A respite from caregiving to travel gave me a new perspective on home

I planned an end-of-summer trip to spend time with my daughter and friends near Milwaukee, Wisconsin, where my husband, Todd, and I lived when he was diagnosed with ALS 16 years ago. I needed time away from being constantly on duty. The trip also gave me a new perspective about home.

We were grateful that Todd’s sister, Val, came from Minnesota to stay with him. I felt at ease knowing she was taking care of him and our home while I was gone. Still, I didn’t want her to carry too much, so I extended Todd’s nighttime caregivers and hired help for his morning routine, which is the most demanding part of his care.

Even with that support, Val was on duty about 13 hours a day. I wouldn’t ask one person to take on the 18-hour shift that I do daily, which made me think about how I should try to take more time for myself.

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This trip was quieter than the spring break trips I’ve taken in the past with our kids. My daughter spent her days at a dance convention, and I had time on my own. I went for walks, saw a few old friends, and had stretches where I wasn’t responsible for anything.

Being away from Todd for that long made me miss him. When we’re together nearly every waking hour, our relationship doesn’t have the same energy that comes from reconnecting after being apart.

Harrington Beach on Wisconsin’s Lake Michigan. (Photo by Kristin Neva)

While I was in Wisconsin, I drove past our old house and felt nostalgic for our time before ALS. I longed for what could’ve been had Todd not gotten ALS. It felt like a different life, though, and no longer felt like home.

The accessible country house we built in Michigan after Todd’s diagnosis is our home now. It’s where we raised our children, and it’s where Todd is.

My daughter made me a playlist for the drive that included the song “Home” by Edward Sharpe and the Magnetic Zeros. As I drove along the freeway, I sang the chorus: “Home is wherever I’m with you.”

I texted Todd a few photos from the shores of Lake Michigan, where I visited a lighthouse with a friend. I texted more photos of my daughter and me at Harrington Beach State Park, a place Todd and I frequented when we were dating — and where I realized that our relationship might have staying power because we didn’t need to fill the silence as we sat on the dunes and watched the waves roll in.

The song’s lyric stayed with me as I made the drive north to Michigan. When I crossed the Portage Lake Lift Bridge and made my way onto our island, I felt like I was home. In my country house, I kissed Todd, thankful that even though life with ALS is difficult, I can still come home to him.

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