At the End of Life

“Remarkable,” Dr. Goldman said. “I wish I had a camera.” She delicately turned my mother’s hand this way and that, and my mother responded to her touch as if a lover had taken her hand or her own mother had risen from the dead to comfort her. She gazed up from her wheelchair at Dr. Goldman’s face.

By “remarkable,” Dr. Goldman meant the extent to which my mother’s nails had clubbed. Over her years of illness, her fingernails had become rounded, as if a ball were growing under each of them. Recently, they had begun to grow closer and closer to the ends of her fingers. Now, they curled right over the tips. This was, said Dr. Goldman, a sign of advanced lung disease, but my mother did not seem to register her words, only the attention being given to her. I might have found what the doctor was saying clinical, unfeeling, but we’d been visiting her for more than a decade now, and I wasn’t fooled by her gruffness. I think she was just looking for an excuse to hold my mother’s hand.

My mother spent fourteen years on her deathbed. Not literally—she wasn’t always lying down for one thing—but she was terribly sick and somehow managed to keep getting sicker. And sicker. The clinical name for her condition is systemic lupus erythematosus. It’s a kind of bodily police state, in which cells that are meant to protect the system go on a rampage, attacking healthy tissue. To me, the description could have stopped at “disease.” Dis-ease. That word described my mother’s state, most of the time. Her joints were affected, her organs were affected, and so were her brain and central nervous system. It was hard to believe a person could have so much wrong with her and yet stay alive.

There were emergencies, many of them. Those were the days of deep cuts to public spending in Ontario. Many of Toronto’s teaching hospitals were scattered among insurance companies and investment firms in the city’s pristine business corridor. From the street, I could still believe I was living in “Toronto the Good,” the safe and prosperous city where I grew up. Step through a door marked EMERGENCY, and I found chaos. It seemed no one was being looked after anymore. Bleeding, coughing, weeping patients were lined up on gurneys in the hallways. With the shortage of nursing home beds, overburdened caregivers had developed the strategy of leaving their dementia-afflicted parents in emergency for the night, just so they could get some sleep. Sometimes, it would take all night to find my mother a bed. When she finally was admitted, it was often to a place that did not have her history on file. One of the city’s earnest young medical residents would sit by her bedside to ask a series of questions she had answered a hundred times before.

At a certain point, she refused to give any more information. On a good day she’d say something like “Well, my eyes work pretty well.” And on a bad day: “I’m sick; can’t you figure that out with all your goddamned degrees?” A few times a year, an earnest doctor would take me aside for a discussion of what to do in case my mother’s heart stopped. Once, she seemed to be completely unconscious, and the doctor spoke to me about it right in the room, standing at the foot of her bed.

I learned to act calm in the face of all this. Steely, even, but it didn’t go very deep. At night, I would start up, gasping for breath, with a blind compulsion to get to her—right away—in case . . . In case what? I asked myself. Do you think you can keep her alive? It wasn’t that I thought I could prevent my mother from dying. It was that I felt I needed to be there when it happened. I didn’t understand why I had this feeling, and I tried to reason myself out of it. She might live a long time, I told myself. You can’t let it run your life. Friends said, “The important thing is to do what you can for her when she’s living, and after all, most people die alone . . .”

Reasoning didn’t help. Nor did it help that some of the time I wished she would die, if only to end the ongoing emergency in which we both lived. The threat that my mother might die alone kept me tethered to her for fourteen years, sent me rushing for the telephone no matter what I was doing, pushed me out of bed and into countless cold cabs to countless emergency rooms in the middle of the night. And those times when I deliberately went out of town or deliberately did not answer the phone, my choice was just that: deliberate. Rebel against or accede to it, the possibility that my mother might die alone dominated my life.

And there was a last-chance quality to every interaction with her. If I were impatient, distracted, or less than warm, I would be haunted by it until the next time I saw her. Truthfully, none of this started with her illness. There was always a quality of blind, breathless panic in my mother, as if she were being pursued by a menacing force. It was there beneath all her competence and decisiveness when she still was well—if you could ever have called her “well.” I wondered how someone who lived so close to death, for so long, could still fear it. Eventually, I realized she was afraid not of death but of something else, something that I could never identify and that she herself was too frightened to name.

This threat had to do with religion, with anything ritualistic or solemn. My mother was a Sephardic Jew from England. Her family had stopped attending services around the time she was born, in 1930. Maybe they feared the anti-Semitism rife throughout Europe at the time. I like to think it was because my grandmother, Jemima, found the Sephardic community too conservative. (Before she married, Jemima had held a job and campaigned for women’s suffrage.) Whatever the reason, the family did their best to assimilate. My grandfather, Aaron, became known as Harry. Daily, he stood at the mirror and tried in vain to slick down the shock of kinky hair that betrayed his North African heritage. My mother was given the name of Hetty, an anglicized version of Eti or Esther. But the rituals and customs lingered around the edges of the household and were performed furtively and without explanation. There were no celebrations—no Purim, no Shabbat, no bar mitzvahs (at least not for the younger children in the family)—only sudden, capricious changes in their diet and daily routines. The house would become suddenly quiet for a day or two—too quiet for the comfort of children—and then all would return to normal again. Every spring, a box of matzo would appear on the table, and my grandmother would eat from it for a week, brooking the teasing of her children in resolute silence.

My mother did not even hear the word Jew until she was evacuated during the war. Taken from her family at the age of nine, she was sent to a coastal town where she was to be billeted with a local family. Except that no household would give shelter to “a little Jew,” a child with olive skin, an aquiline nose, and tight black curls. She ended up with a Salvation Army family, who prayed over her daily and made her stand in an oversized bonnet on a street corner, singing hymns.

My mother did not stay long on the coast. She suffered from what she called “nerves” and was sent back to London just in time for the worst of the bombing. At war’s end her father, Harry, suddenly died, and their home was transformed by mourning rituals she did not understand: mirrors were draped in black, and groups of relatives she had never met trooped through the house to chant strange prayers and take over the management of the kitchen. My stricken grandmother rent her clothes and cast herself to the floor. “She died a little bit every day,” my mother used to say of Jemima. It was nearly two decades later that Jemima actually dropped dead from a massive stroke. My mother was in Canada by this time, and the news came in the form of a telegram to Toronto: “Mother dead.” I heard many times about the traumatic way my mother received that announcement, but there was a piece missing from the story. Years later I did the math. My mother had recently given birth to me when she heard the news of her mother’s death.

My mother dwelled on being Jewish, even as she disavowed it. Trying to make her way in show business in the 1950s, she had surgery to remove the bump on the bridge of her nose. She married a man of Scottish descent whose family had been in Canada for five generations. Her mother-in-law did not even try to conceal her anti-Semitism, and she was not unusual for her time. Yet the “secret” of my mother’s background was one of the first things anyone would know about her. “I’m an old Jew,” she’d say. It was one of the self-mocking descriptions that formed her persona. Also included were her dark complexion (“a touch o’ the tarbrush”), her “fat face,” and her “nerves.” My mother had the instincts of a clown. She said these things lightly and with perfect timing. Still, her remarks all added up to the same sobering message. My mother felt there was something wrong with her. Being Jewish was at the root of it.

My mother summed up her objections to Judaism in four words: “Too Many Fucking Rules.” Myself, I was in it for the rules. Judaism appealed to me for the same reason my mother balked at it. She had always seemed completely consumed with grief over her parents’ deaths, a grief unbounded and without any shape. As my mother’s illness descended, it became clear that I would become intimate with all the grief and fear that haunted her. And I knew I would spend a lot of time thinking about death. It was more than I could handle on my own, and it seemed the situation would go on indefinitely. What I needed were formulas, traditions, rituals; I needed someone to tell me what to do. Judaism provided this for me.

Feeling like an impostor, with my half-WASP background, I began attending Jewish services once a year for high holidays, observing other traditions with a group of friends. Not that I found any answers in mourning a death that went on for fourteen years. She died a little bit every day. No one seemed to have rules for that. Yet Judaism did offer something: the celebration of life’s imperfection, the sense of what Susan Sontag once called “moral seriousness.” Morally serious was a description of my life at that time. Every day I wrestled with enormous questions. How much could I give my mother without harming myself? How could I say no to her needs and still look at myself in the mirror every day? If not now, when?

Being Jewish did not provide just spiritual support. The practical help started with my mother’s first hospitalization, back in the late 1980s. She was placed in intensive care for congestive heart failure. My father had long ago remarried. She had no family in Canada, only my sister and me, both in our twenties. We were all overwhelmed with making sense of her illness, wondering how she was going to get the care she needed through her inevitable decline. As soon as we mentioned we were Jewish, a social worker magically appeared at the end of my mother’s hospital bed. In the years that followed, she got help in her home, subsidized housing fell into place when she needed it, and finally, one of the best nursing homes in the country had a place for her, costing no more than a regular government pension. No, we didn’t have to belong to any particular congregation. My mother was Jewish; that was all it took.

I wished my mother were religious, because it would have made her easier to deal with, but still, I admired her for her iconoclasm. Iconoclasm was her religion, and she held to it vehemently, rejecting anything that might resemble a crutch. She had a hard lot in life, and she wasn’t going to say or do anything to sugar-coat that reality. It wasn’t that she didn’t have faith. She refused to speak about it, though, or even give it any form, as if this would diminish it in some way. Her friend once told me she often asked herself how my mother managed to keep going without faith, when she was suffering so much. Then she realized that my mother expressed her faith by staying alive, day after day. Life was, to her, a challenge, and it was her job to face up to it.

The nursing home was in a part of town my mother contemptuously called “the country.” It was Way up North: half an hour on the bus. My rides to see my mother began in the Annex, the cosmopolitan downtown neighborhood where I grew up. The bus then climbed a steep hill through a district of low-rise, aging apartment buildings and culminated in an area where streets curved away from the bus route, affording glimpses of substantial family homes in yellow brick. There were no movie theaters around the nursing home, no cafés you could walk to, only strip malls, garages, and the odd tenebrous kosher restaurant. Here, my mother spent the last two years of her life surrounded by the very people she had tried so hard to dissociate herself from: Jews. Anxious, angry, curious, hungry, flirting, arguing, dancing, kvetching, laughing, singing, weeping Jews. People like herself, in other words. She took guests on a tour of the home’s valuable art collection as if she were Peggy Guggenheim, made a dinner of chopped liver and fresh bread every Friday night, and complained that I had moved her out to the country to live with crazy people in ridiculous hats.

Week after week I used to walk around the halls beside my mother while she rode her newly acquired scooter. This was her prized possession, a red scooter that had the brand name of “Jazzy.” The social worker and physiotherapist had worked for hours, filling out forms and making phone calls to get funding for it. They also ordered an old-fashioned car horn with a rubber bladder she could squeeze to produce a rude sounding “toot” as she came around corners.

My mother had always worried that pushing her old manual wheelchair was hurting my hands. She was right. After visiting her I’d have pains like electric shocks running up my arms. Still, every time she pointed out that my hands looked red and swollen I changed the subject. Just because it hurt my hands to push the wheelchair didn’t mean I could stop.

With the Jazzy, my mother was in charge of her own locomotion again, and, to her delight, I could walk beside rather than behind her. She was a dangerous driver. Disoriented, weak, she was constantly dropping off to sleep with her hand on the controls. She would slam into furniture and walls and the glass sides of the elevator. She would even run into the other people making their way along the halls with their walkers and wheelchairs and canes. Everyone did their faltering best to get out of the way when they saw her coming.

She was always on the verge of having the scooter confiscated. Yet the glances I shared with the physiotherapist over the crown of her graying head held the terrible knowledge that to take away this scooter would be a hurt beyond bearing. Another loss in an endless sequence of losses. But it didn’t matter if the hurt was unbearable. One day, she would lose the scooter anyway.

I encouraged her to wait for my visits before taking a “walk.” I would lean over and steer the scooter for her, using the lever on the armrest. She would rest her hand on my hand. Two ladies who always sat in the lounge would incline their heads toward each other as we passed: “The Daughter,” one would whisper in a thick eastern European accent, and the other would nod with approval. “Very nice.”

Early one morning, my mother’s doctor called to tell me she wasn’t well and that it was different this time. I’d better come right away. And so began a week when I sat by her bed, occasionally wetting her lips, covering or uncovering her when she seemed to need it. Whenever I was sitting in the room alone, certain images clamored persistently in my mind. I was mentally rehearsing what I would do if I had to lift her dead body from the bed and take it somewhere. A ghost body rose from my own and arranged itself around her. I slipped one of her arms over my shoulder, one of my arms under her knees. What do I do? With her body? The weight of my impending responsibility struck me in a way it never had in all the years I had spent expecting her to die. At some point over the next twenty-four, forty-eight, seventy-two hours, I was going to have a body to deal with. There are people who do this, I thought, people whose job it is to know what to do, but still I couldn’t get rid of the feeling that I was going to have to carry her body, clean it, dispose of it in some way, and I didn’t know how.

An atavistic fear? Some primal vestige of the days when family members prepared their elders’ bodies for burial, when there was no designated other to do it? No, I had a practical problem to deal with. And, I realized, I had to deal with it right away. My mother had asked to be cremated, and she was Jewish, living in a Jewish nursing home. Jews aren’t supposed to be cremated. Strange little dramas surged in my imagination. I’d have to fight with someone who was trying to take her body away:

“Oh.” The doctor became solicitous, as if explaining the facts of life. “Well, you call a funeral home and you say, ‘My mother has just died.’ You might want to do some research on funeral homes this week. It’s best to actually choose your funeral home, before somebody dies. There’s the Basic Hebrew Burial across the street . . .”

The doctor took a long breath. “There are many families,” she said, “who make the decision to go against their parents’ wishes. After all, it’s you who’ll be living on afterward. I’m not in a position to pressure you into anything, but you don’t have to—you don’t have to do what your mother says.”

I had spent two years taking this doctor’s advice and urging my mother to take it when she wasn’t willing. But now, it was my mother and me against the doctor. When it came to what to do with her body, I knew I had to let my mother make her own rules. And so, when I wasn’t at my mother’s bedside, I gathered information on the telephone. In the end, it turned out to be very simple. There was a large, well-established Jewish funeral home that would pick up her body and hold the funeral, then transfer her somewhere else for the cremation. Apparently, it happens all the time. As the week wore on, friends gathered. My sister called often from her home in Europe. I dug through my mother’s boxes of papers and found her will, her birth certificate, passport, papers for immigration, citizenship, divorce.

The drone of oxygen machines filled the room as I approached my mother’s inert form on the bed. I saw no breathing. I touched my mother’s hand and found it still warm. “I’m here,” I said. She was turned away from me, toward the window, her eyes down, lips pulled away from her teeth, hands clenched inward. Her hands were spirals, seashells: fingers enclosing thumb, following the line of her nails, which curled around the ends of her fingers as if to walk away on their own. For once she did not respond.

I was not sure yet whether the moment of death was approaching or whether it had passed. Were you there? was the question I heard most often afterward. Were you there? (Now, everyone finally admitted it was important.) No, I was not. This week, it had become clear, would be the end, the real end, yet the night before, I had kissed my mother on the forehead at 11 P.M. and gone home to bed.

Tentatively, I passed my hand over my mother’s eyes and cobbled together my best approximation of a Hebrew prayer. She’d better be dead, I thought, not even daring to imagine the stinging mockery that would come my way if she’d heard me. At last a nurse arrived. “Is my mother dead?” I asked her, and she said, “yes,” as if she’d rather spare me the news. I asked her to turn off the oxygen machines.

For the next few hours, I stayed in the room with my mother’s body, waiting for her death to become official. First, the doctor had to sign a death certificate; then, the funeral directors had to take her body away. I paced the room and hummed to myself, trying to feel something spiritual or profound. I felt only blank. One moment after another slipped by as I sat with this lifeless body. In the last fourteen years I had come to believe I would never stop looking after my mother, and so it seemed that these particular, predawn hours would never end. Or they might not, in fact, be happening at all.

I began to feel an ache deep in my belly, in my womb. Here it was, exposed at last: the mystery of our connection. My mother was my child as much as I was hers. I had spent the last fourteen years protecting my mother, doing what she could not do, and now, dead, she could do nothing at all. Now I felt I must be the movement, the speech, the sentience she did not have. I was responsible. I must, at all costs, look after this body. I ranged around the room like a tiger in its cage.

In these empty gray hours I felt the first shreds of separation from my mother. The difference between us was manifest. I was alive; she was dead. At the same time, all boundaries between us seemed to disappear. The presence of death opened a kind of wormhole in which my experience was indistinguishable from hers, and this moment was merged with the moment, forty-three years before, when my mother learned of her own mother’s death. That death was sudden and unexpected, an ocean away. I knew this morning, with a force that almost knocked me backward, how alone my mother must have felt when she got the news. She had no mother to show her child to. No mother to make me—or herself as mother—real. I understood that, all those years when I longed for her to let me go, she had been hanging on in order to protect me from feeling this alone.

As the sky grew marginally lighter, a succession of women began to present themselves at the door before starting their morning shifts. They were the ones who for the past two years had bathed and dressed my mother, combed her hair, fed her, straightened her nightstand and swept under her bed, measured her blood count and oxygen levels, comforted her when she woke in the middle of the night, administered many handfuls of pills. I knew them all by name, but this morning they introduced themselves formally, as if our history together so far had been erased by my mother’s death. Accents of the world were unified by the same hushed, reverent tone of voice.

Sometime later, I became aware of a presence in the doorway and turned to find two enormous men wearing dark suits and stovepipe hats. They were the funeral directors. Dragged from their beds this morning, they had come here through the freezing rain. They stood, sober and silent, at the door, and we stared at one another for a few moments.

“I’m—,” but before I could say, “sorry,” I imagined my mother’s voice behind me: Oh GOD. What riDICulous hats. A giggle rose in my throat. “Excuse me,” I said, covering my mouth, composing my face into an expression that befitted a grieving daughter. Suppressing the laughter made tears come to my eyes.