“To me, safety was paramount. That came before anything. I had to think of his safety,” she said. Keren Wilson was right about the way the process evolves. Out of love and devotion, Shelley felt she had no choice but to put him where he dreaded.
I pressed her. Why? He had adjusted to where he was. He’d reassembled the pieces of a life—a friend, a routine, some things he still liked to do. It was true that he wasn’t as safe as he would be in a nursing home. He still feared having that big fall and no one finding him before it was too late. But he was happier. And given his druthers, he’d choose the happier place. So why choose differently?
She didn’t know how to answer. She found it hard to fathom any other way. He needed someone to look after him. He wasn’t safe. Was she really supposed to just leave him there?
So this is the way it unfolds. In the absence of what people like my grandfather could count on—a vast extended family constantly on hand to let him make his own choices—our elderly are left with a controlled and supervised institutional existence, a medically designed answer to unfixable problems, a life designed to be safe but empty of anything they care about.
5 ? A Better Life
In 1991, in the tiny town of New Berlin, in upstate New York, a young physician named Bill Thomas performed an experiment. He didn’t really know what he was doing. He was thirty-one years old, less than two years out of family medicine residency, and he had just taken a new job as medical director of Chase Memorial Nursing Home, a facility with eighty severely disabled elderly residents. About half of them were physically disabled; four out of five had Alzheimer’s disease or other forms of cognitive disability.
Up until then Thomas had worked as an emergency physician at a nearby hospital, the near opposite of a nursing home. People arrived in the emergency room with discrete, reparable problems—a broken leg, say, or a cranberry up the nose. If a patient had larger, underlying issues—if, for instance, the broken leg had been caused by dementia—his job was to ignore the issues or send the person somewhere else to deal with them, such as a nursing home. He took this new medical director job as a chance to do something different.
The staff at Chase saw nothing especially problematic about the place, but Thomas with his newcomer’s eyes saw despair in every room. The nursing home depressed him. He wanted to fix it. At first, he tried to fix it the way that, as a doctor, he knew best. Seeing the residents so devoid of spirit and energy, he suspected that some unrecognized condition or improper combination of medicines might be afflicting them. So he set about doing physical examinations of the residents and ordering scans and tests and changing their medications. But, after several weeks of investigations and alterations, he’d accomplished little except driving the medical bills up and making the nursing staff crazy. The nursing director talked to him and told him to back off.
“I was confusing care with treatment,” he told me.
He didn’t give up, though. He came to think the missing ingredient in this nursing home was life itself, and he decided to try an experiment to inject some. The idea he came up with was as mad and na?ve as it was brilliant. That he got the residents and nursing home staff to go along with it was a minor miracle.
But to understand the idea—including how it came about and how he got it off the ground—you have to understand a few things about Bill Thomas. The first thing is that, as a child, Thomas won every sales contest his school had. They’d send the kids off to sell candles or magazines or chocolates door-to-door for the Boy Scouts or a sports team, and he’d invariably come home with the prize for most sales. He also won election as student body president in high school. He was chosen captain of the track team. When he wanted to, he could sell people on almost anything, including himself.
At the same time, he was a terrible student. He had miserable grades and repeated run-ins with his teachers over his failure to do the work they assigned. It wasn’t that he couldn’t do the work. He was a voracious reader and autodidact, the kind of a boy who would teach himself trigonometry so he could build a boat (which he did). He just didn’t care about doing the work his teachers asked for, and he didn’t hesitate to tell them so. Today, we’d diagnose him as having Oppositional Defiant Disorder. In the 1970s, they just thought he was trouble.