Being Mortal: Medicine and What Matters in the End (11 page)

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TOM AND SHELLEY
lived comfortably in a modest colonial in North Reading, a Boston suburb, but never completely so. Shelley worked as a personal assistant. Tom had just spent a year and half unemployed after a layoff. Now he worked for a travel company for less than he used to earn. With two teenage children in the house, there was no obvious space for Lou. But Shelley and Tom converted their living room into a bedroom, moving in a bed, an easy chair, Lou’s armoire, and a flat-screen television. The rest of his furniture was sold off or put in storage.

Cohabitation required adjustment. Everyone soon discovered the reasons that generations prefer living apart. Parent and child traded roles, and Lou didn’t like not being the master of his home. He also found himself lonelier than he expected. On their suburban cul-de-sac, he had no company for long stretches of the day and nowhere nearby to walk to—no library or video store or supermarket.

Shelley tried to get him involved in a day program for senior citizens. She took him to a breakfast they had. He didn’t like it one bit. She discovered they made occasional trips to Foxwoods, a casino two hours from Boston. It wasn’t his favorite, but he agreed to go. She was thrilled. She hoped he’d make friends.

She told me, “It felt like I was putting my child on the bus”—which was probably exactly what he disliked about it. “I remember saying, ‘Hi, everyone. This is Lou. This is his first time so I hope you will all be friends with him.’” When he came back, she asked him if he’d made any friends. No, he said. He just gambled by himself.

Gradually, though, he found ways to adapt. Shelley and Tom had a Chinese Shar-Pei named Beijing, and Lou and the dog became devoted companions. She slept on his bed with him at night and sat with him when he read or watched TV. He took her on walks. If she was in his recliner, he’d go get another chair from the kitchen rather than disturb her.

He found human companions, too. He took to greeting the mailman each day, and they became friends. The mailman played cribbage, and he started coming over every Monday to play on his lunch hour. Shelley hired a young man named Dave to spend time with Lou, as well. It was the sort of preengineered playdate that is always doomed to failure, but—go figure—they hit it off. Lou played cribbage with Dave, too, and he came over a couple afternoons a week to hang out.

Lou settled in and imagined that this would be how he’d live out the rest of his days. But while he managed to adjust, Shelley found the situation steadily more impossible. She was working, looking after the home, and worrying about her kids, who had their own struggles as they made their way through high school. And then she had to look after her dear but frighteningly frail and dependent father. It was an enormous burden. The falls, for example, never stopped. He’d be in his room or in the bathroom or getting up from the kitchen table, when he’d suddenly pitch off his feet like a tree falling. In one year, he had four ambulance rides to the emergency room. The doctors stopped his Parkinson’s medication, thinking that might be the culprit. But that only worsened his tremors and made him yet more unsteady on his feet. Eventually, he was diagnosed with postural hypotension—a condition of old age in which the body loses its ability to maintain adequate blood pressure for brain function during changes in position like standing up from sitting. The only thing the doctors could do was to tell Shelley to be more careful with him.

At night, she discovered, Lou had night terrors. He dreamt of war. He’d never been in hand-to-hand combat, but in his dreams an enemy would be attacking him with a sword, stabbing him or chopping his arm off. They were vivid and terrifying. He’d thrash and shout and hit the wall next to him. The family could hear him across the house: “Nooo!” “What do you mean?” “You son of a bitch!”

“We’d never heard him say anything like that before,” Shelley said. He kept the family up many nights.

The demands on Shelley only mounted. At ninety, Lou no longer had the balance and dexterity required to bathe himself. On the advice of a senior services program, Shelley installed bathroom grab bars, a sitting-height toilet, and a shower chair, but they weren’t enough, so she arranged for a home health aide to help with washing and other tasks. But Lou didn’t want showers in the daytime when an aide could help. He wanted baths in the nighttime, which required Shelley’s help. So every day, this became her job, too.

It was the same with changing his clothes when he had wet himself. He had prostate issues, and, although the urologist gave him medicines for it, he still had problems with dribbles and leaks and not making it to the bathroom in time. Shelley tried to get him to wear protective disposable underwear, but he wouldn’t do it. “They’re diapers,” he said.

The burdens were large and small. He didn’t like the food she made for the rest of her family. He never complained. He just wouldn’t eat. So she had to start making separate meals for him. He was hard of hearing and would blast the television in his room at brain-broiling volume. They’d shut his door, but he didn’t like that—the dog couldn’t get in and out. Shelley was ready to throttle him. Eventually, she found wireless earbuds called “TV ears.” Lou hated them, but she made him use them. “They were a lifesaver,” Shelley said. I wasn’t sure if she meant that it was her life that they saved or his.

Taking care of a debilitated, elderly person in our medicalized era is an overwhelming combination of the technological and the custodial. Lou was on numerous medications, which had to be tracked and sorted and refilled. He had a small platoon of specialists he had to visit—at times, nearly weekly—and they were forever scheduling laboratory tests, imaging studies, and visits to other specialists. He had an electronic alert system for falls, which had to be tested monthly. And there was almost no help for Shelley. The burdens for today’s caregiver have actually increased from what they would have been a century ago. Shelley had become a round-the-clock concierge/chauffeur/schedule manager/medication-and-technology troubleshooter, in addition to cook/maid/attendant, not to mention income earner. Last-minute cancellations by health aides and changes in medical appointments played havoc with her performance at work, and everything played havoc with her emotions at home. Just to take an overnight trip with her family, she had to hire someone to stay with Lou, and even then a crisis would scuttle the plans. One time, she went on a Caribbean vacation with her husband and kids but had to return after just three days. Lou needed her.

She felt her sanity slipping. She wanted to be a good daughter. She wanted her father to be safe, and she wanted him to be happy. But she wanted a manageable life, too. One night she asked her husband, should we find a place for him? She felt ashamed just voicing the thought. It’d break her promise to her father.

Tom wasn’t much help. “You’ll manage,” he told her. “How much more time is there?”

Lots, it would turn out. “I was being insensitive to her,” Tom told me, looking back three years later. Shelley was reaching the breaking point.

She had a cousin who ran an elder care organization. He recommended a nurse to come out to assess Lou and talk to him, so that Shelley didn’t have to be the bad guy. The nurse told Lou that given his increased needs, he needed more help than he could get at home. He shouldn’t be so alone through the day, she said.

He looked at Shelley imploringly, and she knew what he was thinking. Couldn’t she just stop working and be there for him? The question felt like a dagger in her chest. Shelley teared up and told him that she couldn’t provide the care he needed—not emotionally and not financially. Reluctantly, he agreed to let her take him to look for a place. It seemed as if, once aging led to debility, it was impossible for anyone to be happy.

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THE PLACE THEY
decided to visit wasn’t a nursing home but an assisted living facility. Today, assisted living is regarded as something of an intermediate station between independent living and life in a nursing home. But when Keren Brown Wilson, one of the originators of the concept, built her first assisted living home for the aged in Oregon in the 1980s, she was trying to create a place that would eliminate the need for nursing homes altogether. She’d wanted to build an alternative, not a halfway station. Wilson believed she could create a place where people like Lou Sanders could live with freedom and autonomy no matter how physically limited they became. She thought that just because you are old and frail, you shouldn’t have to submit to life in an asylum. In her head she had a vision of how to make a better life achievable. And that vision had been formed by the same experiences—of reluctant dependency and agonized responsibility—that Lou and Shelley were grappling with.

The bookish daughter of a West Virginia coal miner and a washerwoman, neither of whom were schooled past eighth grade, Wilson was an unlikely radical. When she was in grade school, her father died. Then, when she was nineteen years old, her mother, Jessie, suffered a devastating stroke. Jessie was just fifty-five years old. The stroke left her permanently paralyzed down one side of her body. She could no longer walk or stand. She couldn’t lift her arm. Her face sagged. Her speech slurred. Although her intelligence and perception were unaffected, she couldn’t bathe herself, cook a meal, manage the toilet, or do her own laundry—let alone any kind of paid work. She needed help. But Wilson was just a college student. She had no income, a tiny apartment she shared with a roommate, and no way to take care of her mother. She had siblings but they were little better equipped. There was nowhere for Jessie but a nursing home. Wilson arranged for one near where she was in college. It seemed a safe and friendly place. But Jessie never stopped asking her daughter to “Take me home.”

“Get me out of here,” she said over and over again.

Wilson became interested in policy for the aged. When she graduated, she got a job working in senior services for the state of Washington. As the years passed, Jessie shifted through a series of nursing homes, near one or another of her children. She didn’t like a single one of those places. Meanwhile, Wilson got married, and her husband, a sociologist, encouraged her to continue with her schooling. She was accepted as a PhD student in gerontology at Portland State University in Oregon. When she told her mother she would be studying the science of aging, Jessie asked her a question that Wilson says changed her life: “Why don’t you do something to help people like me?”

“Her vision was simple,” Wilson wrote later.

She wanted a small place with a little kitchen and a bathroom. It would have her favorite things in it, including her cat, her unfinished projects, her Vicks VapoRub, a coffeepot, and cigarettes. There would be people to help her with the things she couldn’t do without help. In the imaginary place, she would be able to lock her door, control her heat, and have her own furniture. No one would make her get up, turn off her favorite soaps, or ruin her clothes. Nor could anyone throw out her “collection” of back issues and magazines and Goodwill treasures because they were a safety hazard. She could have privacy whenever she wanted, and no one could make her get dressed, take her medicine, or go to activities she did not like. She would be Jessie again, a person living in an apartment instead of a patient in a bed.

Wilson didn’t know what to do when her mother told her these things. Her mother’s desires seemed both reasonable and—according to the rules of the places she’d lived—impossible. Wilson felt badly for the nursing home staff, who worked hard taking care of her mother and were just doing what they were expected to do, and she felt guilty that she couldn’t do more herself. In graduate school, her mother’s uncomfortable question nagged at her. The more she studied and probed, the more convinced she became that nursing homes would not accept anything like what Jessie envisioned. The institutions were designed in every detail for the control of their residents. The fact that this design was supposed to be for their health and safety—for their benefit—made the places only that much more benighted and impervious to change. Wilson decided to try spelling out on paper an alternative that would let frail elderly people maintain as much control over their care as possible, instead of having to let their care control them.

The key word in her mind was
home
. Home is the one place where your own priorities hold sway. At home,
you
decide how you spend your time, how you share your space, and how you manage your possessions. Away from home, you don’t. This loss of freedom was what people like Lou Sanders and Wilson’s mother, Jessie, dreaded.

Wilson and her husband sat at their dining table and began sketching out the features of a new kind of home for the elderly, a place like the one her mother had pined for. Then they tried to get someone to build it and test whether it would work. They approached retirement communities and builders. None were interested. The ideas seemed impractical and absurd. So the couple decided to build the place on their own.

They were two academics who had never attempted anything of the sort. But they learned one step at a time. They worked with an architect to lay out the plans in detail. They went to bank after bank to get a loan. When that did not succeed, they found a private investor who backed them but required them to give up majority ownership and to accept personal liability for failure. They signed the deal. Then the state of Oregon threatened to withhold licensing as senior housing because the plans stipulated that people with disabilities would be living there. Wilson spent several days camped out in one government office after another until she had secured an exemption. Unbelievably, she and her husband cleared every obstacle. And in 1983, their new “living center with assistance” for the elderly—named Park Place—opened in Portland.

By the time it opened, Park Place had become far more than an academic pilot project. It was a major real estate development with 112 units, and they filled up almost immediately. The concept was as appealing as it was radical. Although some of the residents had profound disabilities, none were called patients. They were all simply tenants and were treated as such. They had private apartments with a full bath, kitchen, and a front door that locked (a touch many found particularly hard to imagine). They were allowed to have pets and to choose their own carpeting and furniture. They were given control over temperature settings, food, who came into their home and when. They were just people living in an apartment, Wilson insisted over and over again. But, as elders with advancing disabilities, they were also provided with the sorts of help that my grandfather found so readily with his family all around. There was help with the basics—food, personal care, medications. There was a nurse on-site and tenants had a button for summoning urgent assistance at any time of day or night. There was also help with maintaining a decent quality of life—having company, keeping up their connections in the outside world, continuing the activities they valued most.