Friday, March 4, 2016

End game

A few weeks ago I found myself in a funk. One reason was that it was the dead of winter, but that was a bogus reason. What really had me down was that my mind kept drifting toward Alzheimer’s end game, many years from now. Will I still be me—my sense of self intact, however circumscribed—when plaques and tangles have colonized my brain? I was not feeling optimistic. I recalled a visit last year, a couple months before I was diagnosed, to my mom’s assisted-care home. While my mom’s mind remains impressively sharp, an elderly man I encountered clearly was in the late stage of the disease. He seemed to have lost the ability to speak and was struggling to pantomime his meaning to me. We made eye contact, and I nodded encouragingly. I could read his frustration on his face. But then he drifted away, as if he were a shade from the Greek underworld.
Last year, Greg O’Brien, author of the valuable book On Pluto: Inside the Mind of Alzheimer’s, made the decision to forgo treating his stage-three prostate cancer, in favor of dying with his wits intact. Given my overall robust health at 54, with few risk factors for cancer or heart disease, it seems likely that my fate will be severe dementia. In discussing this recently, Paula reminded me that, while Massachusetts narrowly defeated a death-with-dignity measure a few years ago, Washington is one of the few states that have legalized doctor-assisted suicide. There was something comforting about the notion, many years from now, of going back to my beloved home city of Bellingham to die. But there was a catch. The regulations state that the person seeking to die must be “of sound mind.” There appears to be no mechanism to honor one’s wish, made many years before, that the person’s life could be ended once a deep, irreversible level of despondency is reached.
For advice, I reached out to my friend Mike Balchunas, who I met working at a newspaper in Connecticut more than 30 years ago, when I was fresh out of college. Mike was only twenty-eight, but seemed wise beyond his years. Later I learned that from an early age he has endured the chronic intestinal disorder Crohn’s Disease. When he was growing up, his parents were told that Mike would be lucky to live into his twenties. Now he is sixty.
When I emailed Mike last week about my dread of late-stage Alzheimer’s, his response was not what I expected. Rather than endorsing my view that life would not be worth living into the disease’s terminal stage, he challenged it. It appears that dementia runs in Mike’s extended family, and his mother (though she died of complications from a broken hip) had almost no short-term memory capacity when she died. As Mike, who has written about dementia, noted, “After age 80, if my mother put down a cookie, she would not remember whether or not she had taken a bite out of it. Either no consolidation [of what had just happened] was occurring or the retrieval function was mostly wiped out. Yet there were vestiges of more complex memory function that survived longer, such as card-playing ability.”
Mike said it was only in her last year that she needed help playing the card game Shanghai rummy.
“At these card games, there was a shelf near the table with a photo of her extended family, taken around 1945,” Mike said.  “Whenever she noticed it, sometimes several times in the course of a few hours, she would say, ‘What’s that picture of?’ We would take it down and show it to her, and she had no problem identifying by name everyone in it—her mother, father, uncle, aunt, siblings, cousins. She could not remember what she had said or done seconds earlier, or who some of us were, but still had recall of her childhood family members when prompted by the photo.” Other pastimes included watching the Boston Red Sox on TV. (Mike and most of his relatives live in Southern California, but the family’s roots are in Massachusetts.)
By the time Mike’s mother reached eighty, her short-term memory was basically shot. Yet even in her last months, she could appreciate a home run by David Ortiz. But, as Mike put it, by the time Big Papi had rounded first base, Mike’s mom would have forgotten what happened. And yet, she continued to read a daily newspaper.
Mike also passed along an anecdote about his mom and the 2012 presidential election. His mother happened to be watching a debate on TV, and among the candidates was Herman Cain, who is black. Mike’s mom was a liberal Democrat, and when she noticed Cain among the candidates, she commented, “That black guy is running for president?” Mike confirmed that he was, and his mom replied, “Well, he’ll never win. Americans would never vote for a black president.” Mike explained that Barack Obama had been in office for more than three years.
“At times like that,” Mike said, “she would immediately become silent and become depressed.”
Now back to my original question: Will I still be me? Based on Mike’s observations, there is a case to be made that the terminal stage of Alzheimer’s will not be as bad as many of us assume. To maintain some simple pleasures, like sharing time with loved ones and watching sports on TV, might sound like a very circumscribed existence, but it is still an existence, one with much frustration, but also, no doubt, with many fleeting moments of joy.

1 comment:

  1. Thanks for the very thoughtful article, and I find your conclusion comforting. Mike's story reminds me of a lesson I've learned from people in the Alzheimer's and dementia field: there's no point in trying to bring the person with dementia back to reality. It upsets them in the moment, it has no long-term effect (since they'll forget it), and overall, what does it matter?

    I would never condemn someone who's trying his best to take care of his parent with dementia. Instead of telling his mother that we did already have a black man as President, however, I would probably try saying, "Well I certainly hope we won't have THAT black man as President!" and tell her more about Herman Cain. For the moment, she'd feel competent and smart. That's a gift we can give, and I hope if it's my turn, a gift someone can give to me.