One of the biggest challenges of this job of full time caregiving is staying balanced and content. The constant repetitions of each day, the isolation, the stress of being on high alert at all times take their toll. On the whole, I manage the balance fairly well and can actually report that most days I am content, even happy.
But there are days when life overwhelms, not often but occasionally. The meltdowns are usually short-lived for me, thank goodness, and cathartic, allowing me to press my reset button and face the monotony again. Or a simple call from a friend or family member is enough to jolt me out of my morass for a few more days.
Recently, though, a connection of another sort occurred that has gotten under my skin and is chafing. Long lost unrequited relationships sometimes surface that trigger memories and longings that I have mostly been successful in suppressing. But this one has uncovered feelings and yearnings I have kept well hidden over the past few years of intensive caregiving.
I have always described myself as a person without definite passions. I've often thought that perhaps I suffer from anhedonia . But that is defined as a mental disorder, one where the sufferer no longer finds pleasure in previously enjoyed activities, not what I am. No, I take simple pleasure from simple things: a prayerful walk in the forest alone save the company of my dogs; watching my garden spring forth every year; my children; my friends; my volunteer work. I have, of course, loved my husband, sometimes very passionately, and still do, though the passion is sadly long gone. Something must die when a spouse must cross that line from lover to nurse (despite male fantasies to the contrary), and, with a chronic, severe degenerative disease like PD/dementia, there is no turning back, at least, not for me. Sometimes I think I am better suited than most for this job because I do lack passion for many of those external things like hobbies and causes. I don't feel I am missing much and on the whole I am a contented homebody.
I am not ready to give up my job as caregiver, as onerous as it is, but I am realizing that a life without passion is a sad one. I wish I could abandon myself in a hobby that might fulfill me if I only had the freedom for such things. But there is still this chafing yearning that will not go away, a reminder that I am, after all, human with all my physical needs calling out to be met. A cruel joke that is keeping me awake at night. A spiritual life is helpful but only an occasional panacea.
My solution is to engage in time travel and fantasy. In the case of time travel, I am able to lose myself in memories of my husband in better times, when he was well, fit and amorous. It is a useful strategy and gets me through lonely times just imagining his comforting, protective arm around me in the night. But I am now the Protector so the illusion quickly vanishes, leaving only the yearning. It is merely a ghost of the past.
Fantasy, on the other hand, offers the promise of future, though a rather hollow promise at that. It works for a while but, again, is only an illusion that vanishes perhaps even more quickly than the other because there is no past memory to fuel it. It is a chimera. It is less satisfying, perhaps even destructive, because it does leave the longing with nothing tangible in its wake. The time travel indulgence at least still has all the fine material products of that relationship before me as a reminder that it was real.
Blog Farm
Tuesday, May 10, 2011
Thursday, April 21, 2011
Ann
"She's gone" were the words transmitted to my cell phone at 10:14 pm, April 19, what would have been my mother's 91st birthday. Appropriate day for my sister to leave us and head home to Mom and Dad and her husband, who had paved the way a mere sixteen months ago. It was the twenty-first day of her coma but when I realized the night before that it would have been Mom's birthday, I hoped it would be then. Comforting in an odd way.
I had been grieving for years but especially so the past three weeks. The final week we were all exhausted but not nearly as much as my dear niece who had been keeping a lonely vigil all that time, far away in Vancouver. I think we had all become rather numb so I was shocked at my response to the expected news. I thought I was ready and all tapped out, but when my grief picked me up and threw me violently to the ground, wailing and screaming for what seemed a long time, I was surprised. It was almost an out-of-body experience as my rational self stood aside calmly and watched the display. I had no more control over it than I would have over a raging bull bearing down on me.
Michael looked on in silence, laying a comforting hand on my convulsing back. He seemed rather confused. I think he understands what has happened. He had quite a bond with my sister, only two months apart. A sister to him too.
That night I crawled into bed very late, my throat raw, my head pounding, shivering uncontrollably. The keening wind allowed little sleep. I awoke in the early hours from a brief sleep, aware of a strange silence in the house and realized the wind had knocked out the power. It was a cold, wet, miserable day, perfect for the occasion. The house was freezing, the electric furnace unable to warm us. Damn, I'd have to light a fire in the living-room wood stove if there was to be any hope of a cup of tea and comfort. My brain was so foggy that it didn't occur to me to call the Hydro company to find out how long we might be in the cold. It seemed entirely appropriate for me to play pioneer and huddle around the fire alone in the dawn half-light. It was at least something to do while I reflected on my sister's life.
Ann Verney Kakuno: May 10, 1948 - April 19, 2011. Daughter, sister, mother, surrogate mother to a much younger me, wife, dedicated teacher, friend, long-time stamp collector, professional standard seamstress and craftsperson, volunteer worker.
In old movies of our childhoods during our early years in Canada she and I seem inseparable, I a toddler, she a gawky but pretty young girl, just launching into adolescence, stuck with my care. There is an image of us hanging out together on the flat, bald prairie, another of us leaping through a sprinkler on a hot summer day. We shared a bed for a few years during my parents' first impoverished Canadian years, even a bedroom with my brother for a couple of years. I remember wetting our shared double bed a few times, in a house that was bitterly cold through winter nights and with no running water to bathe away the rank smell I must have spread all over my patient sister.
Ann left home for university when I was only nine but before that had been a dedicated creator of beautifully sewn doll clothes, and she patiently and meticulously cut out all my finicky paper dolls and their clothes. I was the envy of all my friends. Ann orchestrated my only two birthday parties as a kid, complete with treasure hunts and a fancy hairdo for one.
Years later, I am away at boarding school for four years of high school, hating it but always excitedly checking my mailbox after school for letters from the Outside. There were regular missives from Ann and frequent, thrilling boxes containing all kinds of contraband. We were never allowed to have food in the dorms but my sister recklessly ignored the rules and sent all kinds of fantastic treats that fed many a secret dorm feast. On one occasion we got caught but I never ratted out my sister.
She bought me my first and almost only make-up along with the coolest sunglasses ever, unfortunately long gone. I had my first and almost only cigarette from my sister, experimenting herself in our parents' kitchen.
I was her only bridesmaid at her wedding in June, 1971 to Fred Kakuno, a fine, handsome young teacher at her school. A thrill to an almost fifteen-year-old. In 1980, she stood by me at mine with her feisty little three-year-old daughter dashing around us. I remember looking back to see Fred waving a stick of red licorice trying to lure his daughter to him, all to no avail. I didn't care. I loved my pirouetting little niece and her free spirit.
Ann wept with me at the near-break-up with a bad boyfriend and later at the real end. I held her daughter and cared for her after Ann's first serious operation for a brain tumour, her little girl only a few weeks old. Ann sent me beautiful Christmas decorations every year, mostly made by her. Without her, I would have a bare tree.
In recent years, there were all those roses on a multitude of gifts: quilts, paintings, books, clothing, pottery, all riotously festooned with roses. In fact just three months before she died, she came to me in a dream, bearing red roses. The fact that these roses turned mysteriously into pot scrubbers attested to her sense of humour and my dad's, who was with her in the dream, awaiting her in the wings.
I loved my sister. I am bereft. But she is finally at peace after a long, fiercely determined battle with her body. It let her down oh so many times but through it all, she remained patient but tough, filled with a special grace and dignity.
Fly free Ann.
I had been grieving for years but especially so the past three weeks. The final week we were all exhausted but not nearly as much as my dear niece who had been keeping a lonely vigil all that time, far away in Vancouver. I think we had all become rather numb so I was shocked at my response to the expected news. I thought I was ready and all tapped out, but when my grief picked me up and threw me violently to the ground, wailing and screaming for what seemed a long time, I was surprised. It was almost an out-of-body experience as my rational self stood aside calmly and watched the display. I had no more control over it than I would have over a raging bull bearing down on me.
Michael looked on in silence, laying a comforting hand on my convulsing back. He seemed rather confused. I think he understands what has happened. He had quite a bond with my sister, only two months apart. A sister to him too.
That night I crawled into bed very late, my throat raw, my head pounding, shivering uncontrollably. The keening wind allowed little sleep. I awoke in the early hours from a brief sleep, aware of a strange silence in the house and realized the wind had knocked out the power. It was a cold, wet, miserable day, perfect for the occasion. The house was freezing, the electric furnace unable to warm us. Damn, I'd have to light a fire in the living-room wood stove if there was to be any hope of a cup of tea and comfort. My brain was so foggy that it didn't occur to me to call the Hydro company to find out how long we might be in the cold. It seemed entirely appropriate for me to play pioneer and huddle around the fire alone in the dawn half-light. It was at least something to do while I reflected on my sister's life.
Ann Verney Kakuno: May 10, 1948 - April 19, 2011. Daughter, sister, mother, surrogate mother to a much younger me, wife, dedicated teacher, friend, long-time stamp collector, professional standard seamstress and craftsperson, volunteer worker.
In old movies of our childhoods during our early years in Canada she and I seem inseparable, I a toddler, she a gawky but pretty young girl, just launching into adolescence, stuck with my care. There is an image of us hanging out together on the flat, bald prairie, another of us leaping through a sprinkler on a hot summer day. We shared a bed for a few years during my parents' first impoverished Canadian years, even a bedroom with my brother for a couple of years. I remember wetting our shared double bed a few times, in a house that was bitterly cold through winter nights and with no running water to bathe away the rank smell I must have spread all over my patient sister.
Ann left home for university when I was only nine but before that had been a dedicated creator of beautifully sewn doll clothes, and she patiently and meticulously cut out all my finicky paper dolls and their clothes. I was the envy of all my friends. Ann orchestrated my only two birthday parties as a kid, complete with treasure hunts and a fancy hairdo for one.
Years later, I am away at boarding school for four years of high school, hating it but always excitedly checking my mailbox after school for letters from the Outside. There were regular missives from Ann and frequent, thrilling boxes containing all kinds of contraband. We were never allowed to have food in the dorms but my sister recklessly ignored the rules and sent all kinds of fantastic treats that fed many a secret dorm feast. On one occasion we got caught but I never ratted out my sister.
She bought me my first and almost only make-up along with the coolest sunglasses ever, unfortunately long gone. I had my first and almost only cigarette from my sister, experimenting herself in our parents' kitchen.
I was her only bridesmaid at her wedding in June, 1971 to Fred Kakuno, a fine, handsome young teacher at her school. A thrill to an almost fifteen-year-old. In 1980, she stood by me at mine with her feisty little three-year-old daughter dashing around us. I remember looking back to see Fred waving a stick of red licorice trying to lure his daughter to him, all to no avail. I didn't care. I loved my pirouetting little niece and her free spirit.
Ann wept with me at the near-break-up with a bad boyfriend and later at the real end. I held her daughter and cared for her after Ann's first serious operation for a brain tumour, her little girl only a few weeks old. Ann sent me beautiful Christmas decorations every year, mostly made by her. Without her, I would have a bare tree.
In recent years, there were all those roses on a multitude of gifts: quilts, paintings, books, clothing, pottery, all riotously festooned with roses. In fact just three months before she died, she came to me in a dream, bearing red roses. The fact that these roses turned mysteriously into pot scrubbers attested to her sense of humour and my dad's, who was with her in the dream, awaiting her in the wings.
I loved my sister. I am bereft. But she is finally at peace after a long, fiercely determined battle with her body. It let her down oh so many times but through it all, she remained patient but tough, filled with a special grace and dignity.
Fly free Ann.
Sunday, April 17, 2011
Limbo
I look outside and see a variety of nastiness. a kind of winter-spring limbo where the weather gods cannot make a decision about the season. Or it could be a cosmic joke so common to Canadian weather systems. Today alone we've had it all it seems: sunshine, hail, snow, rain, wind and something mysterious called graupel that I just learned about this weekend. Graupel is a German word and is used to describe "precipitation that forms when supercooled droplets of water condense on a snowflake", softer than and not to be confused with ordinary hail which are "snow pellets encapsulated by ice". This information was passed on to me by an avalanche expert so I'll take his and Wikipedia's word for it. It's been that kind of weekend. I think I even heard thunder at one point.
Despite the confusion of the weather, I decided to leap into spring cleaning, a decision forced upon me, arguably, by the weather itself after a particularly violent night of thunder storms and heavy rain last weekend that left our basement more than a little damp. The basement had been calling to me for a couple of years now; the disorganization and accumulation of junk had overwhelmed and nearly paralyzed me all that time. But a few damp boxes and piles of wet dust were enough to mobilize me. Most of the mess was manageable and easily controlled but it was Michael's long-neglected work bench that had me terrified.
Michael has never been a particularly neat person and in over thirty years of marriage I have had to make peace with the chaos that defined that space in the basement. As long as he could find what he needed, who was I to complain, especially since I rarely needed to use any of that equipment myself. In the first twenty years of our marriage, that was his department.
But in the past few years, I have had to take over many minor repairs in the house, and the challenge of finding the appropriate equipment in Tool Purgatory was beyond frustrating. With Michael's advancing dementia, he no longer knew where anything was nor what an appropriate tool might be, as illustrated when he took a hammer and large screwdriver to our now-defunct turntable.
Yesterday I rolled up my sleeves and spent a happy couple of hours purging (interrupted, of course, by frequent dashes upstairs to check on Michael, hoping that he wouldn't cotton on to my activities - he's still remarkably protective and defensive of that mess). I filled canister after canister, bound for the recycling bin, with loose and random metal objects, ranging from rusty nails of all sizes to free-roaming nuts, bolts, broken tools, and odd bits and pieces that had no significance to me. I pared the whole mess down to only what I would use and need. To that end, during a morning outing last week, I purchased a full set of screwdrivers and wrenches for myself because Michael's set is not only incomplete but also horribly maimed in some cases from botched "repair" jobs. I bought two briefcase-sized (and probably overpriced) containers filled with a lovely, well-organized and labeled array of nuts, bolts, and screws so I will no longer have to forage through the clutter on the workbench to find appropriate hardware. The miracle of all this effort was a satisfying, clear, empty space on the table inviting actual work to take place, the first such space in thirty years.
The focus of the work allowed me to shut out the ambivalent Weather which was just a reminder of the current limbo and confusion that life has thrown at us right now. My sister, somehow, still clings to life after nearly three weeks in a coma and more than two without sustenance. An offspring has cancelled a wedding and is uncertain of the future of that relationship, leaving it, at present, in a hellish limbo and with it a heavy sadness. And there's my Michael, who left me years ago for the limbo of Parkinson's dementia and withdrawal.
I saw the work as life-affirming and a hopeful step towards clearer, more decisive, perhaps happier times, even if the weather cannot figure it out.
Despite the confusion of the weather, I decided to leap into spring cleaning, a decision forced upon me, arguably, by the weather itself after a particularly violent night of thunder storms and heavy rain last weekend that left our basement more than a little damp. The basement had been calling to me for a couple of years now; the disorganization and accumulation of junk had overwhelmed and nearly paralyzed me all that time. But a few damp boxes and piles of wet dust were enough to mobilize me. Most of the mess was manageable and easily controlled but it was Michael's long-neglected work bench that had me terrified.
Michael has never been a particularly neat person and in over thirty years of marriage I have had to make peace with the chaos that defined that space in the basement. As long as he could find what he needed, who was I to complain, especially since I rarely needed to use any of that equipment myself. In the first twenty years of our marriage, that was his department.
But in the past few years, I have had to take over many minor repairs in the house, and the challenge of finding the appropriate equipment in Tool Purgatory was beyond frustrating. With Michael's advancing dementia, he no longer knew where anything was nor what an appropriate tool might be, as illustrated when he took a hammer and large screwdriver to our now-defunct turntable.
Yesterday I rolled up my sleeves and spent a happy couple of hours purging (interrupted, of course, by frequent dashes upstairs to check on Michael, hoping that he wouldn't cotton on to my activities - he's still remarkably protective and defensive of that mess). I filled canister after canister, bound for the recycling bin, with loose and random metal objects, ranging from rusty nails of all sizes to free-roaming nuts, bolts, broken tools, and odd bits and pieces that had no significance to me. I pared the whole mess down to only what I would use and need. To that end, during a morning outing last week, I purchased a full set of screwdrivers and wrenches for myself because Michael's set is not only incomplete but also horribly maimed in some cases from botched "repair" jobs. I bought two briefcase-sized (and probably overpriced) containers filled with a lovely, well-organized and labeled array of nuts, bolts, and screws so I will no longer have to forage through the clutter on the workbench to find appropriate hardware. The miracle of all this effort was a satisfying, clear, empty space on the table inviting actual work to take place, the first such space in thirty years.
The focus of the work allowed me to shut out the ambivalent Weather which was just a reminder of the current limbo and confusion that life has thrown at us right now. My sister, somehow, still clings to life after nearly three weeks in a coma and more than two without sustenance. An offspring has cancelled a wedding and is uncertain of the future of that relationship, leaving it, at present, in a hellish limbo and with it a heavy sadness. And there's my Michael, who left me years ago for the limbo of Parkinson's dementia and withdrawal.
I saw the work as life-affirming and a hopeful step towards clearer, more decisive, perhaps happier times, even if the weather cannot figure it out.
Wednesday, April 6, 2011
The Wait
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.
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.
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.
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