Relearning to be kind to myself as an ALS spouse and caregiver

My frustration brought me to tears today, and I had to take a step back and remember to care for myself in addition to caring for my husband, Todd, who has ALS.

Todd’s new wheelchair was delivered today, and like the one he’s been in for the past 11 years, it’s equipped with an attendant control. When Todd is not able to drive himself, I control his chair using a joystick mounted to the back. But driving the new one was not going well.

On his old chair — just like on our zero-turn lawn mower — when I wanted to turn right, I pushed the joystick to the right. It was intuitive, and driving it had become second nature. But the left-right inputs on the new attendant control are opposite: to go forward and to the right, I have to press the joystick forward and to the left.

After much concentration to drive it, and going slowly to try to reprogram my brain, I was exhausted. Then I had a realization. I don’t need to try to reprogram my brain. The technician can come back to reprogram the new chair.

I was reminded of a podcast I listened to last week in which author Jen Hatmaker talked about what she went through after she found out her husband of 26 years was having an affair and how she dealt with its aftermath. Eventually, a compassionate doctor challenged Hatmaker to accept that we can only take so much so long, “and then at some point you just have to love yourself enough to say, ‘OK, I’ve gotta figure out how to take care of myself.'”

That lesson resonates with me, and it’s one I’ve had to keep relearning the last 15 years as an ALS caregiver.

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Learning and relearning

A decade ago, after two years of sleep deprivation from being up and down with Todd all night, making adjustments so he would be comfortable and sleep, I was at a breaking point. Providing 24-hour care was unsustainable, and I didn’t want my kids to lose two parents to this disease. We couldn’t find an alternating air mattress or bed that helped him enough to sleep independently, so we had to get nighttime help.

After other times of sadness and exhaustion, I learned that spending time in nature calms my nerves and restores my soul. We’ve had beautiful weather these last few days, and I’ve been taking walks down our country road, drinking in the last of summer. I breathe deeply, inhaling the scent of pine trees warmed by the sun. The maples wave their brilliant red leaves to a clear blue sky.

Hatmaker also talks about her tendency to be her own meanest critic, and how moving toward being a good friend to herself has been a slow process. “I am learning to apply the same gentleness, kindness, and generosity that I can pretty easily apply to others. That is not a hard reach for me when it comes to you at all. I am learning how to be that gentle with myself,” she says.

I had a similar realization five years ago when I wrote about what advice I’d give to my old self, the 32-year-old Kristin from 10 years prior, right after her husband was diagnosed. I’d say, “Be kind to yourself, because even though you love your husband and try to translate that love into action, it’s not going to feel like enough. No matter how well you ‘do’ disability and terminal illness, it’s overwhelming. You aren’t going to master this physically, theologically, or emotionally. You’re only human.”

I don’t know why I still think I should be better at this. Why do I think I should be able to get to the other side of grief when I’m in the midst of ongoing loss? Why am I so hard on myself? So, what would a gentle, kind me say to myself today?

“You’ve had 15 years of ongoing loss and grief with more to come. It’s OK to be where you are.”

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