As an ALS Caregiver to My Husband, I Can’t Just Call in Sick

Everyone needs days off, but with ALS, that's not an option

Kristin Neva avatar

by Kristin Neva |

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“Two are better than one,/ because they have a good return for their labor:/ If either of them falls down,/ one can help the other up./ But pity anyone who falls/ and has no one to help them up.” — Ecclesiastes 4:9-10 (NIV)

Because my husband, Todd, has ALS and is paralyzed, I help him up every morning using a sling and overhead lift.

Last week, we both had a rough start to the day, and I could barely muster the strength to get him out of bed and feed him.

Todd had a restless night, sleeping for 10-minute stretches. His nighttime caregiver left at 5 a.m., and then Todd toughed it out for as long as he could before waking me.

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I woke to Todd’s call just after 6 a.m. I had a splitting headache and stumbled to his room. I felt like I might pass out and had to lie on his bed in between moving a leg and arm and adjusting his mask. I didn’t want to fall over.

After getting him repositioned, I took a pain reliever and went back to bed. I got up an hour later and got the kids off to school. My headache had lessened, but I still didn’t feel well. I checked on Todd. He was miserable. I washed him up and got him out of bed. While I was feeding him breakfast, I laid my head on the counter between giving him bites of peanut butter toast.

I wished I could call in sick. I texted one of Todd’s nighttime caregivers to see if she could take care of Todd for a few hours, but I didn’t hear back from her right away.

Todd has me to help him, but what about the times when I’m down? Before ALS, we were in it together, tag-teaming life. If one of us had a rough day, the other one would step in and take care of things. Now he’s dependent on me, so I have to push through.

I set Todd up on his computer and told him to call our home phone if he needed help. I closed his office door and my bedroom door, and I went to my bed to nap. I felt functional when I woke an hour later. I still had a dull headache, but I no longer felt like I was going to fall over.

I checked my phone, and the caregiver had replied that she could come, but at that point, the heaviest lifting was done and I could manage on my own, especially since Todd was doing his best not to call for my help beyond what was absolutely necessary.

Although I’m sad to have lost the practical support that Todd used to give, he and I still have a partnership on an emotional level. If one of us (usually me) is upset about something, the other tries to rise above the emotions and be supportive. But it’s hard to have so much fall on me physically.

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.


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