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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Are You Sure There’s Nobody Else at Your House?

I just completed a U.S. Census Bureau test questionnaire. The paper I got in the mail said it was required by law. Online. I don’t know how they expect people who don’t have computers—and some don’t—to get this done. But me, I’d rather take a quiz than work, so I logged in.

It didn’t take long. The first part was frustrating because it didn’t seem to believe me when I said I was the only human living in this house. It kept coming back in different ways. Is there another person living there? Is someone else staying with you? Are you sure there’s nobody else there? Maybe I should look in all the closets and under the beds. Should I count my dog? A quarter of U.S. homes are occupied by one human person. Get with the program, Census.

Other than that, they were obsessed with my nationality. I always stumble over this because I’m white AND Hispanic, not white OR Hispanic. I’m a California hybrid of Portuguese, Spanish, Basque, French, and German. There’s no box to check for that. They also wanted to know if I own or rent my home. Sure, I own it, along with whatever mortgage company is handling my loan this week.

When you think about it, my situation would seem extraordinary to someone from a hundred years ago. A woman living alone in a big house in the woods? No husband? No children? Is she a witch? Should we take her into our home and care for her until she recovers her senses? (senses, census, hah) Who will bring in wood for the fire? Who will pay the bills? Who will protect her from bears, wolves, and bad people? Surely she will be raped, robbed and murdered.

Balderdash. She will eat bagels for breakfast, lunch and dinner if she chooses and play the piano in the middle of the night. She will greet rabbits and robins in the morning and crow back to the neighbor’s rooster. She will sit on her deck and survey her estate and thank God it’s 2019.

The controversial citizenship question did not appear on the version of the census questionnaire that I received. In this test version, some respondents get that question while others don’t. It will be interesting to see whether it shows up on later versions. What do you think? Does the Census need to know one’s citizenship status? Could answering that question be dangerous for those who answer that they are not citizens?

*****

Lick_Sue_Fagalde_COV_EMWe are one week into the advance sales period for my upcoming poetry chapbook, Gravel Road Ahead. This is a collection of poems that follow my journey with Fred through Alzheimer’s disease. Early readers report that they laughed and cried and certain lines have stuck with them. The print run depends on selling enough pre-publication copies. Please click here and order a copy today. My offer from last week stands. If you can get yourself to Lincoln County, Oregon and show that you purchased a pre-pub copy, I will take you out to lunch anywhere from Lincoln City to Yachats for an equivalent price. I’m serious. So click here and start thinking about where you want to eat.

Also, if you want to order directly from me and work out payment and delivery later, just email me at sufalick@gmail.com and let me know how many copies you want me to set aside for you.

P.S. I hate advertising my work. I’d much rather be writing, but this is part of the deal these days. I wonder if Mark Twain ever did this. I just read yesterday in the Writer’s Almanac that Twain was the first writer to submit a typewritten manuscript to his publisher. It was Life on the Mississippi, submitted in 1883. I suppose shortly after the typewriter was patented in 1868, the first “typo” was invented. Followed by the eraser and “Wite-Out.”

Have a great week. Buy my book. Check under the bed for people hiding from the Census.