ALS + a Cold = Stress x 10
My husband, Todd, came down with a cold last week. At this stage of his ALS progression, any cold is life-threatening. His lungs fill up with mucus, and he needs me to push on his abdomen so he can cough it out.
Todd had a sore throat and a runny nose on Saturday. We hoped it would end there and not move down into his chest. His caregiver put him into his bed that night, but then she woke me early Sunday morning because Todd felt panicked. His lungs had filled up.
I climbed on the bed, straddled him, and pressed on his abdomen repeatedly. Enough mucus came out for him to breathe well enough for me to transfer him into his wheelchair.
Once he was in his wheelchair, he was in a better position for me to clear his lungs. He slept in his chair for the rest of the morning, and his caregiver cleared his chest every couple hours.
Throughout the week, I placed my hands on his belly and pushed again and again. When the mucus wouldn’t clear, we used a cough assist machine to loosen it up. I held the mask over his mouth and nose as the machine pushed and pulled air in and out of his lungs. I could hear his lungs gurgle more with every exhale, and then we went back to the manual assist coughs for the final expulsion of mucus. The whole process takes five to 10 minutes.
On the worst day of the cold, Todd needed my help coughing every 15 to 30 minutes. He was so miserable. His nose kept running, and I kept suctioning it. His lungs felt heavy, and his abdomen was sore from me pressing on it. Colds are hard on him, and they are hard on me.
I’ve been giving him manual assist coughs for years, but it’s usually not more than a few sessions a day. My body could handle that, but this time around, my shoulders hurt from the repeated jarring.
I couldn’t keep up with the intense manual coughs, so I jury-rigged a device out of croquet mallets and a pool noodle so I could lean into his stomach using the weight of my body rather than putting stress on my shoulders. It’s not ideal — it’s not as comfortable for Todd and doesn’t expel the mucus as easily — but I have more stamina to keep going and it doesn’t hurt my shoulders too much.
“It’s a lot of work to keep me alive,” Todd said as I transferred him to the toilet after I helped him cough and suctioned his nose. It’s overwhelming to have him so dependent on me. I’ve never experienced something as physically and emotionally exhausting as when Todd gets sick. The only thing that came close was labor and childbirth, but that was limited in duration.
I’m trying to baby my right shoulder so it will heal, but how can I do so when his needs are so great? I can’t press on his abdomen as hard as he wants me to.
I mustered up help from others who are physically stronger and willing to assist Todd. I made quick runs to the grocery store while Todd’s physical therapist was here, as he’s good at giving manual assist coughs.
When Todd’s massage therapist came to give him a massage, we taught him the manual assist cough technique. He’s a big guy and was able to clear Todd’s lungs well. I ran our daughter to dance while he was here. My brother, who was visiting from out of state, learned how to help. He kept Todd’s lungs really clear for a couple days, but then had to go back to work.
We hired one of our caregivers, who is exceptionally good at the manual assist cough, to pop into our house to help clear Todd’s lungs occasionally during the day.
Our normal ALS life is stressful, but when Todd is sick, it’s stressful times 10. I’m on edge, wondering if he’ll pull through. I try to stay within earshot or keep my phone on me, but I worry his lungs will fill up before he has a chance to call me. I check on him throughout the day, hoping to find him still breathing. It is exhausting to be so hypervigilant.
Todd told me, “I’m sorry your life is so hard taking care of me. I wanted to give you a life on a lake with a boat, and your biggest worry would be if you should use SPF 30 or 50.” That brought tears to my eyes. This ALS life is hard.
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