Planning for future ALS progression while not borrowing trouble

My husband, Todd, is paralyzed because of ALS, so I transfer him from bed to wheelchair, and from wheelchair to the toilet, using a sling and overhead lift. This morning, as I moved him from his bed to the wheelchair, he told me, “My fingernail is cutting into my hand.” I separated his hands and continued the transfer.

Multiple times a week he gives me or one of his nighttime caregivers similar feedback. “My finger is bent.” “Straighten my wrist.” “The sling is caught on the headrest.” At times, he’s communicated to prevent significant injury, as when he points out that the sling’s straps are not properly secured to the lift.

He’s expressed concern that he’ll get hurt during transfers if he can’t talk.

Preparing for communication concerns

To stay one step ahead of his disease progression, I try to track down equipment before Todd needs it. It’s best to start the process of ordering a wheelchair before a fall, and to plan for an accessible home and bathroom before total paralysis.

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A couple years ago, after Todd’s voice weakened, I was concerned that he wouldn’t be able to call me at night. Although he can’t press a button with his hands, I found the Twitch Switch, which could be taped to his forehead with the wire leading to a doorbell. He could thus activate the switch by raising his eyebrow. He hasn’t needed to use that yet, as he can still speak to call me or ask his Echo Show device to call me on our home telephone.

I know that people who’ve lost their ability to speak can use eye-gaze technology while in a wheelchair or even in bed, but I didn’t think that would work for our communication during transfers.

I asked for other ideas on an ALS Facebook forum. Most caregivers who responded have learned to pay close attention to hands and feet. Someone suggested using a voice amplifier, which could work as long as a whisper of a voice remains. Others use flashcards with various statements, and they ask yes-no questions to narrow down and select what the person wants to say. Someone with ALS who’s lost the ability to speak expressed frustration at having to make a noise and then hope the caregiver could guess what’s needed. Every transfer feels risky.

Thinking about future progression with ALS, including worsening communication, is overwhelming. I’m reminded of the anxiety I felt in the first few months after Todd’s ALS diagnosis. I couldn’t sleep as my mind raced with worry.

A counselor encouraged me to focus on the present and to train my mind to live in today. I got to the place where I could sleep again and function to take care of the kids and Todd, but I had to learn to balance the counselor’s advice with making necessary preparations for progressive disability.

I have flashcards ready in case of an emergency, but they’re cumbersome to use, and I haven’t found a great solution for communicating during a transfer. Unfortunately, not every problem has a solution.

I’m trying not to dwell on it. Some people with ALS lose their voices, and others can speak in a whisper until the end. Todd might be in that latter category. We don’t know what’s going to happen, so I’m trying to take the words of Jesus to heart when he said, “Therefore do not worry about tomorrow, for tomorrow will worry about itself. Each day has enough trouble of its own” (Matthew 6:34 NIV).

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