Being Mortal: Medicine and What Matters in the End (10 page)

All privacy and control were gone. She was put in hospital clothes most of the time. She woke when they told her, bathed and dressed when they told her, ate when they told her. She lived with whomever they said she had to. There was a succession of roommates, never chosen with her input and all with cognitive impairments. Some were quiet. One kept her up at night. She felt incarcerated, like she was in prison for being old.

The sociologist Erving Goffman noted the likeness between prisons and nursing homes half a century ago in his book
Asylums
. They were, along with military training camps, orphanages, and mental hospitals, “total institutions”—places largely cut off from wider society. “A basic social arrangement in modern society is that the individual tends to sleep, play, and work in different places, with different co-participants, under different authorities, and without an over-all rational plan,” he wrote. By contrast, total institutions break down the barriers separating our spheres of life in specific ways that he enumerated:

First, all aspects of life are conducted in the same place and under the same central authority. Second, each phase of the member’s daily activity is carried on in the immediate company of a large batch of others, all of whom are treated alike and required to do the same thing together. Third, all phases of the day’s activities are tightly scheduled, with one activity leading at a prearranged time into the next, the whole sequence of activities being imposed from above by a system of explicit formal rulings and a body of officials. Finally, the various enforced activities are brought together into a single plan purportedly designed to fulfill the official aims of the institution.

In a nursing home, the official aim of the institution is caring, but the idea of caring that had evolved didn’t bear any meaningful resemblance to what Alice would call living. She was hardly alone in feeling this way. I once met an eighty-nine-year-old woman who had, of her own volition, checked herself into a Boston nursing home. Usually, it’s the children who push for a change, but in this case she was the one who did. She had congestive heart failure, disabling arthritis, and after a series of falls she felt she had little choice but to leave her condominium in Delray Beach, Florida. “I fell twice in one week, and I told my daughter I don’t belong at home anymore,” she said.

She picked the facility herself. It had excellent ratings and nice staff, and her daughter lived nearby. She had moved in the month before I met her. She told me she was glad to be in a safe place—if there’s anything a decent nursing home is built for, it is safety. But she was wretchedly unhappy.

The trouble was that she expected more from life than safety. “I know I can’t do what I used to,” she said, “but this feels like a hospital, not a home.”

It is a near-universal reality. Nursing home priorities are matters like avoiding bedsores and maintaining residents’ weight—important medical goals, to be sure, but they are means, not ends. The woman had left an airy apartment she furnished herself for a small beige hospital-like room with a stranger for a roommate. Her belongings were stripped down to what she could fit into the one cupboard and shelf they gave her. Basic matters, like when she went to bed, woke up, dressed, and ate, were subject to the rigid schedule of institutional life. She couldn’t have her own furniture or a cocktail before dinner, because it wasn’t safe.

There was so much more she felt she could do in her life. “I want to be helpful, play a role,” she said. She used to make her own jewelry, volunteer at the library. Now, her main activities were bingo, DVD movies, and other forms of passive group entertainment. The things she missed most, she told me, were her friendships, privacy, and a purpose to her days. Nursing homes have come a long way from the firetrap warehouses of neglect they used to be. But it seems we’ve succumbed to a belief that, once you lose your physical independence, a life of worth and freedom is simply not possible.

The elderly themselves have not completely succumbed, however. Many resist. In every nursing home and assisted living facility, battles rage over the priorities and values people are supposed to live by. Some, like Alice, resist mainly through noncooperation—refusing the scheduled activities or medications. They are the ones we call “feisty.” It’s a favorite word for the aged. Outside a nursing home, we usually apply the adjective with a degree of admiration. We like the tenacious, sometimes cantankerous ways in which the Harry Trumans of the world assert themselves. But inside, when we say someone is feisty, we mean it in a less complimentary way. Nursing home staff like, and approve of, residents who are “fighters” and show “dignity and self-esteem”—until these traits interfere with the staff’s priorities for them. Then they are “feisty.”

Talk to the staff members and you will hear about the daily skirmishes. A woman calls for help to the bathroom “every five minutes.” So they put her on a set schedule, taking her to the bathroom once every couple hours, when it fits into their rounds. But she doesn’t go according to schedule, instead wetting her bed ten minutes after a bathroom trip. So now they put her in a diaper. Another resident refuses to use his walker and takes unauthorized, unaccompanied walks. A third sneaks cigarettes and alcohol.

Food is the Hundred Years’ War. A woman with severe Parkinson’s disease keeps violating her pureed diet restriction, stealing food from other residents that could cause her to choke. A man with Alzheimer’s disease hoards snacks in his room, violating house rules. A diabetic is found eating clandestine sugar cookies and pudding, knocking his blood sugar levels off his target. Who knew you could rebel just by eating a cookie?

In the horrible places, the battle for control escalates until you get tied down or locked into your Geri-chair or chemically subdued with psychotropic medications. In the nice ones, a staff member cracks a joke, wags an affectionate finger, and takes your brownie stash away. In almost none does anyone sit down with you and try to figure out what living a life really means to you under the circumstances, let alone help you make a home where that life becomes possible.

This is the consequence of a society that faces the final phase of the human life cycle by trying not to think about it. We end up with institutions that address any number of societal goals—from freeing up hospital beds to taking burdens off families’ hands to coping with poverty among the elderly—but never the goal that matters to the people who reside in them: how to make life worth living when we’re weak and frail and can’t fend for ourselves anymore.

*   *   *

ONE DAY WHEN
Jim visited Alice, she whispered something in his ear. It was winter 1994, a few weeks after her hip fracture and admission to the skilled nursing unit and two years since she’d begun living at Longwood House. He’d wheeled her from her room for a stroll around the complex. They found a comfortable place in the lobby and stopped to sit for a while. They were both quiet people, and they’d been content to sit there silently, watching people come and go. That was when she leaned toward him in her wheelchair. She whispered just two words.

“I’m ready,” she said.

He looked at her. She looked at him. And he understood. She was ready to die.

“Okay, Mom,” Jim said.

It saddened him. He wasn’t sure what to do about it. But not long afterward, the two of them arranged for a Do Not Resuscitate order to be put on record at the nursing home. If her heart or her breathing stopped, they would not attempt to rescue her from death. They would not do chest compressions or shock her or put a breathing tube down her throat. They would let her go.

Months passed. She waited and endured. One April night, she developed abdominal pains. She mentioned them briefly to a nurse, then decided to say nothing more. Later, she vomited blood. She alerted no one. She didn’t press the call button or say anything to her roommate. She stayed in bed, silent. The next morning, when the aides came to wake the residents on her floor, they found she was gone.

4
• Assistance

You’d think people would have rebelled. You’d think we would have burned the nursing homes to the ground. We haven’t, though, because we find it hard to believe that anything better is possible for when we are so weakened and frail that managing without help is no longer feasible. We haven’t had the imagination for it.

In the main, the family has remained the primary alternative. Your chances of avoiding the nursing home are directly related to the number of children you have, and, according to what little research has been done, having at least one daughter seems to be crucial to the amount of help you will receive. But our greater longevity has coincided with the increased dependence of families on dual incomes, with results that are painful and unhappy for all involved.

Lou Sanders was eighty-eight years old when he and his daughter, Shelley, were confronted with a difficult decision about the future. Up to that point he had managed well. He’d never demanded much from life beyond a few modest pleasures and the company of family and friends. The son of Russian-speaking Jewish immigrants from Ukraine, he’d grown up in Dorchester, a working-class neighborhood in Boston. In World War II, he served in the air force in the South Pacific, and after returning he married and settled in Lawrence, an industrial town outside Boston. He and his wife, Ruth, had a son and a daughter, and he went into the appliance business with a brother-in-law. Lou was able to buy the family a three-bedroom house in a nice neighborhood and give his children college educations. He and Ruth encountered their share of life’s troubles. Their son, for instance, had serious problems with drugs, alcohol, and money and proved to have bipolar disorder. In his forties, he committed suicide. And the appliance business, which had done well for years, went belly-up when the chain stores came along. At fifty years old, Lou found himself having to start over. Nonetheless, despite his age, lack of experience, and lack of a college education, he was given a new chance as an electronic technician at Raytheon and ended up spending the remainder of his career there. He retired at sixty-seven, having worked the additional two years to get 3 percent extra on his Raytheon pension.

Meanwhile, Ruth developed health issues. A lifelong smoker, she was diagnosed with lung cancer, survived it, and kept smoking (which Lou couldn’t understand). Three years after Lou retired, she had a stroke that she never wholly recovered from. She became increasingly dependent on him—for transportation, for shopping, for managing the house, for everything. Then she developed a lump under her arm, and a biopsy revealed metastatic cancer. She died in October 1994, at the age of seventy-three. Lou, at seventy-six, became a widower.

Shelley worried for him. She didn’t know how he would get along without Ruth. Caring for Ruth through her decline, however, had forced him to learn to fend for himself, and, although he mourned, he gradually found that he didn’t mind being on his own. For the next decade, he led a happy, satisfying life. He had a simple routine. He rose early in the morning, fixed himself breakfast, and read the newspaper. He’d take a walk, buy his groceries for the day at the supermarket, and come home to make his lunch. Later in the afternoon, he would go to the town library. It was pretty, light-filled, and quiet, and he’d spend a couple hours reading his favorite magazines and newspapers or burrowing into a thriller. Returning home, he’d read a book he’d checked out or watch a movie or listen to music. A couple of nights a week, he’d play cribbage with one of his neighbors in the building.

“My father developed really interesting friendships,” Shelley said. “He could make friends with anyone.”

One of Lou’s new companions was an Iranian clerk at a video store in town where Lou often stopped in. The clerk, named Bob, was in his twenties. Lou would perch on a bar stool that Bob set up by the counter for him, and the two of them—the young Iranian and the old Jew—could hang out for hours. They became such good pals that they even traveled to Las Vegas together once. Lou loved going to casinos and made trips with an assortment of friends.

Then, in 2003, at the age of eighty-five, he had a heart attack. He proved lucky. An ambulance sped him to the hospital, and the doctors were able to stent open his blocked coronary artery in time. After a couple weeks in a cardiac rehabilitation center, it was as if nothing had happened at all. Three years later, however, he had his first fall—that harbinger of unstoppable trouble. Shelley noticed that he had developed a tremor, and a neurologist diagnosed him with Parkinson’s disease. Medications controlled the symptoms, but he also began having trouble with his memory. Shelley observed that when he told a long story he sometimes lost the thread of what he was saying. Other times, he seemed confused about something they’d just spoken about. Most of the time he seemed fine, even exceptional for a man of eighty-eight years. He still drove. He still beat everyone at cribbage. He still looked after his home and managed his finances by himself. But then he had another bad fall, and it scared him. He suddenly felt the weight of all the changes that had been accumulating. He told Shelley he was afraid he might fall one day, hit his head, and die. It wasn’t dying that scared him, he said, but the possibility of dying alone.

She asked him what he would think about looking at retirement homes. He wanted no part of it. He’d seen friends in those sorts of places.

“They’re full of old people,” he said. It was not the way he wanted to live. He made Shelley promise to never put him in such a place.

Still, he could no longer manage on his own. The only choice left for him was to move in with her and her family. So that’s what Shelley arranged for him to do.

I asked her and her husband, Tom, how they had felt about this. Good, they both said. “I didn’t feel comfortable with him living independently anymore,” Shelley said, and Tom agreed. Lou’d had a heart attack. He was going on ninety. This was the least they could do for him. And, they admitted thinking, how long were they really going to have with him, anyway?