This morning my husband, Todd, asked me how many boxes of medical gloves we had left, so I took an inventory. We stock medium, large, and extra-large, because different caregivers prefer different sizes. “I think we need to order more large,” I said, “There’s four boxes left.” I paused as…
Joyful Sorrow
— Kristin Neva
Kristin Neva is an author, mother of two, and caregiver for her husband, Todd, who was diagnosed with ALS in 2010 when he was 39 years old. Knowing they would need family support, they moved to Upper Michigan and built an accessible home on property next to Kristin’s childhood home. Kristin enjoys spending time outdoors, especially on the shore of Lake Superior in the summer. Todd no longer has use of his limbs, but he stays active working on projects on his computer using adaptive technology. They try to find joy in the midst of sorrow as Todd’s health declines.
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Fall has arrived, and the days are cooler here on Michigan’s Keweenaw Peninsula. The maples are showing hints of red, and we haven’t seen a ruby-throated hummingbird for a few weeks. I suspect they’ve all headed south for the winter. Last spring, we put decoy swans on the pond to…
A few months after my husband Todd’s ALS diagnosis, we traveled with our children from our home in southeast Wisconsin to meet up with Todd’s sister and brother-in-law at a rented condo overlooking Lake Delton in Wisconsin Dells. We had recently returned from Mayo Clinic in Minnesota, where Todd…
The challenges of caregiving have been in the news lately. Last year, Dolly Parton appeared in a video following the death of her husband, Carl Dean, to quell rumors about her own poor health after the cancellation of some shows. She said, “Back when my husband, Carl, was very sick,…
My husband, Todd, and I celebrated our 23rd wedding anniversary this week. We’ve spent 16 of those years with ALS since Todd’s diagnosis in 2010. I’ve been thinking recently about how we have found meaning within this difficult life we’ve been living for so long. Todd and Kristin…
Nine years ago, and seven years into my husband Todd’s ALS journey, we were still trying our best to get out and have a normal life. That fall, our 8-year-old son came home from school with a flyer from a local church. They were hosting a Harvest Festival and…
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…
My husband, Todd, and I recently finished watching the NBC series “The Good Place,” a comedy that explores some of life’s big questions about meaning. In the season three finale, the character Eleanor Shellstrop searches for the answer that will make everything make sense as she tries to…
My brother and his family visited from out of town for a few days, so I planned a couple activities away from home and hired a caregiver for my husband, Todd, who has ALS and is paralyzed. Now that his neck is very weak and he needs noninvasive…
Last week, the winds shifted, bringing plumes of smoke from wildfires in Minnesota’s Boundary Waters and Canada across Lake Superior to Michigan’s Keweenaw Peninsula. While our lives and homes are not at risk, unlike those in the areas burning, the smoke still affects daily life. It’s especially concerning for people…
ALS has taken a lot, but I am thankful I still have my partner in parenting. Our teenage son came home with an injury one morning last week, and I took one look at the gash on his face and thought it needed stitches. My husband, Todd, concurred.
I walked with our dog, Comet, on a trail in the woods behind our house. The woods felt cool out of the hot sun. Light filtered through the trees overhead as I breathed in the rich smell of summer earth and pine. A ruffed grouse crossed our path, and…
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