Why it’s vital for caregivers to set boundaries

As a spousal caregiver, knowing my limits keeps my husband and me safe

Kristin Neva avatar

by Kristin Neva |

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My 13-year-old son and I started mountain biking a few summers ago during the pandemic. He quickly became a much more aggressive biker than me, tackling jumps and getting air while I try to keep my tires on the ground. He easily outpaces me, often waiting at trail forks or the bottoms of hills.

“Mom, you need to stand up more,” he frequently tells me. But I bike the way I did growing up, sitting on the saddle while pedaling or coasting.

When I enrolled my son in a mountain biking class for teenagers this summer, I decided to join the parent class. In my first class last week, I learned techniques such as leveling my pedals and properly positioning my feet while descending — front foot wedged forward with the heel down and back foot with the heel up. I learned how to stand on the pedals and flex my knees while biking downhill. I learned how to shift my weight to stay balanced over the axle and to lean the bike as I round corners. I was excited to be learning the correct way to do the sport.

A few days later, I put my new skills to the test. I rode a lot more aggressively than I ever had before, allowing me to keep up with my teenager to some extent, but I didn’t feel quite in control and ended up running into a small tree. Thankfully, I didn’t get hurt.

However, the next few days my arms and neck muscles were sore and tight. Discussing my experience with a friend, he recounted an incident in which he broke his collarbone while mountain biking. That felt like a wake-up call. I’m middle-aged, not a teenager, and I need to know my limits.

This made me think about ways that caregiving spouses need to know their limits, too.

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Sometimes people with ALS are resistant to using equipment like a Hoyer floor lift or an overhead lift, but manual transfers may hurt the caregiving spouse. It’s not easy to set boundaries, but it has to be done. Caregivers sometimes have to say, “If you want me to help you, we need to use equipment so I won’t get hurt.”

After two years of sleep deprivation, I realized that I wasn’t going to be able to handle being up and down with my husband, Todd, all night. Either he would need to take medication and learn to sleep on an alternating pressure air mattress, or we’d need to get nighttime help. He didn’t want to take medication that would depress his breathing, and he couldn’t sleep on an alternating mattress without it, so we had to fundraise to hire help.

I’ve written before about how my husband was resistant to the idea of home health aides helping him shower, but when I wasn’t able to do so due to an injury, an aide helped him, and Todd realized it wasn’t so bad.

Sometimes caregivers realize they can no longer provide adequate care at home. We all draw that line at different places depending on resources, health, age, and medical interventions. Some can handle trach care at home, while it’s too much for others.

We all need to figure out where those limits are. We all have different abilities for caregiving and mountain biking.

The next time my son and I went biking, I went back to my old method, perched on the bike saddle most of the time, even going downhill. That’s all this nonathletic middle-aged woman can do.

We do what we can.

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.


Shae Tuggle avatar

Shae Tuggle

Thank you so much for this article. I sit here with tears rolling down my face as I read the article. My husband was diagnosed 3/22. I told him I would be with him for the good, the bad, & the ugly. At first his progression was very slow. From 11/22 to current, he has been on a downhill spiral with no signs of stopping. He is in Relyvrio & takes Basis. He was very apprehensive about home health or other caregivers coming into our home. I, stupidly, made him a promise no one would ever assist him with bathing & toileting. I blew out my L4 & L5, but I kept on going. I was getting 2-3 hours of sleep at night & didn’t know f I were coming or going. After being pushed by family & friends, I looked into nighttime care. Since transitioning to Hospice, my husband does sleep more, but I got him to agree to nighttime care as long as I kept my promise to handle any situation that require someone else seeing his private areas. So, I go to bed & the caregiver wakes me up when this happens and the I go back to bed. It has been a lifesaver for me. I was no good for me, so how could I be good for him? I still bathe him with assistance from his sister. We work it out that she sees nothing he doesn’t want her ti see. Most times, I have assistance with toileting & when I do, we have a system worked out where the other person sees nothing. It’s not the best plan of action, but for now it’s working. I know that sooner rather than later, I’m no longer going to be able to keep my promise to him & I feel so guilty. We have talked about it & he says he understands, but I’m still struggling. Your article made me realize us caregivers have a peace about setting boundaries.

Kristin Neva avatar

Kristin Neva

It took awhile for my husband to come around to the idea of others helping in the bathroom but when he did he realized it wasn't so bad--for the CNAs it's just a job & they scrub harder than me. He still doesn't have family or friends help with those areas but I'm glad he came around to medical people helping. I hope you can let go of the guilt and know that you are only human and can only do so much.

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