Martin Bayne, former reporter and Zen monk, longtime culture change advocate and friend of Dr. Bill Thomas, has been catapulted onto the national stage after publishing a gut-wrenching account of life in assisted living and nursing homes where he has lived the past decade after being diagnosed with young-onset Parkinsons at age 53.
Martin’s story was published this summer in Health Affairs and the The Washington Post and last week NPR’s Terry Gross interviewed him on Fresh Air. As an observer-advocate, Martin’s writing exposes the loss of identity and control that is emblematic of living in institutions which he described as being operated by “a top-down management team whose initial goal seems to be to strip us of our autonomy.”
Martin’s unique perspective has allowed him to be an observer and voice for his fellow residents, the vast majority of whom are over the age of 80 and typically suffering form the shock of a traumatic loss or illness that precipitated their move to assisted living. He poignantly notes that the real problem people face in assisted living is not infirmity or illness, but coping emotionally with the change.
“Most residents show a calm, even peaceful veneer,” he wrote. “But beneath the surface, all of us are susceptible to the ambient despair that is a permanent component of life in assisted living. It’s the result of years of loneliness and isolation.”
I can’t encourage readers strongly enough to read Martin’s articles, listen to his interview with Terry Gross and subscribe to his blog The Voice of Aging Boomers. He is by far one of America’s leading voices for ChangingAging. Just check out this passage from his latest blog post:
To discover the absurd irony in many of these cases, ask yourself: What would happen to the parent, grandparent, sister etc. if they WEREN’T transferred into a facility.
Why they would die, of course. At home. In their own bed.
And that’s when you realize how preposterous this dynamic really is:
(1) We transfer people to a facility to add a few more years of boredom, isolation and unhappiness to their lives before they die, because WE are AFRAID of death.
(2) The cost of medical care and custodial care during the last year of this “extended” life is bankrupting families, individual states and our country. FEAR is essential in this equation. But ask yourself, Who is it that’s really afraid to die? The answer might surprise you.
(3) Stop meddling with God. People “know” how do die. It’s instinctive. Most are not afraid when their time comes. Leave them alone. Let nature and the Eternal take them Home.
I’ve been honored to get to know Martin this summer and learn about his ongoing efforts to transform Assisted Living from the inside out by empowering residents. He is developing a new framework for a more therapeutic Assisted Living that is grounded in the immutable truth that aging and death are a natural part of life and love and compassion are the most powerful forces in life. His framework is based on principles and interventions that are person-centered and put the needs and desires of residents first. I look forward to learning more about this from Martin in the future.