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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Gravel Road Ahead pre-pub sales begin

Lick_Sue_Fagalde_COV_EMIn last week’s post, I talked about how I became a poet, and I told you about my first poetry chapbook, coming out later this year. This week, “pre-sales” for Gravel Road Ahead begin. Some of you will be receiving postcards in the mail very soon.

I have just gotten my first look at a mockup of the cover photo which will appear on the postcards. It may change a little in the final version, but it’s one more step forward. Thank God I don’t hate it. That’s my photo of one of the places Annie and I go walking. Before Annie, I walked it with Fred and Sadie. The gravel road is hard on shoes and the feet inside them, but worth it for where it takes you.

You’d think once you write the book and get it accepted, you could celebrate with a glass of champagne and relax. Nope. Now it’s time to promote and sell the book. Pre-publication sales are critical. In order to guarantee a full press run, I need to sell 55 copies in advance. I’m hoping my friends will help with this. The price, $14.99, seems a little steep, but if you think about it as paying 50 cents a poem, it’s not bad.

Sorry, it’s not available as an ebook. And it will not be available at Amazon.com until the book is published Oct. 11.

After Gravel Road Ahead is published in October, I will be looking for places to do readings, and I will have copies to sell then, but I would love it if you would pre-order a copy.

Order your copy by sending $14.99 plus $2.99 shipping (check or money order made out to “Finishing Line Press”) to Finishing Line Press, P.O. Box 1626, Georgetown, KY 40324. You can also order online at www.finishinglinepress.com. Here is the direct link to the book. Credit card orders will be processed through PayPal. Preordered copies ship Oct. 11, 2019.

How about this? If you preorder a copy, I will buy you lunch for an equivalent price if you can arrange to be here on the central Oregon coast. Ocean view and everything. I’m serious. Aside from writing poetry, going out to lunch is my favorite thing. And when I can do both at the same time, oh boy, life is good.

And if you don’t want to mess with the publisher, just tell me at sufalick@gmail.com how many copies you want and we’ll worry about payment and deliver later.

Here’s the title poem to whet your appetite:

GRAVEL ROAD AHEAD

Where my husband lives now, I don’t.
Each day he forgets more
details from the house we bought
with his VA loan. I don’t. I tend them,
sort his papers, pay his bills,
dust his antique rolltop desk.

I linger in his swivel chair,
wearing his red plaid shirt, staring
at my small hands peeking out
from frayed cuffs with missing buttons,
toying with his ballpoint pen.

I straighten his paper clips, delaying
my drive up the steep winding road
to where my husband lives now
in a numbered room with an ocean view,
where the pavement ends, and I don’t.

***

Family update: I have just returned from another trip to San Jose. My father moved from a skilled nursing facility to Somerset Senior Living, where he stayed for a few months after he broke his leg in 2017. It’s a very nice and very expensive place, located in a former convent. He’s settling in, still hoping to get back on his feet and resume his independent life. His biggest problem right now, besides not being able to stand up without help, is boredom, so if anyone can call or visit, that would be great. Email or Facebook message me for his address and phone number.

Annie spent a lovely week with the Cramer family while I was gone. She went to work with Sandy and played with David and the kids at home. She was still healing from her surgery for a growth on her leg that turned out to be benign, praise God. She’ll have a gnarly scar, but we’re done with the protective collar and she’s running around like nothing happened.

Have a great week. Help an author. Buy a book.