How I stimulate my mind while caring for my husband with ALS

After my husband, Todd, got ALS and I became his caregiver, I turned to reading and writing as a way to cope. Reading helps me make sense of life, or sometimes just step outside of my life for a while. Writing helps me sort through what I’m thinking and feeling.

A few years into the disease, I started working on a novel that eventually turned into a trilogy, featuring a character with ALS named Grandma Lou. After finishing the third book in my Copper Island series, I tried to write a fourth, but got stuck.

Todd gave me a mug for my birthday that says, “Writer’s Block: When your imaginary friends stop talking to you.” That about sums up my experience with trying to write fiction over the last few years. When the imaginary world I had created came to a standstill, I missed that creative outlet and started feeling more isolated at home.

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Finding my way back

Around the same time, I went through a dry spell with reading, too. But recently, I found my way back in. A couple weeks ago, I wrote about how Ann Packer’s novel “Some Bright Nowhere” helped me process some of the challenges of being a spouse caregiver. I then went to the library to find another one of her books.

In the fiction section of books by authors starting with “P,” I grabbed another novel by Ann and took it home. The story pulled me in right away. She moved between different points of view, and much of the book was flashbacks. I had to work to figure out what was going on.

I held it up to Todd and started telling him about it and how it was so different from “Some Bright Nowhere.”

“Patchett?” he said. “That’s a different author. The other is Packer.”

I looked down. “Run” by Ann Patchett.

“Oh, well,” I said. “Now I have two new authors to read.”

I didn’t intend to pick it up, but perhaps it was meant to be. Something about the way the story was told — shifting perspectives, moving back through time — felt freeing. It made writing another novel seem a little less intimidating. I thought maybe I’d give a fourth novel another try.

A few nights later, I had a dream I was buying pies from a man who ran a small bakery out of his home. I could see the setting so clearly in my mind and thought the man could be a character in a novel. I told Todd about my dream the next morning as I got him out of bed.

And the next morning, we reminisced about living in Milwaukee and how that year of our life would make a fascinating book. Our next-door neighbor feuded with some of the other neighbors, but he became our friend. He developed lung cancer, and we were with him when he died. Our neighbor across the alley ran an unlicensed barbecue chicken trailer and was continually clashing with health inspectors. He’d often bring us sweet potato pie. We got to know some interesting people who could inspire characters and plotlines.

Being a spouse caregiver can feel isolating, and I have to work to keep my mind stimulated. I don’t know if I’ll be able to make novel No. 4 happen, because writing a book is hard, but I have begun another attempt.

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