Huntington’s Chorea, Dementia, the writing life.
There are years that ask questions and years that answer.
–Zora Neale Hurston
“Cookie.” The words come out in a stammer or, better yet, maybe a sputter.
Because I don’t understand, I offer another spoon of ice cream.
He shakes his head. “No, cookie.”
Like a strong-willed, two-year-old toddler, he knows what he wants. So I give the special cookies he craves every day. Unfortunately, this is no toddler. This is my 61-year-old husband of nearly 38 years of marriage, who, among other ailments, was diagnosed 9 months ago with Huntington’s chorea and dementia.
Over the recent years, I’ve written about everything from my career change from social worker to literary entrepreneur to my sister’s sudden death from lung cancer in February 2008, wherein she died two weeks from the date of diagnosis. Not only have these articles been therapeutic for me, I’ve found an audience who can relate to some of the things I’ve gone through as a human being, as a writer.
Now I have another personal issue to write about. This is about how I’ve had to adjust as a working writer/literary agent while caring for my husband.
After my initial shock, I had to say to myself, Why? How? What? When? I went back at least seven years and saw all the signs that I’d been in denial over. The stumbling gait. The withdrawn behavior. The unexplained fender benders.
Next, I’ve had to readjust my inner barometer to being a caregiver, to dealing with dispensing pills, to having home nurses visits, to driving to hospital visits or sitting all night. I have to adjust my business schedule around my husband’s illness.
To think this was a man who was able to run the mountains at Elysian Park during the LAPD Police Academy while smoking a pack of cigarettes a day. A man who was shot at close range with a 9 mm gun as a police officer and walked back to the locker room before he realized it, since he was in shock. I guess we all break down and we’re all on the same train of mortality.
I guess I’ve had to go through the 5 stages of grief. I don’t know if I’m at the point of acceptance but I don’t feel as twilight zone-someone else’s life besides my own.
Now my routine consists of pureeing food for the dysphasia, (the inability to swallow without choking.) I have to bathe, lotion, dress him like a child. He comes in and out of adulthood at the whimsical notice of a spring rain. In his moments of clarity, I discuss world events, our adult children, my literary business. Sometimes, I think he understands. Others not, because he asks the same questions over and over. “You gon’ pick up my cookies?”
When we shop for his clothes together (something I’ve never had to do before), he’s like a child as he tries on gym shoes and wants everything he can get. “No,” I say firmly.
Some things he intuitively knows are wrong. He used to demand eye drops all day and I thought it was just for the placebo effect, but it turns out he does have pressure in his eye and an ophthalmologist ordered a nightly eye drop meds for it.
As a writer, reading how Anne Lamott wrote about her best girlfriend Pammy’s death from breast cancer in Bird by Bird, Some Instructions on Writing and On Life, I said, I can write about this and maybe it will make sense. It will definitely memorialize my husband. Maybe some other caregiver will be able to make use of it.
This, too, is life.