*
WE NEEDED OPTIONS, and Athens was not a place where anyone could expect the kinds of options for the frail and aged that I’d seen sprouting in Boston. It is a small town in the foothills of Appalachia. The local college, Ohio University, is its lifeblood. One-third of the county lived in poverty, making ours the poorest county in the state. So it seemed a surprise when I asked around and discovered that even here people were rebelling against the way medicine and institutions take control of their lives in old age.
I spoke, for instance, to Margaret Cohn. She and her husband, Norman, were retired biologists. He had a severe form of arthritis known as ankylosing spondylitis and, because of a tremor and the effects of a polio infection in his youth, he faced increasing difficulty walking. The two of them were becoming concerned about whether they’d be able to manage in their home on their own. They didn’t want to be forced to move in with any of their three children, who were scattered far away. They wanted to stay in the community. But when they looked around town for assisted living options, nothing was remotely acceptable. “I would live in a tent before I would live like that,” she told me.
She and Norman decided to come up with a solution themselves, their age be damned. “We realized, if we didn’t do it, no one was going to do it for us,” she said. Margaret had read an article in the newspaper about Beacon Hill Village, the Boston program that created neighborhood support for the aged to stay in their homes, and she was inspired. The Cohns got a group of friends together, and in 2009 they formed Athens Village on the same model. They calculated that, if they could get seventy-five people to pay four hundred dollars per year, it would be enough to establish the essential services. A hundred people signed up, and Athens Village was under way.
One of the first people they hired was a wonderfully friendly handyman. He was willing to help people with all the mundane household matters that you take for granted when you’re able but that become critical to surviving in your home when you’re not—fixing a broken lock, changing a lightbulb, sorting out what to do about a broken water heater.
“He could do almost anything. People who joined felt the maintenance guy alone was worth the four hundred dollars,” Margaret said.
They also hired a part-time director. She checked up on people and pulled together volunteers who could stop by if the power was out or someone needed a casserole. A local visiting nurse agency provided free office space and a member discount on nursing aide costs. Church and civic organizations provided a daily van transportation service and meals-on-wheels for members who needed it. Bit by bit, Athens Village built services and a community that could ensure that members were not left flailing when their difficulties mounted. It came not a moment too soon for the Cohns. A year after they’d founded it, Margaret took a fall that put her permanently in a wheelchair. Even with both of them disabled and in their mideighties, they were able to make staying at home work.
My parents and I talked about joining Athens Village. The only other option was home hospice care, and I hesitated to raise it. Its mere mention would drag the dark, unspoken subject of dying onto the coffee table between us. Discussing Athens Village let us pretend what my father was going through was just a kind of aging. But I steeled myself and asked whether home hospice was something to consider, as well.
My father, it turned out, was willing to contemplate hospice, my mother less so. “I don’t think it’s necessary,” she said. But my father said that maybe it wasn’t a bad idea to have someone from the agency tell us about it.
The next morning a nurse practitioner from Appalachian Community Hospice stopped by. My mother made some tea, and we sat around our dining table. I will confess to expecting little of the nurse. This wasn’t Boston. The agency was called Appalachian Community Hospice, for God’s sake. The nurse blew me away, though.
“How are you?” she said to my dad. “Do you have a lot of pain?”
“Not right now,” he said.
“Where do you get the pain?”
“In my neck and in my back.”
With that opening, I realized, she had established a few things. She’d made sure he was in a state of mind to talk. She’d made instantly clear that what she cared about was him and how he was doing, not about his disease or his diagnosis. And she’d let us know that, surrounded by a bunch of doctors or not, she knew exactly what she was doing.
She looked to be around fifty, with short, cropped gray hair, a white cotton sweater with an embroidered rose across the front, and a stethoscope sticking out of her bag. She had a local, country accent. And with it, she got right to the point.