Preparing for the future after my role as an ALS spouse and caregiver

A columnist draws on life experiences as she updates her résumé

Kristin Neva avatar

by Kristin Neva |

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A few weeks ago, I was catching up with a friend of mine. Among other topics, we discussed what I might do for work after my husband, Todd, is gone. He has ALS, is paralyzed, and needs noninvasive ventilation. His lung function is quite poor, and I could lose him at any time if he happens to catch a bug or his lungs inexplicably fill up. I could lose him tomorrow, or he could have years.

When he was diagnosed more than 13 years ago, I’d already left the workforce to stay home with our two children — our then 4-year-old daughter and 9-month-old son. As the kids grew and gained independence, Todd’s health declined, and he became dependent on me as his full-time caregiver. At this point, I can’t return to the workforce because it’d cost more to hire caregivers for Todd than I could make working. But when Todd is gone, I’ll need to find a job.

It’s overwhelming to think about reentering the workforce, having been out of it for so many years. I’ve thought about different career paths, such as working at the local university or going back to college with an accelerated certification program to teach elementary school, but I can’t make plans when I don’t know the timing.

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My friend encouraged me. She told me she could introduce me to people at the university because her husband works there. Later that day, she sent me an email asking if it was morbid to consider updating my résumé. She thought I could draft an impressive list if I were to include all my experiences dealing with my husband’s ALS over the last decade.

I thought about all that I’d learned by caring for Todd and navigating our healthcare system, and then summarized my experience as a caregiver and advocate:

My friend also wondered if Todd would want to help me with my résumé. I demured. It was one thing for she and I to brainstorm, but I hesitated to ask Todd to enter that headspace.

A week later, Todd was having trouble breathing after a low-key day. His diaphragm and chest muscles had been getting tired on days when he’d spent a lot of time visiting with someone, but his having trouble on a day without much activity was alarming.

He said he felt like his lungs had gotten significantly weaker, and he wouldn’t be surprised if he had less than two years left. I told him to try to hold on until after our eighth grade son graduates from high school.

I started to cry, and then forced a smile because crying gives me a headache.

“It will be harder, and then it will be easier,” Todd said.

My tears flowed, and after I composed myself I fixated again on life after Todd, including finding a job. I decided to ask him for help. “Would it be weird for you to help me with my résumé?” I asked.

“Not at all,” he replied. “It would be weird to help you create a Tinder profile.”

I emailed him my résumé, listing the dates of my role as ALS caregiver and advocate as 2010-2028.

Todd worked on punching up my résumé and emailed it back. “I was glad to see you gave me a few more years,” he said.

I’m not counting him out.

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.


Sherry LaSalle avatar

Sherry LaSalle

I worked as a nurse navigator before ALS for breast cancer. Some hospital systems have lay navigators as jobs. Check with certified ALS programs, or hospital libraries. Develop programs for what to do next and promote them in the community and support groups. You can offer them to caregivers or ALS patients. Get grants. You are a valuable resource!

Kristin Neva avatar

Kristin Neva

Thanks for the ideas!

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