Just what does coping mean when you’re living with ALS?

My husband, Todd, hasn’t left our home since a dentist appointment last fall, and he hasn’t been to the park or attended an event in years. He doesn’t want to go out — his ALS progression has made being anywhere outside the house too uncomfortable to enjoy. He’s most at ease in his office, set up on his computer.

I understand where he’s coming from. When I’m sick with a bad cold or the flu, there’s no place I’d rather be than home. If I’m feeling icky, I don’t want to go out to eat or take a walk in the park. I want to sleep in my bed or curl up in my recliner and sip tea.

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Todd came up with an analogy to explain how he feels: “If you apply for a job you could have done, it’s disappointing to be passed over. But you’re not disappointed when you don’t get a job you couldn’t do in the first place.”

He said he doesn’t miss going out. He looks back on memories with fondness, but he doesn’t long for those days. “It’s like how I feel about the monkey bars,” he said. “I can think back to the good times I had when I was a kid on the monkey bars, but I don’t miss them.”

In the months after his diagnosis, Todd came to a place of acceptance, much more than I did. And he’s continued to accept his ongoing decline with grace.

And the survey says …

A month ago, I took a mental health quiz from Psychology Today. I waited a couple of weeks and took it again. Both times, I scored a 53 out of 100. In school, that would be a failing grade — but on this quiz, 44-68 is considered “coping.” “They think I’m coping?” I thought when I saw where my score had landed.

Below “coping” are the categories “struggling somewhat” and “struggling.” Above “coping” are “coping well” and “flourishing.”

“Is coping the best one can expect to do in this situation?” I wondered.

I reached out to other spouse caregivers in an online support group. Thirty-five of them took the same quiz. Eighteen also landed in the “coping” range. Ten scored lower and were in the “struggling” category. Six were “coping well.” Just one was “flourishing.”

It’s a tough road we’re walking. I’m “coping” in large part because we have nighttime help, which allows me to get uninterrupted sleep, and because Todd is kind and actively co-parents our children with me. I know that’s not the case for everyone.

I asked Todd to take the quiz, too. He scored an 86, which is at the upper end of “coping well,” just one point shy of “flourishing.” I’m glad he’s able to embrace his life. I’m sure our life would be even harder if he struggled as I do. But seeing that most other spouse caregivers are also just “coping” or “struggling” tells me I’m not alone.

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