Feeling sick and powerless as an ALS caregiver

When I'm ill and lack home health assistance, how are we supposed to cope?

Kristin Neva avatar

by Kristin Neva |

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“The essence of trauma is powerlessness.”

This quote from Christian trauma therapist Colleen Ramser grabbed my attention, because I often feel powerless as a caregiver for my husband, Todd, who is paralyzed by ALS.

We’ve been having a rough week. Todd’s shower aide called in sick a week ago. The home health provider had already cut us down to one shower a week because of staffing issues, so if I didn’t pick up the slack, Todd would go two weeks without a thorough scrubbing. His nightly bed baths aren’t enough to keep him from getting itchy. To help, I set up his portable tub on the bathroom floor, filled it with water, and lowered him into it with his overhead lift. I scrubbed him the best I could, but I have physical limitations, which is why we need the shower aide to begin with.

The next day, I got sick with a fever. All I wanted to do was lie in bed and sleep, but Todd still needed care. I had to keep at it, hoping he wouldn’t catch my bug.

At times like that, I feel I lack agency because I can’t call in and take a sick day.

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As an ALS caregiver, I’m constantly evaluating cold, flu, and other risks

How we try to get by

I’m on Day 5 of this bug, and I’m still in rough shape. After making Todd breakfast and helping him in the bathroom, I gave him his medications through his feeding tube and cleaned the stoma, the hole in his abdomen for the tube. The stoma was red and irritated, and it bled more than normal. Todd complained that it hurt and that his skin was itchy and uncomfortable, especially on his head and face.

“Didn’t the bath help?” I asked.

“Yes, but you didn’t scrub that much,” he replied. “After I soaked in the water, all that stuff stayed on me, and my head and face didn’t get washed that well.”

I felt bad that he didn’t get adequately bathed, and I’m frustrated that our local home health agencies are short-staffed. I cried, feeling powerless and unappreciated.

I went to my room to lie down, and after a while I received a text from Todd apologizing and telling me that he loves me.

Todd is also powerless. He’s completely dependent on me and other caregivers. He doesn’t like to be a burden, especially when I’m sick. Over the past week, he’s tried to tough it out so I can rest, putting up with aching bones, joints, and an uncomfortable mask for his noninvasive ventilator. He’s also been even more bored than normal, as we’ve been trying to keep him isolated in his office except for when I absolutely need to help him.

It’s hard on Todd and it’s hard on me. I can’t provide all the care he needs.

We need a change to the healthcare system in the United States. People with ALS in many other countries can get much more support than the few hours a week that many of us in the Medicare system are able to access. With all the money our country spends on so many things, why does it not provide more support for people who are paralyzed?

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, and are intended to spark discussion about issues pertaining to ALS.


Mary E Janus avatar

Mary E Janus

I read this article re: Todd and his wife and can relate. My husband has ALS and it's me doing most of the work. He does get shower help but transfers are really tough. At 70 I find it so hard to move him from place to place. My heart goes out to you... I'm so sorry you're going thru this. My prayers are with you.

Christine Gilmore avatar

Christine Gilmore

When my husband had Covid, his responsibilities increased. Our caregivers couldn’t come until he tested negative. Then a month or two later I got Covid. Again he had to take over my cares and work full time.
Some of my caregivers work through a private care agency. They all complain of not getting enough hours, yet the agency can’t find coverage if someone calls in sick.
Per this attached article, our country spends more on the military than the next 10 countries combined. Yet middle class people cannot afford to care for their loved ones.

Erin T. Lamoureux avatar

Erin T. Lamoureux

Thanks for your posting, Kristen.
I am 66 years old taking care of my 67-year-old husband who has ALS. I do not have any outside help with his care. Kristen did you state that Medicare paid for your husband's home health aide? I could use help since my husband is total care.


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