I love learning some new skills, but not all of them.
I’m also learning how to manage a feeding tube this week. It’s a skill I wish I didn’t need.
One of the hardest things about caring for someone with ALS is adapting to continual change. After we adjust to a new normal, my husband, Todd, has another setback and we need to figure out how to manage the next stage of the disease.
A few months after his diagnosis nine years ago, Todd enlisted me to shave his face. I still remember my apprehension as I picked up his razor and ran it over his cheeks, hoping I wouldn’t nick him. He didn’t ask me again. Then he grew his first beard. He ended up liking it, and it was easier for both of us.
Today, shaving him would be no big deal, but I was still reeling from the diagnosis at the time and it was overwhelming.
Since then, I’ve taken on more tasks, learning new skills as Todd loses independence.
I’ve learned how to squeeze just the right amount of ketchup and mustard onto Todd’s hamburger.
I’ve learned how to pour water into his mouth at just the right pace so he can swallow pills.
I’ve learned to use the Hoyer lift to get him off the ground when he falls. (Remember to crisscross the leg straps so he doesn’t fall out.)
After his arms became too weak to use the joystick, I learned how to drive his wheelchair while walking beside him. I figured out how to maneuver through doorways by reaching over his shoulder or walking backward in front of the chair.
As if all that wasn’t stressful enough, I had to learn to assist him in coughing. He told his physical therapist that he couldn’t quite clear his lungs, so she showed me where to press below his sternum.
“OK, I’ll try it. Tell me if I’m doing it right,” I said. Todd stacked his breath as I counted, “One, two, three.” Then I pressed as he exhaled.
After I got used to each task, they didn’t seem like a big deal. I remind myself of this because the future feels daunting.
This week feels daunting, as it’s time for him to get a feeding tube. I’ll need to learn how to flush it and, eventually, feed him through it.
Others who care for people with ALS tell me it isn’t hard to use the feeding tube. Todd’s shower aid has worked with many clients who’ve had them, and she says it’s easy.
After this surgical procedure, will I still be able to give him an assisted cough without hurting him? The surgeon thinks so.
Will it be painful for him to be transferred? Turned in bed?
I’m sure I’ll figure it out, but for now, it’s a big unknown. I’ve watched a few YouTube videos, but I won’t feel comfortable until I’ve had hands-on experience.
If all goes well with Todd’s surgery and recovery, I’ll go to the puppet class. Oh, how I wish that was the only new skill I’ll be learning this week.
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