Despite the lows of a respiratory illness, we’re fighting for more time
Grateful for a shift into renewed energy after living on the verge of giving up
It’s been a rough couple weeks since my husband, Todd, came down with a respiratory illness. The first weekend was the worst, with nausea, fever, chills, body aches, and chest congestion. By day four, he was able to eat a bit, and he spent longer stretches of the day sitting up in his power wheelchair, but we still had to clear mucus from his lungs every 15 to 30 minutes with manual assist coughs. His lungs were raw, and his body was further weakened by fighting this virus on top of nearly 15 years of ALS.
Todd was miserable.
“It might be time to wind things down,” he said one evening, after a week of being sick. He was referring to having comfort drugs prescribed that would help with his anxiety and discomfort, but might further suppress his breathing. “Life was already hard, but this is unbearable.”
Todd is exhausted.
The passage of time
ALS has stolen so much from him. He used to be so active, full of energy. After a long day at work, he’d come home, eat dinner with me and the kids, and then help me clean up the kitchen and whip the house into shape. And then he might start on a house project or do yard work. I’d rarely catch him sitting down to relax, unless he was intentionally spending time with the kids.
Even after he was diagnosed with ALS, he hardly slowed down. He kept working for as long as he could, and after he lost his ability to do that, or even independently manage activities of daily life, he found other meaningful things to do.
For the first 10 years with ALS, we’d go to our kids’ school and extracurricular events, attend college hockey games, and go down to the shores of Lake Superior.
But for the past five years, Todd’s been homebound with increased discomfort, and the care that he needs makes my life increasingly isolated.
Sometimes I’m so weary from caregiving that I just want to give up, too. The constant vigilance, the physical demands, the emotional toll of watching his condition progress — it all wears me down.
The time ahead
But faced with the possibility of losing Todd to this recent illness, something inside me shifted. I felt a renewed energy to keep going, to fight for more time.
“Let’s see how you feel in a couple weeks,” I said. “I hope this will run its course.”
Our day-to-day life is hard, but I don’t want to lose my best friend, and I don’t want our children to lose their father. My life often seems unmanageable, but I don’t think life after ALS will be better.
I’m hopeful we can get back to normal, when I can leave him for an hour to run to the store for groceries or remove snow from our driveway. If we can get through this episode, then daily life might feel easy in comparison.
After Todd passed the one-week mark, he was again able to sleep at night, and after a week and a half, he started to seem more like himself — more optimistic, more engaged. He talked about wanting to see our son through high school.
“Are you feeling better?” Todd’s shower aide asked when she arrived today.
“I’m 95% better,” he said. “But that’s not saying I’m well. A 95% improvement from being close to death means I’m still in pretty bad shape.”
“You lost a lot of weight,” she said. “That’s scary.”
“I had weight to lose,” Todd said. His extra weight probably helped keep him alive.
His lungs again filled with mucus before he could even get to the bathroom, and I cleared them out with a manual assist cough. His lungs filled up again after his shower aide got him into his shower chair, and I cleared them out again. I cleaned the kitchen while he was in the shower, but I was on alert, ready to assist if needed. After his shower, I learned that Todd’s lungs had filled up on a couple more occasions, but the shower aide cleared his lungs.
We still have a ways to go before we’re back to normal, but I’m optimistic Todd is on the road to recovery.
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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