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

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:

• Recruited and trained a care team
• Secured medical equipment and resources
• Researched Medicare guidelines and petitioned upper management of healthcare providers when allowable equipment and resources were not being provided
• Learned caregiving skills, such as handling a feeding tube, using patient-lift devices, and administering lifesaving manual cough assists

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.

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