I began writing Alzheimer's Daughter shortly after my mom died. Dad lived another year. I kept writing, trying to find resolution. The words on the page became my daily connecting point with my parents. Through my words I felt as though I was able to explain to Mom and Dad what happened to them, as well as the actions my sister and I had to take to keep them safe.
I am the kind of person who reads for support. I read to learn. So, during the path of my parents' disease, I searched for books to help. I found many about the medical science and theories of prevention of Alzheimer's through lifestyle and diet, but there were few personal accounts.
As soon as I'd find a book that looked good, I'd devour it and search Amazon for another using the key word 'Alzheimer's,' looking hundreds of books deep. Many were negative in tone with longstanding strife between elderly parents and adult children, and even greater disagreement between siblings trying to share the caregiving role. I know there are plenty of negatives to this disease, and in Alzheimer's Daughter I write about those challenges honestly, but I needed positives to keep me afloat. So, I wrote Alzheimer's Daughter, combining love with honesty. I wrote what would have helped me.
I've been asked if writing brought peace. I'd like to say yes, but it really didn't. The entire time I wrote I struggled because I felt guilt. Alzheimer's is a private disease. It's hard to talk about.
Right up until the actual moment of pushing the 'publish' button, I felt anguish because I didn't know if I had the right to tell this story.
Peace has come to me through reactions to the book and reviews.
Readers write:
"There are smiles and tears in this tale of ultimate love, that which sees this family through a myriad of very hard choices. This book is worth reading, worth saving, and worth consulting if the unfortunate need arises. There are many books written about Alzheimer's. This one opens the door and let's us in."
"This book offers a deeply personal
glimpse into the life of a family battling Alzheimer’s, from its earliest
stages – the odd forgetfulness, the tiny mistakes – to diagnosis, to denial, to
the debate about safety, and managing simple daily life, to dignity, to end of
life decisions, all told in a thoughtful, useful manner to guide others through
this same process.
Alzheimer’s Daughter is a book
that will bring knowledge and solace to those grappling with this illness."
"Lee’s familiar Alzheimer’s memoir format
is elevated to a classic love story by the revelation of Ed and Ibby Church’s
extraordinary courtship and marriage. World War II lovebirds, the couple’s
timeless love letters are shared at the beginning of each chapter, written
during their separation while Ed served in the Army. This touching
correspondence adds a romantic element to keep the couple’s devotion, for each
other and their family, central to their inevitable fate.
The dual diagnoses and deterioration,
while difficult for Rosie and Annette to manage as caregivers, turns out to be
the final blessing bestowed upon Ed and Ibby for a life well lived. The elderly
couple’s oblivion to their plight helps them fade away together hand in hand,
with neither forced to endure the other’s incapacity.
If I hadn't written Alzheimer's Daughter I would have only shared small parts of this story in hushed tones with those also on this journey. Instead, by releasing the story, I hope it will help others search for light in the darkness, sunshine through the clouds of Alzheimer's.
Wishing peace and calm for those with whom I share a caregiving brotherhood and sisterhood.
Jean
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