Prioritizing comfort as we continue settling in for the ride with ALS

After my husband, Todd, was diagnosed with ALS, we moved closer to my parents because we knew we’d need their help as the disease progressed. We built an accessible home on the spot where their old barn had stood when I was growing up. We weren’t sure how much time Todd would have, but after the first year with the disease we suspected he had a relatively slow-progressing form of the disease, and we needed a house to accommodate his changing needs.

Because new construction is so expensive, our accessible home had to be much smaller than the house we’d left behind. As we downsized, we got rid of furniture, including a king-size bed we’d had in a guest room. That left a king bed for us in the master bedroom and twin beds for the small bedrooms.

Back then we never thought we’d eventually be sleeping in separate rooms, and Todd and I indeed continued to share a bed in the early years of his illness. But as he became increasingly less mobile, sleep became more and more difficult for both of us. He needed help moving his limbs, scratching itches, using the urinal, and being turned side to side, and I wasn’t able to sleep knowing he could call me at any moment.

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I’d been sleep deprived when each of our kids were babies, but I knew those seasons would eventually pass. But it was different with Todd’s ALS. Things were only getting harder. Todd didn’t want to take sleep medication that could depress his breathing or leave him feeling in a fog, and the turning beds he tried didn’t work well for him as a side-sleeper.

But after several years of broken sleep, I was completely worn out.

With miles to go, changes

We finally started hiring nighttime caregivers so I could get some rest. I moved into the room across the hall and slept in a twin bed, close enough to help in an emergency, but far enough to sleep through most nights.

Eventually, we bought a queen adjustable base with a Sleep Number mattress for Todd. His new queen mattress only had one air bladder, so he was able to sleep in the middle of the bed. It was narrow enough for the caregivers to attend to him, but still wide enough for him to be turned from one side to the other without needing to pull him on a draw sheet. I thought about moving the king bed into my room, but the space wouldn’t allow it, so we sold it.

Nine years later, I was still sleeping in that little twin bed.

Last spring, after years of making do, I finally bought a queen bed for myself. It felt like a small luxury to be able to stretch out. I probably should’ve done it years ago, but it didn’t seem practical. I didn’t imagine we’d have years of disability ahead of us. It was hard to justify spending money on something I might not use for long, especially when we had so many other expenses related to ALS and had to raise funds for Todd’s care.

Turns out, this ride with ALS has come with a lot more mileage than we expected.

Todd reminded me that I’ve never hesitated to invest in his comfort. I should extend the same compassion to myself — because settling in for the ride means making it as comfortable as we can, for both of us.

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