Getting over my reluctance to ask for help as an ALS caregiver

Facing an unexpected scheduling crunch, a columnist decides to phone a friend

Kristin Neva avatar

by Kristin Neva |

Share this article:

Share article via email
main graphic for

I don’t like asking for help, but when it’s for my husband, I’ll do it.

Last Friday, after getting my kids out the door for school, they quickly returned to the house. “The car has a flat tire,” my daughter announced.

“I’ll drive you,” I responded. “Get in the van, and I’ll be out there in a minute after I check on Dad.”

My husband, Todd, is paralyzed due to ALS, so he can’t turn himself in bed. He was still sleeping when I checked on him, and I’d just turned him, so he’d be OK for the time it’d take me to drive to town and back. I took the kids to school in Todd’s accessible van, and on the way home, I called the tire shop to make an appointment that afternoon for my car. When I returned home, Todd called me right away.

Recommended Reading
An illustration of a speech device.

Wearable Cognixion ONE Axon named FDA breakthrough device

“Were you calling me for long?” I asked.

“I called you about five minutes ago, but you didn’t answer,” he said. “And now I just heard you come in.”

Sometimes he wakes in an uncomfortable position and gets anxious if he doesn’t know where I am. But that morning he was OK waiting for a few minutes. I told Todd what had happened as I adjusted his position, and then he slept for another hour.

Then I got him out of bed and made his breakfast. As Todd sipped his coffee through a straw, I looked at my calendar and remembered my son had a dentist appointment. I started stressing over the logistics of the day. Todd had a shower at 11 a.m., I had an appointment for my car at 1 p.m., and my son had a dentist appointment at 2:30. Normally, it wouldn’t be an issue because my mom is my backup, but she was out of town.

While Todd’s home health aide gave him a shower, I found an air compressor in my mom’s garage and managed to inflate the tire.

After Todd’s shower, I gave him his medications through his feeding tube. It was already noon, so I suggested that I feed him a quick lunch, but he wasn’t hungry yet. I explained that I might not have time to come home and feed him between getting the car fixed and taking our son to the dentist. After the dentist, I would need to pick up my daughter from school, so I might not be able to get home until 4 p.m.

“I’ll be fine,” Todd said. “Just get the tire repaired and then take Isaac to the dentist.”

I didn’t like the idea of Todd missing lunch, and he might need to use the bathroom, so I decided to phone a friend who lived near the tire shop. She was happy to give me a ride home and even visited with us while I fed Todd lunch. It was a good thing I called her, because otherwise I would’ve been stuck in town. The tire had a nail in the sidewall and wasn’t repairable, and a replacement wasn’t available until the next week.

Thinking back on the morning, I realized that I’d decided to ask for help when it became about Todd’s quality of life.

I’m reluctant to ask for help, but when I worked for a nonprofit with an after-school program, recruiting volunteer tutors was part of my job. Helping kids was a noble cause, and no one expected me to tutor all of the neighborhood kids on my own. And now my noble cause, like so many other spouse caregivers, is to provide quality care for my husband. But no one should expect caregivers to be on duty 24/7.

My mother helps us in many ways, and we’ve found others willing to help with various things, too. I recruit nighttime caregivers, and we depend on financial gifts to pay them a fair wage. With all that, a lot still falls on my shoulders, and sometimes I need to phone a friend.

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.


Sharon Kuncl avatar

Sharon Kuncl

I’m glad you are choosing to reach out to others and that you have a good support system. My husband had ALS and lived 16 years after diagnosis. Our children were grown and married when he was diagnosed at age 58. I admire your approach parenting and being a caretaker simultaneously. .


Leave a comment

Fill in the required fields to post. Your email address will not be published.