Why making mistakes as an ALS caregiver can be unsettling
The demands of ALS care often leave little room for error
Once when my daughter, Sara, was a baby, I made a mistake that led to a moment of sheer panic.
After setting up her jogger stroller next to the car and strapping her in, I dug through the diaper bag that was still in the vehicle to get some sunscreen. When I turned around, the stroller was gone. I looked up to see Sara rolling backward into the street.
Sara waved at me as I ran after her. She was fine, but I was shaken. After that, I always double-checked the stroller’s parking brake, and I never made that mistake again.
I’ve had similar feelings after I’ve made mistakes while taking care of my husband, Todd, who has ALS. He’s paralyzed and uses a noninvasive ventilator for breathing support. He’s completely dependent on me and his other caregivers to eat, use the toilet, get into bed, and turn during the night.
Every morning, I use an overhead lift with a transfer sling to get him out of bed and into his wheelchair. We’ve had the lift for more than five years, so I’ve hooked up the straps and transferred him thousands of times. It’s become automatic, like driving a car. But a couple months ago, I made a mistake when I neglected to secure one of the straps tightly to the lift.
As I picked Todd up off his bed, the unsecured strap slipped off and Todd tumbled down. Fortunately, I hadn’t slid him over too far yet, and he landed on a soft mattress. Todd could’ve been seriously injured if the strap had come off while he was somewhere between the bed and the wheelchair, or if it had happened while I was transferring him between the wheelchair and the toilet.
Sounding the alarm
I’ve made other mistakes, too, such as one night when I forgot to plug in his noninvasive ventilator. His lungs were particularly weak at the time, as he was probably fighting a bug. He’d been getting breathing support in the bathroom while his nighttime caregiver cleaned him up. As I typically do, I disabled the alarm that incessantly chirps while the ventilator is on battery mode, but when I moved it back near his bed, I neglected to plug it back in. Unbeknownst to either of us or his nighttime caregiver, the ventilator was operating on battery mode all night long.
Todd called for me in the morning earlier than usual. I went to check on him, and the machine’s alarm was sounding. The alarm often goes off if Todd’s breathing slows down or stops, or if his mouth gapes open and the machine detects a strong leak. In those situations, Todd wakes up and takes deep breaths until the machine quiets down. But in this instance, the alarm wouldn’t stop.
“Is it plugged in?” Todd asked.
“No!” I responded as I plugged it back in. “The battery had only 10 minutes left.”
I was horrified. If it’d run out, Todd wouldn’t have been able to call for me. His lungs are much too weak to project his voice, and if he tries, he loses his tidal volume and his breathing becomes increasingly shallow until he stops breathing entirely.
Every mistake like these has served as a wake-up call for me. I’m careful now to always check the straps of the transfer sling and the ventilator power cord, and I haven’t made those mistakes again. But I wonder, what mistake might I make next? So many things can go wrong for someone who’s dependent on imperfect people and machines.
In another incident, a hose popped off Todd’s ventilator, just moments after I stepped away for a minute. When I returned, the machine’s alarm was sounding, and Todd had a look of panic in his eyes. I realized he wasn’t getting air. I plugged the hose back in, and Todd caught his breath.
“I’m going to be the one who kills you,” I told him.
“ALS is going to kill me,” he replied. “Anything else is just [$*%@] that happens.”
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