The thoughts that follow when living with ALS and a virus
Be it a cold or the flu, the consequences can be severe with weakening lungs
“I’m not going to write a column this week,” I told my husband, Todd. “All I can think about is that you’re sick, and I don’t know how it’s going to turn out.”
Todd came down with a bug a few days ago. He’s had body chills, aches, and congestion. Because his breathing and lung strength are compromised from ALS, any cold or flu is life-threatening. This one is the worst he’s had in four years — and his lungs are much weaker now than they were then.
“You should write about it,” Todd told me. “It would be a way to get your readers to come back next week to see if I made it.”
I managed a chuckle. Humor helps us cope.
After the first rough night with the bug, Todd greeted our dog in the morning. “I made it, Comet,” he said. “I’m still here.”
“What did you think your chances were?” I asked Todd as I helped him in the bathroom.
“About 90 percent,” he said.
That sounds like a high percentage when it’s a grade on a test. But if one is talking about 1 in 10 odds of dying, it’s not good. I wouldn’t participate in activities in which my chances of death were 1 in 10.
Caregiving through sickness
Todd felt better during the next day, but only as long as he was taking acetaminophen. When the medication wore off, the fever came back and he felt terrible.
It’s been an intensive few days of caregiving as we wait for the virus to run its course. I’ve given Todd many manual cough assists throughout the day to keep his lungs clear. Our son has helped. My mom has helped. And a friend who’s heavier than the rest of us came several times a day to help clear Todd’s lungs more deeply. His nighttime caregivers did what they could to help him cough while he was in bed. My mom came to take care of Todd so I could run to the store and take my sauna.
I feel somewhat numb. Are we approaching the end? Will he be able to avoid pneumonia? We’ve been living on the edge of death for so long.
I began to think practically. Todd did our taxes last week before he got sick, but he hadn’t submitted them because he was waiting to go over them with me.
“Want to work on taxes?” I asked.
“The distraction would be good,” he said.
And so we got them submitted. Check. Just in case.
A friend asked if Todd goes to the hospital when he gets sick like this. I explained that because Todd isn’t planning on getting a tracheotomy, there’s not much else to do for him at this point. And the hospital wouldn’t have someone with him 24/7, ready to help him clear his lungs.
“If I go to the hospital, that means I’m dead,” Todd told me.
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.
About the Author
Leave a comment
Fill in the required fields to post. Your email address will not be published.