Wilson spends much of her time back in the West Virginia coal counties around where she was born—places like Boone and Mingo and McDowell. West Virginia has one of the oldest and poorest populations of any state in the country. As in so much of the world, it is a place where the young leave to seek better opportunities and the elderly are left behind. There, in the hollows where she grew up, Wilson is still trying to work out how ordinary people can age without having to choose between neglect and institutionalization. It remains among the most uncomfortable questions we face.
“I want you to know that I still love assisted living,” she said, and she repeated herself: “I love assisted living.” It had created a belief and expectation that there could be something better than a nursing home, she said, and it still does. Nothing that takes off becomes quite what the creator wants it to be. Like a child, it grows, not always in the expected direction. But Wilson continues to find places where her original intention remains alive.
“I love it when assisted living works,” she said.
It’s just that in most places it doesn’t.
*
FOR LOU SANDERS, it didn’t. Shelley felt lucky to find an assisted living facility near her home that would accept him with his meager finances. His savings were almost gone, and most other places expected upfront payments of hundreds of thousands of dollars. The home she found for Lou received government subsidies that made it affordable. It had a lovely porch, fresh paint, plenty of light in the lobby, a pretty library, and reasonably spacious apartments. It seemed inviting and professional. Shelley liked it from the first visit. But Lou resisted. He looked around and saw not a single person without a walker.
“I’ll be the only one on my own two feet,” he said. “It’s not for me.” They went back home.
Not long after, however, he had yet another fall. He went down hard in a parking lot, and his head took a sickening bounce on the asphalt. He didn’t come to for a while. He was admitted to the hospital for observation. After that, he accepted that things had changed. He let Shelley put him on the waiting list for the assisted living facility. An opening came up just before his ninety-second birthday. If he didn’t take the spot, they told him, he’d go to the bottom of the list. His hand was forced.
After the move, he wasn’t angry with Shelley. But she might have found anger easier to deal with. He was just depressed, and what is a child to do about that?
Some of the problem, Shelley felt, was just the difficulty of dealing with change. At his age, Lou didn’t do well with change. But she sensed that there was more to it than that. Lou looked lost. He didn’t know a soul, and there was hardly another male to be found. He would look around thinking, What is a guy like me doing stuck in a place like this—with its bead-making workshops, cupcake-decorating afternoons, and crummy, Danielle Steel–filled library? Where was his family, or his friend the mailman, or Beijing, his beloved dog? He didn’t belong. Shelley asked the activities director if she would plan a few activities that were more gender appropriate, maybe start a book club. But bah, like that was going to help.
What bothered Shelley most was how little curiosity the staff members seemed to have about what Lou cared about in his life and what he had been forced to forfeit. They didn’t even recognize their ignorance in this regard. They might have called the service they provided assisted living, but no one seemed to think it was their job to actually assist him with living—to figure out how to sustain the connections and joys that most mattered to him. Their attitude seemed to result from incomprehension rather than cruelty, but, as Tolstoy would have said, what’s the difference in the end?
Lou and Shelley worked out a compromise. She would bring him home every Sunday through Tuesday. That let him have something to look forward to each week and helped her feel better, too. At least, he’d have a couple days a week of the life he’d enjoyed.
I asked Wilson why assisted living so often fell short. She saw several reasons. First, to genuinely help people with living “is harder to do than to talk about” and it’s difficult to make caregivers think about what it really entails. She gave the example of helping a person dress. Ideally, you let people do what they can themselves, thus maintaining their capabilities and sense of independence. But, she said, “Dressing somebody is easier than letting them dress themselves. It takes less time. It’s less aggravation.” So unless supporting people’s capabilities is made a priority, the staff ends up dressing people like they’re rag dolls. Gradually, that’s how everything begins to go. The tasks come to matter more than the people.