The Challenges of Hiring Nighttime ALS Caregivers

“It’s just one night. It’ll be fine,” my husband, Todd, said after his night caregiver contacted me late one evening to explain she was dealing with a family emergency. Todd is paralyzed from ALS and needs to be turned and have his limbs adjusted throughout the night. It was too late to find a sub. I tried to calm my anxiety.

I brushed Todd’s teeth, washed his face, and put him in bed. I tried to go to sleep myself, but I couldn’t relax. “I’ll be able to sleep tomorrow night. I’ll be fine. Everyone has a bad night of sleep now and then,” I thought. The self-talk only helped a little. I slept lightly and woke up often, not knowing when Todd would next call for help. Neither of us slept well that night.

An occasional night of poor sleep shouldn’t be such a big deal, but my body still remembers the years of sleep deprivation I endured before we started getting regular nighttime help. I was near my breaking point.

I purchased various alternating pressure mattresses and toppers for Todd to try, but none of them worked, and we didn’t want him to take medications that would depress his breathing. We needed the help of other people to take a six-hour shift at night, so I could get a stretch of uninterrupted sleep and be functional to care for him and our kids for the remaining 18 hours each day.

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Sleep is a basic need for physical and mental health, but it can be hard to come by for those of us with spouses who need 24-hour care. In the United States, little caregiving help is covered by Medicare or most insurance plans, so people need volunteers or they must pay out of pocket. And it’s costly. Thankfully, we have friends and family who help fund Todd’s night care. But even with adequate funding, it’s difficult to find people willing to work a night shift.

None of our three local home health agencies have staff willing to work nights, so we need to find people on our own and pay them directly. We use Savvy Nanny to run payroll, and apart from the complexity of setting it up, it makes payroll easy.

We try to keep a full roster of people, each working only one or two nights a week and available to substitute if somebody is sick or needs time off. We hire nurses, certified nursing assistants (CNAs), and even college students without medical training but with a heart for helping people. We have an overhead lift that keeps the work light, except for the effort needed to turn Todd from side to side. The hardest part of the job is to stay up at night and recover the following day.

I understand why it’s difficult to find help because I don’t want to work the night shift, either.

A few weeks ago, one of our caregivers gave us notice that she could no longer work one night a week. She’d started a full-time job that demands too much for her to stay on as a regular caregiver for Todd.

I put out the word on social media that we were looking for help. A few Facebook friends shared my post, and I got one person interested — a college student who will be moving to the area later this month. Until then, I’ve filled some of the open night shifts with our other caregivers. I’m hopeful that she’ll come for an interview and be a good fit. I’ll feel a big sense of relief if we can get regular coverage for that night.

And then another caregiver told me she needed to drop from two nights a week to just one. She was having trouble napping before her shifts, and it was too difficult to recover the next day and stay awake for her day job.

For the first time, I posted our need on a public site, responding to a thread on a local Facebook group inquiring where CNAs might find jobs in the area. I was excited that three CNAs expressed interest — but none followed through in coming to interview.

A week later, I heard from another CNA who came to interview. She works at a local medical care facility and seems very competent and pleasant. She will start next week.

It’s hard to be in a place where we’re so dependent on others, both for financial support and for in-home care. Like everything else with ALS, finding help is a battle.

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