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

Last week, I was in a grocery store and noticed another shopper had an occasional cough and wasn’t covering his mouth. I gave him wide berth as I gathered the items I needed. When I had found everything on my list, I made a beeline for the checkout line, and wouldn’t you know, he stood in line right behind me.

I inched forward, trying to keep space between us and hoping for the best. Maybe it was spring allergies.

Perhaps the only good thing about life during the pandemic — at least something that I was grateful for — was that it was not socially acceptable to be out and about with a cough. However, it seems like life is returning to normal, so I’m hypervigilant. More than once, I’ve been in line at the grocery store when I’ve observed a cashier with a cough. I’ve gotten out of line “to get one more thing” and then queued at a different register. And I’m fond of self-checkouts for the same reason.

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I have to stay healthy because I need to take care of my husband, Todd, who is paralyzed from ALS. He is unable to cough up mucus from his lungs due to ALS having weakened his diaphragm and rib muscles. His last few colds have been scary. I’ve needed to use a cough assist machine and manual assist coughs. He took medication to thin the secretions, and I held my breath, hoping he’d pull through and it wouldn’t turn into pneumonia.

We take many precautions because any virus is a serious risk for Todd. Friends and family know not to visit if they are sick.

We ask his night caregivers to cancel, even on short notice, if they have any signs of illness. Sometimes a caregiver will text me to let me know she had exposure to an illness. Todd and I discuss these situations. If the exposure was minimal, we have the caregiver come, as it doesn’t seem any more risky than hanging out with our kids who are exposed to viruses at school every day. If a bug is circulating in their home, then we cancel.

If our children catch a bug, Todd quarantines in his office and bedroom, and I bring meals to him.

However, we want to live life as normally as possible, especially for the kids. They attend school and other activities. I try to get out, too, for my own mental health. Even a trip to the grocery store makes me feel less isolated because I often run into people I know in our small town. Balancing risk with living life is an ongoing challenge.

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