Private caregiver wanted — because I need to sleep
Finding a nighttime caregiver has proven difficult for this ALS family
A month ago, one of my husband’s nighttime caregivers gave notice that she won’t be able to work beyond the summer, and our search for her replacement began. I asked Todd’s other caregivers to spread the word, I posted on my Facebook page about it, and Todd reached out to local pastors and asked them to share our request.
When Todd was diagnosed with ALS, his sleep wasn’t affected much, but as the disease progressed he had difficulty turning in bed and getting comfortable. My sleep was increasingly disrupted from helping him, and after a couple years of not getting a good stretch of solid sleep, I reached a breaking point. I couldn’t continue indefinitely without getting uninterrupted sleep.
I purchased a number of turning mattresses and alternating pressure overlays, but nothing worked for Todd because he is a side-sleeper. He tried one medication, but it didn’t help him sleep, and he didn’t want to take stronger ones because of likely side effects.
We needed to get nighttime help. Because Medicare doesn’t cover any meaningful level of caregiving, we had to raise funds to pay for the care.
At first, I thought I’d be fine with one or two nights of solid sleep per week, but the more sleep I got, the more I wanted. I can’t bank sleep; when I don’t get a long enough stretch to fall into a deep sleep, I don’t do well physically or mentally the next day.
We eventually built a team of nighttime caregivers to cover every night. Initially, we were able to hire some caregiving help through our local home health agencies, but now they are short-staffed, so we need to find help ourselves.
We now have a crew of seven caregivers on our payroll. One of the caregivers covers two nights per week, and another substitutes on occasion if it doesn’t conflict with her full-time job. We have enough people that we can usually find someone to pick up shifts when others need a night off.
It’s good to have several people in the rotation, so that if somebody gets sick we’re not left scrambling to cover multiple nights. Besides, most people find that they can’t handle working multiple nights every week, even if they’re willing to do it when they first start with us.
In the past, people have started working for us and were doing a great job, but after a few weeks they realized that night shifts are too hard. We don’t really know if it’s going to work out until someone has been doing the job for a month.
The job has been a good fit for people looking for extra cash. We’ve had stay-at-home moms, retired nurses, college students, and certified nursing assistants (CNAs) who can’t get enough hours at their regular jobs.
After a couple weeks, we hadn’t received any responses to our efforts, so I posted on a public Facebook group for people looking for jobs in our community. I got a handful of responses and scheduled interviews, but most of them canceled. One person seemed interested during an interview but then reconsidered. In the meantime, another caregiver gave us notice that they’d be leaving, too.
Fortunately, someone else expressed interest, and after an interview we thought they’d be a good fit. They shadowed the caregiver who was leaving, and at the end of the shift, we were optimistic. But a couple days later, that applicant backed out. I think Todd’s care was more involved than they had expected. Now, I’m feeling stressed out that we’re so short-staffed.
I pulled one of the alternating pressure mattress overlays out of the closet and asked Todd to try it again. He’s been training himself to stay on his back for as long as possible after the caregivers leave at 5 a.m., and he said he’d be willing to try an entire night on his back if we don’t have help. I also searched on my ALS Facebook groups to find out what sleep medications are working for others.
I continued strategizing about how we might manage if we don’t find help, as well as brainstorming ways to get the word out. I asked Todd to send an email to the director of the nursing program at our local university. We’ve had a few great nursing students help us in the past. Some college students are night owls, and this job gave them time to study in between taking care of Todd.
I hope we find help soon. I’m only human and have limitations — like needing sleep.
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