End-of-Life Choice, Palliative Care and Counseling

assisted-living facilities

Advocate Fights ‘Ambient Despair’ in Assisted Living

NPR
September 6, 2012

Martin Bayne entered an assisted living facility at 53 after he was diagnosed with young-onset Parkinson’s disease. The disease affected his nerves so severely, it was impossible for him to take a shower and get dressed by himself.

“When I was in my 40s, I was physically fit and very active,” Bayne tells Fresh Air’s Terry Gross. “And to have to give all that up and stay in a wheelchair now and be helped by so many people to do the simplest of things — it takes a little getting used to.”

That was 10 years ago. Bayne has gotten used to getting help in the assisted living facility in Pennsylvania’s Lehigh Valley. He says it allows him to manage his illness and maintain a good quality of life.

But Bayne is unlike most residents in assisted living facilities. They’re often in their 80s and 90s, and move in typically after a traumatic event, Bayne says.

“They just lost a spouse, they have some terrible disease, or they’re in a stage of dementia where they can’t live by themselves,” he says. “And it can be frightening for people at that age to come in and all of a sudden have to deal with all this foreign, new stuff.”

Bayne calls himself an observer-advocate and writes about long-term care reform for the elderly. He has covered the operational issues of some assisted living facilities, including wheelchair inaccessibility and what he described in Health Affairs and later the The Washington Post as “a top-down management team whose initial goal seems to be to strip us of our autonomy.” More