When we baby boomers get together, I find that the conversation often migrates over to talk consistent with our age and stage in life. Our bodies are no longer taken for granted, as they are with my daughter and other young people we are blessed to know (all in their 20’s and 30’s). High on the list of topics is the frightening specter of Alzheimer’s, which can slowly rob us of our identity. No other organ can fail and strip us of our sense of self like our brains. In a brilliantly written, deeply felt and penetrating piece in the 5/17/15 New York Times Magazine, Robin Marantz Henig tracks the degeneration of Sandy Bem, a woman of unfathomable life force who was diagnosed at the age of 65. Upon presentation with the unalterable diag – and prog-nosis, she made the decision that when she had deteriorated to the point of being completely dependent and unable to “be myself,” she would voluntarily end her own life.
I cannot count the times I have heard friends and comrades in my generation utter with complete assurance that if they were diagnosed with a degenerative dementia, they would choose to end their lives before they reached a certain point of cognitive deterioration. I have known people in my parents’ generation who said the same thing, and who invariably failed to do so. Such a statement is like the thoughts that ease the pain of depression – “I could kill myself.” Yet such thoughts, which promise relief from the pounding, dominating inner pain, are not, in themselves, a plan to suicide. Similar is the, “If I get Alzheimer’s, I’ll…..” statement. Sandy Bem, however, followed through in a thoughtful and very focused manner. The story is one of fortitude, grief, and devotion.
I have never read, in so short a space, a clearer portrait of the unrelenting loss of person-hood. As her time for action on her commitment approached, her husband (from whom she had been separated, but never divorced) was her constant companion. Her adult daughter resisted the decision and wanted one more year – one more month – whatever she could get – for her mother to spend time with her baby. I have a good friend, Don Desonier, who has transitioned from a family lawyer and mediator to a caregiver/coach and family mediator for families struggling with this dark and painful challenge. He was a long-time caregiver for his wife, Nancy, who died two years ago after her losing battle with dementia.
There are many changes that our society will experience in the coming decades. My daughter’s whip-smart boyfriend said over dinner this weekend that the political landscape will be completely different in 20 years. As we have come to accept – actually embrace – same sex unions, I believe we will accept – even embrace – conscious dying, as we struggle as a culture to address the new challenges wrought by longevity and medicine’s maintenance of the physical body. The New York Times essay, together with the most affecting piece I have ever read (in which Katy Butler describes the mental deterioration of her brilliant father who had been a professor at Wesleyan University) are but two of a growing number of personal reflections which wrestle with one of the great personal, familial and cultural challenges of our age.