This article originally appeared on March 27th, 2015 on Alzheimers.net. Please click here to read the full article and reader comments.
A Daughter’s Memoir and a Few Thoughts on Healing
After a recent presentation about “Sundown: A Daughter’s Memoir of Alzheimer’s Care,” a member of the audience asked if I had consciously taken notes about my mother’s cognitive deterioration with the intention of writing a book after her death. The question caught me off guard: though I’m a writer and a teacher of writing, I would never have looked at my mother’s illness and thought, “Hey, this could lead to a good opportunity for publication!”
My role as Mom’s caregiver was a source of unrelenting sorrow, stress, frustration and regret – along with gratitude that, of all the parents in the world, fate or luck or chance had given me to my endlessly interesting, loving and complicated mother. If I had any intention from the start at all, it was simply to write down the highest or lowest moments – moments of particular heartbreak or hilarity – in order to share them with my sister when we talked at the end of each day.
No family, no matter how loving, can be prepared for the harsh reality of Alzheimer’s. I have attended a number of funerals recently at which my contemporaries eulogize their parents with the observation that Alzheimer’s causes you to lose a loved one several times over. Believe me, I know what they mean: we lost Mom again and again over a period of nearly ten years. With the grace of hindsight, I now understand that all of our mistakes and missteps, grievances and grief, were weirdly normal: like millions of other families, there was nothing we could do to protect my mother from her unquiet fate. Still, I struggle to forgive myself for everything I could not do as my father found it impossible to continue caring for Mom at home, as we struggled to evaluate medical advice that did not take dementia into account, as Alzheimer’s immersed my kind and vivacious mother in an abyss of delusions and paranoia.
Writing about Alzheimer’s
Women bear a double burden with Alzheimer’s: one in six women in the United States eventually develops the disease (as opposed to one in ten men), and there are strong genetic indicators for who will be afflicted in the next generation; the average caregiver is a woman in her 40′s-50′s who works full-time outside the home. That sentence pretty much sums up my story, so after my mother’s death, I wrote the book that I wish had existed to accompany me on the journey through her last days: a book that could validate my experience as a daughter and caregiver by squarely facing the helplessness and hopes inherent in those roles, by acknowledging the importance of laughter in the face of loss, by encouraging advocacy for loved ones who no longer have a voice, and by illuminating the failures of the American healthcare system to deal with this growing crisis.
Bleak as the statistics are, they bring me back to what sustains me today: because my way of grieving my mother’s death was by writing, her story continues to touch the lives of other families.
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