Dealing with loss, both big and small, in life with ALS

There are both big and little losses that come with ALS, for the person with the disease and their family. Each stage of the disease brings something new to grieve.

When my husband, Todd, was diagnosed in 2010, one of our biggest losses was the future that we had imagined. We were in the season of raising young children, looking forward to activities and vacations with them. That year, Todd’s arms were weak, and he couldn’t button his shirt or shave his face without my help, but life still felt manageable.

If the disease had stopped progressing, we could have adjusted to a new normal, but with ALS, the losses kept coming, and he eventually lost his ability to walk.

Recommended Reading

October 14, 2021 Columns by Kristin Neva

Navigating Interventions With the Ongoing Losses of ALS

Ongoing grief

I found an old journal entry from 2014, a year of heavy losses, where I had written, “It’s hard to believe that a year ago I could leave Todd with his mom and sister and fly to get our accessible van. Independence in the bathroom was a big loss for both of us.” He didn’t want his mom or sister to help with toileting.

That same year, Todd lost the ability to turn over in bed, and nights became exhausting for me. I reached my breaking point two years later, and we finally started hiring regular nighttime help.

When the world shut down in 2020 due to the COVID-19 pandemic, our lives shrank along with everyone else’s. But when things opened back up, we couldn’t return to what had been. By then, the disease had progressed so much that Todd wasn’t comfortable leaving the house. We lost the ability to attend our kids’ events together. I became the solo parent at dance performances and football games. I recorded videos for him to watch later, wishing he were beside me.

I also grieved the trips we never took. We used to talk about vacations we’d take with the kids when they were older, like hiking in national parks or escaping the winter snow.

Since 2022, Todd has needed a noninvasive ventilator, which has been another loss of freedom. He has since faced a continual decline, but not dramatic losses like speech or swallowing. I dread the thought of him losing those two abilities.

Lately, though, I’ve noticed smaller losses. They aren’t as crushing, but they still sting.

I felt disheartened this winter whenever I received an email asking for parents to volunteer at my son’s high school swim meets. In a different life, I would’ve signed up to collect admission fees or time races. I used to volunteer in my son’s kindergarten classroom when Todd’s needs weren’t as involved. Now, I count it as a win if I can simply attend the home swim meets. I arrive late and leave early so I don’t leave Todd for too long, and I plan my schedule to at least see our son dive.

I also grieve not having the kind of home that both Todd and I grew up in, where guests were always welcome. He and I used to bring our friends, including each other when we were dating, to our parents’ homes for long weekends. I assumed we’d create that same atmosphere of hospitality for our kids. I’d like for my daughter to be able to invite her college friends for a weekend getaway, but we don’t have a good setup for hosting overnight guests.

When we built our accessible house, we needed to keep it affordable, so we planned one small extra room as an office that would double as a guest room. But ALS forced us to reconfigure our home. We ended up needing to use the office as another bedroom after we started hiring nighttime caregivers. And because I need to sleep when the caregivers are on duty, we keep quiet hours while they’re here, which puts a damper on late-night games, movies, and sleepovers.

These are small losses compared with losing mobility or independence. They are small compared with what is still coming, like swallowing and speech. But the small losses still prick at my heart.

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.