Time away from home and ALS fuels me to keep going

My husband, Todd, and I used to enjoy heading out on adventures, whether it was driving an hour to Chicagoland for an architectural tour of homes designed by Frank Lloyd Wright or flying halfway around the world to Taiwan and visiting a traditional tea house in a small mountain village. But now Todd is paralyzed from ALS, and he needs breathing support. He’s more comfortable staying home, and he only goes out for medical appointments.

Todd’s traveling days are over, but we have two teenagers, and we’d like to help them develop wanderlust. Also, our daughter is a junior in high school, and I’m keenly aware that her time at home is limited. So for spring break, I decided that the kids and I would go on a nine-hour road trip to downstate Michigan. Our daughter could check out a college, and we’d all experience some big-city fun.

Besides, I was feeling burnt out with caregiving. It wouldn’t be such a hard job if it were only eight or 10 hours a day with weekends off, but it’s all day, every day. I was exhausted, and I needed a break.

Todd’s sister agreed to come from Minnesota and stay with him, and my mom, who lives next door, would help, too. I hired other caregivers to get him in and out of bed and take care of toileting. I lined up several people to be on call in case Todd needed his lungs cleared with a manual assist cough, which was the scariest part about leaving. I’ve had a lot of experience clearing his lungs, and I don’t like being more than 15 minutes away in case of an emergency.

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The night Todd’s sister arrived, and two days before the kids and I planned to leave, Todd’s lungs started filling with mucus. I showed Todd’s sister the technique to clear his lungs, but they kept filling. We needed somebody with more strength, so I called a neighbor. I showed him what to do, and he was able to get the mucus out. I added him to Todd’s emergency contacts list, while I wondered if I should even go on the trip at all.

I needed the break, but Todd needed me, too. I feel like it’s been touch and go the past few years, ever since Todd lost the ability to cough or to clear food from his throat. Life is tenuous. There was a possibility Todd wouldn’t survive the week without me.

But Todd said I should go. I’d prepared as best I could. I’d trained Todd’s sister. My mom has some experience helping Todd. A competent daytime nurse would come every morning. Four people were on call, and other caregivers would be helping.

The kids and I drove to the Detroit area on Sunday. That week we visited the Henry Ford Museum of American Innovation, where we saw presidential limousines and sat in the bus in which Rosa Parks had refused to give up her seat. We went shopping at an outlet mall. My daughter picked out a prom dress, and my son got some new athletic gear. While our daughter sat in on some classes at a college, my son and I went to Topgolf. We walked around and shopped at a high-end mall and rode go-karts.

Kristin and her daughter, Sara, at a mall. (Courtesy of Kristin Neva)

I sent text messages to Todd about our day’s activities, and I talked to him each evening on the phone. It felt good to relate to him solely as his spouse without needing to wipe his nose or help him on the toilet. I didn’t sleep as well as I’d hoped — years of being on call as Todd’s caregiver have made me a light sleeper, so the banging of hotel doors and other unfamiliar sounds woke me up at night. But I enjoyed my relaxed mornings, sipping tea and having somebody else cook my breakfast at our hotel’s omelet bar.

Overall, it was a lovely trip. It was mentally stimulating to see new things, and it rejuvenated me for caregiving.

We drove back on Thursday, and upon arriving home, Todd’s sister met me at the door, saying, “Todd says he loves you, and he has to pee.”

There was no easing back into caregiving. I helped Todd in the bathroom and wiped his eyes. Later that evening, I helped him cough.

Being away from home and then coming back made me realize how much I do. It also highlighted how far the disease has progressed; I noticed anew how labored Todd’s breathing is when he isn’t using his noninvasive ventilator. Because I’m with Todd all the time, I sometimes don’t notice the severity of his disability.

Now I’m back in our home routine, and those fun memories the kids and I made are fueling me to keep going.

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