A Death in the Family

From Vogue magazine
June 2000

I walked down to the lake to call Rosalie up to the house for lunch. That was only two summers ago. She liked to spend the morning swimming and sunning herself on the dock.

"Aren't you going to come inside and have something to eat?"

"I think I'll swim some more," she said. "The water is wonderful."

And I said what everyone said about her, "Rosalie, you'll outlive us all."

At 78, Rosalie Reed, my wife's mother, was famous for her youthfulness. Of hardy Irish-American stock (her older sister Alice is still skiing), Rosalie had added to her resilient frame a Yankee streak of self-reliance, acquired growing up in Albany. She could swim, ski, skate, and dive. She didn't smoke, rarely took a glass of wine--we teased her that year when she got the slightest bit tipsy on New Year's Eve--and went to Mass every Sunday. If any one of us was going to live a long life and die peacefully in bed, it was Rosalie.

When our son was born the following winter, Rosalie moved into our apartment in Tribeca to help with the baby. She rocked him, took him out in the stroller, and even had the BabyBjorn strapped to her, although she seemed uncharacteristically wobbly. An objective observer, seeing her out there on those icy, uneven downtown sidewalks, might have noticed she was too frail for the job, but we saw only the Rosalie we knew, eternally strong and youthful. We would have liked her to stay with us longer, but after three months one of her other children needed Grandmother's help with his kids, and Rosalie moved down to Washington, D.C.

Within a month, we began to hear reports that Rosalie was losing strength in her legs and having trouble climbing stairs. A battery of tests discounted any obvious diagnosis, and during the follow-up consultation the word Rosalie had always dreaded hearing from a doctor-neurologist--was uttered. An appointment was scheduled. In the meantime, Leslie, one of Rosalie's five children, had done some research on-line and had noticed that her mother's symptoms resembled those of amyotrophic lateral sclerosis, also known as Lou Gehrig's disease. Little is known about the causes of ALS, which strikes a surprisingly large number of people--about two of every 100,000 people get it each year. The disease attacks the motor neurons (the nerve cells that operate the muscles) in the brain and the spinal cord. The patient gradually loses the ability to move, then to speak, and finally to breathe. Throughout this ordeal the mind remains clear, alert, and aware that it is slowly being bricked up in useless flesh. ALS is like Alzheimer's backward--it's not the mind but the body that betrays you. There is no cure and no treatment. Younger people may live for ten years or longer, but in older people the progress of the disease tends to be much more rapid.

"It's too early to say," the neurologist responded, a little too quickly, when the family brought up ALS during Rosalie's consultation.

"Well, what's the worst thing it could be?" Rosalie asked.

"ALS."

A brain tumor would have been good news, under the circumstances. At least with a brain tumor you can have an operation, and there is always some hope. With ALS there is no hope. Nothing but death in the most medieval way, with only the comfort of modern painkillers to ease your passing--a benison that Rosalie, tough Yankee to the last, refused.

Over the course of the next couple of months it became more likely that ALS was the clinical diagnosis (only an autopsy can prove ALS for certain). The family decided not to send their mother to a hospital or to a nursing home. The plan was to rotate care: Rosalie would start by spending two months with her oldest son, Mark, in Binghamton, New York; then go for two months with Leslie in Wilton, Connecticut; then spend two months in New York City with us. But the disease moved faster than anyone expected. It was like playing chess against Deep Blue, IBM's grand-master computer--swift and remorseless. Rosalie needed a walker to get around, then a wheelchair, then she lost the strength to sit up straight. Check, said Death. She began to slur her words, then lost control of her vocal cords, and then, with her power of speech and the muscles to write both gone, she could only communicate with her eyes. Check again. We used a transparent chart with letters and major commands printed on it--by holding it up you could guess the letter she was looking at and slowly spell out words that way. But if Rosalie was panicked about something, her eyes tended to jump around too much to make sense.

By the time our turn came--January 1, 2000, a very cold and sober start to the new millennium--I knew as I drove the rented hospital equipment in a U-Haul trailer down from Connecticut that our apartment was where Rosalie would die. Scarcely a year after she had been a second mother to our son, she was like a second infant to us. Two lives headed in opposite directions--one coming and the other going--were temporarily crisscrossing in the relatively cramped confines of our place.

Rosalie slept in the baby's room; the baby moved in with us. Where the crib had been was now a Hoyer lifter, and some other grim-looking pieces of equipment that I had procured from a hospital-supply store on Delancey Street. My wife, Lisa, and her sister Terry dealt with the hardest part of the care, and they did so with the Yankee toughness of their mother. They had some help from home health-care aides who were covered by Rosalie's Medicare. But home health aides do the worst kind of work for low wages, and the ones the agencies sent us usually needed more care than they gave.

We quickly established routines. They made the caregiving easier. Wake baby up and feed baby, whom I monitor as I get breakfast and Lisa goes in to spend some time with her mother; then the long process of giving Mother a bath and getting her in her chair and out to the living room, and transferring her to a mechanical chair, a kind of super-duper La-Z-Boy that could be adjusted both to recline and to tilt forward, making it easier to transfer the patient into a wheelchair. Feeding baby and Rosalie lunch and dinner could take place at the same time, and, for a while, with similar foods, until Rosalie became unable to handle any solid food at all.

But if this practice of conflating birth and death into a single caregiving cycle made the situation easier to manage, it was also very unsettling, because birth and death began to seem like the same thing. There's the waiting. Outside events that formerly seemed so important fade as time shrinks to the scale of the occasion. There's the wondering how you will handle it when the moment comes. There are the rapid stages that one goes through at either extremity: the infant's developing new skills of locomotion and communication, the dying losing them. In T. S. Eliot's poem "Journey of the Magi," the birth of Jesus is described by one of the old wise men who had made the journey to see it. "I had seen birth and death, But had thought they were different; this Birth was Hard and bitter agony for us, like Death, our death."

The bulk of the day was spent watching the baby and Rosalie. (That's another thing the newborn and the dying have in common--someone has to watch them.) At first we thought one person would be able to watch both at the same time, but this soon turned out to be untenable. The baby was crawling now and could stand if he supported himself. Of all the toys in the apartment, the thing that fascinated him the most was Rosalie's mechanical chair, which was controlled by a switch she kept in her lap, though she had lost the strength to use it. Once the baby realized the switch worked the chair, there was no stopping him. Whenever he was loose he would make a beeline for it. One day when I was supposed to be keeping an eye on both of them, I heard Rosalie making her alarm sound, looked around and saw the baby gleefully cranking the chair forward, about to eject his grandmother. After that the baby watched carefully for his opportunity to play this splendid game again.

The baby had been difficult to conceive, and after five years of trying it seemed hopeless. Rosalie prayed hard for us, but she always said she would not pray to Saint Jude, who is the saint of lost causes, because when you pray to Saint Jude he always demands something in return, and that kind of spooked her. Lisa wondered if Rosalie did pray to Saint Jude without telling anyone. Superstition--but Rosalie would have believed it. The doctors told us she probably began feeling the effects of ALS a year or so before we noticed it, which would make the disease just about as old as our son. But if Rosalie did offer to trade her life for the baby's, her secret died with her.

There is no doubt that having a newborn around the house helped get us through the death. I think Rosalie liked having the baby there, too, though I'm not sure. It must have been hard for her to say goodbye, with the certainty that she would never see him again, and having him there, smiling angelically at her, totally unaware of what was happening, probably made it more difficult. Also, as a parent now myself, I thought about our son going through something like this and wondered what the purpose of parenthood was. Perhaps it's better not to be born at all than to get ALS.

Now a year old, the baby was beginning to acquire language. He was making sounds that clearly meant something to him, even if we could not understand them. Rosalie, who had not so long ago been the baby's voice, literally speaking for him when he was crying--"He's saying, 'I'm hungry, Mom' "--now had less language than the baby. He was actually easier to understand because his needs were fewer. Rosalie still wanted to converse, but spelling out even a single sentence could be a fifteen-minute task. It was getting to the point where the policy had to be don't try communicating unless it's essential.

I did not speak to Rosalie directly about her approaching death, though I implied it sometimes. I never formally said goodbye. I kept saying I was going to do it, but then she was going so fast. I regret this, as I knew I would, but I told myself it would have distressed her to hear me talk about the end, and I didn't want to cause her more pain. I thought the best I could do for her was to carry on our relationship more or less as it had been before she got sick.

It was bitterly cold last January. The Hudson River, a small section of which can be seen from our apartment, froze into big ugly gray chunks. Rosalie was refusing to take the morphine that the woman from hospice had left behind, sticking to her conviction that painkillers and antidepressants were a sign of weakness--all that was necessary was Mass and confession. This meant she was awake a lot of the night, kept up by pain and fear. Her daughters went in to her. Birth and death are similar in that way, too: When the pain gets really bad, the women bear it.

After two weeks of intense cold, it warmed up one Saturday evening. The following morning had a slowed-down, hushed quality to it. Rosalie slept a little longer than usual. I made breakfast, and then, after washing the dishes, while the girls went into their two-hour morning routine of getting their mother up, I slipped out to do a little shopping in SoHo. I was gone about half an hour. As I returned I noticed water was flowing out of the drainpipe at the side of the building. I wondered if some ice on the roof was melting. I could hear a fire-engine siren getting closer but paid no attention to it; in the city you hear sirens all the time.

Just as I was about to put my key into the outside door, our downstairs neighbor, the artist Ellen Brooks, burst from the building in wet pajamas, screaming, "Here! Here!" toward the firemen.

"What's the matter?"

"John, there's a flood."

"Where? In your place?"

"No, yours." Then she ran down the sidewalk, calling the firemen. Ellen had a show coming up, and most of her new work was hanging in her studio. Later, she told me that when she saw the water raining down on the art, she remembered a statement of Alberto Giacometti's that is quoted in the film A Man and a Woman: "If I were caught in a fire and I had to choose between a Rembrandt and a cat, I'd save the cat." "I was like, 'There's a dying woman up there, you have to get up and save her; but if I go all my work will be ruined,' " she said.

The flood was the result of a burst sprinkler head right outside Rosalie's room. The water inside had frozen so hard that the ice had cracked the head, and as it warmed the water let go. Inside the room were the motorized hospital bed, the motorized pump for the air mattress, along with numerous cables and wires and batteries and power packs that snaked around the floor. The sisters were worried that the equipment would cause some sort of electrical feedback. ("Mom's going to fry in her bed," Leslie was screaming.) No one knew how to shut the sprinkler valve off. (I did know, but at that point I was deciding between the cashmere sweater and the suede gloves.)

I rushed upstairs, just ahead of the firemen. As I came through the door I saw a torrent of brown water gushing out of a sprinkler head and running under the hospital bed where Rosalie lay. I will never forget that sight. That moment seems like absolute zero in those five weeks, and everything before and after it is ante- and postdiluvian. The flood made sense of it all, somehow. It resolved something. The flood that brings life to the Nile but drowns people as it goes. The flood that wipes away the world and also renews it.

Then the firemen came in. Rosalie saw them and somehow found the strength to communicate a full sentence, the last I ever knew her to express: "The firemen are here." Then she smiled.

Everyone said goodbye, and then we looked at one another. Someone asked, "So now what do we do?" The women suggested bathing Rosalie. The men instinctively thought about calling some sort of authority. Why give her up so fast? the women argued.

We kept her until about seven that evening, when a man named Nicholas Apostle from the funeral home came and took her away in the back of a black Ford station wagon he parked on the sidewalk. And instead of one more person there was one fewer.

Now it is summer again, and we are back at the lake. It is a big, warm family--Rosalie's five kids, their spouses, and eight children, ranging in age from seven months to fifteen years. The ordeal seems like it happened a long time ago--it is hard to believe that only six months have passed. Memories of people dying become a part of history quickly; they seem further away than memories of the living.

Here at the lake, Rosalie has become a kind of household saint. How Rosalie would have been horrified by the state of the kitchen, or how Rosalie would have made the mashed potatoes, is much discussed. Last night we had the Rosalie Memorial Clam Dip.

It's strange: When Rosalie was suffering, it was as if she was already gone--her failing body had so little in common with her vital spirit. But now that she is gone, she's among us again. Maybe I didn't have to say goodbye after all.

Copyright © John Seabrook 2003. All rights reserved

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