What my journals reveal about my journey as an ALS caregiver

Every step of an ALS journey is difficult, but somehow we’re wired with the ability to forget much of the pain and remember the good.

I wrote last week about our current challenge of finding nighttime caregivers. After getting all of the shifts covered, one of our caregivers who had picked up an additional night put in her two-week notice. She got a full-time job, and I’m happy for her, but we’re back to being understaffed. And I’m back to living with low-grade but constant anxiety. I need sleep to cope.

I look back to 2014, before my husband, Todd, lost his ability to sleep independently, and think about how much easier life was. Todd had been using a wheelchair since that spring, but he still had some ability to adjust his position in his chair and in bed. And we could get out of the house to go to church, parks, and restaurants, and we even took family vacations and stayed in hotels.

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But my memory deceives me, because when I read my journals from the summer of 2014, I was stressed then, too. Todd didn’t need nighttime caregivers to turn him at night, but he needed my help getting into bed, and in the middle of the night, he would sometimes wake me to help him use the toilet.

One morning, I was trying to get his personal care done so I could get our daughter to swim lessons on time. Todd was taking his time getting to the bathroom, and I got irritated that he wasn’t helping the morning go smoothly.

He exploded, “Do you think I want this? Do you think I like being a burden to you?”

It turns out he had been helping our 4-year-old spell the word dinosaur, but I didn’t know that.

We both apologized, and I vented in my journal:

“This whole marriage/caregiving thing is difficult. I’m taking over more and more things. I got used to clipping his nails, but then the other night he wanted me to brush his teeth. I brushed them and thought I was done, but then he kept giving orders. Now the other side. Now the inside. Now the outside. On and on. It’s much different than brushing a kid’s teeth, because I brush those until I think they are good and then we are done.”

A few weeks later, I wrote:

“Todd is having trouble transferring from the toilet to his chair. He’s very unsteady on his feet, and I am worried he’s going to fall. Four years of living with chronic stress.”

There are good things in my journal from that time, too. I talk about loving summer and our time at a local park. I wrote down cute things our then-4-year-old said.

It was a mix of good and hard times, as it is today.

This morning, I continued to stress about being short-staffed, but over breakfast, Todd and I worked the New York Times’ puzzles, as we often do. We made it to Genius level on the Spelling Bee, and that always feels like an accomplishment. Most evenings, we watch an episode of the old television series “Person of Interest” while I work out on my elliptical exercise machine. And best of all, our kids are doing well, and they still have their father.

Someday, I will likely look back wistfully on these days.

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