My husband, Todd, and I had a stressful night last week. While his nighttime caregiver was getting him ready for bed, Todd felt a rattle in his chest. He hoped that it would settle down once he was in bed. He’s often able to clear his lungs himself while on his side. The mucus did loosen up, but it was too much for him to clear on his own.
His caregiver urgently called for my help.
Todd lay on his back, and I straddled him and pushed on his abdomen, attempting to clear his lungs. But the bed was too soft, and the mucus kept building up. Todd asked to be put back into his wheelchair.
Fortunately, Todd’s nighttime caregiver is a retired nurse, and she has experience dealing with stressful situations. We worked efficiently to get his transfer sling under him and attached to our overhead lift while keeping his noninvasive ventilator mask on. I lifted Todd up and into his wheelchair. With a combination of manual assist coughs and his cough assist machine, I cleared his lungs.
Todd wanted to get out of his wheelchair and into a prone position because he was so tired. We put him back into bed, but kept the sling under him. I gave him allergy medication and another medication to loosen secretions through his feeding tube.
Todd’s lungs started to rattle again, and while he was on his side, I tried pushing on his stomach to help him exhale. It was hard to get the timing right, and it was difficult to find the right spot to press. Todd was getting frustrated, and he said his nose was stuffed up. It sounded like he was drowning.
“Just get me out of bed,” Todd said.
I rolled Todd onto his back, and I began to attach the sling to the overhead lift. But at the most inopportune time, the ventilator tubing “rained out.” Condensation from the humidifier blew into Todd’s nose. I had to replace the tubing and mask.
I worked as fast as I could while Todd asked me to hurry up in a soft, garbled voice.
After replacing the tubing and mask, I attached the sling to the overhead lift and got him back into his chair. I did more manual assist coughs and a couple more rounds of the cough assist machine, and in time he seemed to have a more thorough clearing.
“I’m not going to get back into bed tonight,” Todd said. “I’ll just sleep in my chair.”
I replaced his wheelchair head array unit with a soft head rest, and we reclined him back with pillows under his arms and a blanket over him.
At 1:50 in the morning, I finally went to bed, but I slept fitfully.
The next day, Todd’s lungs were clear. He said he had only slept for 15 minutes in the chair, and then he went back into his bed. Both he and I were exhausted from a rough night.
ALS is tough for both of us. I’m not a trained medical professional, but I’ve had to take on a role where I’m the last line of defense in life-and-death situations. In these increasingly frequent crises, I’ve learned to be clinical and methodical. Adrenaline carries me through, but afterward, I feel drained. I compartmentalize to do what needs to be done in the moment, but my body and mind store tension nonetheless. It’s a lot to deal with as a spouse.
That afternoon, I headed out on the ski trail. Moving my body in rhythm helps me let go of stress. Taking in natural beauty helps me recharge and recenter so I’m ready for the next time.
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