Writing the Alzheimer’s Experience

We are all worried about Covid, but there’s another illness running rampant through the population. More than 6 million Americans have Alzheimer’s disease (AD). One in three of us are likely to experience dementia in old age. Paid long-term care, whether in a facility or at home, costs more than $5,000 a month and is not covered by insurance. Scary? You bet.

As most readers know, my husband Fred died 10 years ago of complications from Alzheimer’s disease. He had started showing symptoms in late 2001, five and a half years after we left Silicon Valley for the good life in on the Oregon coast. It was subtle at first, a missed word here and there, trouble with the TV remote. But eventually I was forced to move him to a series of nursing homes. In the end, he didn’t know where he was or who I was. On his birthday last week, but for Alzheimer’s, he would have been 84.

As a writer, I had to write about it. Gravel Road Ahead, my chapbook released in 2019, shares our journey in poetry form. But I have been working on a prose memoir since the early days of Fred’s illness. It has taken many years, with more than one complete rewrite after I thought it was finished. This summer I embarked on another rewrite, working with an editor who has helped me see new possibilities and forced me to dive deep into the dark days, recreating the scenes with dialogue and details. Last week I finished that revision (for now) and started sending out my proposal and sample chapters to agents and editors.

People who aren’t in the book business keep expecting to see a published book any minute, but it’s a long process. Writing it is just Step One.

One requirement for a nonfiction book proposal is an annotated list of other books on the subject, with a few lines explaining why my book is better/different/worth sharing shelf space with them. As a result, I have read so many books on Alzheimer’s they’re all blurring together in my head. Each one forces me to relive my own experience with Fred and other loved ones.

Here are two I read last week.

Ann Davidson’s Alzheimers: A Love Story: One Year in My Husband’s Journey, published in 1996, is a beautiful love story that takes place in the Bay Area, familiar territory for me. Her husband Julian, a renowned Stanford professor, can no longer read or write or speak intelligibly. He can’t work anymore, but he feels as if he should be doing something. Ann struggles to keep him entertained and safe, but it isn’t easy. Still, there is so much love, and there are joyful moments.

In Susan Straley’s Alzheimer’s Trippin’ with George, one in a series of three books, Straley’s husband has similar problems, but her series of books compiled from her Trippin’ blog is a bit different. She and George are recumbent tricycle enthusiasts, riding alone and with their friends all over the country. Even deep into AD, they continue to ride. When George can’t operate his own trike anymore, they get a tandem one where she provides the muscle and direction. Her patience and strength are incredible. There are grim moments but many laughs, too. You might want to check out Straley’s blog. She’s a lot of fun.

I have more AD books to read, including newish books by Glen Campbell’s wife Kim and Ronald Reagan’s daughter Patti Davis. I’ll let you know how they are.

Check out the AlzAuthors group as well as the Alzheimer’s Association for book lists and more.

So many AD books have already been published, including many offering diets, exercises, and other techniques that allegedly cure or prevent AD (they don’t) and many offering help for caregivers. Does the world need another AD book? I hope so. Mine is about a lot more than Alzheimer’s, and I really want to share Fred’s story, preferably with a publisher who will do it justice. Fingers crossed.

Dementia is awful. I have seen too much of it with my family and friends. If you are going through it, big hugs to you. Let’s pray the latest drug breakthroughs provide relief so that future generations won’t have to worry about it.

Meanwhile, has anyone in your life been diagnosed with Alzheimer’s or another form of dementia? Would you be interested in reading the story of our journey through AD? Please share in the comments.

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Author: Sue Fagalde Lick

writer/musician California native, Oregon resident Author of Freelancing for Newspapers, Shoes Full of Sand, Azorean Dreams, Stories Grandma Never Told, Childless by Marriage, and Up Beaver Creek. Most recently, I have published two poetry chapbooks, Gravel Road Ahead and The Widow at the Piano: Confessions of a Distracted Catholic. I have published hundreds of articles, plus essays, fiction and poetry. I'm also pretty good at singing and playing guitar and piano.

2 thoughts on “Writing the Alzheimer’s Experience”

  1. Hi Sue, I too felt compelled to write an Alzheimer’s story.
    Mine was about my mother’s journey. I wanted to share some of the lighter moments of this dreadful disease. I’d be happy to send you a copy. It’s called
    “Moments this Good, the softer side of Alzheimer’s “.
    Yes, the world needs another book about Alzheimer’s disease.
    Anything to try to help the public understand.
    Keep up the good work.
    Bonnie Nester

    Like

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