MY SISTER Nina called me on the first day of December 2000, just after one in the afternoon: my mother had suffered a stroke, a major one. I was to come immediately.
“Ron is already on his way,” she said. “Serena and I are leaving for the ferry in about an hour.”
I made the distance calculations in my head: Ron was in Kamloops, 230 kilometres and three hours away. The twins would take longer. They’d have to make the hour-long drive from Parksville on the east coast of Vancouver Island to the ferry at Nanaimo, which would take them to Vancouver in about two more hours if the ferry lineup was short. Then another five hours by road to Penticton if the roads were clear. I was in Toronto, across the country, so it would take me at least a day to get there.
“How soon can you come?” I heard Nina say.
“Sometime tomorrow,” I said. “If I’m lucky with the airlines, it’ll be early in the day. If not—”
“I’ve got to go,” she said. “Serena’s here.”
“I’ll see you tomorrow,” I said, then added, “Call me tonight when you get in.”
I heard a click on the line, and I hung up, too. I’d felt no surprise when Nina told me what happened, just a surge of adrenalin. Now the adrenalin was swinging me into the darker realm of dread: I was not, despite my mother’s attempts to prepare me, ready for this. She and I had talked about it in generalities; what could happen, what she wanted done when it did. My sisters had been given written instructions more than a year ago, and I had a copy of them somewhere in my desk. Two days ago she’d mentioned, almost in passing, twinges in her head, dizzy spells that didn’t feel quite right. This had been the second call in a row where they’d come up.
“It’s just a passing thing,” she’d said. “Nothing to be really alarmed about.”
She’d had several small strokes over the previous six years. The first had gotten her in a Penticton supermarket while she was shopping. She made her way to a bench near the cashier and sat down, hoping that it would fade and she’d be able to finish her errands. She spent half an hour humming to herself while she sorted through her purse, trying to convince anyone who noticed—and herself— that she was just fine, a happy old lady taking a break while she looked over her shopping list. That was when the second stroke hit her, this time a harder thump inside her brain that took out her sense of balance. She waited a few more minutes, teetering back and forth on the bench, still hoping it would pass: still, absurdly, hoping to get her shopping done. When it didn’t pass, and she realized that she couldn’t stand, she called over a clerk, and got him to phone my father.
The strokes were minor, but it was weeks before she could walk unaided, and she’d remained permanently shaky on her feet after that. Who knows how many more that she’d said nothing about had followed those first two? None? A dozen? I didn’t know, and I’m pretty sure her doctor didn’t know the exact total.
But she knew, and she wasn’t one to kid herself about such things once she’d gotten a bead on them. She’d also known, from the first small strokes, what the eventual outcome was likely to be, and in the several months leading up to December the first, she’d laid down subtle hints for us to pick up. Beyond the set of written instructions, she’d made it clear she didn’t want to talk directly about it. That wasn’t her way. Instead, she laid down a carpet of subliminals that she hoped would become visible to us when the inevitable happened.
Mostly we ignored them, the way I did when we’d talked before. And so I was shocked by the reality of what was happening, but it was the shock of someone who knows a storm is approaching. You understand that rain and wind are on the way, but the rain, when it begins to fall, is cold anyway, and the chilly violence of the wind still takes your breath away.
Before I could process what I was feeling, a sliver of resentment elbowed its way in: this should have happened to my father. He was older, wasn’t he? No, that wasn’t quite it. After a lifetime of unproductive arguments and confrontations, nearly all unresolved and not likely to get resolved, I’d almost welcome his death, or at least be able to move on without difficulty, maybe with a sense of relief that our war was over. But for my mother’s death I was woefully unprepared. As I wandered around the house in the moments after my sister’s call, my emotions were running pretty much as they did while I was a small child, anxious that she was about to go out for the evening: What would become of me if she didn’t come back?
I didn’t talk about it with my brother and sisters, but in those first hours, each of us probably experienced something similar. Yes, we were grown adults, and competent ones, most of the time. But we were also the children she’d borne into the world and then nurtured, and for the next few weeks, those children would be closer to our collective and individual emotions than they had been in many years.
My mother had prepared me—more successfully— with a strict set of protocols for behaviour during a crisis: suppress your emotions, particularly the sentimental impulses, do what has to be done to get yourself and others through it, then deal with the aftermath on your own time. It had seen me through four marriage breakups, and dozens of accidents and other bits of mayhem. I’d seen my brother operate by this system when his domestic life had come apart and I knew he’d hold together here. I assumed that my sisters also would know how to handle themselves. We’d get through this, then, and on the terms our mother had set: there were to be no heroic measures by the doctors, we were to be there as comforts to her and as witnesses if the circumstances allowed for it. But we were to let her die, and we were to get on with our lives after she was gone.
We wouldn’t be expecting much from my father. For at least a quarter century he’d been increasingly consumed by his phobia about death and illness, avoiding it with others well beyond the boundaries of social nicety, often walking away from conversations in which his elderly friends were enumerating their various maladies and the medical procedures they’d just had or were scheduled for— unless he could make a Barley Max pitch. He could make it to his own medical appointments, but only if my mother made a scene, and he didn’t like funerals. Too much goddamned negativity for him.
“It’s a good idea to stay away from hospitals,” he’d say without a trace of humour. “People die in hospitals.” Then he’d launch into the sales pitch for Barley Max. His phobia had become a family joke that was only a little dark: we joked to one another that he was so afraid of dying that he’d probably live forever.
The not-so-funny side of it was that he was little help in the face of incapacity or the other catastrophes life drops on everyone. He didn’t respond when my siblings and I were in the glue except to offer the usual Rotary Club philosophies and platitudes. And he was now going to ignore or trivialize the death agony of the woman he’d lived with for 64 years.
But nothing, of course, is that black and white. One time, the motor of my Volkswagen blew up a few miles outside Penticton just after I’d broken up with my first wife. My son Jesse, just over two at the time, was with me, and I was, as usual in those days, broke. My father towed the car into town behind his Cadillac, and after we got a new motor for the little car, he said, “Why don’t you fix the rust on this thing while you’re here? May as well paint the damned thing while we’re at it.”
So that’s what we did. The two of us spent most of four days pounding out dents, trowelling Bondo into the wheel-wells and along the rusted doors, and then power-sanding and wet/dry sanding the entire car. As we worked, my father piled on his Rotary Club homilies and talked about how I could remedy my character flaws. I dodged what I could, licked my wounds in silence when I couldn’t, and tried not to let him see it bothered me. A week later I had a bright yellow mechanically sound car that got me through the next several years.
I was too stupid to acknowledge that we’d had fun working together, that I’d learned several useful skills or that when I returned to Vancouver I was more or less undamaged by his bullying. There was always that cost of doing business with him, but I despised business too much to accept even its practical transactions. My loss.
Within the family there was never much complaining about this particular flaw in my father’s character, maybe because we knew that complaining wouldn’t help. We rolled our eyeballs when he got going, my mother would snort in disgust, open the fridge and stare into it as if the remedy was in there somewhere. He was what he was, and we all understood, whenever his phobia about age and illness came up, that it was part of his survival strategy. But now, it meant that we were going to have to handle the end of our mother’s life without much participation from him. So be it.
I was on a flight the next morning. Toronto to Calgary, Calgary to Kelowna. From there, I rented a car for the 60-kilometre drive to Penticton. I could have asked to be picked up, but having my own wheels was a long-standing precaution against being at the mercy of my father’s provision. With the three-hour difference in the time zones, I was in Penticton by midafternoon, I think.
Let me clarify this “I think.” In a mortal crisis, it is bad form to take field notes or take pictures, and thus I have to rely on memory, of which I possess, as noted earlier, the kind that stores by mental snapshots and slapstick, not with the high-resolution sequential stuff that some people are blessed with. Thus, I recall the first 90 seconds of the initial phone call and its aftermath. But the next picture is the light dusting of snow in the parking lot of the Penticton hospital. I believe that I drove directly to the hospital from Kelowna without stopping first at the house, but I’m not completely clear about that. One or both of my sisters might have been at the hospital when I arrived. I don’t remember that, either. All I have is a dusting of fresh snow in the hospital parking lot, the chill in the air, and, wait a minute, that as I approached the hospital desk, I felt a surge of vertigo that nearly brought me to my knees. There was to be no slapstick for a few weeks, and very little laughter.
The next memory snapshot is from the doorway of my mother’s hospital room. One of my sisters is probably in the room—again, I’m not sure, because only my mother is in the frame. Had I talked to anyone in the hallway? I don’t recall. But there is a window behind the bed, with the drapes closed. I’m sure of that, and that the room is painted a pale blue instead of the expected institutional green, and that the bed is placed east/west. My mother is lying on her side, her back toward the wall. I recall a feeling of relief that she was in a private room. Someone must have gone over my father’s head on that one, I thought. My brother’s work, probably, or a courtesy granted to her for working at the hospital all those years as a volunteer. Had my father been involved, she’d have been in a ward to save the extra expense: private rooms cost money.
She seemed smaller. Smaller than in life, I remember thinking. She was lying on her left side, unmoving, staring at something near the bottom of the bed. I entered the room, not sure what to expect. Was she sleeping? Unconscious? Or was she there, inside her paralyzed body, fully aware?
The clinical description of what had happened inside her brain reads this way: Major infarction by MCA (middle cerebral artery) stroke results in sensory loss and weakness that are most prominent in the part of the face and in the extremities opposite to the side of the brain where the stroke has occurred; such infarction causes as well a condition called aphasia—the loss of power of expression—although comprehension tends to remain reasonably well preserved.
What I saw in those first minutes with her confirms that clinician’s description: the right side of her face, first of all, was blank without being peaceful. Not empty, but rather, vacated, absent. Then she blinked, realizing that someone was in the room. She struggled to move her body so she could see who it was, and failed. I reached out, took her left hand in mine, and moved into her field of vision, kneeling at the side of the bed.
Half of her face animated: recognition, pleasure—in that order, and with a delay in the transition. She’s there, I thought, but damaged, and thus slower. Then the “things have come to this” shrug/grimace that became, over the next days, my firmest conduit to her. It was not a gesture I’d ever seen her make before. It was, rather, a contorted summary of what the stroke had done to her. It was also strangely characteristic, and it was uncontestable evidence that she was there, her mind—or a part of her mind—intact. But what part, exactly?
Over the next several hours I was in and out of the room, and so were my brother and sisters—not quite buzzing around—but present. We easily agreed on the basics: she wasn’t to be alone for the duration, particularly not during the night, and that meant we would take shifts attending her. Without thinking about why, I offered to take the midnight-to-6-a.m. stint. If I’d been paying attention, I would have left that to my brother, who was the only one of us who needed the private time with her. He had things to resolve, and I didn’t. Instead, we stayed in our old roles: he handled the practical stuff, and I handled the intimacies.
Before I got there, one of my siblings had made a crucial mistake. It wasn’t egregious, but it had penetrated the medical code in the worst possible way. The No Heroic Measures agreement was long settled between all of us, and countermanding my mother’s wishes wasn’t an issue, in any of our minds. She’d been clear that she wasn’t interested in lingering on with profound physical and mental impairment. As she’d put it a dozen times with each of us, she’d had a long life, and that was enough. Like all the Surrys, death held no terror for her.
What we didn’t know was that, by itself, “No Heroic Measures” can project a course of decline and death that is unspeakably cruel and painful to an otherwise healthy person who has suffered a major stroke. In essence, it condemns that person to a death by dehydration and/or starvation. The body will slowly deplete itself of fluids and nutrients, and depending on the health and body form of the “patient,” up to 14 days can pass before fluid begins to collect in the lungs, and pneumonia sets in. Left untreated by antibiotics, another two to five days of drowning agony can ensue before death occurs. Until the pneumonia progresses, the victim of this barbarous procedure is fully conscious.
Given my mother’s careful preparations, I’m pretty certain that she had a tacit agreement in place with her doctor to make the end come relatively quickly. This would have involved morphine injections, which along with quelling pain, also serve to depress the respiratory system, thus speeding the onset of pneumonia. But administering morphine to a patient not in extreme pain is a quasi-legal practice, and few medical practitioners will do it without clear discretionary powers assured by the family.
It was here that the error was made. In their initial meeting with my mother’s doctor, one of my sisters, likely distraught at seeing my mother’s condition, let the following sentence drop: “Isn’t there something we can do?”
The medical system has a ready answer to this question. Medical measures are available that could stabilize my mother’s condition. These measures—mechanical rehydration, intravenous administering of nutrients, along with a host of drugs that might or might not stabilize the bleeding inside her brain and prevent further damage—might have prolonged her life indefinitely in a semivegetative state. Stroke victims can linger in this kind of limbo for months, years. In extreme cases, a decade or more can pass.
The doctor discreetly didn’t answer my sister’s question. But discretion and caution are one and the same in geriatric medicine, and he wisely withdrew from the situation—I didn’t see him again until close to the end. The completely innocent of-the-moment question my sister asked raised the issue of how onside the family actually was with the No Heroic Measures agreement, and it wasn’t something that could be clarified, even in private, because it would require the doctor to ask us some questions of his own that would expose him to legal liability if one of us subsequently changed our mind. Worse, the fundamentalist nurses in the hospital who were present when the question was asked had been liberated by it to countermand the NHM order, and would be hawking my mother’s doctor’s interactions with her. That question my sister asked—which was less a question than an expression of regret—made my mother a battle piece in a medical culture war, and it condemned her to an excruciating death.
We couldn’t ask her if she was still onside because she couldn’t communicate beyond that shrug. We tried to put together a rudimentary communication system—one eye blink for yes, two for no, but the stroke seemed to have disabled her ability to process language. She knew who we were, she knew who she was, but I don’t think she could understand what we were saying, and was incapable of articulating her thoughts.
Yet within the first 36 hours, she found ways to communicate to us that she hadn’t changed her mind about dying. Serena left the room for a few minutes while a nurse was changing the sheets and returned to find the nurse trying to spoon Pablum between my mother’s lips—and to find my mother refusing to swallow, even summonsing the will to blow the gruel across the sheets. On a shift a few hours later, Nina ducked out for a breath of fresh air while my mother slept, and returned to discover that a nurse had placed an intravenous needle in my mother’s arm—and to witness my mother pawing frantically to remove it.
One of us—Ron, probably, who’d taken on a kind of calm authority in the first few days that commanded everyone’s respect— explained patiently to the nurses that we were serious about the No Heroic Measures order, and we agreed among ourselves not to leave the room unguarded while certain nurses were present.
And so the days began to pass. Nieces and nephews showed up to sit vigil—my son Max, then at university in Vancouver and in the middle of his exams, caught a bus and spent a day at his grandmother’s bedside, and so did Nina’s daughter Laura, on whom my mother had conferred the de facto role of the next keeper of family solidarities. There was also a steady stream of my mother’s friends. Most were elderly, but a few younger women showed up, including, one afternoon, her investment counsellor. It was gratifying but not quite surprising, and it helped to pass the hours. My mother seemed to recognize everyone, gave each of them her shrug of greeting— look what’s become of me—but her language was gone.
My sisters bullied my father into making one trip down to the hospital—but just the one. He walked through the hospital rotunda as if it were a prison panopticon, followed us meekly to my mother’s ward. Then he stood in the doorway of her room and gazed at her in silence until she noticed he was there. He mouthed a few uncomfortable pleasantries, briefly held her hand, and left within 20 minutes. He seemed shaken, and soon after we returned to the house, he broke down, wandering around the living room muttering and weeping.
We got him to sit down, and Nina leaned over him, put her arms around his shoulders and asked him what was bothering him.
“Rita’s been with me for 60 years,” he answered, bursting into tears again. “And now what’s going to become of me?”
Nina stepped back as if she’d been slapped. “For God’s sake, Dad,” she snapped. “This is happening to Mum, not to you!”
“I’ve got to think ahead,” my father mumbled, his expression chastened but not guilty in the least. “It’s going to be awful lonely around here.”
My night shifts proved less trying than I thought. They were, actually, easier than some of the shifts during the day: few nurses were on duty at night, and my mother, at first, seemed less restive than during the day, sleeping soundly for three and even four hours at a stretch. When she was awake, I talked to her, and when that ran out, I read to her. It didn’t seem to matter which I did, although she wanted eye contact more while I was reading. I was never sure she understood what I was saying, but she did recognize interrogatives, to which she responded by raising her eyebrows in an interrogative of her own. It wasn’t “Why me?” but rather an almost-joking “Isn’t this awful, here we are together in the middle of the night, and we can’t talk.”
Can a person dying this way be comforted in any meaningful way? My voice seemed to calm her agitation only a little, and there were moments when I almost convinced myself that she understood what I was saying to her. Eye contact clearly calmed her, and so did touch, but talking was easier, and so I talked, and talked.
I’d also brought a tape player with me, and I played her a tape I’d compiled for her months earlier for a Christmas present. Her favourites were there, Nelson Eddy and Jeanette MacDonald singing “Sweet Mystery of Life,” and Cavalleria Rusticana, about which I learned, from watching her eyes as it played, that it was only the intermezzo that she knew and loved. I’d added a new recording by Rufus Wainwright of Irving Berlin’s “What’ll I Do,” which she responded to by lifting and dropping her good arm several times in a way that left me undecided whether she was pleased or upset by it. But the song that moved her most was a 1950s recording of Kitty Kallen singing “Little Things Mean a Lot.” I’d found a 45 of it in a second-hand record store back in the summer, and bought it without quite knowing why until a few days later when a memory snapshot restored itself.
I’d been about ten years old the first time I heard the song. My mother and I were at home listening to the morning radio when the song came on. She was tidying the living room, and she stopped and listened raptly, with a dreamy, troubled look on her face. She returned to the kitchen, and I followed her, sitting at the kitchen table as she busied herself at the sink, fussing with the dishes and keeping her face averted.
When she turned around there were tears running down her cheeks, and now, 40 years later, I saw the tears again. She lifted her arm and dropped it, and I understood that she wanted me to play it again. I cued the machine, and this time, I listened to the lyrics:
Blow me a kiss from across the room
Say I look nice when I’m not
Touch my hair as you pass my chair
Little things mean a lot
Give me your arm as we cross the street
Call me at six on the dot
A line a day when you’re far away
Little things mean a lot
Give me a hand when I’ve lost the way
Give me your shoulder to cry on
Whether the day is bright or gray
Give me your heart to rely on
Send me the warmth of a secret smile
To show me you haven’t forgot
For now and forever, always and ever
Little things mean a lot.
As I listened to Kallen’s achy voice, I realized that this wasn’t just my mother’s song. It was my summary—on her behalf—of the things my father had never done to please her.
Did this mean she’d had an unhappy marriage? No. She’d gotten most of the things she wanted from it: healthy children she saw grow up, a community that appreciated her, a quiet life free of deprivation, a couple of Cadillacs to ride in—even if the last one advertised “Barley Max” on the side doors. She’d gotten domestic partnership, and a strong one. What she hadn’t gotten was companionship and the daily affection that could have made the partnership sweet. I don’t think she had deep regrets beyond those little things. But like the song says, little things mean a lot.
So I shed some tears with her as we listened to Kitty Kallen, but when I felt them coming I moved myself beyond her visual range. She didn’t need to see that I was upset. She’d have wanted to comfort me, and she had troubles of her own. This time, the troubles were mortal in the most profound way.
I had to remind myself a few more times as the days passed that this wasn’t about me any more than it was about my father. Sure, it’s a hard thing to watch your mother die, and there’s nothing on earth that can prepare you for it. No platitudes or 12-step programs help you. You can’t hide from the reality that a person you’ve loved all your life is dying when you’re witnessing the physical facts of impending death progress day by day and hour by hour. I was determined to comfort her in whatever small ways I could, and not make it about me. What made it slightly easier to focus on my job was that I was also, quietly and with the barest sort of self-awareness, growing angry. It was dawning on me that I was able neither to help nor comfort the woman who’d spent her life helping and comforting me, and that what my siblings and I had agreed to had become a waking nightmare.
Like most nightmares, this one carried its own self-propelling logic, and there was no way for us to alter that logic. We could continue what had been started, which was to subject her to the gruesome suffering of starvation and dehydration until she died from it, or we could bring the process to a stop, contravene her wishes, and prolong her agony indefinitely, although at a lesser intensity. Neither choice was a decent one.
The sole guide available to us was that her will was unwavering even though her route to the end was becoming more excruciating as the hours passed. To the extent that she was able to communicate at all, this was the one thing about which her wishes were unambiguous.
But why weren’t there other choices? If it is the victim’s decision not to continue living, why wasn’t euthanasia possible?
I’ll tell you. It is because Canada and most other Western countries are in the grip of a medical fundamentalism that unilaterally imposes duration of life on the elderly over quality of life. This fundamentalism is largely lodged in religious values, although some civil libertarians contribute by pointing to the slippery moral slope that becomes visible when the idea of state-sanctioned euthanasia is broached. Those concerns could be dealt with in ways similar to the way most civilized societies now handle abortion: by making it a decision to be taken between patient and doctor, with the state barred from declaring it either legal or illegal. What everyone misses in this is that at the root of the way we approach the end of life for the elderly are powerful economic and technological currents, and that these are powerful enough to supersede, by and large, the moral stances we can take.
None of our religious institutions, calcified as they are by nearly a century of struggle against the militant materialism of Karl Marx and the Bolshevik materialism that Vladimir Lenin constructed from Marx’s theoretical writings, can offer anyone nuanced choices about the fundamental issues of life and death in the twenty-first century. Institutions like the Roman Catholic Church (which attempts to ascribe all authority to the Church and its domestically illiterate clerics) and a thousand other demagogic restorationist protestantisms (which most often are on a bloody-minded quest to return all moral and legal authority to literal and mostly specious interpretations of the Bible) help no one with this. Each, in different ways, are mired in notions of the sanctity of human life that are rooted in the humanism of the Renaissance. These same senile institutions were able to ignore the nearly 100 million who were murdered during the twentieth century in the name of ethnic, racial, and political reasoning. They now ignore—or exacerbate—the insane overpopulating of the planet that we are now perpetrating. We who live under their miasma ignore the truth that all of these institutions are run for profit, not for the dignity of individual life or for collective well-being. Religious doctrine in the twenty-first century is designed, more than ever before, to legitimize the authority of the religious institutions, and virtually every sensible person knows this—in an utterly powerless way.
Meanwhile, advances in medical science have given medical practitioners and the bureaucratic and industrial apologists of medical technology powerful abilities to prolong human life. This has occurred without even the most rudimentary cultural conversation about how or where to deploy the advances, and with little discussion of what constitutes a life worth prolonging or who has the legitimate authority to choose termination or prolongation, and under what circumstances. Thus, the medical technology itself, tacitly backed by the churches, makes these choices for us, often by extending the lives of people who don’t want to continue them, and by tormenting their families and loved loves with interstitial decisions that aren’t decisions at all. Like most technology, life-prolonging medical technology is deployed simply because it exists and (this is equally important) because its deployment will generate profits for those who create and manufacture it. Yes, the idea of an alliance between religious fundamentalism and sophisticated corporate technology is counterintuitive. But after a half century inside the nightmare that was the nuclear arms race, where the cultural alliance was virtually identical, no one should be surprised by it.
Few of us understand what this alliance does on a daily basis. But when you spend two weeks in a hospital watching it torture an innocent woman who happens to be your mother, you see it in a new way. It is not benign, not civilized. It is a new kind of barbarism.
My siblings and I did what we’d agreed to do—each of us in our own way, and with our own misgivings. We shared some of our grief, each of us marvellously careful not to make a special case for what we were feeling. We also shared, to a lesser extent, the anger that was breeding in each of us, along with the sense of helplessness that was feeding it.
At the end of the first week, my mother began to fade. She slept more, she was less responsive: we saw the shrug less frequently. This decline was what passed for mercy. For my sisters, who had both become—if such a thing is possible—devout Anglicans during the previous decade, this was God’s late-in-coming mercy. For my brother and me, it was simply relief from her suffering, and from us having to witness her pain, from having to experience it by proxy. But along with the relief was a growing sense of guilt, and an objectless rage.
I talked on the phone nightly with my wife Leanna and my then three-year-old daughter, Hartlea, who asked me to kiss her grandmother for her so she’d get better. I could barely communicate with them because outside the hospital, at my parents’ house and on the route to and fro, I had difficulty staying in control of my emotions. I burst into tears in the local mall without warning, I screamed at an inattentive gas station clerk, I was overly effusive with the Canadian Tire clerk who sold me a Christmas tree, which I put up in the house against my father’s wishes, festooned with new strings of lights I bought and decorated with some old ornaments I scrounged from the crawlspace in the basement.
At the hospital I gave up playing the music tape and mostly read poetry aloud, or talked about whatever inane things passed through my head. There were more and more moments when I wasn’t sure she knew who I was—some person there to keep her company—nice enough, but she was passing beyond identity, maybe because her pain was inducing an anaesthetized lassitude that overwhelmed it.
As the eighth day ended, we asked for, and got, periodic morphine injections to ease her deepening physical distress. She wasn’t there profoundly enough to be able to use a self-administered morphine drip, nor were any of us willing to risk the inevitable temptations such a device would have presented. The nurses were reluctant to administer morphine because they knew better than we that it would trigger pneumonia. But we persisted, playing their own ethos at them, which proscribed, at least, the kind of convulsive pain she was experiencing.
And so she sank into the abyss that was her approaching death, and we into its accompanying morass of regret and guilt and unbidden recollection. When death was in plain sight, a space came up in the hospice attached to the hospital. It was too late for my mother to appreciate the muted decor, soft lighting, and the absence of hallway echoes and banging medical and food carts, but I had to admit that she’d have liked the hospice. Except for the several vases of artificial flowers and the lack of broadloom on the floors—even palliative care can be messy—the decor wasn’t terribly different than the decor in the house up on the hill.
So the hospice was for our comfort, and we were relieved to have gotten there, if not quite comforted. It meant, for one thing, an end to the fundamentalist nurses trying to spoon-feed my mother and jam IVs into her arms, and it meant that her death would be private, free from the impersonal clatter of hospital routine. In some curious ways, it also returned all of us to the world. The morning she was moved, it snowed again. As the ambulance crew lifted her from the van, snowflakes alighted on her face, and I saw her eyes blink, then close, as if the tactile sensation was too much a reminder that the world still existed.
An hour later the sky cleared. When I went outside in the crystalled brilliance of the afternoon sunlight, I recalled how beautiful the world was, how blue the sky, how green the dark pines that dotted the hillside above the hospital, how persistent and ordinary the lives of the people outside our cocoon of dying: they went to their jobs, their geriatric exercise classes, they drove to the mall to shop—all as if nothing we were experiencing was real, or if it was real, that it didn’t matter.
It also came to me that first afternoon at the hospice, that we might have innocently done something—or neglected to do something—that might have made my mother’s decline more cruel than it needed to be. For at least the last decade she’d suffered from fairly serious acid reflux, a condition in which, while lying prone, stomach acid migrates into the esophagus and throat. For years now she had slept with a triangular bolster that kept her head elevated above her torso, using simple gravity to prevent the stomach acids from migrating. None of us had thought to mention this condition to the doctors or nurses, and they’d hardly have known about it without a deep search into her medical records, since the condition was longstanding, and may not have even been recorded.
How to handle this now? Should I bring it up this late in her ordeal and load a further burden of guilt on my sisters and brothers? If my mother had suffered from it earlier in this gruesome palliative descent—and it was likely that she had, given the human stomach’s slightly perverse capacity to produce acids in search of food—that misery had since been overwhelmed by greater ones, and it was likely that her stomach had now more or less given up and shut itself down. So I said nothing, let it infuse within my private guilt and anger. For all I knew, I might have been the last of us to figure it out, and my siblings had been according me the same perverse mercy I was now conceding to them.
It wasn’t until the afternoon of December 11, when she slipped into what would be a permanent coma, that I was truly certain that death would come. The preceding days had become a blur: the siege of nurses and doctors, the daily dustings of snow in the parking lot, the tense family conferences that could decide on nothing worthwhile except funeral arrangements. That night I wrote the obituary, along with several eulogies that I tore up as soon as they were on paper: ghoulish. My brother and sisters and I ate, slept, and drove back and forth to the hospital like automatons. I caught myself thinking that it would go on forever because it already felt as if it had gone on forever.
Yet I also understood that it was ending. My mother’s breathing was slowing, becoming more ragged and laboured, her pallor deepening, her bodily tissues visibly collapsing. And except for convulsive near-awakenings, coma reigned and glimmers of pneumonia were visible. The old person’s friend, it is called, but it seemed anything but friendly. It was malevolent and heavy, its bacterial growth the final violent attack on her fading vitality. She had been starved and dehydrated, and now pneumonia was coming to drown her.
The clinical description of how pneumonia does its work is worth noting:
The microbes of pneumonia lie in wait for the appearance of any added insult that might inhibit further the already-damaged defenses of the aged. Coma is their perfect ally. It takes away every conscious way of resisting their predations, and even destroys so basic a safety device as the cough reflex. Any bit of regurgitation or foreign matter that under ordinary circumstances would be forcefully ejected at the first sign of its invasion of the airway now becomes the vehicle on which the germs ride triumphantly into the respiratory tissues. The microscopic air sacs called alveoli then swell and are destroyed by inflammation. As a result, the proper exchange of gases is prevented, and blood oxygen diminishes while carbon dioxide may build up until vital functions can no longer be sustained. When oxygen levels drop below a critical point, the brain manifests it by further cell death, and the heart by fibrillation or arrest. Pneumonia triumphs.
Late that afternoon, one of the palliative care nurses suggested to us that it wouldn’t be long—an hour, she said, or a day. But not days. “Most likely tonight,” she said, adding, “depending on how strong she is.”
Then it won’t be today, I thought. Late tonight, perhaps, but more likely, tomorrow. I had no opinion, expert or otherwise, about when it should happen, not sooner, because then I would lose her, but not later, because her suffering was no more acceptable than it had been a week ago, and the epic labour to simply breathe on had become a horror.
I stayed at the hospice most of the day—we all did—and then ducked out around eight in the evening for some sleep before the night shift. My sister Nina didn’t leave at all, napping fitfully instead on a small wicker couch under the picture window across from the bed.
When I arrived around midnight, my mother’s labour had deepened, but it seemed to have stabilized. I tried to read but couldn’t, and about 4 a.m., when Nina woke up, I drove back to the house for another hour or two of sleep.
I was pulled from that by the phone. I staggered from the couch I was sleeping on and picked up. It was my brother.
“It’s happening,” he said. “You should come.”
The four of us paced around the deathbed for several hours, barely able to speak as each breath she took became an act of heroism, each one rattling out brokenly as if it was going to be, had to be, the last. There was little left of the woman who had borne us into the world, nothing of her vitality or her laughter, replaced instead by this labouring vessel that couldn’t possible persist another minute and yet did, awfully, in a rhythmic insanity that was at once life’s humiliation and its grandeur.
And then the rhythm slowed, grew, impossibly, more ragged and chaotic, broke down for a moment, then reified, then sank, then stopped, then skidded forward, then drew itself up, a gulping in of oxygen, released without being taken, with an audible, catastrophic, epic shudder,
and stopped forever.
It was worse than I’ve been able to describe. And worse still was the 30 or 40 seconds that followed, where each of us hoped that there would be another breath—and just as fervently hoped that there wouldn’t be.
There wasn’t.