly because of the reduced drugs but mostly, I think, because of the happy visit. He joked coherently, making us all laugh. I was feeling happy and confident that my decision was right.
But Friday evening things began to change. The haunted, hooded look that crosses his face as the pre-cursor to psychosis had appeared. I asked him how he was feeling and for once he was able to give me a fairly detailed response. He said he felt so much more alert and clear-headed and enjoyed being back in the world but he recognized that the Darkness was approaching. An odd phenomenon I have noticed is that extreme delirium is always accompanied by increased mobility and intellectual activity. That's what I was seeing on Friday night. I asked him if he wanted to continue the experiment with the reduced medication and I could see he was torn, enjoying the renewed lucidity but afraid of going down that dark alley again. I realized I was too and I lost my nerve to continue. There is always the fear he may not find his way back the next time.
So today, day four, I resumed the full dosage of his Clozaril and he sank back into lethargy and calm. I also cancelled the appointment for the tooth extraction because he had become quite fixated on that. It can wait. It is difficult to say whether the increased anxiety was a result of the drug reduction or just the anticipation of the dental procedure. It is unfortunate that I allowed both to occur simultaneously because I will never be sure what was happening, but I am certain that with the significant increase in the anxiety and the wild look returning, it was too risky to continue. Obviously I cannot have both a lucid and calm husband. We are opting for calm.
Some time ago I wrote about the newest drug in Michael's arsenal, Clozaril. It is a powerful neuroleptic drug used to treat stubborn cases of schizophrenia and patients with Parkinson's Disease where dementia progresses to the point of deep psychosis. It is a dangerous drug and only used in difficult cases because of the many serious and not-so-rare side effects, but it is indicated for Parkinson's patients because, unlike many of the other drugs in this family, this one is less likely to cause tremors or exacerbate existing ones.
Michael has tolerated the drug very well, passing his weekly blood tests that monitor his white blood cell count, a test ordered by the drug company in case of the fatal occurrence of agranulocytosis, which, very simplistically, is the destruction of those important infection-killing cells leaving the patient very vulnerable. And he has experienced very few of the other nasty side effects. On the whole the drug has been successful and Michael has been very well the past few months.
But, since the fifty percent increase in this drug last August when he lost the connection with his world during a hospital stay, he has been more lethargic than ever. He rarely moves off the couch these days, not because he cannot but more because he simply lacks the will. He sleeps a lot and is more withdrawn than ever except for occasional moments when friends visit. For those moments he seems able to rally all his resources, physical and mental, surprising his guests who expect to see him in the near-zombie state I often see. (Could thirty-plus years of marriage be the real culprit?)
I am not complaining about the new calm that has settled over our lives, but, as the caregiver and always trying to figure out ways to improve his life, I have become worried about this immobility and the implications for other aspects of his health, such as his cardiovascular system that has already shown itelf to be compromised, and his musculature which is rapidly atrophying.
On thinking this through I jotted down these observations: Michael's psychosis is triggered by internal or external changes in his condition - constipation, urinary tract infection, a planned trip anywhere - and Michael's plunge into psychosis does not seem to be prevented by this drug when he does experience these changes. Ergo, perhaps the drug is not necessary, and the anxiety that bubbles up as a precursor to full-blown psychosis could be controlled by the other anti-anxiety medications I have at hand.
I had been thinking about this for weeks, probably because I miss my husband whose chattiness and sense of humour were always such good company. I haven't seen much of this man for a long time, I admit, well before the introduction of this drug, but he has gone even further away the past few months. So I decided, without consultation I confess, to pare back to the pre-August dosage which meant keeping the full 25 mg pill at night but not the more recently introduced half pill in the morning. My logic was that he might have more energy and less lethargy during the day but still have that nice hit at bedtime to see him peacefully through the night.
Wednesday was the morning for the first missed dose. Coincidentally it was also the morning for another task I'd been avoiding for weeks. Though I am conscientious about my own health, popping various immune-boosting remedies when the first sign of a cold strikes or just maintaining good nutrition and exercise so that I almost never get sick, I had to admit there was no home remedy for deteriorating eyesight and no substitute for the occasional visit to the dentist. So Wednesday was the day to book all those long-neglected appointments for myself and while I was at it, I thought I might as well book a dental appointment for Michael whose rapidly deteriorating teeth have been neglected since his care needs escalated back in November 2009.
There is a reason for my reluctance to visit his dentist. Five years ago, Michael underwent a routine root canal and at the time seemed to tolerate the procedure well. That evening he suddenly fell into a delirium we'd never seen the likes of before but with which we have since become all too familiar. He had his dinner, then started picking up invisible objects from the floor and pointing to and communicating with an invisible crowd in the living room. Not much later he fell into a frighteningly heavy sleep. I had no idea what to do so did nothing but wait it out, which, knowing what I now know about this disturbing condition and how it responds to hospitalization, was the best thing I could have done.
Since life has been so stable lately, I thought it was time to address the dental problems. As it happened, his own dentist could see him that afternoon. It was a free day (it almost always is) so I agreed to the visit which was just to be a cleaning and a check-up. I did have a moment of doubt that perhaps I should wait a day or two to see how Michael fared with the new drug schedule but then quickly discounted that and threw caution to the wind.
Anxiety almost immediately kicked in on learning of the appointment but did ebb away as the morning progressed. I assured him nothing much would happen that day. Even so, the visit was a bit challenging as he choked a lot through the cleaning process, but the hygienist was very patient and propped him up every few minutes to clear his throat. The only visible sign of anxiety I could see were his clenched fists but he declared he was fine whenever I asked.
The dentist decreed that one badly decayed tooth that had recently lost its capping would have to be extracted and two others filled. The extraction might be lengthy if the tooth broke in the process so it could mean up to an hour in the chair. I decided not to book the appointment immediately but wait a week to see if there was any fallout from this simple stage of the process.
I anxiously monitored his behaviour throughout the evening but there was no recurrence of the post-procedure delirium of five years ago, just a bit of agitation, nothing that couldn't be handled with a mild dose of anti-anxiety medication.
All was well the next morning, day two of the reduction campaign. Michael was noticeably more alert, more mobile, more communicative. Things were looking good; my experiment might be a success. But later in the day, some old symptoms reappeared. The nagging ache in his upper right abdomen returned which might be explained by the slowing down of his digestive system again over the past few weeks (the flax continues to work but less well than at first, forcing me to reintroduce small doses of the drugs) but I think it was a symptom of anxiety. More medication.
On Friday, day three, he was even more alert, That afternoon dear old friends dropped by for a most welcome visit and Michael was better than ever, partly because of the reduced drugs but mostly, I think, because of the happy visit. He joked coherently, making us all laugh. I was feeling happy and confident that my decision was right.
But Friday evening things began to change. The haunted, hooded look that crosses his face as the pre-cursor to psychosis had appeared. I asked him how he was feeling and for once he was able to give me a fairly detailed response. He said he felt so much more alert and clear-headed and enjoyed being back in the world but he recognized that the Darkness was approaching. An odd phenomenon I have noticed is that extreme delirium is always accompanied by increased mobility and intellectual activity. That's what I was seeing on Friday night. I asked him if he wanted to continue the experiment with the reduced medication and I could see he was torn, enjoying the renewed lucidity but afraid of going down that dark alley again. I realized I was too and I lost my nerve to continue. There is always the fear he may not find his way back the next time.
So today, day four, I resumed the full dosage of his Clozaril and he sank back into lethargy and calm. I also cancelled the appointment for the tooth extraction because he had become quite fixated on that. It can wait. It is difficult to say whether the increased anxiety was a result of the drug reduction or just the anticipation of the dental procedure. It is unfortunate that I allowed both to occur simultaneously because I will never be sure what was happening, but I am certain that with the significant increase in the anxiety and the wild look returning, it was too risky to continue. Obviously I cannot have both a lucid and calm husband. We are opting for calm.
Sunday, February 6, 2011
"Perfectly balanced variation within sameness"* OR How to Survive the February Blues
It's February and it's a Saturday morning. On the one hand I want nothing more than to curl up, read a book or lose myself in a long movie or two, my lethargy is so huge. On the other, it's a sunny, sparkly Saturday and, with the fat weekend paper spread out before me and my cup of tea, there seem to be endless possibilities to the day, if only I had the energy and a different job. Restless, yet enervated. Bad combination.
This is not a new state of being for me. For years I have battled mildly low spirits at this time of year. Who doesn't? The darkness is long even with the slight increases in daylight every day. The days are cold, triggering that hibernation instinct that most of us experience, save those who embrace winter sports. I do not anymore; I cannot with the restrictions Michael's care imposes.
But there are strategies I have found that work. These I have employed since the kids were little and often sick through the winter months, and then again through the long years we homeschooled, though then we were always very busy and active with little time for low spirits.
Routine is critical for me, but at the same time that unwavering routine that is so imperative for Michael's health can be oppressive. Every day his medications, dispensed five times a day, are administered with clockwork precision. The eighteen pills a day are essential if Michael is to have any hope of mobility or lucidity, but at least he takes fewer now than the thirty-plus a day of recent history.
Michael's routine rarely varies, especially during this current period of calm and relative well-being. Nearly an hour after his first dose of medication at eight in the morning, which is how long it takes his body to loosen up from the near-paralysis of the night, I lift him up in bed, clean and dress him, none of which he can do on his own anymore. I throw in the load of laundry generated through the night then serve him breakfast. He slowly eats and reads the paper, nodding off here and there. When it is apparent that he has fixated on the same word for more than about five minutes, I wheel him over to the couch where I prop him up with pillows, cover him with a blanket and turn on the television to a sports news channel; Michael snoozes peacefully most of the morning.
Afternoons are usually not much different. He doesn't really gain any significant wakefulness until about one or two in the afternoon, at which time he eats. Then I encourage him to move around the house a bit to get the legs moving while he can. Or, if he is really well, we try to walk around outside or hop in the car for a change of scenery. By three o'clock, he is running out of steam and is back in front of the television, if he ever left, nodding off again. Supper at six, more television in the evening, bedtime at ten when the morning's process is reversed, prayers, sleep.
Michael's routine rarely varies, especially during this current period of calm and relative well-being. Nearly an hour after his first dose of medication at eight in the morning, which is how long it takes his body to loosen up from the near-paralysis of the night, I lift him up in bed, clean and dress him, none of which he can do on his own anymore. I throw in the load of laundry generated through the night then serve him breakfast. He slowly eats and reads the paper, nodding off here and there. When it is apparent that he has fixated on the same word for more than about five minutes, I wheel him over to the couch where I prop him up with pillows, cover him with a blanket and turn on the television to a sports news channel; Michael snoozes peacefully most of the morning.
Afternoons are usually not much different. He doesn't really gain any significant wakefulness until about one or two in the afternoon, at which time he eats. Then I encourage him to move around the house a bit to get the legs moving while he can. Or, if he is really well, we try to walk around outside or hop in the car for a change of scenery. By three o'clock, he is running out of steam and is back in front of the television, if he ever left, nodding off again. Supper at six, more television in the evening, bedtime at ten when the morning's process is reversed, prayers, sleep.
These routines, in the comfort of his home, keep Michael on an even keel mentally. Any change can spell catastrophe without extreme vigilance on my part. Sometimes I don't know what the change might be because it is something silently and mysteriously lurking within his own body, my only clues being his mental state and the state of his bowels, accompanied by much guess work on my part.
So I have had to develop my own strategies for remaining sane in the midst of these rigid routines. I embrace whatever time I have to myself in the house which is only early in the morning and late at night when he is safely in his bed. At these times, though I am plugged into the monitor that allows me to be elsewhere in the house, I quietly enjoy my early cups of tea or, if it's late at night, I immerse myself in our luxurious claw-footed tub with a good book for companionship. Reading is otherwise difficult during the day with the constant drone of the television.
Every day I try to have a plan of action that I review in my head each morning. If it is one of the four three-hour shifts that our caregiver comes, I have plans to go out, even if it's just to walk the dogs and shop for groceries at the nearby store. Monday morning I always meet a good friend for a walk and breakfast when we rehash the week's events in our respective families. Tuesdays I work across the street at my favourite place with my favourite people on a volunteer project we've all been committed to for years: the Nearly New Shop processes and resells gently used clothing, the significant proceeds from which go to support various worthwhile community, national and international charitable projects. I love the work; I love the people. They feed my soul. Other days I may simply have a plan to do housework or a workout in our basement while Michael sleeps.
As long as I have one thing planned I am content. I don't even have to be rigidly fixated on completing it; I could be easily derailed by something else that comes along, like a wonderfully long and unexpected phone call from any or all of my children. But I must have something to anticipate every morning to give the day some shape. The rest of the day I can fill in with small projects like knitting and writing and the endless tasks of caregiving. Variety of activities throughout the day is essential.
I have also learned that I need order and cleanliness in my environment so I take a great deal of the time available to me to ensure that chaos is controlled. It is a small thing but I do believe that order of the mind is maintained by order in my environment, inside and out. I take immense pleasure in keeping house, something I am nearly shy to admit. I plug myself into my ipod with loud, usually testosterone-driven music blaring, while happily vacuuming, singing, dusting and dancing with my partner the mop. Fortunately Michael is extremely good at sleeping through very loud noises and has even slept through shoving his couch around to clean underneath. I knew those weight lifting exercises would come in handy for something.
Internet provides a link that allows me to keep in touch with the world at large without having to engage in long conversations with folks over the phone if I lack the energy for such things. Facebook, msn and email keep me connected and anchored to the world, assuaging that feeling of isolation, adrift at sea, that can overcome caregivers in the winter. And a laptop with WiFi is critical for flexibility of movement.
I cannot say enough about friends, family and neighbours who, though this has been and will continue to be a marathon event, keep in touch and help out when I need them or simply are a friendly, smiling hello in the street. I am far better at asking for help than I ever used to be, but I am also aware that this is a very long- term commitment and I must not wear out any one person's goodwill. Fortunately there are many to dilute the requests.
I am also blessed with a cheerful and competent caregiver with whom Michael is very comfortable, as comfortable as he is in my company. A telling sign of his ease with her is how readily he will fall asleep in her company. With visitors he sees less often, he will force himself to stay awake and strive so hard to be engaged in conversation, a very, very difficult task for him. Afterwards he collapses with fatigue, but I believe the effort he must make is good stimulation and it is usually rare enough that he has plenty of recovery time in between.
I have to protect my own health in this endeavour because I have learned that if I get sick or injured this ship is at serious risk of sinking. To that end I have found that regular meals and healthy eating are critical for both of us. When our family of four children was growing up, it was a wonderful time of laughter and sharing even if loud, raucous and sometimes argumentative. I have mostly enjoyed the meal planning and cooking experience though there are times when I could hurl the pots out the window. Our meals, with just the two of us, after all those years with loud, riotous children, are usually spent in monkish silence, but I believe there is still much value to breaking bread together. It provides a semblance of the normalcy of family life, at least, and I believe that contributes to Michael's continued connection to his environment.
Sleep, of course, is essential to good health and good spirits. These days I am getting plenty, but I am always aware that could change in a heartbeat. With recent adjustments in medications, Michael now sleeps very well with only the occasional restless night which I can usually predict from the day's activities and emotions. If anyone is going to wake me in the night, it is more likely to be one of our aging dogs with their weakening bladders. I am a huge fan of afternoon naps, and Michael's usual sleepy demeanour allows lots of opportunity for a snooze together. It is a warm, intimate time, the two of us spread L-shaped on our couch for about an hour most afternoons.
After painfully putting out my back four years ago and eschewing all but the most minor of pain relievers, I went on a campaign to eliminate the recurrence of the problem by embarking on a regular exercise programme. Last Mothers' Day, to augment my routine, I bought myself a third-hand elliptical machine that creaks and groans more loudly than my own body but it does the job. Combining that with strengthening exercises, I have managed to lower my risk of back injury significantly and have flattened the old abdomen as a bonus, for what it's worth. While Michael naps I slip down into the basement and, once again, out comes the testosterone-fueled music which motivates me and allows a lapse into fantasy; Annie Lennox's raunchy "I Need a Man" fits the bill too, even if her "Sisters are Doing if for Themselves" more aptly describes that aspect of my life. Did I say monkish?
I have two regular days a week that I am without respite so I make the workout the plan for those days. But at least four days a week I can get out for brisk walks with the dogs, an activity I prefer to the workout, but the effects of the two are quite different: Peaceful, meditative walks alone in the fresh air and nearby forest feed my spirit, whereas the exercise programme is purely for strengthening the body.
This morning, for once, I had no real plan beyond the usual routine, so a rare but brief sense of despair and lethargy had time to morph into a restive streak. Sometimes on a weekend, volunteers step forward for an hour allowing me time for a walk, but today nobody came. My restlessness mounted throughout the morning, the sunshine beckoned. In frustration, I declared to Michael that we would go for a walk or a drive in the afternoon, and before that, while he slept, though I hadn't planned to, I threw myself into some housework that didn't really need to be done. In the end, the housework got done around surprise phone calls from my girls, and we only got out for a short walk. Michael's meds ran out and I had to run to get the car, putting a quick end to our stroll, but I think we both felt better for the five minutes in the sun.
So, it turned out to be a good day after all, a full day when I was afraid it would drag. No plans, but my family and the physical activity of creating order in my home came to the rescue. That and the music of a few rock stars.
* from Lionel Shriver's "The Post-birthday World"
So I have had to develop my own strategies for remaining sane in the midst of these rigid routines. I embrace whatever time I have to myself in the house which is only early in the morning and late at night when he is safely in his bed. At these times, though I am plugged into the monitor that allows me to be elsewhere in the house, I quietly enjoy my early cups of tea or, if it's late at night, I immerse myself in our luxurious claw-footed tub with a good book for companionship. Reading is otherwise difficult during the day with the constant drone of the television.
Every day I try to have a plan of action that I review in my head each morning. If it is one of the four three-hour shifts that our caregiver comes, I have plans to go out, even if it's just to walk the dogs and shop for groceries at the nearby store. Monday morning I always meet a good friend for a walk and breakfast when we rehash the week's events in our respective families. Tuesdays I work across the street at my favourite place with my favourite people on a volunteer project we've all been committed to for years: the Nearly New Shop processes and resells gently used clothing, the significant proceeds from which go to support various worthwhile community, national and international charitable projects. I love the work; I love the people. They feed my soul. Other days I may simply have a plan to do housework or a workout in our basement while Michael sleeps.
As long as I have one thing planned I am content. I don't even have to be rigidly fixated on completing it; I could be easily derailed by something else that comes along, like a wonderfully long and unexpected phone call from any or all of my children. But I must have something to anticipate every morning to give the day some shape. The rest of the day I can fill in with small projects like knitting and writing and the endless tasks of caregiving. Variety of activities throughout the day is essential.
I have also learned that I need order and cleanliness in my environment so I take a great deal of the time available to me to ensure that chaos is controlled. It is a small thing but I do believe that order of the mind is maintained by order in my environment, inside and out. I take immense pleasure in keeping house, something I am nearly shy to admit. I plug myself into my ipod with loud, usually testosterone-driven music blaring, while happily vacuuming, singing, dusting and dancing with my partner the mop. Fortunately Michael is extremely good at sleeping through very loud noises and has even slept through shoving his couch around to clean underneath. I knew those weight lifting exercises would come in handy for something.
Internet provides a link that allows me to keep in touch with the world at large without having to engage in long conversations with folks over the phone if I lack the energy for such things. Facebook, msn and email keep me connected and anchored to the world, assuaging that feeling of isolation, adrift at sea, that can overcome caregivers in the winter. And a laptop with WiFi is critical for flexibility of movement.
I cannot say enough about friends, family and neighbours who, though this has been and will continue to be a marathon event, keep in touch and help out when I need them or simply are a friendly, smiling hello in the street. I am far better at asking for help than I ever used to be, but I am also aware that this is a very long- term commitment and I must not wear out any one person's goodwill. Fortunately there are many to dilute the requests.
I am also blessed with a cheerful and competent caregiver with whom Michael is very comfortable, as comfortable as he is in my company. A telling sign of his ease with her is how readily he will fall asleep in her company. With visitors he sees less often, he will force himself to stay awake and strive so hard to be engaged in conversation, a very, very difficult task for him. Afterwards he collapses with fatigue, but I believe the effort he must make is good stimulation and it is usually rare enough that he has plenty of recovery time in between.
I have to protect my own health in this endeavour because I have learned that if I get sick or injured this ship is at serious risk of sinking. To that end I have found that regular meals and healthy eating are critical for both of us. When our family of four children was growing up, it was a wonderful time of laughter and sharing even if loud, raucous and sometimes argumentative. I have mostly enjoyed the meal planning and cooking experience though there are times when I could hurl the pots out the window. Our meals, with just the two of us, after all those years with loud, riotous children, are usually spent in monkish silence, but I believe there is still much value to breaking bread together. It provides a semblance of the normalcy of family life, at least, and I believe that contributes to Michael's continued connection to his environment.
Sleep, of course, is essential to good health and good spirits. These days I am getting plenty, but I am always aware that could change in a heartbeat. With recent adjustments in medications, Michael now sleeps very well with only the occasional restless night which I can usually predict from the day's activities and emotions. If anyone is going to wake me in the night, it is more likely to be one of our aging dogs with their weakening bladders. I am a huge fan of afternoon naps, and Michael's usual sleepy demeanour allows lots of opportunity for a snooze together. It is a warm, intimate time, the two of us spread L-shaped on our couch for about an hour most afternoons.
After painfully putting out my back four years ago and eschewing all but the most minor of pain relievers, I went on a campaign to eliminate the recurrence of the problem by embarking on a regular exercise programme. Last Mothers' Day, to augment my routine, I bought myself a third-hand elliptical machine that creaks and groans more loudly than my own body but it does the job. Combining that with strengthening exercises, I have managed to lower my risk of back injury significantly and have flattened the old abdomen as a bonus, for what it's worth. While Michael naps I slip down into the basement and, once again, out comes the testosterone-fueled music which motivates me and allows a lapse into fantasy; Annie Lennox's raunchy "I Need a Man" fits the bill too, even if her "Sisters are Doing if for Themselves" more aptly describes that aspect of my life. Did I say monkish?
I have two regular days a week that I am without respite so I make the workout the plan for those days. But at least four days a week I can get out for brisk walks with the dogs, an activity I prefer to the workout, but the effects of the two are quite different: Peaceful, meditative walks alone in the fresh air and nearby forest feed my spirit, whereas the exercise programme is purely for strengthening the body.
This morning, for once, I had no real plan beyond the usual routine, so a rare but brief sense of despair and lethargy had time to morph into a restive streak. Sometimes on a weekend, volunteers step forward for an hour allowing me time for a walk, but today nobody came. My restlessness mounted throughout the morning, the sunshine beckoned. In frustration, I declared to Michael that we would go for a walk or a drive in the afternoon, and before that, while he slept, though I hadn't planned to, I threw myself into some housework that didn't really need to be done. In the end, the housework got done around surprise phone calls from my girls, and we only got out for a short walk. Michael's meds ran out and I had to run to get the car, putting a quick end to our stroll, but I think we both felt better for the five minutes in the sun.
So, it turned out to be a good day after all, a full day when I was afraid it would drag. No plans, but my family and the physical activity of creating order in my home came to the rescue. That and the music of a few rock stars.
* from Lionel Shriver's "The Post-birthday World"
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