Getting good sleep is challenging with ALS
How shifting positions makes a difference on those nights without extra help
Handling night care has been one of the hardest parts about managing ALS for my husband, Todd, but now I’m hopeful because he’s been training himself to sleep on his back.
Todd has been a side sleeper, and for years he had to be turned from side to side every hour, and then his nighttime caregivers put him on his back before leaving at 5 in the morning. He’s been able to stay on his back for an hour or so, and by the time he calls for me, I’ve had a long enough stretch of sleep.
Todd had too much anxiety to sleep independently throughout the night. He’d get too sore staying in one position, and he had too many itches and aches. Turning beds and alternating pressure mattresses didn’t work for him. One medication he tried didn’t help him sleep, and he didn’t want to take anything stronger because of likely side effects.
Our only solution was to find nighttime caregivers. We first had volunteers and a small amount of grant money from ALS organizations to hire help from home care agencies. We eventually needed to hire help directly, and we raised funds to do that because the cost of caregiving is far beyond our means.
Todd’s health improved with the nighttime care, and my mental health improved with nightly respite. For some time, whenever a caregiver would cancel, I’d have a stress reaction as my mind returned to the days before we had caregiving help. Fortunately, we’ve been able to find people to hire, although we’re currently short-staffed. But my mom has been willing to help us out in a pinch.
An experiment in an emergency
But last Saturday, my mom was out of town when a caregiver got sick and canceled an hour before the shift was to begin. I sent text messages to Todd’s other caregivers, but they either weren’t available or didn’t reply. I dreaded the coming night.
“You’ll get a good night of sleep,” Todd told me. “I’ll be fine. I’ve been wanting to try a night on my back.”
Recently, we’ve had a few nights when caregivers had to leave early, and Todd went on his back as early as 2:30 in the morning. He managed well enough until the normal time when he’d need me, about 6:30 or 7. Todd said that he’d been training himself to stay on his back without calling me, and he thought he could do a whole night.
It helps that he has an adjustable bed frame that’s compatible with his Echo Show device, and he can ask Alexa to change his bed position or turn on the bed massage. It also helps that he now uses a noninvasive ventilator. He has less anxiety lying in bed now that he can properly fill his lungs.
Todd did OK that night. He didn’t call for me, but at 4 in the morning, I heard him talking to Alexa. I checked on him, and he asked me to make some adjustments. I went back to sleep, hearing him again at 6. His ventilator mask was leaking and blowing into his eyes, and he was listing to one side when his head was elevated. I replaced his mask and turned him to his side, and then he slept hard for more than two hours.
Even though I was up and down with him, I felt OK the next day — not as good as when I get a six- or seven-hour stretch, but at least I had gotten that four hours. I felt relief that Todd had been able to go that long without my help.
I feel less anxious about the thought of a caregiver canceling at the last minute, but I’d like to get to where I could have a full night’s sleep even when we don’t have outside help.
We’d still have caregivers when we could find them, as long as friends and family continue to support Todd’s care. It’s good for my mental health to be off duty, and I sleep better when I’m not listening for Todd. And it’s good for Todd as well. When he’s turned side to side, secretions don’t settle in his lungs and he doesn’t develop pressure sores. The caregivers also work out spasticity in his leg and arm muscles with a massage gun.
The next night, another caregiver called in sick. As I was getting Todd ready for bed, I found myself crabby with one of his requests, because I was tired from the prior night of poor sleep.
Fortunately, my mom had returned and was able to help after I got him in bed. She put Todd on his back at 3 a.m. and left, and I slept well. When I’m rested, I’m a better version of me.
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