Dignity, quality of life, accessibility in assisted living worth a look

Thanks to the The Miami Herald and a few other publications, dangerous conditions in assisted-living facilities have come under a spotlight and inspired some much-needed reforms.

But even well-run, well-appointed facilities have problems that deserve to be recognized. And for that we have Martin Bayne, a 62-year-old publisher, Zen monk, and former journalist who has early-onset Parkinson’s disease.

Bayne’s recent essay about assisted living, published in Health Affairs and reprinted in a condensed version in The Washington Post, is an enlightening, moving account of what it’s like to live in this type of environment.

This author’s voice is calm and direct as he takes readers inside the walls of facilities that shelter people not able to live on their own yet not sick enough for a nursing home. Bayne has resided in two such facilities over the past eight years, after he recognized that living independently was no longer an option.

This clear-headed man thought he understood what he was getting into – “a place where the average levels of disability, depression, dementia, and death were dramatically higher than those in the general population.” But even this sober assessment was mistaken.

What Bayne didn’t anticipate was the emotional toll of his situation – watching friends in assisted living become progressively disabled and die, one after another – which he calls “a sadness beyond words” or a pervasive “ambient despair” that accompanies life under these circumstances.

Nor did Bayne understand the loss of power that moving to assisted living entails. To illustrate that, he describes a meeting he requested with senior management soon after moving into assisted living for the first time:

“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, along, 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.”

If this weren’t enough, there are easily avoidable indignities that make a big difference to Bayne’s quality of life. Doors to the patio outside his room that don’t open wide enough for his wheelchair to get through. A sink in his bathroom that wasn’t set for wheelchair access, making it difficult for him to shave or brush his teeth. The lack of an exercise room or a room for meditation or non-denominational worship.

These aren’t small oversights: They’re another indication that people in charge (in this case, the people who designed and built the institution) don’t really comprehend the needs of residents.

In Health Affairs, Bayne ends his piece with a call for long-term care reforms:

“We need better, more humane places to live in that allow us to preserve whatever health and happiness we have left. We also need to be surrounded with more compassionate, higher-quality, yet still affordable care.”

This is both an individual and a social responsibility, Bayne writes. Members of the media have an important role to play in writing about the “realities of aging” as well as realities of current long-term care arrangements for seniors, he suggests.

Here’s one idea that comes to mind: How many assisted living centers in your area are wheelchair accessible? Think about this in the broadest sense. Do facilities have ramps at their entrances? Are sinks, toilets and showers in the units where residents live easy to use for those in wheelchairs? Are outside areas easily accessible without having to call an attendant and ask for help? Talk to someone at a local independent living center (they serve people with disabilities) and come up with a list of questions to ask. Then go out into your community, survey the lay of the land, talk to residents like Bayne and report what you find.

That could make a good yarn and it would be a real service.