Does It Ever Get Easier?

“Does caregiving for ALS ever get easier?”

I pondered the question someone had posted on social media.

I couldn’t sleep for days after my husband, Todd, was diagnosed. I was consumed with anxiety and fear for the future. How was I going to parent our children as a single mom?

I had been signed up to teach preschoolers at a vacation Bible school the following week. Someone from church asked if I still wanted to do it, thinking it might be helpful to have a distraction. I declined. I couldn’t. I could barely function to take care of our 9-month-old son and 4-year-old daughter.

Coming to terms with the diagnosis was hard. I went to counseling, and the counselor encouraged me to train my mind to focus on “today” rather than looking too far into the future.

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For some, the future comes too quickly — muscle function deteriorates so fast that people don’t have time to adapt. We are on a slower track. Todd’s health has declined, and daily living has become increasingly difficult, but we’ve had time to find equipment and get into a routine. In some ways, life becomes more manageable, at least for a time, until there is another loss.

Maybe I’ve gotten stronger, or at least more accepting of life as it is. Or, perhaps I’m just in the middle of a plateau. Thinking back, I was near the edge of my coping abilities during several years of sleep deprivation, but as long as we can get nighttime caregivers, I’m optimistic I’ll survive.

Even though I’m no longer shocked by each loss, the ongoing grief doesn’t subside. I’m sad that Todd’s health continues to decline. That he’s often uncomfortable and in pain. That his muscles are wasting away before my eyes. That my once-capable husband must endure such suffering. That there’s no way to fight this — at least not one that’s available to us.

I don’t anticipate the future like I used to. We don’t plan family trips or dream about what we will do when the kids are older. All we have is the past and the present. And in the present, we are living in a land of shadows.

But there are moments when light shines through the shadow of ALS.

When I watch my daughter perform or play with the high school band, or recount amusing incidents from her day at school.

When Todd and I watch a funny show or work on a project together.

When I go on a walk and take in breathtaking scenes of natural beauty.

When I savor a cup of tea.

When I listen to an interesting or entertaining podcast.

When I talk on the phone with a friend.

When my son and I go mountain biking on a path cut through beautiful hardwoods, red pines, and white cedar, beauty surrounds us, and I feel the joy of motherhood. I concentrate to stay on the single track as I cycle up and down hills, roll over roots, and cross narrow boardwalks. In those moments, I am not thinking about ALS at all.

Biking trail. (Photo by Kristin Neva)

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