The Substantial Dark

One night awaits us all.
                                     — Horace

On our first day in Paris my sister, Hope, and I went for an early-morning walk while our eighty-year-old mother was still asleep. Two hours and many charming streets later, we made our way back to the apartment with a bag of warm croissants, never once having thought about the fact that we’d left Mother with only a few French phrases at her disposal, no key, and no way of knowing where we were.

“I could shake your livers!” Mother cried as we opened the door. She never swore; instead she relied on colorful, often outdated expressions. She had a fondness for them, and for words in general. Hope and I grew up understanding that words could transform anything, even hard times. We lived in an unfinished house with a dirt floor, no heat or electricity, and one cold-water tap, but our parents had taught us that we could escape through books and learning. So what if the house was unfinished, our father would ask in his alcohol-fueled expansiveness. We had something far more important than a finished house: we had minds.

Mother, Hope, and I had come to Paris for two weeks on money from a legal settlement: a seventeen-year-old driver had slammed into Mother’s car at a crossroads near her home in Florida. The impact had totaled her vehicle and mangled her wrist, but that now seemed a small price to pay for realizing her lifelong dream of seeing Paris.

Hope and I had worried that Mother might tire easily on the trip, limiting what she could do, but she often outlasted us, walking ahead and calling back to us to hurry. The day we left, while I was loading our luggage into the cab, Hope heard Mother whisper to our father, dead for thirteen years by then, “There, Herbie. You didn’t think I’d ever do it, but I did.”

One windy March day two years later Mother was getting out of her car in a hospital parking lot and fell. A man rushed to her aid and carried her to the emergency room, where an X-ray showed no fracture. When she called me in Berkeley, California, to tell me what had happened, I was struck by the childlike quality of her report: “The wind knocked me down. A man picked me up. Nothing broke.” I attributed this to shock and asked if she needed me to come help her. No, she said; she could manage. But two weeks later she called to tell me it was too hard for her to get around, even with the walker her upstairs neighbor had gotten for her.

I booked a flight to Florida for the next day. When Mother opened the door to her small apartment, I had to keep from gasping. Usually smartly dressed, she wore a stretched-out green cotton sweater and baggy, worn slacks. Her eyes looked milky, their usual brown almost blue. She stood behind her walker like a little girl waiting to be told what to do.

That night I called Hope, who flew down from Vermont the following morning. Mother’s behavior continued to be odd and unsettling. At moments she stared at us as if we were complete strangers. We told ourselves it was the pain medications that caused this, coupled with her new hearing aid, which didn’t fit properly. Several times Mother complained that the device made her feel as if wind were blowing through her head.

We couldn’t leave her alone, so Hope took her home to Vermont and placed her in an assisted-living facility there. Mother hated it. They expected her to play volleyball with a balloon, she told me in disgust over the phone. She’d been captain of a championship volleyball team in her youth, so I understood why she found this insulting, but still I chided her for being negative and refusing to exercise. “Of course you’re in pain,” I said. “You haven’t moved.” Yet her complaints persisted. In late May I flew to Vermont, and Hope and I took her to a different doctor, who discovered that the fall in March had caused hairline fractures in her pelvis.

By August the bone had healed sufficiently for Mother to come to Berkeley and live in the studio apartment that my partner, Michael, and I usually rent to graduate students. When I wasn’t teaching English at two Bay Area community colleges, I took Mother to see doctors. The general practitioner said my mother would live a long time; she had the heart and lungs of a teenager. The otologist said her hearing would continue to diminish. The orthopedist said she needed a leg brace or she would fall again. The neurologist diagnosed Parkinson’s after asking her to write her name and watching her walk across the room. The shuffling gait was a sure sign, as was her tiny, uneven handwriting. Sinemet would relieve the symptoms, the neurologist said, and make it easier for my mother to stand up from chairs and get into bed. She could finally stop sitting in the studio, staring out the window at the squirrels, and waiting for me to come home.

Things did seem to improve, but in February Mother fell again, this time fracturing her hip. Back home after a week in the hospital, she winced with every movement and became petulant in a way she had never been before. Petulant and needy. Her voice shifted into a high, thin whine.

When it was clear she needed more care than I could give, I found her an apartment at an assisted-living facility in Napa, less than an hour’s drive away. Bright and clean, the apartment looked out on a courtyard bordered with roses. I brought Mother to see the place.

“It’s all right,” she said dismissively.

All right? I wanted to shout. You spent thirteen years of your life in a house with no heat, no electricity, no anything, and this is just all right? But instead I told her she would be moving in on the first of the month. On moving day she sat mute beside me in the car, staring straight ahead, as if she were a martyr and the arrows were flying into her.

Summer came and went. Mother became convinced that everyone at her table in the dining room hated her and that the woman in the apartment next door whispered on the phone about her. When I told her she was probably imagining this, she folded her arms and gazed past me.

In late September I asked if she needed anything, and she laughed and said, “Car keys and a way out of here.” I laughed, too, relieved by how normal she seemed. But my laughter stopped when she told me she had seen “that man” in the hall: He was attempting to break in again, she claimed. He wandered all over the place, trying doors.

One rainy day in November Mother and I walked up and down the hall for exercise. I didn’t realize she had stopped until she called to me, “Labor Day is barely gone, and they’re already starting in on Christmas.” She pointed to the faded paper Santas and wreaths taped to the walls and sighed. “It’s worse than kindergarten.”

At such moments it was easy to persuade myself that Mother’s decline wasn’t as bad as it seemed. Maybe I was embellishing her worst symptoms to justify having put her in assisted living. I did feel guilty, especially when I remembered how selflessly she had cared for Hope and me in that unfinished house. She’d come close to placing her own needs before ours only once: when she put on her best dress and saddle-shoe pumps, packed her suitcase, and carried it down the crude staircase and past my father, who was passed out on the sofa. Hope and I ran after her, pleading with her not to leave. When our pleas became shrieks, she turned back.

Mother, who had never taken pills — well, maybe an aspirin once a year — took Sinemet for her Parkinson’s, Paxil for her moods, Relafen for her arthritis pain, and Tylenol when nothing else was working.

She decided she was being slowly poisoned. “As if I’m not dappy enough,” she said, using one of the many neologisms she’d developed. Words were leaving her. Telling me what she’d had for lunch, she couldn’t remember ravioli and called them “those little pasta things that look like wet tea bags.”

The confusion was just a side effect of all the medications, I told myself. The doctors kept changing her dosages. Each time, I wrote the new dosages on a piece of paper, which she kept in her walker pouch, clipped together with every previous slip I’d given her. In the dining room, when the aides brought her pills, she reached for her papers to confirm the dosage. After a few months the paper clip barely held, there had been so many changes, but she refused to throw the old papers away. “You never know,” she would tell me.

My mother hated the leg brace and the hearing aid, both of which she repeatedly hid. Often I found the hearing aid stuffed into the toe of a sock or the cup of a bra balled up at the back of a drawer. She buried the leg brace under a pile of clothing on the closet floor. I never chided her. I was afraid I might upset her, and she’d do something to jeopardize her stay at the facility. Already she’d lost her way to the dining room several times, wandering the halls until an aide spotted her.

“Your mother seems more and more confused,” the director told me one evening. I said it was probably just trouble with her hearing aid.

Words, words, words. They let you deny anything.

I arrived for a visit on a spring afternoon and saw Mother making her way along the sidewalk with her walker. It was the first time she’d been outside in weeks. I called to her, then caught up with her by the wisteria arbor. “Hello!” I said brightly. She looked at me without expression. Three seconds. Ten. When she finally recognized me, she tried to cover her bewilderment with a joke: “Do I know you?”

But I could tell how much not having recognized her own daughter upset her. She gripped the walker, turned it around, and hurried back to her apartment.

No one, I read online, understands why Parkinson’s causes dopamine-producing cells to die off in a region of the brain called the “substantia nigra.” With my limited knowledge of Latin I translated this as the “substantial dark” — a place in my mother’s head where words such as eyebrow, sink, and broccoli had disappeared. But my mother’s neurologist had said the word loss wasn’t Parkinson’s related. When I told a friend this, she said aloud what I’d been thinking for weeks: that it sounded like Alzheimer’s.

I decided to attend a support group for people whose loved ones had Alzheimer’s. The facilitator drew a wavy black line across the whiteboard and wrote, “In and out,” above it. At the beginning, he said, the patient was more in than out of awareness; in the middle stage, more out than in; and in the final stage, out almost all the time.

The other people there had family members well into the third phase. I couldn’t bear to listen to what lay ahead, so I didn’t go back.

Another doctor’s visit. The big toe on my mother’s right foot was inflamed, the pain so severe she could hardly walk. Her doctor said the entire nail was riddled with fungus and would have to be removed. My mother looked frightened and asked, “Are they going to take my leg?”

I held her hand while the doctor efficiently cut away the nail. She kept her eyes shut tight.

“It’s over,” I said. “Look. You still have your leg.” Slowly she opened her eyes, but she wouldn’t let go of my hand.

Home with a bad cold, I called to check on Mother.

“They have some nerve,” she said with indignation, “taking me to the bus station without my checkbook and looking me over like that.” I asked where the bus station was. “You know, down the road.”

I hung up and called the office at the facility. The aides had found my mother slumped over and slurring her words. She’d been rushed to the hospital, where it was determined that she’d had a small stroke. Now she was back in her apartment.

I drove over the speed limit the whole way there. Mother was sitting in her chair, wearing hospital trousers but naked from the waist up, and struggling to put on a bra. “I had to change from that old rag,” she said, nodding at a faded maroon sweater on the floor, a hospital castoff she had borrowed after ruining her pajamas with diarrhea. “I told them I had to go, but nobody listened. So I just went. Were they mad.”

She finished dressing with my help, and we sat looking out the door to the courtyard. Then she said she saw someone sliding down the curtain and “schlooping” back up. I said maybe it was just a trick of light and shadow. “Wouldn’t you think they’d get tired of all that up and down?” she said.

The next morning I drove to Napa early. When I opened the door to Mother’s apartment, the stench made me take a step back. She’d had diarrhea again and hadn’t been able to find the bathroom. The carpet was stained. So were the walls. My mother sat on the bed, staring in horror.

“I didn’t do it!” she said. “Oh, I knew you’d turn on me! You’re just like the rest of them!”

I told her it wasn’t her fault. The antibiotics must have caused it.

I called the front desk for help, and within minutes an aide came to shampoo the rug while I helped my mother bathe. After the rugs and walls were clean and my mother was dressed, she sat on the edge of her bed for me to put on her shoes. “It’s all right,” I said.

Herself for a moment, she leaned over to me and hissed, “Liar!”

Mother and I often joked that politics was our family’s religion. Both she and my father were lifelong Democrats. When I was a child, Mother listened to the Senate subcommittee hearings investigating Senator Joseph McCarthy, a staunch anti-communist. I’d come home from school for lunch, step inside the storm door — there wasn’t an actual door — walk across the shingles my father had laid over the dirt floor, and take my place at the table. Intent on the radio, my mother would make me a peanut-butter-and-lettuce sandwich, her face aflame with indignation. The word scoundrel flew through the air as I ate. If my father was reasonably sober in the evening, all four of us would sit at the table — my parents on actual chairs, Hope and I on wooden nail kegs — and my father would call McCarthy a “bastard” and a “son of a bitch,” even after my mother told him to watch his language.

When my mother lived alone in Florida after my father’s death, I called her every Sunday, and we’d discuss the latest outrages perpetrated by the latest scoundrels. My mother had a sharp tongue and was wickedly funny, and I would sometimes laugh myself speechless as she skewered this or that politician.

But now she peered at the headlines as if they were written in a foreign language. She had stopped doing the crossword months before. One day I asked her why, and she said there was something wrong with her eyes. Often she gave me a look as if she were falling backward from a ledge and I had failed to grab her hand.

I decided to take Mother to a different neurologist. I double-wrapped her in adult diapers and brought a change of clothing just in case the diarrhea struck again. On the drive there, I told her the doctor would probably ask her the date. She tried to remember but couldn’t. “Why can’t I get it?” she cried after the fourth or fifth try.

The neurologist was patient and kind. Mother didn’t know some things but knew others: that she was born in 1914, for example. “It sounds so far away,” she said, and the doctor smiled. He told me her confusion was probably a sign of Alzheimer’s dementia, or AD, but he couldn’t give a definite diagnosis. The only way to know for sure that someone has AD is to examine the patient’s brain tissue. “So what we say,” he explained, “is that a person has ‘probable AD.’ ”

“Can somebody touch your mind?” Mother asked. She was sitting in her chair, folding laundry. The night before, she said, she had heard the man in her bathroom. When she went in, he was huddled in the corner of the tub, without his dog. She’d called out, What are you doing? All he’d said was Nothing. She’d rushed into the hall for help, and some card players had come and walked her back to her apartment. By then the man was gone.

Against everything I’d read and been told, I contradicted her. I said maybe she’d dreamt it. I said of course nobody had been in her bathroom. Nobody had been playing cards in the hallway either.

She shook her head. “I went right along the outside without my talker.” She didn’t hear her mistake.

Later, as I was about to lead her to the dining room for dinner, she couldn’t find her key. She was sure the man had stolen it. I began looking for it while she stood with her arms crossed and said I was wasting my time.

When I found the key in her bathrobe pocket, she shrugged. “I don’t know who put it there. Probably he did. He’s a real sneak.”

The next day the phone rang early. It wasn’t an emergency, an aide said, but I should come as soon as possible: Mother was heavily impacted and had been struggling to move her bowels. She’d tried to dig it out. I arrived to find Mother sitting on a newspaper on the bed, naked from the waist down. I decided to drive her to the emergency room, where, three hours and many unproductive trips to the bathroom later, she was treated and released.

It was late by the time we got back. Mother had no idea where we were. “Who lives here?” she asked as I pulled up to the curb. I helped her out and held her arm as we walked to her apartment. The windows of the building were dark. She stopped and asked fearfully, “Do I have to go to work tomorrow?”

I went inside first and turned on all the lights. Mother inched in, looking frantically about. She didn’t recognize anything, not even the paintings my father had done late in life, after he had stopped drinking and returned to his first love, art. I took Mother’s jacket, talking fast and loud to hide my concern that the darkness she’d been disappearing into had become more substantial.

In late October Michael and I went to Los Angeles for a few days, and when we returned, Mother greeted me with disproportionate joy, as if I’d been gone for months. Minutes later she had such a severe anxiety attack that I called a psychiatrist friend, who said that people with dementia often become anxious when daylight begins to fade; it’s called “sundowning.” He would try to find something to ease her fears and call me back.

After I hung up, Mother seemed calmer, and I changed her adult diapers and walked with her to the dining room. “Are you sure you know where you’re going?” she kept asking.

I seated her at her table. As I was leaving, the director of the facility stopped me in the hall to say that my mother was becoming too confused to stay there much longer. The day before, she hadn’t known what to do with toilet paper. She’d kept ringing for help but couldn’t explain to the aide what she needed. I said yes, yes, she’d just asked me what a closet was for, and instead of a hand towel by her sink, she had put her folded pajama bottoms.

I spoke calmly, as if I were describing someone else’s mother.

My friend the psychiatrist recommended I give Mother Zyprexa, a drug sometimes prescribed for schizophrenia. When I went to fill the prescription, the pharmacist warned me that, although the medication was intended to allay my mother’s anxiety, for some people it did the opposite.

Nevertheless I told Mother that it was a miracle drug; she wouldn’t feel any more anxiety, and her constant need to ring for help would cease. Upon hearing this, she immediately had an anxiety attack. Her head went down; her limbs quaked. She stood up, sat down, stood up, sat down. I got her to the dining room, where she would take the first pill. “Let’s hope it works,” I said to the director, who smiled dubiously and did not say what she was probably thinking: that it was time to find other arrangements for my mother.

That night, just as I was about to get ready for bed, the evening supervisor called to tell me that my mother had gotten out her back door and run into the parking lot in the rain. She’d fallen. They were transporting her to the hospital in Napa.

Worried that her insurance provider wouldn’t cover her stay, I sped through red lights and reached Napa in record time. Mother was asleep. I held her cold hand and called her name. She moaned. When the doctor arrived, I asked if it could have been a reaction to Zyprexa. He shrugged. I asked if he’d done any X-rays. He said he’d given her the “ouch” test, which he found more reliable than any X-ray: “I squeezed here and there. No ouch.” My mother knew her name, he said, and she wasn’t that far off on the date, so he was sending her home. He never even paused to let me speak. I helped Mother up, put on her coat, and got her into the car.

As I led her along the sidewalk in front of her apartment, I had to hold her arm to keep her from running. Yet she whined at me to stop making her walk so fast.

I put her to bed and adjusted her pillow. “It was right the first time,” she complained. “Why do you keep moving it?” But she fell asleep quickly.

An aide came in. It was close to 1 AM. We both stood looking at Mother asleep. Then the aide asked, “What was she like — I mean, before?”

I hope I said she was a wonderful woman — funny, smart, forgiving — but I might have said nothing at all. The question, which the aide had no doubt asked many other residents’ loved ones, stunned me into admitting what I’d been trying to deny: that the mother I’d known was gone. Irrevocably, it seemed.

But the next day she was back. In, out, in — or not entirely in, but close enough. Casting about for a conversation topic, I asked her about the poems she’d recited for Hope and me when we were babies. “The Owl and the Pussy-cat went to sea / In a beautiful pea-green boat,” I began. My mother’s face suddenly appeared lit from within, and she recited all three stanzas flawlessly to the end. I got down from the shelf her worn 1932 edition of The Standard Book of British and American Verse, and for the next hour I turned to poems I thought might be familiar: Blake, Coleridge, and others. If I gave her the first line, she was off, almost singing the rest. I remembered my father’s pride when he talked of taking Mother to meet his family. She was from South Philadelphia — the wrong side of the tracks from his family’s Germantown — so my father’s mother and sisters disapproved of his choice. But when my mother and his father sat trading passages of Shakespeare, the rest of his family had to concede that the young woman’s mind was worthy.

The next morning Mother was struggling to get into her bathrobe. “I’m going crazy,” she said. “I’m not kidding, I’m going crazy.” I said it was probably a side effect of the drug; maybe she’d feel better after it had left her body. “I’d like to leave my body,” she said. I said that didn’t seem to be an option, and maybe she could have a bath instead.

She got up and turned in circles, unable to find the bathroom — “They keep moving everything around” — but once in the tub she was compliant. Afterward she sighed with exasperation while I dried her and helped her into her clothes. Then I got the poetry book from the shelf, hoping she would recite more, but she stared blankly as if she’d never seen the book or me before. When I tried saying a few first lines, she looked scared. I put the book away.

Mother was seeing things more often: people, animals. I said they couldn’t be real or else I’d see them, too.

“You’re not real either,” she said, and she laughed.

I told her she sounded like the Buddha.

“Could be. I’m not your real mother.” She laughed harder. Then a shadow came over her. “Oh, of course I am. Of course.”

Her hand was splotched with bruises from the fall. She touched the small square of gauze a nurse had taped to her left wrist after removing the IV. I was about to tell her to leave it alone when she said, “They were very nice. They took my watch, but they left me a little note.”

Days later another bruise spread like a birthmark under Mother’s eyes, where her glasses had been rammed into her face by the fall. I told her she looked like a raccoon.

“I feel such despair,” she said.

I said nothing.

“I won’t even look in the mirror.”

I told her the bruises would fade. Besides, I added, I had good news: I’d found another place for her to live, closer to Berkeley, so I wouldn’t have to drive back and forth so much. I couldn’t bear to tell her the real reason why she had to move.

She asked where the new place would be. Oakland, I told her.

“Oh, Oakland,” she said. “I’ve heard about that. It’s the going place.”

Mother didn’t last long in Oakland. She grew increasingly confused, and after Christmas she fell again, twisting her hip and developing tendinitis. She spent a week in the hospital, followed by a week in a skilled-nursing facility, where she was deemed unable to follow instructions in therapy: she’d been told to lie on a table and move in certain ways. Later, her voice quivering with indignation, she told me they had tried to make her pose for a beer commercial.

She was moved to custodial care. The neuropsychiatrist who came to evaluate her explained that my mother’s dementia was probably not Alzheimer’s but rather Lewy-body dementia, which advances more rapidly. Mother would hallucinate and be easily frightened by loud voices and brusque treatment, but if she were spoken to softly and praised, she would be mild and docile. It would be best for her to be in a home with few people and an established routine, but there weren’t many such places that would take someone with advanced dementia. I mentioned a residential facility I’d visited the day before, a house for six women in nearby Montclair. The neuropsychiatrist looked skeptical, but then, seeing my desperation, she nodded and said, “It would be wonderful if they’d take her. I hope that they do.”

After meeting Mother, the co-owners of the residential facility said they would accept her; she wasn’t as weak as they’d expected. I moved Mother two days later, at lunchtime, because I’d been told that was a good time for making transitions. She walked in, sat down, and began eating as if she had lived there all her life.

I wish I could say that Mother remained happily at that facility until her death, but she had only enough money to stay for nine months. Then Hope and I were forced to move her to a similar place in Napa, where she repeatedly tried to escape. After two weeks she fell and broke her hip so badly that the surgeon told me it was like a smashed teacup. He predicted she wouldn’t make it through the surgery.

As Mother was being wheeled into the operating room, I bent over the gurney and kissed her. I thought I wouldn’t see her alive again, and I experienced grief and relief both at once. It was like feeling nothing at all, but a nothing that had enormous dimensions: as if my brain had turned to winter, and all I could see was snow.

I tried to imagine what it would be like when the surgeon came and told me she had died. What if I couldn’t cry? I would look heartless. I cried easily over books and movies, but I feared I might not cry at the news of my mother’s death.

The surgeon came into the waiting room, his surgical mask flapping around his neck like a small white bird, and said, “Well, she sailed right through it.”

The recovery wasn’t so easy. She got an infection and had to stay in the hospital for seven weeks. I wore gloves and a mask when I visited. It seemed she would die there. Hope flew out to see her. Again and again we told our seemingly unresponsive mother that it would be all right for her to let go. One night, when Hope repeated this, Mother said, her eyes still closed, “I’m trying very hard to live.”

The infection cleared up, and Hope secured a bed in a highly recommended nursing-and-rehabilitation home. By then Mother weighed sixty-seven pounds. On the day of her admission, the nursing-home director encouraged us to make funeral arrangements because she didn’t think Mother would last beyond the end of the week.

She lived for five more years.

I visited four times a week to make sure she continued to get good care. Friends told me I was visiting too often, but it assuaged the guilt I still felt that she was in a nursing home. She couldn’t do anything but lie in bed or sit in a wheelchair. More than once, one of the aides said to me, “I’d never leave my mother in a place like this.”

At the end words had left her altogether, or so it seemed. The day before she died, an aide was struggling to get a T-shirt over her head, one that had shrunk in the wash. Mother, who had always regarded cursing as a sign of impoverished language, cried out, “Oh, shit!” Those were her last words. They seem entirely fitting.