Time away from caregiving for my husband was restorative

Last week, my kids and I drove from Michigan’s Upper Peninsula to the Milwaukee area for spring break. I have many fond memories of living there with my husband, Todd, more than a decade ago, before he got ALS. It’s too difficult for him to travel now due to significant progression of the disease, but we still wanted our children to have a spring break trip, and I needed a break from caregiving.

Finding caregivers is always a challenge, but I managed to line up people to care for Todd for five days. My mom was available to help, and Todd’s sister came over from Minnesota, but he didn’t want either of them to assist with personal care. They made meals and fed him, adjusted his arms, and scratched itches, but I found others to help Todd in the bathroom.

Todd’s nighttime caregivers stayed late, and I had daytime caregivers arrive in the mornings, get him washed up, use the overhead lift to get him out of bed, and stay until after he sat on the toilet. A nurse friend volunteered to stop by later in the afternoons to help him in the bathroom for five minutes, and we paid another caregiver to stop by in the evenings.

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Should we stay or go?

Trip planning always feels tentative. If Todd or any one of the caregivers had gotten sick, I would’ve had to cancel. I prepared our kids for that possibility, but by the morning of our planned departure, the trip was still on — though I felt uneasy about leaving because Todd had a headache for a week and then developed double vision.

Todd’s physical therapist had been off the previous week, and we hoped Todd would feel better when the therapist was able to come again to work on Todd’s neck. I suggested a telehealth appointment with Todd’s primary care doctor, but Todd declined. He wanted to give it time. There was nothing I could do for my husband that his sister and my mom couldn’t handle, so the kids and I embarked on our six-hour drive south.

While en route, I asked my mom to make an appointment with Todd’s optometrist, but they couldn’t get him in for several weeks. I called my optometrist, but she was booking three months out. She put him on her waitlist but suggested that Todd see an ophthalmologist. I left a message for the only ophthalmologist in town. The next morning I received a call from the office.

“It usually takes months to get an appointment,” the scheduler said, “but we just had a cancellation. We can get him in next Monday.”

“We’ll take it,” I said, and then I texted Todd. After a couple more days of double vision, he was ready for a medical examination. My mom and his sister had been putting patches over one of his eyes, but he was getting frustrated.

Medicine for my soul

The kids and I had a packed schedule of big-city activities. We raced go-carts, hit balls at Luxe Golf Bays, and jumped around at a trampoline park. We walked through the indoor gardens of the Mitchell Park Domes Horticulture Conservatory, went shopping, ate at restaurants, and attended ComedySportz, an interactive improv comedy experience. We drove down to Chicago for a day, where we walked the Magnificent Mile and went up 94 floors to the 360 Chicago Observation Deck for a spectacular view of the city.

For much of the trip I was able to compartmentalize my life and not think too much about ALS, but I got teary-eyed when old friends asked how Todd was doing. I told them about the latest development with his eyes.

“He’s discouraged,” I said. “His vision was one thing he had left.”

I kept checking in with Todd through text. “Any updates on your health?” I asked.

“Still have ALS; double vision,” he replied.

On the trip, I had bittersweet moments when we visited some of the places Todd and I used to go. I have fond memories of happy times, but I’m also reminded of what we lost — what we would’ve had if Todd hadn’t gotten ALS. But conversations with old friends and the time away from the tedium of daily caregiving was medicine for my soul.

We packed so much activity into five days that by the time we headed for home, I was ready to leave the busyness and traffic of the city and return to my quiet, homebound life in the country.

It was good to see Todd again. I can’t miss him when I’m always with him. And Todd was happy that his sister catered to his tastes, preparing meals that no one else in our family likes, such as sausage gravy over biscuits.

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