Musings on Alzheimer's Disease

May 21 2015 Published by under Alzheimer's disease, dementia, Uncategorized

Part of what is hard about Alzheimer's is the feeling that it is changing who one is. There was a long article this past Sunday in the NYTimes magazine about Sandy Bem, a psychologist with AD who decided to kill herself. She knew what was going on and had made the decision when she was cognitively intact. The story is powerful, in part because Bem was a powerful person, in part because of the story and in part because of the excellent writing of Robin Marantz Henig.  The story included swathes of her (relevant) life, including this passage which resonated with me:

As a parent in the 1970s, Sandy turned every interaction with her children into a political act. During story time, she would go through their picture books with a bottle of Wite-­Out and a Magic Marker, changing a hero’s name from male to female, revising plot lines, adding long hair or breasts to some of the drawings.

The story is not just about a woman making a hard decision. It is about this woman in the life she lived making a hard decision. Sandy Bem was a professor, and became a clinician late in life. She was a psychologist and knew about cognition and its changes over the lifespan. At times it seems the decision was easy, and then Henig gives us the consequences to family as Bem's disease progresses. One of the quotes from the article that  I found compelling concerned her ex-husband, who became one of her strongest sources of support as she got worse:

“If some devil had asked whether I would be willing to buy Daryl’s deeper self at the cost of my developing dementia,” she wrote, “I would say NO without hesitation. But if it comes free with my unstoppable decline into hell, I’m thankful for the gift.”

This quote is really about Bem, and her acceptance of the changes the disease brought to her. Nobody wants AD, but she was willing to look it in the face and make decisions about what happens next and how to navigate her changed life. Sandy Bem lived a powerful life, making hard choices <cue up quote about making hard choices from Anne Bancroft  in G.I. Jane. As my friend Maye says: there is a quote for every life situation from GI Jane>. The article, to me, was about living (and ending) life on your own terms, by your own choice. That is such a hard thing to do. It is so easy to find blame, but I found not a drop of self-pity in Bem. <cue up 2nd GI Jane quote about self-pity>.

Sandy Bem falls between me and my mother in age. My mother is end stage Alzheimer's and is well beyond the place where Sandy Bem decided to end her life. My mother never could have made the decision that Bem did. She was in absolute denial about things going wrong. My mother was smart and articulate and spent years pretending nothing was wrong. She never would or could have chosen to commit suicide. When intact she would have kept hoping for a cure until it was too late to make the choice that Bem did. And even now, with very little cognitive ability left and her dignity rapidly vanishing, I am not sure that my mother-then would want my mother-now to chose death.

Part of what is hard about Alzheimer's is the feeling that it is changing who one is. I write "my mother-then" with unease. One of my sibs has totally abandoned my mother. He has not seen her in years, does not communicate with me to find out how she is, what she needs, what she was like this week. To him, his mother is dead and gone and there is someone else in her place.

I try to think of this as a continuum. Just as any of us is not the person we were when were 2 let alone 12, my mother is not the person she was at 70 or even 80 when she could have made the choices that Sandy Bem did. There is still a person inside the husk that bears my mother's name. But I am uneasy. I do not know how you judge what this person in front of me wants. I am the one who is making the hard decisions, not the person who the decisions impact. I will try to chose, and to feel no self-pity as I watch my mother disintegrate.


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