(Written Sunday August 23, 2009 about 3am)
I am a little over a third of the way through Sherwin Nuland’s book, How We Die. It is a book of compassion and clinical dispassion all at the same time. Even as he describes his friend’s descent into Alzheimer’s disease and the step by step progression of the disease as his friend, in proportionate amounts, digresses, Nuland maintains a clinical distance that allows room for my own grief and fear to surface and fill in the space.
Tears ran down my face unabashedly as I read about his friend and his friend’s wife’s deep love for one another and how occasionally his friend would come to the surface for a few seconds and tell his wife he loves her. My grief and wonder were woven into this man’s very personal story as I remembered an experience that happened during my grandma White’s last years in a nursing home for Alzheimer’s patients: My Aunt Ronnie got a call from the nursing home one day and they said that grandma was missing. They were out looking for her and I think they even had the police looking. Aunt Ronnie went to my grandpa’s house to tell him, and there they were-napping together. He was asleep in his chair and she was asleep in hers. Across the gap, they were holding hands with the romantic music of snoring.
As I read this chapter (which I’m still not done with-I have had to take a break as this subject speaks to my greatest fears) snippets of conversations and personal experiences engulf me: Deb’s dad asking the same question every two minutes; seeing my grandma being fed like a baby (I was ten); listening to my cousin, Tim, a couple of weeks ago as he related the description of his once strong, beautiful independent mother forgetting how to suck on a straw in her last days (Aunt Ronnie, from the earlier story); feeling that my Aunt Annie had been loved so much by her garden that the bees spared her and her family the agony of the quick descent into oblivion that Alzheimer’s was leading her to.
My aunts’ and my mom’s greatest fears were to disintegrate from the brain down, the way their mother did with Alzheimer’s. That fear has become part of my inheritance, even more enveloping than an heirloom quilt. Reading such a clinical description of the various ways that Alzheimer’s first deludes, then destroys, then kills its victims, without even their knowledge, brings out that heirloom quilt yet once again. Today, it wraps me in its folds like the newborn baby that my grandmother became before she died.
There seems to be disagreement as to whether or not Alzheimer’s is genetic, but they really don’t seem to know much about it at all. However, having lost a grandmother and two Aunts to it (Aunt Annie forgot she was allergic to bees, so with their help, the disease killed her). (My paternal grandmother had a different type of dementia as well.) I can’t help but wonder if I, too, will have to face it one day. My chemo-brain experience gave me an in my face reminder of my fears of dying with the fog of dementia. I can’t help but wonder and fear if the future will make me into someone I’ve never wanted to be-angry, frustrated and forgetful. So, each time I forget a word or yell at Deb for some idiotic imagined slight- somewhere in the back of my mind is the fear that maybe my family’s nemesis is lurking in my brain’s DNA and maybe the chemo I had two years ago already set the wheels in motion. Even though I feel like I’m back to “normal”, whatever that means, I can’t help but think about the fact that people with Alzheimer’s don’t know they have it and believe that they are “normal”. The fear is always lurking…