August 17, 2021 by Kristin Neva
When my husband, Todd, was diagnosed with ALS, I grieved the loss of our dreams and our future together, but I had no idea how hard daily life would become.
ALS caregiving spouses end up taking on a lot of roles. We advocate for resources and battle insurance companies. We learn nursing and respiratory therapist skills as we navigate feeding tubes, cough assist machines, suction machines, breathing assistance, and daily care. And then we end up needing to take over most of the household responsibilities. As much as our spouses would like to help us, they aren’t physically capable.
The household duties aren’t the hardest part of the disease, but over time, it becomes wearisome to do it all.
The Pressure of Caregiving Makes Self-care Difficult
Todd’s ALS progression has continued, but in some ways, life had gotten easier because our kids have gotten older and more independent, and they’ve been able to take on more chores. Our teenage daughter is good at cleaning, and she does an efficient kitchen island pickup. Our almost-12-year-old son is a whiz with a drill and impact driver, and he helps with basic household repairs. They both mow grass.
Todd misses cutting grass the most, and he wishes there was a way to strap his paralyzed body onto our zero-turn mower. He said if his neck weren’t so weak, he’d have somebody rig up his head array to control it. He also misses grilling.
Since I’m the primary cook, I try to keep things simple. I’ll grill foods that are quick — burgers, chicken breasts, or steak — but I draw the line there. As much as I love bone-in chicken on the grill, I don’t have the time or patience to move pieces of chicken around for 40 minutes. I’m a fan of “set it and forget it,” so we eat oven-baked chicken legs.
But one day last week, Todd had a hankering for barbecue chicken on the grill. He didn’t even ask me. I’ve turned down the suggestion too many times. Instead, he talked our son, Isaac, into letting him coach him.
Todd walked him through the steps. Isaac lit the grill. He had him find tongs, a basting brush, and a spray bottle. Isaac dumped the barbecue sauce into a bowl, and they headed out onto the patio with the chicken legs. Todd coached him in putting them on, basting at the appropriate times, and moving the legs around so nothing got burnt on the grill’s hot spots.
As I boiled corn on the cob and prepped green beans, I had this wonderful sense of our past life return from back when Todd was healthy and we cooked meals together. It felt like a breath of fresh air.
Isaac nailed the chicken. It was delicious. He liked it so much that he grilled again the next two nights. He finally said, “I’m not grilling tomorrow night. We’re having spaghetti.”
This article originally appeared in ALS News Today: A Taste of the Past.