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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Hanging out in the Alternate World of Nursing Homes

A world exists in the midst of our own that many people are not aware of. It’s a world none of us want to live in, but it’s not so bad to visit. I’m talking about nursing homes, assisted living facilities, memory care centers, whatever you want to call them. Buildings with old people in wheelchairs and walkers, staff in matching shirts, institutional meals and alarms on the doors. The kinds of places where old people land when they can’t stay at home anymore–if they can afford them.

Long before I had family living in these places, I sang in them with the Valley Chorale in California. We didn’t pay much attention to the residents back then. We just wanted to know where to dress, where to set up, and where to plug in our amps. We performed in our silky dresses and jeweled shoes to a sea of white hair and glasses, absorbed their applause, shook a few hands, changed clothes and went out to dinner.

It’s different when someone you love lives there. I started frequenting nursing homes when Grandpa Fagalde started living in one after a series of strokes. He was 94, and it was a shock the first time I saw him in a wheelchair, saying things that didn’t quite make sense. It was easier to sit at the piano and sing than to sit with him for the hour or two I visited at lunchtime or after work. But I came regularly and gradually became part of the family there. I greeted the staff and the other residents. They grabbed for my hands and sought my attention.

Toward the end, my grandfather didn’t know who I was. He knew only that I played music and that I would listen to him for a while. It was heartbreaking to see my grandfather this way, but while I was there, I could forget about my job as a newspaper editor, the errands I need to do on the way home, the teenage stepson who was driving me crazy, or the odd noise coming from under the hood of my car. It was just these old people in their limited world.

I never guessed that fifteen years later I would be visiting my husband Fred in a nursing home. He had Alzheimer’s Disease. He stayed in four different places before he died, but the longest was at Timberwood Court in Albany, Oregon, 70 miles from where I lived. Occasionally I played music there, too, but mostly I hung out with Fred and the gang. We watched TV, ate ice cream, batted a big rubber ball around, sang with visiting musicians, and went on field trips in the little bus. Some days, I would sit on the couch resting my head on my husband’s shoulder, even falling asleep sometimes.

I got to know the names of all the other residents and the family members who visited. I knew the staff. I would walk into the offices to demand things I needed for Fred—a haircut, his lost shoes, a doctor’s appointment. I was part of the Timberwood family. Yes, the residents had dementia. They screamed, they fought, they got sick and died. Some constantly begged to go home. But most made sense at least part of the time, and day after day, it was a beautifully furnished oasis from the rest of the world, unaffected by winter storms, summer heat, or the news on TV.

Beyond the coded-lock door, we were all safe and within shouting distance of an aide who would take care of everything. Fred soon forgot he had ever lived anywhere else. When his physical health failed, he moved to another facility that was not pretty at all. It was much more like a hospital. The hiatus was over.

This year, I found myself hanging out at another nursing home with my father. He wanted only to be back at his own house taking care of his own stuff, but I fell easily into the nursing home rhythm at Somerset. Here’s the living room, the dining room, the courtyard. Here are the aides in matching shirts. Here’s the office. Write Dad’s name on his clothes, hang them in the closet, make sure he has his meds. Get everything set up, then sit with him. Talk, listen, be. Meet the other family members doing the same thing.

Janet, the daughter of one of Dad’s housemates, arrives every day at 11 a.m. and leaves at 4 p.m. It’s like her job. She feels enough at home to go into the kitchen and help herself to coffee and cookies. She joins in the activities. Her sister handles the bills and such, but Janet is the one who has become part of the Somerset family.

It was different for me this time because I live 700 miles away. I visited in concentrated doses. Three days, a week, two weeks. But I got to know and care about the other residents and staff. I liked walking in to a chorus of “Hi, Sue.” I liked that there was someone waiting for me, even on days when my father was El Groucho, as my mother used to call him. While I was at Somerset, I could do nothing about work, home repairs, the needy dog or the emails calling for my attention. All I had to do was sit in the courtyard or the living room talking to my father. When it was time to leave, time to face traffic and take care of business, part of me didn’t want to go.

But of course I had to. These places are only pleasant to hang out in when you have the option of leaving. I didn’t have to eat their food, follow their schedule, or wait an hour for help going to the bathroom. I could walk out on my two strong legs whenever I wanted to. That’s the difference. For the residents, it’s a pretty prison which is eating up their life savings.

Nursing homes are a business where they charge a fortune and often give less than wonderful care. We can only hope our loved ones end up in the good ones. But sometimes since Dad went home, I find myself missing those people and those places where I could just sit and be. Also, I miss the Somerset dog, a white fur ball named Sonny.

When it’s my turn to move in, I hope I can be one of the ones who accept it with grace and smiles. I hope I still have enough working brain cells to make the best of it.