At some point in life, you can’t live on your own anymore. We don’t like thinking about it, but after retirement age, about half of us eventually move into a nursing home, usually around age 80. It remains your most likely final address outside of a hospital.
To the extent that there is much public discussion about this phase of life, it’s about getting more control over our deaths (with living wills and the like). But we don’t much talk about getting more control over our lives in such places. It’s as if we’ve given up on the idea. And that’s a problem.
This week, I visited a woman who just moved into a nursing home. She is 89 years old with congestive heart failure, disabling arthritis, and after a series of falls, little choice but to leave her condominium. Usually, it’s the children who push for a change, but in this case, she was the one who did. “I fell twice in one week, and I told my daughter I don’t belong at home anymore,” she said.
She moved in a month ago. She picked the facility herself. It has excellent ratings, friendly staff, and her daughter lives nearby. She’s glad to be in a safe place — if there’s anything a decent nursing home is built for, it is safety. But she is struggling.
The trouble is — and it’s a possibility we’ve mostly ignored for the very old — she expects 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.” And that is in fact the near-universal reality.
Nursing home priorities are matters like avoiding bedsores and maintaining weight — important goals, but they are means, not ends. She 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 goes to bed, wakes up, dresses, and eats were put under the rigid schedule of institutional life. Her main activities have become bingo, movies, and other forms of group entertainment. Is it any wonder most people dread nursing homes?
The things she misses most, she told me, are her friendships, her privacy, and the purpose in her days. She’s not alone. Surveys of nursing home residents reveal chronic boredom, loneliness, and lack of meaning — results not fundamentally different from prisoners, actually.
Certainly, nursing homes have come a long way from the fire-trap warehouses they used to be. But it seems we’ve settled on a belief that a life of worth and engagement is not possible once you lose independence.
There has been, however, a small band of renegades who disagree. They’ve created alternatives with names like the Green House Project, the Pioneer Network, and the Eden Alternative — all aiming to replace institutions for the disabled elderly with genuine homes. Bill Thomas, for example, is a geriatrician who calls himself a “nursing home abolitionist” and built the first Green Houses in Tupelo, Miss. These are houses for no more than 10 residents, equipped with a kitchen and living room at its center, not a nurse’s station, and personal furnishings. The bedrooms are private. Residents help one another with cooking and other work as they are able. Staff members provide not just nursing care but also mentoring for engaging in daily life, even for Alzheimer’s patients. And the homes meet all federal safety guidelines and work within state-reimbursement levels.
They have been a great success. Dr. Thomas is now building Green Houses in every state in the country with funds from the Robert Wood Johnson Foundation. Such experiments, however, represent only a tiny fraction of the 18,000 nursing homes nationwide.
“The No. 1 problem I see,” Dr. Thomas told me, “is that people believe what we have in old age is as good as we can expect.” As a result, families don’t press nursing homes with hard questions like, “How do you plan to change in the next year?” But we should, if we want to hope for something more than safety in our old age.
“This is my last hurrah,” the woman I met said. “This room is where I’ll die. But it won’t be anytime soon.” And indeed, physically she’s done well. All she needs now is a life worth living for.
