FEATURES

A Son's Memoir

Four years after her death, a son reflects on his mother's struggle with Alzheimer's.

January/February 1997

Reading time min

A Son's Memoir

Illustration by Adam Niklewicz

My mother was tough as lobster shell, solid as New England granite, lively as the wind. In her 20s and early 30s, she was a bon vivant and a labor organizer, like my father. Later in life, after they separated, she became a spiritual seeker. She spent two years in the Findhorn New Age community in Scotland and, in her 70s, became a devotee of the Indian avatar Sai Baba. She made two pilgrimages to his ashram, staying several weeks each time, sleeping on a thin mattress on a concrete floor. In 1988, when she was 80, my mother agreed to leave her home on the Maine coast and live with my wife and me in Portland, Ore. She was frail, slowed to a stooped-back shuffle. Her memory was failing. She was frequently disoriented and confused. She lived her last four years with us, and it was to understand those years, their burdens and their blessings, that I wrote Looking After. The story that follows is composed of five excerpts from the book.

I never looked forward to helping my mother with her shower. She wasn't in me shrank from it. To be with her in her nakedness seemed too intimate for a grown son. And some other part of me, the child who wants always to be cared for and never burdened with responsibility, felt put upon and put out. Why was I having to do this? It seemed an indignity, and it touched an open wound. I had no child to bathe, to make faces at, to splash and laugh with. Most likely I never would. What I had was a frail and failing old woman who couldn't take a shower on her own.

Talking her into it was the first challenge. "Oh, I don't need a shower," she would say. "I just had one yesterday, didn't I?"

"You haven't had one for a week."

"But I don't do anything. Why do I need a shower?"

It wasn't only bad memory and lapsing judgment that made her resist, of course. It was also that the shower was strenuous for her, and she didn't want to acknowledge, or couldn't, that she needed help with anything so simple. In her own mind, the mind I believe she inhabited most of the time, she was perfectly capable of taking a shower by herself if she wanted to. In this mind, she was still the woman she had been five years ago, a woman who came and went and drove a car, a woman who lived on her own on the coast of Maine and was only temporarily exiled in a distant place. This woman was honestly perplexed when we bought her a cane and asked her, over and over again, to use it. What need had Zilla Daniel for a cane? Somewhere inside her she was not only an able-bodied woman but still a Sea Scout, climbing the rigging in a bright clear wind.

But in her present mind she knew, whenever she leaned far forward in a chair and tried to stiff-arm herself to her feet, whenever she steadied herself with a hand on the wall as she shuffled to the bathroom, just how incapable she had become. She knew, and she hated it. How could she not have hated it? And if she had to bear it, she didn't want me or my wife, Marilyn, or anyone else to have to help her bear it. She wanted to carry herself on her own stooped shoulders. I can still hear her making her way to the toilet with her left hand pulling her nightgown tight behind her, disgustedly whispering "No, no" to her bladder that could not hold back what it should have held back. As if she were castigating an unbroken puppy, but without the tolerance she would have granted an innocent thing. Standing for any length of time was hard for my mother, and so the shower was a kind of siege. She would grip the soap tray with both hands as I got the water temperature right--"Aaant!" she would holler, "too cold!"--and soaped a washcloth to scrub her sway-spined back. Even the soap met resistance.

"Sai Baba says not to use soap," she informed me early on. "It's just one more thing that has to come off."

"Well, it does come off," I answered, peeling open a bar of Dial. "It rinses off."

"My dear, it leaves a residue. Plain water is enough."

"Mother, for God's sake. This isn't the ashram. You need soap to get clean."

"Yes, Father," she said with a scowl. 

Eventually we worked out a mulish compromise. We used Ivory, which we both agreed was the most natural. I washed her back and buttocks with a soaped washcloth; she held the cloth for a few seconds in the shower spray before washing her front. One hand on the soap tray for support, she briefly swabbed her sagging breasts, her abdomen, the thinly gray-haired pubic region from which I once emerged, and the smooth, still-young skin of her upper thighs. Then I helped her down to the bath stool, where she rested a while and washed her lower legs and feet. The skin of her shins was dry and papery, perpetually blotched with dark purple--not impact bruises but bruises of age.

As I lathered shampoo into her wet white curls, her head would bow from the pressure of my fingers. I'd ask her to hold it up and she would for a second or two, then it would slowly sink again. It must have taken a major effort just to hold herself as upright as she did in her last years. All the while she was slowly bending, slowly folding, curling toward the fetal comfort of the grave.

She squeezed her eyes shut as I rinsed her hair in the shower stream. She scrunched up her face, stuck her lips out, and sputtered through the soapy runoff. It was in that recurring moment of her life with us, her hair flattened to her head, darkened a little with the soaking spray, that I could almost see my mother as a girl--swimming the cold swells off Hancock Park, splashing and laughing, shouting something toward shore, laying into the water with strong, even strokes that would take her where she wanted to go.

She would let me stop rinsing only when she could rub a bit of her hair between finger and thumb and make it squeak. Then I would steady her out of the shower stall, her two hands in mine. It felt at moments like a kind of dance, a dance that maybe I knew how to do and needed to do. Who was that, doing the dance? Who was it who allowed himself those moments of pleasure helping his mother from the shower? When I look back at that scene in the bathroom, I see a boy in my place. A solemn boy with a bit of a smile, a boy attending his mother out of love and duty blended as one. The boy was there, and he was there now and then at other times in those years my mother was with us. He was there when I'd let him be there.

I helped my mother down into a straight-backed chair and left her in the bathroom with towels, clean underwear, and a little space heater to keep her warm. She took her time, as with everything. Often it was half an hour or longer before she emerged in her dressing gown, her hair beginning to fluff, her face smiling. No matter how hard she might have resisted the idea, a bath or shower always seemed to renew her. Soap or no soap, the old woman came forth cleaner of spirit.

"She was pure as the driven snow," she usually quoted, gaily, then a pause: "But she drifted."

I guess I came out of the bathroom cleaner of spirit myself. Soap or no soap, whatever the tenor of our conversation, I appreciate now what a privilege it was to help my mother with her shower. I wish I'd seen it more clearly at the time. We don't get to choose our privileges, and the ones that come to us aren't always the ones we would choose, and each of them is as much burden as joy. But they do come, and it's important to know them for what they are.

One morning as my mother came out of her shower she paused at the bottom of the stairs. I was reading the paper in the living room.

"Do you feel them sprouting?" She said, smiling in her white gown.

"Do I feel what sprouting?"

"Your wings," she said. She stood there, barefooted and bright, smiling right at me and through me, smiling as though she weren't feeble power that saw things I could only glimpse.

"Mother, I don't have wings," I said. 

But she was still smiling as she headed up the stairs, gripping the banister hand over hand, hauling herself up 15 carpeted steps to her room and her bed made of sea-weathered posts and boards, where she would read for a while, gaze out her window at sky and treetops, then drift into sleep.

Marilyn and I tried to find ways to get other people into my mother's life. I took her to the local senior center a few times, but she resisted from the beginning and clearly didn't care for it. She was a misfit among the bingo players and TV watchers. I felt like a parent forcing a reluctant child to attend day camp because it would be good for her. We arranged with a senior outreach program for a volunteer "friend" to come over now and then to visit with my mother. For a few weeks this seemed to please her, but she was well aware of the artificiality of the relationship, and both she and the visitor lost interest after a while. Her most satisfying friendship was with a colleague of Marilyn's, a young Socialist and labor activist, who occasionally took her to breakfast on a weekend. And she did attend her Sai Baba meetings, but only once in a while. When the evening of the meeting arrived she frequently didn't feel up to it. Because of her physical weakness, any outing, even the most pleasant, had a dimension of ordeal.

Worried about her isolation, her listlessness and lack of initiative, in the spring of 1990 Marilyn and I asked a psychiatric social worker who worked for the county mental health service to evaluate my mother. She came twice, asking questions that left my mother slightly but pleasantly bemused--any visitor perked her up. Marilyn and I had suspected that she was depressed, but the social worker thought not. Lonely for sure, somewhat resentful over having been moved from her home and having her car taken from her, but not medically depressed. The social worker thought she had detected something else, though, and referred us to a clinical psychologist.

My mother spent two long sessions in the psychologist's office, performing verbal and visual tests with names like the Pfeiffer Short Portable MSQ, Hooper Visual Organization Test, Porteus Maze, Trail-Making Tests A and B, Wechsler Memory Scale Subtests, Familiar Faces Test, Boston Naming Test, and the Geriatric Depression Scale. She emerged from the sessions fatigued but in a good mood. She liked the psychologist, a warm and sympathetic woman, very much; and the psychologist, like so many who encountered my mother, was instantly and thoroughly taken with her. She was nearly in tears as she told Marilyn and me that the test results pointed clearly to a primary progressive dementia, probably of the Alzheimer's type. Another possibility was multi-infarct dementia, a disease of similar symptoms caused by multiple small strokes. I was standing outside her office, listening through the door, when she explained to my mother what she had found. She paused when she first said "Alzheimer's disease."

"Oh," said my mother, real fear in her voice. "I hope I don't have that."

My mother had been a strong and vibrant woman. It grieved me to see her reduced to a stooped crone who dithered over vegetables at the store, who couldn't remember what she'd read half an hour before, who forgot to take the pills I placed directly in front of her at breakfast. It more than grieved me--it enraged me, and there was no one to be enraged at but her. The psychologist's diagnosis confirmed that she couldn't help the way she was. I knew she was blameless, and yet I blamed her. I hurried her when she couldn't hurry, I was short with her, I cut off conversations as often as she did--because she said something she'd said before, because I was in a rush, because I wanted to get away and do something else, because I was stuck with caring for a feeble old mother and didn't want to be. Because she was what I got for a child. A wizened old child growing the wrong way, growing into senile dementia, growing into death.

There were moments when I wanted her dead. It's hard to write that, but it's true. There were moments when I hated the house, hated Portland, hated my writing and myself and blamed her for all of it. Moments when I felt racked between mother and wife and imagined no relief for years and years. Moments when I felt so trapped I wanted just to keep walking, ankle weights and all, when I wanted to stride back to the '60s and stick out my thumb on I-5, slip down to Swan Island and hide myself on a rusty tanker and sail wherever it took me. There were many evenings I wanted to sling dinner in the sink and sit out back with George Dickel or Jack Daniel or whoever I could find in the liquor cupboard and just not care. Once I left the dinner table to fetch more wine and lay down on the kitchen floor, crying silently to the cutlery clicks and scrapes of my wife and mother eating silently in the next room. And once I burst into my study slamming the door behind me and screamed, "Just die then, die," and sat down sobbing at my desk.

You'd think I'd remember what set me off that time, but I don't. Usually it happened when she said something snappishly ungrateful about the caregiving things I had to do--take her blood pressure, make sure she took her medicines, remind her to use her cane and later her walker. I knew she wasn't ungrateful, and of course she hated all that. Why wouldn't she? Why wouldn't she chafe under the enforcing eye of her all too fatherly son--her son with more than a passing resemblance to her own reverend father? Why wouldn't she hate to take a diuretic when she was already partially incontinent? Why wouldn't she be jealous of the wife I wanted to spend time with? Why wouldn't she be going half crazy from the tedium of her changeless days? She felt as trapped as I did. Once, when she was going through the tests with the psychologist and had recently endured an exhaustive medical assessment--not her idea, of course--she and I had a small fracas over something and she told me, "Just leave me alone and let me die." She only said it once, but there must have been many moments when she felt it.

She was dying, of course. She was declining toward death the whole time she lived with us. If I could have seen that more clearly and accepted it, I could have been a better help to her than the dutiful blood pressure taker and moody cook and conversant I was. You don't get a second chance to live your mother's last years. She dies and it all freezes in place, everything you did and didn't do. I wish I could have been more patient with her, more supple, more willing to follow her lead instead of so often imposing my own will. And I wish I could have provided her with a ritual, a ceremony, some form or path for approaching death by which the troubles and longings of her spirit could have expressed themselves. I wish she could have cried and laughed and worked it all through and come to something, to a final Yes, this is what my life has been, and it's all right.

She couldn't do that, because she didn't have the memory for it. But why do I think she had the need or the desire? Her memory loss, though it vexed and grieved me, didn't seem to disturb her all that much. She knew at least the gist of what was happening to her--she had come from Maine with homeopathic salts to improve her memory--and though sometimes she was impatient with her forgetfulness, by and large she took it with humor and her uniquely eloquent grace. "My memory is so slippery," I remember her exclaiming once. And another time she volunteered, "I'm forgetting everything these days. The only thing I don't forget is the fact that I'm alive!" It was harder for Marilyn and me to take a laughing view, of course, because it was harder for us to live with her and care for her if she didn't remember to use her hearing aid and take her pills, and her lapses could be dangerous. Once, shortly after she moved in with us, we came home from a movie to find the empty steel tea kettle rocking on a red hot burner, my mother sunk into a book in the living room.

But what do I know of what she finally came to, or didn't come to? What do I know of what she experienced most deeply within, what she couldn't or wouldn't speak? She had that photo of her husband smiling at the oars of a boat--the man she had loved in his handsome prime, his brightest mood--and maybe that was enough. There had been much between them that surely she wouldn't have wanted to remember even if she could have, and why did she need to? Why wasn't a difference over dandelions, real or imagined, a sufficient summary of their troubles? And how do I know she didn't come to some similar resting point about the son who had died in her arms, about the other pains of her long life? And if the only resolution was forgetfulness, what's wrong with that? I keep thinking of her Alzheimer's or whatever it was as a robbery, an awful diminishment, but maybe it was a kindness too. Maybe it did for her the necessary work of winnowing the harvest of her life, leaving her a small but ample nourishment as her soul started from the world. Maybe memory loss among the aged is only an overflowing into life of the river Lethe, the water of forgetfulness, the good balm of oblivion in which they and all of us bathe at last.

In geology, I've learned, "senile" refers to a landform or landscape that has been worn away nearly to base level at the end of an erosion cycle. It helps me to look at aging that way. Time wears all of us down, and how well we last depends on what we are made of and what our weather has been. Some persist like fresh granite; some dissolve like limestone in the rain. My mother stood like a crag as she advanced into age, but eroded suddenly toward the end. There are many who slump and slide far more rapidly and drastically than she did, falling utterly from their own lives while still alive, beyond the reach of family and friends. In our boundless scientific optimism, we like to think we will find a preventative or cure for senile dementia, but it may turn out to be as incurable as mortality. Death is not a point in time but a process of time. There are as many ways to die as there are ways to live, and all of them involve the psyche as well as the physical being.

My mother knew in her years with us that her death was near, and, as I'll relate, I have reason to believe she didn't fear it as much as I fear mine. What she did fear, palpably, was something else--not the end of life but any major change in life. I became aware of this in the spring of 1990, shortly after the diagnosis, when Marilyn and I bought a house in a different Portland neighborhood and prepared to move. We hadn't owned a house before, and we were excited. The new place had a ground-floor bedroom and bathroom for my mother, a spacious upstairs for the two of us with a weaving room for Marilyn, and a detached garage I could convert into a writing study. There were birches, pines, and dogwood trees, rhododendrons front and back, and the house was in a quieter part of town than our neighborhood at the time.

Though my mother seemed agreeable enough when we talked about the move, she did wonder aloud why we needed to change homes. What was wrong with the house we lived in? The issue of owning versus renting didn't seem important to her, and--of course--she pooh-poohed the notion that she needed a ground-floor bedroom. But those doubts she voiced formed only the apparent surface of a deeper fear, a fear that became evident one night in the upstairs hallway. I looked up from the book I was reading in the den to see my mother in her white nightgown hovering in the doorway. I don't know how long she had been there. She was deeply agitated, almost in tears. "Remember," she said, her voice breaking, "I need something to hold on to."

I felt a flash of annoyance that she could say something so irrational----we were moving only a few miles, not around the world. But for once I restrained my irritation. I went to her and held her, my arms around her humped back, her thin, bony shoulders against my chest. I tried to comfort her as I might have comforted a child. I told her that she was part of the household, that we were moving together, that I would be there to help her. All the while, I struggled to understand what she had said.

"Mother," I asked her, "what do you need to hold on to?"

"Oh, nothing," she said. "I was only being silly."

"But you weren't being silly. How can I help you if you don't tell me what you're feeling?"

"It's nothing," said my mother, her grayish-green eyes turning away from mine.

One evening in the fall of 1990, when my mother had just read an essay of mine about the limits of our visual perception of nature, she and I were having a drink in the living room. I argue in the essay that nature's chief beauty and value lie not in what we see of it but in what remains hidden and mysterious. It ends with an image of a desert canyon opening itself to a hiker but always withholding its further reaches in mystery.

My mother rarely commented on my work, but this time she had been moved. We had a conversation I think of often, a conversation I'm grateful for. She asked if I knew ahead of time where I was going in my writing, if I had a destination.

"Not usually," I told her. "Or if I do, I only see it in a nearsighted way."

"It's like the canyon?" 

"It's like the canyon."

She seemed happy to hear that, and she seemed to have taken some kind of important inner step on her own journey. There was exaltation in her voice.

"I think we know too much now. And if we don't know everything, we think we do. We need more mysteries."

I asked her if she was afraid of dying.

"Not so much," she answered. "Not so much. I worry more about things I haven't done."

"But you've done so many things . . ."

"Oh, I think of what it would have been like to explore unknown terrain. I think of the explorers . . ."

"I think of them too," I told her. I wish I had told her that she was an explorer. I wish I had told her that I was proud of her. I hope she knew it.

We were silent for a time. We looked out the window at our neighbor's house across the street, glowing softly yellow in the failing October light. A man walked by, limping. Crows were flying among the tall trees of the park. After a while, my mother raised her glass of whiskey.

"Here's to the Unknown!" she said.


John Daniel, Stegner Fellow 1982-83, MA '86, is a poet and essayist living in Oregon. He is the author of two books of poetry, Common Ground (1988) and All Things Touched by Wind (1994). His mother died in 1992.

From Looking After, Counterpoint, 1996. Reprinted with permission.

Trending Stories

  1. Palm Pilots

    The university

  2. 8 Tips for Forgiving Someone Who Hurt You

    Advice & Insights

  3. The Huberman Effect

    Health/Wellness

  4. Should We Abolish the Electoral College?

    Law/Public Policy/Politics

  5. How to Find Your People

    Advice & Insights

You May Also Like

© Stanford University. Stanford, California 94305.