Accepting Help Is Hard, but Caregivers Need Respite

Being a caregiver for a spouse with ALS is a heavy load, and at some point it becomes too much for one person to handle.

When ALS took from my husband the ability to walk, I helped him move from his wheelchair to the bed. He would sleep most of the night, except if he needed to use the toilet. I would wake to help him get into his chair, he would drive into the bathroom, and I would help him transfer to the toilet.

One sleep disruption at night wasn’t so bad, but then he started waking me to scratch an itch, move an arm, or turn him. I was up many times a night, sometimes several times an hour. Just as I’d drift off to sleep, he’d wake me again. As things worsened over two years, I felt as if I was losing my mind due to the lack of uninterrupted sleep.

We decided to get nighttime care from a home health agency. My husband, Todd, still wanted me to help him urinate before the certified nursing assistants (CNAs) took over. They would put him in bed and turn him every hour or so.

It was uncomfortable having people outside of our family in our home at night, but I needed respite — a period when I wasn’t on duty. I moved into an adjacent bedroom, where I slept for three hours until my 21-hour shift started.

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I had a lot on my plate caring for Todd all day, running the kids to their activities, doing household chores, and cooking meals. Showering Todd was another time-consuming and physically demanding task on my schedule. I asked him to let the CNAs shower him before bed as they were trained to do. However, he was mortified at the thought of someone other than me bathing him.

I felt bad for him. He’s the one with a terminal illness, but I was overloaded.

Accepting outside help is difficult for both the person with ALS and their caregiver. But assistance for this disease is inadequate, so it’s important to take advantage of every available resource. Even if a caregiver can complete a particular task, it’s beneficial to have someone else share the load.

At the beginning, it seems manageable, but eventually, everyone breaks. It’s like a scene in a TV series that Todd and I used to watch. When a CIA agent is captured, a young spy asks, “Will he talk?” A veteran responds, “Everyone talks.” So they send in a rescue team immediately.

As a caregiver, it’s frustrating if the person with ALS doesn’t want anyone else to help with toileting, showering, or other tasks. However, they must be flexible before the caregiver breaks.

No single solution works for everyone because too many variables exist. Progression among people with ALS varies widely: Some face rapid decline, and others manage years of paralysis. Some people with ALS sleep through the night, while others need 24-hour assistance. Financial resources and support networks for healthcare, friends, and family differ, too.

We were fortunate to have my mom living next door, and I was now getting some sleep at night. But it was still too much — something had to give.

One evening while I was making a salad, I peeled the lid off a can of olives and sliced my thumb open on the sharp metal.

Blood gushed out, and I cried in pain. I called my mom, and she rushed over and brought me to the emergency room, where I got five stitches and a splint on my thumb.

When I got home, I told Todd that there was no way I could shower him.

“All right, I’ll have the CNA shower me tonight,” he said. And then we found out he was eligible to get regular bath aids twice a week through Medicare because he required in-home, skilled care — in his case, physical therapy to relieve joint pain and help him sleep.

Todd got used to the professionals bathing him, and now he even prefers them to me. They scrub harder.

A couple of months later, after writing a check to the hospital for my ER visit, I thought, “That’s the best $852 I’ve ever spent.”

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