By Keith McWalter
One Sunday ten years ago, my mother Alice and I sat together in the dining room of the retirement community to which she’d moved at my urging a couple of years earlier. “The Sequoias” was an appealing, campus-like complex of small apartments and common facilities on the San Francisco peninsula, about a mile from where I then lived.
My mother and I had lunch together most Sundays after attending services at the Presbyterian church down the road, where she sang in the choir and I often sat in the pews and watched her bobbing, red-haired head. She was 85 years old, lucid and sociable and, while delicate and careful of bearing, far from frail. I was going through a divorce and much of our conversation that day cycled between my tepid explanations of why this was taking forever and her muted puzzlement that two people like my wife and I couldn’t work out their difficulties, as though I’d come home with a sub-par grade on a particularly important standardized test (which, of course, I had).
As we chatted, she ate little, and complained of an upset stomach. I urged her to eat something anyway, as she never seemed to take in enough calories to fuel a hamster, let alone a mature woman. Later I walked her back to her little studio apartment, admired the new plantings outside her sun porch, and went home to watch some football.
That night my mother called me at home, late. She never called me, let alone late at night, seemed still to think that phone calls were the costly extravagance they had been in her childhood, to be resorted to only for the most pressing and practical purposes. She said her stomach felt much worse, and when pressed, admitted that she’d had diarrhea (a word that, to my knowledge, she’d never uttered to me before, and certainly not with regard to herself) and felt nauseous. She had no car, and had been unable to convince someone from the Sequoias to drive her the half-mile to the nearest supermarket for some Gatorade (which she’d been told she could “keep down”). I told her I’d be right over, and on the way stopped at the pharmacy and hastily bought a number of over-the-counter palliatives, some Tylenol, and the Gatorade.
I found her in her nightgown in her deployed Murphy bed, two simultaneous indiscretions she would never have exposed me to under normal circumstances. She looked pale, as well as embarrassed to have me putting my hand to her forehead. I felt no fever, and quizzed her about what she had eaten recently. The Sequoias’ medical clinic was closed for the evening, and when I offered to call a doctor and make them damn well open it up, she said no, she just needed something to drink and some sleep. I made her promise that if she felt no better by morning, she would call the medical clinic and get herself checked out. She submitted to this role reversal with some grumbling, and even allowed me to tuck her in.
The following day was a typically busy one in my office in San Francisco, and by late morning I had forgotten about my mother’s bad stomach, full as I was of professional self-importance. On returning to my desk after some trivial errand, there was a voicemail message from her, sounding a little feathery and strained, saying that she was being taken to Stanford Hospital and that she had been told that there had been an E. coli outbreak at the Sequoias. In a mild panic I called her apartment, got no answer, then called the Sequoias’ medical clinic and was told that no doctor was available and I should call back later. At this, lawyer that I am, I smelled crisis management, and bolted for the door.
I raced my car down the San Francisco peninsula to the enormous Stanford Hospital, and was told that my mother was in the ICU. I found her there in a room to herself, in transit between the bed and the bathroom for what I immediately understood from her pained expression and shuffling gait to be the hundredth time that day. She was in a hospital gown and slippers, and looked disheveled and not at all glad to see me. She was, by upbringing and disposition, an extremely modest woman. Her eyes never quite met mine, and she spoke in an irritated grumble. It dawned on me that she was humiliated to have me see her this way, having never been in a hospital in her life except to give birth to my brother and me and to attend to her sister when she’d had a mastectomy. I decided to stay out of her way for the moment.
I eventually located an attending physician who told me they would administer an intravenous drip to re-hydrate her, and that while blood samples had been taken to determine if E. coli was indeed the cause of her condition, results were not expected back for at least a day. This struck me as preposterously slow in the digital age, and I told him so. He shrugged. I asked about antibiotics and was told that these were never given in these cases as they only accelerated the release of toxins by E. coli bacteria. Clearly I had much to learn. I envisioned the little bastards spewing venom in their death throes as the amoxicillin washed over them. Kill them anyway, was my first thought.
At this point I was worried and angry, but not fearful. My mother was in the ICU of one of the great teaching hospitals in the world, with the most advanced research and equipment at hand. I thought of E. coli as something on the order of salmonella – something that could make you sick and maybe wish you were dead, but unlikely to be life-threatening. And my mother was not a sickly or weak-willed woman. I figured they’d send her home in a day or two and my job in the interim was to be available just in case she deigned to speak to me.
In her articulating hospital bed, Mom was more agitated than I thought warranted, still averting her eyes and responding to my obsequious questions with monosyllables. It occurred to me finally that she was scared, and didn’t want me to see it. I mumbled a few words of reassurance, but she would have none of it. With the intravenous drip stuck in her arm and her eyes drooping, I eventually kissed her on the forehead and went home for the night.
The day after my mother’s hospitalization I was on the phone to the Sequoias like a raptor on prey. I was again told by the medical clinic that my mother’s regular physician was “busy.” When she finally called back she said that she had no information on my mother’s condition because, she said, once a resident was taken to the hospital, the Sequoias’ medical staff no longer followed the case. I told her that sounded crazy to me, and that while she might think she had no further stake in my mother’s condition, I intended to hold her and the Sequoias responsible for it, so she’d be well advised so show some interest…..and so on, up to the point I slammed the phone down.
When it rang again, it was my mother, sounding confused and panicky, saying repeatedly that they “couldn’t make any decisions” about her care. I assured her that she wouldn’t have to, that I’d be right there, and asked her what decisions she’d been asked to make.
“Dialysis,” she said. I thought I’d heard her wrong, or that she was slurring, or hallucinating. I called my daughter Jessie, who was a law student at U.C. Hastings in San Francisco, and asked her to join me at Stanford Hospital.
On my way there I called my brother Craig back in Columbus and told him what was happening. He had already heard from my mother that she was sick, but was startled to hear that she was in the hospital. I explained things as best I could and promised to keep him up to date.
Jessie and I found my mother in her bed, pale and sullen and, again, withdrawn and uncommunicative in a way that seemed bizarre even by her exaggerated standards of modesty. When I finally got her to talk, she said she’d had a visit from her pastor from the Presbyterian church, and been humiliated when he’d entered her room just as she was being helped to the toilet for the umpty-umpth time that evening. “Don’t let anyone visit me. I really don’t want any visitors,” she said in a voice that gave me to understand that any moron would have known this in advance.
I soon got to the bottom of the mention of dialysis: an intern drew me aside and said that my mother was experiencing renal failure. As I had power of attorney under my mother’s living will to make medical decisions for her, they would put her on plasma-replacement dialysis only if I would consent to the procedure. My heart dropping to around my own kidneys, I said I would. But what, I asked with the first flutter of real fear, was causing renal failure?
The blood samples had in fact come back positive for E. coli, contamination vector unknown. I would later learn in some detail the effects of the bacterium in the human gut. It emitted a powerful toxin which, when absorbed into the bloodstream, caused platelets to coagulate en masse in a futile immune response. These massively clumping platelets soon choked any body part rich in blood vessels, such as the kidneys and the brain. The effect on the brain is something like hundreds of mini-strokes. This at least in part accounted for my mother’s lack of focus and refusal to talk -- she couldn’t focus and she couldn’t speak, because her brain was being asphyxiated. This would make her at least temporarily demented, but the renal failure was worse – that could kill her.
The hematologist in charge of my mother’s case had ordered full hemodialysis (a three-hour procedure, to be performed daily) in addition to plasma replacement therapy (another three-hour procedure, also daily). In essence, they were going to cleanse and replace my mother’s entire blood supply every day. Would I consent to this? Yes I would. But I wanted a meeting with all of my mother’s attending physicians the very next day.
The following morning, my daughter and I met with four specialists in a little conference room off the ICU. We sat around a table just as I had sat around countless tables like it in countless rooms like this one to discuss, say, a financing transaction or partnership taxation. But in this case, the topic was the likelihood of my mother’s survival.
The doctors told me that she had probably suffered extensive organ damage resulting from hemolytic uremic syndrome (HUS, that disaster of the blood platelets), that some of it, including loss of speech, might be irreversible, and that the prescribed course of treatment was to continue the plasma replacement and hemodialysis for the next few days -- or weeks -- to see if her kidneys would recover and if any other organs showed signs of improvement. At this point I felt obliged to point out that my mother’s living will (not to mention my own knowledge of her preferences) ruled out “heroic measures,” and that a lot of what they were describing seemed to fall into the “heroic” category. The doctors responded that it was too early to tell if current treatment was having any effect, and recommended that the dialysis be continued for another few days.
I looked at my daughter, her eyes large and grave and very much like her grandmother’s in her youth. She had reached the age where she needed less to be sheltered from things like this than to be included in them – the beginning of that great tilting of the world that would end with her in my place and I in my mother’s. Better to let her practice this now. I asked her what she thought and she said that another few days made sense to her. I agreed and the little meeting broke up.
I called my brother again. He had been the one who had seen my mother for lunch every Sunday when she had lived near him, was there with her when my father had died (as I had not been), had sent her off to California and to me, his older brother, with what must have been a mixture of regret and relief. I had brought her to this place, and now she was dying. He was near-mute, far away, helpless. At least I was on the scene. I told him to consider coming to join me, soon.
I called my mother’s sister, Jennie, who lived in Phoenix near her daughter Becky. My mother and Jennie had been close throughout their lives, and Becky and her siblings Melanie and Kevin and my brother and I had all been kids together, regularly visiting one another’s homes across continental distances. We all thought that Jennie was the smartest person in the entire family: a feminist before the word came into common currency, a survivor of a dozen domestic disasters (ne’er-do-well husband who died young of emphysema, consequent decades of single motherhood, only son killed in a SCUBA accident, breast cancer, younger daughter lost to drugs and the street, you name it), eloquent letter-writer, bona fide MENSA member, her life was a saga to beggar fiction.
Aunt Jennie couldn’t have been clearer: Alice wouldn’t want to live like a vegetable. Alice wouldn’t want to be poked with needles and manhandled by orderlies. Alice would rather be dead. I understood and agreed, but said we had to give it some more time. She told me that Becky was planning to fly out to join me and Alice, and that was welcome news. I considered my cousin, in her forties and a clinical therapist, to be a rock of empathy and good sense.
The days blended together now. I no longer went to my office. I arrived at the hospital one day to find my mother, agitated and incoherent, with the dialysis technicians attempting to find a blood vessel in her body large enough to insert the large-bore needle necessary for the blood transfusions. After much struggle, as I cringed helplessly at the foot of her bed, they used a vein just below her neck and inserted a “permanent” needle portal there to accommodate the repeated transfusions and other injections that would be made.
She was only intermittently lucid now and had stopped speaking altogether, except for the occasional “yeah” or “no” and a shake of the head. She had been catheterized and outfitted with an adult diaper to deal with the chronic diarrhea. She was aware enough to know when she needed to go to the bathroom and would then hold her arms out to me to help her get up, like a little girl who is tired of walking and wants to ride in her parent’s arms. I would try to quiet her and get her to let go and simply endure the humiliation of soiling herself. My dignified, modest mother. I was grateful in a way that she could not speak, that we had no choice but to work through this in grim pantomime. When she quieted, I would drift out into the hallway and lean against the wall for awhile.
We entered the second week of my mother’s illness. News of the E. coli outbreak at the Sequoias had leaked into the local press. More than two dozen residents had become ill, and over a dozen had been hospitalized, most for a few days. Only my mother remained in intensive care. Suspicion had centered on a spinach salad that had been served an anniversary party at the Sequoias. I knew from that last Sunday lunch with her that she had attended that party.
The dialysis continued, six hours a day. A machine the size of a refrigerator would be wheeled into my mother’s room, an amiable technician would hook her up to the apparatus at the various ports and hoses sunk into her body, and the slow churning would begin. The technician pulled up a chair and read a magazine, peaceful as a monk.
Though she was not given any sedatives, my mother would appear to sleep throughout this process, as she did for most of the day. It was as though some natural anesthesia had kicked in to protect her from her mortifications, or her body was engaged in such an exhausting inner struggle that there was no energy left for the outside world. I had abundant time to study her in the act of sleeping, something I had rarely witnessed in my entire life. She would sometimes snore, but what struck me was that on the exhale her lips would bubble up for a moment before her breath would burst softly through with the sort of wordless noise she might have made when, alert and judgmental, she disapproved of something. Years later, coming out of an afternoon nap, I would catch myself doing the same thing, and remember her in her hospital bed with the sun striping the sheets through the half-drawn blinds.
My mother was still producing no urine. She had had no solid food in over a week, so there was discussion of inserting a feeding tube, either nasally or through her stomach wall. I said I would consent to the former but not the latter. This was the sort of fine calculus I’d descended to in trying to rationalize that we were not keeping her alive by the “heroic measures” she so abhorred. Soon the normal course of the plasma replacement would be run, though dialysis would have to continue in the absence of any perceptible renal function.
The insertion of the feeding tube did not go well. While the tube was inserted into her nasal passage without much difficulty, x-rays later showed that it had been passed into her trachea and lung. After another couple of attempts over many hours, this effort was abandoned. She was left with another indignity, a bloody nose, which I futilely dabbed at.
If there is a God and he has angels on earth, surely a large percentage of them are assigned to work in ICU’s. One nurse named Gina attended to my mother as though she were her own, washing her with a gentle intimacy I could never have managed, brushing her hair, speaking to her as though my mother heard and understood every word, seeming to understand my mother’s grunts and sighs, often simply sitting for a moment to hold her hand. She must have seen mortal illness and death a thousand times over, yet behaved as though each new body before her was a unique treasure. This broke my heart open as nothing else had, this simple, direct, brave caring of one stranger for another. I was and am in awe of Nurse Gina.
Then the bane of old people in hospitals arrived: chest x-rays revealed indications of pneumonia. The antibiotics that had been avoided in the early stages of her illness were now administered, and an oxygen mask was strapped around her face. She was slowly disappearing into a cocoon of medical apparatuses, and into herself.
Throughout these days my mother responded, if at all, only to the offer of water, which she craved continuously. This could be given to her only in the form of small bits of ice, which I would slip onto her tongue with my fingers in a way that reminded me uncomfortably of the gentle way a family dog would muzzle a treat.
Becky arrived from Phoenix, Craig from Columbus. My brother was speechless and undone to see our mother this way all at once and without the incremental deteriorations I’d witnessed, and could barely stand to be in her room for more than a few minutes. He’d keep disappearing and we’d find him down the hall, in the cafeteria, outside looking at the sky.
Becky – cool, assured Becky – clearly saw herself as a stand-in for her own mother, who was herself too ill to travel. She was the older daughter, responsible and successful – the female version, in her own family, of me. We’d always had an unspoken mutual understanding of the burdens of filial competence and, therefore, of each other, and we both recognized the irony (or was it simply logic?) that her own mother, having survived so much, including cancer, might at last survive her only sibling, my mother, who had enjoyed a vastly more comfortable and tragedy-free life.
Mom’s dialysis continued, and because she was agitated when conscious and would attempt to tear away the multiple intravenous lines running into her body, she was put under wrist restraints for much of the time. Her skin had always been thin and dry and bruised easily, and by now she was bruised over much of her body. Her forehead was papery and cool when we bent to kiss it.
The one acquaintance I had who was a doctor at Stanford showed up to discuss my mother’s condition with me. A lovely olive-skinned Pakistani with brooding brown eyes, she was a pediatric cardiologist (a doctor to the hearts of children, which struck me as a redundantly celestial calling), but had familiarized herself with my mother’s “charts.” She expressed the view that, while the dialysis and other measures were keeping my mother alive, the quality of life issues implicated in her case led her to conclude that the best course might be to make her as comfortable as possible and discontinue the life-supporting measures. The decision would be mine to make.
I’d known this was coming, but welcomed her confirmation that certain choices were no longer avoidable. The next morning we had another all-hands meeting with my mother’s attending physicians. Jessie had come down from the city so all of our family members were present. We all agreed with the doctors that the limits of any reasonably effective medical measures had been reached, and that all efforts should henceforth turn to trying to make Alice as comfortable as possible.
So they eventually cleared away the tangle of tubes from her poor reduced body except for the nasal oxygen tube and the intravenous, and started her on a morphine drip to ensure that she was in no pain. And we all sat around her for most of the day and into the evening and talked and brushed her hair and fed her chips of ice and put cold compresses on her forehead and prayed and told stories about her and all of us -- pretty much as I suppose people have been doing over their dying relatives for millennia. And still her battered but determined little godly machine of a body continued to slowly turn its engines.
A day or two later, Becky announced that she was going to spend that night in my mother’s hospital room. I protested weakly, guiltily glad to be relieved of another night’s vigil.
I went home and slept and was awakened by the phone around seven on what was a Sunday morning. It was Becky, saying that my mother had passed away an hour or so earlier. We all convened at the hospital and said our final goodbyes over my mother’s body. Then, oddly lighthearted, we all went into Menlo Park and had brunch at a sidewalk café. What had gone on the night before I never asked and was never told, but there was an ineluctable rightness to her strong sister’s strong child being present at the moment my mother finally let go.
It had been two weeks to the day since that last Sunday lunch with my mother. Later in the day I returned to the hospital to begin to deal with the practicalities of having my mother’s body removed and, according to her wishes, cremated. I walked into the ICU almost by habit and with a little shock found her room empty, the bed stripped, the body long gone. Why would it be otherwise, I thought, and yet how strange to see that little room, her and our final home, laid so bare.
Several lessons were unavoidable to me in the wake of my mother’s death: that no matter when death comes, it is sooner than we want or are prepared for. That the human body is a tough little machine that doesn’t give up life easily. That the mind inheres in the body, and the body absent the mind is not the person; that once deprived of the mind, the body reveals itself as a tenacious animal mechanism, not at all the holy vessel we make it out to be. That family and friends are, in the end, our only consolation. But also that the death of others – even those dear to us -- can serve, perversely, to reaffirm the fantasy of our own perpetual survival; and that few among us can, like Nurse Gina, stare death frankly and compassionately in the face and not look away.
A few months after my mother’s death, on a blustery Mother’s Day, my brother, my daughter and I climbed the high hill that stretches upwards from behind the Sequoias to the western headlands of the San Francisco peninsula. It’s called Windy Hill, and it’s a fairly arduous climb, but from its peak, you turn west and look out over the Pacific, turn east and take in all of San Francisco Bay. We scattered my mother’s ashes there. Not a bad place to come to rest, I’m sure she would agree.
Life goes on.