Today, rather than a report on another kind of elder abuse (we'll get to that soon), I want you to know about a remarkable, first-hand account from inside one of the 40,000 long-term care homes in the U.S.
Last month the journal, Health Affairs, published a report from a 62-year-old man who has been a resident in assisted living homes for the past eight years. That sounds young, you say. Yes, but it is due to early-onset Parkinson's disease. He writes:
”[Y]ou’d probably be quite impressed by my current location. It’s remarkably clean and attractive; the food is high quality and abundant; the lawns are manicured. Operationally, it runs smoothly.
“There are, however, a few glaring issues, the foremost being accessibility. Shockingly, most assisted living facilities aren’t completely wheelchair accessible.
“Sure, there are lots of ramps. But in every facility I’ve ever visited or lived in, the bathroom sink isn’t wheelchair accessible. Just try to shave or brush your teeth when the sink is way up there. You can’t.
“Where I live now, I’m on the first floor and fortunate enough to have a beautiful outdoor patio—but my wheelchair is too wide to negotiate the doors, so I can’t wheel myself out onto it.
“Additionally, spaces that residents would like to have access to don’t exist in most facilities. Mine, for instance, has neither an exercise room nor a nondenominational meeting center for meditation or worship.
“These might be seemingly small concerns, yet they have an oversize effect on residents’ quality of life, especially when you consider that most of us can’t leave easily or often.
“But the real problem isn’t operational or structural. It’s emotional.
“Most residents in assisted living facilities, by necessity, live secret lives. On the outside, there might be a calm, even peaceful veneer. But beneath the surface, all of us are susceptible to the ambient despair that is a permanent component of life in this type of facility.”
That despair can take multiple forms. Before moving into an assisted living home eight years ago, Martin Bayne had been a journalist and a Zen monk, and now he is the proprietor of The Feathered Flounder, a blog similar to our own Elder Storytelling Place with stories from people age 60 and older. He writes movingly in his report of the desperate emotional baggage some residents bring with them.
”At four feet, ten inches, and eighty pounds, B could easily get lost in a crowd. And that’s exactly what she did for the first two months after she arrived. B always managed to find a quiet corner to sit - alone, with the paperback she always carried.
“One evening, as I sat outside with my camera, trying to get a few good shots in the fading light, B suddenly appeared in my viewfinder.
“'Can I take your picture?' I asked.
“She seemed to ignore me, her eyes focused intently on her book. Then, seconds later, I heard a voice, not of an eighty-nine-year-old great grandmother, but of a young girl. 'Sure,” she said, “go ahead and take my picture.'
“As night descended, we both sat quietly, absorbed in our own thoughts.
“'He just left me,' said the tiny voice in the darkness.
“'Who just left you?'
“'My son,' B answered. 'One day he showed up at my home in Maine. He said we were going to spend a few weeks together at his place in Pennsylvania. Then -' Her voice trailed off.
“'Then what,' I said softly.
“She paused, and took a deep breath. 'Then he drove me here and left me.'
“I felt as though a great tectonic plate had shifted. 'It’s okay, B, you’re among friends now.'
“She set her book down, and even in the faint light of the new moon, I could see her smile.”
Unlike many long-term care newbies much older than he, Bayne had all his faculties when he moved in along with his history as a journalist. Describing himself as someone who “likes to make sure we all understand one another and communicate well,” he requested a meeting with the management of his first long-term care home.
”The three executives and I met in my room, and the meeting soon turned fractious. I don’t remember exactly what the chair of the housing board said, but I challenged it. 'That’s not fair,' I told him. 'You get to go home every day at five o’clock, but this is my home.
“He stood up, pointed his finger at me, and roared, 'This is NOT your home. You just lease an apartment here like everybody else.'
“I realized right then that the residents of 'their' assisted living facility, among whom I now numbered, didn’t have a voice. Those of us there, and in many other such facilities, arrive in this, our new society, alone, possibly ill, often without the comfort and support of a spouse we’d been married to for decades.
“We eat meals in a dining room filled with strangers and, for perhaps the first time in a half-century, sleep alone in an unfamiliar bed. We then usually find ourselves silenced by, and subjected to, a top-down management team whose initial goal seems to be to strip us of our autonomy. And it is in this environment that most of us will die.”
'NOT your home.' Really?!
It is shocking that even in a clean, attractive place he describes, things as basic as wheelchair access and a properly placed basin are ignored. And it is additionally shocking to me that in all the millions of words I've read on aging over 20 years of research, this is the first “insider” report from the front lines of long-term care I've read.
I urge to read Bayne's entire report at Health Affairs, and good for them for publishing it.
At The Elder Storytelling Place today, Darlene Costner: Men in Black