Learning New Skills I Wish I Didn’t Need

Learning New Skills I Wish I Didn’t Need

I love learning some new skills, but not all of them.

Thirteen years ago, I took a creative writing class that set me off on a journey that has included three novels, a children’s book, and now a weekly column. This week, I hope to take a puppet class.

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.

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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 we got his wheelchair and an accessible van, I learned how to secure him with Q’Straints.

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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Note: ALS News Today is strictly a news and information website about the disease. It does not provide medical advice, diagnosis, or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or other qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website. The opinions expressed in this column are not those of ALS News Today or its parent company, BioNews Services, and are intended to spark discussion about issues pertaining to ALS.

Kristin Neva is an author, blogger, mother of two, and caregiver for her husband, Todd, who has ALS.
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Kristin Neva is an author, blogger, mother of two, and caregiver for her husband, Todd, who has ALS.
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3 comments

  1. Martha Sluder says:

    I can’t imagine what you all must be dealing with. I took care of my 80 yr. old husband (age related illnesses). My heart and prayers are with you.

  2. I have ALS and live alone. I have learned many skills I wish I did not have to learn. But with ALS you learn to think outside of the box. Like I figured out to wear ankle-length toe socks to keep my toes straight even though I have two dropped feet. I can still walk some and stand but I am in a wheelchair. I got a feeding in March but I can still eat food. I learn to flush it myself. I have learned to get outside help so for at least for right now, I am not a burden to my family. I researched for a grant with the Department of Aging to get part-time help with housework. I have college students through the Live Like Lou Foundation to help with yard work and to play therapy games with me to make me laugh, the Independent Living in your state may help with adapting the bathroom. ALS clinic has a loan closet for rollators and wheelchairs. A church helped with trees being cut down, another church is supposed to help with ramp. My family does a lot to help in every way.

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