The ongoing turnover of ALS caregivers is challenging to manage

“I feel like crying,” I wrote in my journal after a second caregiver decided to leave in December. “I can do 18 hours a day on duty, but I need to sleep sometimes.”

For a few months, we had had a reliable team of nighttime caregivers for my husband, Todd, who has ALS. But just before Thanksgiving, one of his caregivers gave her two weeks’ notice. And before Christmas, a second caregiver also resigned. Both of them were professional and had been a dependable part of Todd’s care team for years.

I understand the reasons, and I’m not surprised when any caregiver decides to call it quits working nights. I don’t do well with nights myself, which is why we hire people to cover the graveyard shift.

Recommended Reading

June 26, 2025 Columns by Kristin Neva

A well-oiled machine with training and checklists for ALS caregivers

Ever-changing needs

It makes sense to my rational brain that people move on, and yet I still feel helpless when it happens. I’ve felt that again and again over 15 years of my husband’s ALS. We depend on doctors, physical therapists, respiratory therapists, shower aides, and nighttime caregivers, and we have seen people in all of those roles move on. Todd’s care is a job for all of these people, yet we end up building relationships.

When care providers eventually move on, it’s disruptive to Todd’s care routine. We work to fill the gap, but there is grief in losing someone who felt like part of the team that is keeping Todd going.

I didn’t expect I’d be grieving caregivers who move on with their lives when we first faced a terminal disease that came with a two- to five-year life expectancy. But then his progressive illness stretched to 10 years, and then to 15, and a lot of life happens in that space.

“And we just printed Christmas cards!” I told Todd. I held one up and read the back: “‘Todd’s breathing has significantly weakened, which adds to the stress of daily life. However, we do have a good team of night caregivers.’ I’ll have to cross that line out,” I said.

I posted about our need for caregivers on Facebook. A number of people shared my post, and we had an interview with someone who seemed like a great fit. I breathed a sigh of relief and mailed the Christmas cards out unedited. But then, before the new year, that person took a different job. It’s hard to be so dependent on others.

In the end, we were able to cover both nights with current caregivers who were willing to pick up an additional shift. I felt tired from the emotional whiplash — moving from loss to hope, to scrambling again, and back to relief that we have things covered for now.

ALS is a disease with ever-changing needs — new equipment and procedures are regularly required. But another big component of making life with ALS work is managing the ongoing turnover of caregivers.

Note: ALS News Today is strictly a news and information website about the disease. It does not provide medical advice, diagnosis, or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or other qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website. The opinions expressed in this column are not those of ALS News Today or its parent company, Bionews, and are intended to spark discussion about issues pertaining to ALS.