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 [$*%@] that happens.”
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Comments
Christie Addy
Your article made me cry. I am watching my husband decline daily and I am powerless to stop it. We don't have the all around support we need and I feel inadequate about 90% of the time. Your story brings to light that there are other care givers who are exactly where i am. I wish I could meet you face to face. Thank you for your willingness to share.
Ann K.
I feel the same way! We just brought my husband home from 2 months in an LTACH. Before that he was 4 weeks in an ICU where he got a peg tube and a tracheostomy. I did a week crash course on how to care for him but I feel very inadequate. My kids are great but they don’t live very near and skilled nursing is nonexistent. Fortunately at this time he only needs the ventilator at night and can eat solid food and talk. He walks with a walker. He has limited use of his hands so requires help with just about everything. It’s very hard to watch him deteriorate, he was an avid biker and hiker.
Spero Koulouras
I'm a pALS and this story resonates! Thanks for sharing, and for the thousands of things you get right all the time! I'm stealing the last line. “ALS is going to kill me,” he replied. “Anything else is just [$*%@] that happens.”
Roxanne Kusske
Every once in a while, one of your stories puts that lump in my throat, because I feel so deeply for what you are going through. I cared for my husband for 2 years while he struggled with his ALS, making lots of mistakes along the way. I'm free from that now, as is he; so, I wanted to give you encouragement to keep doing the great job that you're doing, but remember that you are human, mistakes are inevitable. ❤
Gale Infeld
So glad you wrote this article! I make so many goofs while taking care of my PALS that we sometimes laugh about but sometimes are so frightening too. My husband was diagnosed in 2021 and is similar to Todd though he has limited use of his arms and hands. It's so nice to acknowledge that we aren't perfect but we give it our all.
Doris Sutherland
Your stories scared me. But I thank you for sharing. My husband was diagnosed in September 2022. Our life changed from that day forward. I try to be perfect while helping my husband but there’s no way. I forget. I lose stuff. I get overwhelmed. But through it all, I keep going because he is the love of my life. I want him to have the best of life possible with this horrible disease. Today I went out to take the dog for his evening poop and pee. When I opened the door, he was on the floor. He had missed his wheelchair. It’s happened before and I would freak out. Now. This would upset him more than the fall. Now I’m very calm and just ask if he needs my help (he’s the independent type). Sometimes he does and sometimes he doesn’t. The ALS is progressive and I probably will have many caretaker crisis situations where I will feel I may be killing my husband. Hang in there.
D. Raymond Freebury
my ALS has been slowly progressing over seven years and I still have some use of my legs. I do need help to stand but can't walk. The main problem facing my wife is helping me on and off the commode and into my electric wheelchair. I have a PSW morning and evening to get me up, wash and dress me and in the evening put me to bed. They are not around for the daytime needs so I am dependent on my wife and her physical strength. She sometimes feels guilty if she can't do it quickly every time. But how can I complain, she will be 90 next month ands has been feeding and caring for me for 67 years. I am about to get a battery operated Hoyer lift to take some pressure off her back, but this proud lady will not seek help with cooking and will not let men order take out food save for the occasional Costco BBQ chicken. I am fortunate that I do not have eating , swallowing or breathing problems because they will scare her when they come. Your experiences provide a cautionary warning for the future for both of us. Thanks for sharing
Edward Pavao
Sorry to read Christie. Going through same thing with my wife of 35 years. Powerless to help .Just make her comfortable as possible. But very hard sometimes. Government aid is horrible and you need to jump through hoops and still nothing.AlL foundation is a great help .But not enough for emotional distress for me seeing decline.
Susie Young
Thank you to the pALS in the previous comment who thanked us caregivers for what we DO get right. I never get any appreciation from my pALS. He is so bitter and miserable and seems to take it out on me. Sometimes I feel I can’t do anything right in his eyes.
Paul Hebeisen
My wife died 11/2 years ago from ALS. I regret not having realized the onset of her condition with blurred speech and muscle weakness in her waist earlier. I used to ask her to clear her voice and talk louder and stand straight and not bend over. She was definitively diagnosed with ALS 2 year before her death. In hindsight I am sure that symptoms could have been recognized as ALS earlier. And then again I think it would not have made any difference. When caring for her at home one of the more disturbing mistakes I made was to let her slip out of may hands during transfer from the bed to her wheelchair. She landed on the floor without getting hurt. I was very lucky to be able to get her back into the bed. Her son and his family visiting at that time became very concerned that I might not be able to care adequately. Handling the strain that my wife's condition put on the whole family at times almost became unbearable. I still have no answer of how to handle such a situation. Caring for my wife could have easily overwhelmed me. I am grateful that this did not happen.