My husband and I partner to handle the stress of life with ALS

Lines from a Shania Twain song have been running through my head the past few days: “You’re still the one I run to/ The one that I belong to/ You’re still the one I want for life.” The lyrics remind me of how my husband, Todd, and I partner together amid the stress of living with ALS.

The past few weeks have been rough for us since Todd caught a respiratory virus on top of dealing with quadriplegia and reduced lung function from ALS. That alone would’ve been enough to put me on edge, as his primary caregiver. But life has a way of piling on.

I’ve been having my own health issues with migrating back pain and other problems that have become more acute over the past few months. Test results suggested that my symptoms stem from an autoimmune response, so there isn’t a quick or easy fix. It’s another layer of uncertainty added to my already full plate.

And then one of our new caregivers gave notice that she’s moving out of state, and I’m scrambling to find a replacement. Reliable help is necessary for my mental health and Todd’s well-being, so now I’m back to recruiting someone new for this night shift. Finding dependable people who are also willing to work nights isn’t easy, and the constant turnover is exhausting.

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On top of those major issues, we’ve had to deal with a number of inconveniences. The remote control for Todd’s adjustable bed broke. We received an erroneously issued 1099-NEC form after we’d filed our taxes. I had to figure out if a particular healthcare provider was in our insurance network. We worked to add my mother to our mobile phone account while keeping her old number.

Each of those annoyances would’ve seemed small in isolation, but along with the major issues we’re handling, it all added up. Life often feels overwhelming — and that’s not even touching on the political turmoil in the country, the wars and geopolitical conflicts, and natural disasters from fires to floods, some of which touch the lives of people we know.

Piles and piles of problems, but I still have my partner.

Teamwork

Even with the progressive symptoms of ALS for Todd and the weight of his care on me, we work together as a team to address issues big and small.

Todd did our taxes, which are complicated because we handle the payroll taxes for our caregivers. After we received the late 1099-NEC, Todd researched the tax law and drafted an email. The organization recognized its mistake and corrected it. Meanwhile, I helped my mom upgrade her phone, and Todd managed to get her old number transported to our account — and then he spent hours on the phone with customer service getting that old number assigned to her new phone.

We work together on other things, too, like managing house projects. He often orders parts and supplies and then coaches our son and me on getting the project done. And Todd is equally invested in raising our children.

When we got married, neither of us envisioned what a difficult future was ahead of us. ALS has made our life hard in many ways, but we’re still partners and I’m thankful he’s still here with me. He’s still the one I run to, the one that I belong to, and the one I want for life.

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