We’ve been searching for a used car for our daughter, who’s in college. It’s been an interesting distraction for my husband, Todd, and me, because our days are often mundane. Our daughter is busy with classes, work, and dance, but because Todd has ALS and I am his caregiver,…
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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Wake me up if Todd is in distress,” I said to his nighttime caregiver. “Of course,” she replied. It’s not something I typically say to one of my husband’s regular caregivers, but I felt on edge. I said good night and tried to get some rest, but my mind was…
I recently listened to an episode of Oprah’s podcast featuring Emma Heming Willis, whose husband, actor Bruce Willis, was diagnosed with frontotemporal dementia (FTD). She wrote a book called “The Unexpected Journey: Finding Strength, Hope, and Yourself on the Caregiving Path.” FTD and ALS are closely related: About…
After my husband, Todd, was diagnosed with ALS, I was shattered and desperate to connect with others who might understand the pain I was feeling. I searched online for a local grief group and found one that met at a nearby church. But when I called to ask about…
I’ve been helping my husband, Todd, ever since he was diagnosed with ALS more than 15 years ago. It started with me buttoning his dress shirts before he went to work, and then I helped him shave. Eventually, he needed my help with eating, toileting, showering, scratching itches, adjusting…
I wish I could shake the sadness I feel as my husband Todd’s caregiver after 15 years with ALS. There’s been a cloud over our lives since his diagnosis, even when his only physical symptom was a weak arm. Living with ALS has taken a toll on both…
Last week, my husband, Todd, celebrated his 55th birthday — a milestone we never anticipated after he was diagnosed with ALS at age 39 in June 2010. For his 40th birthday that October, I asked friends and family to send me pictures and their favorite memories with Todd, and…
“What do you think about having one thimbleberry design on one side of a mug and a different one on the other?” I asked my husband, Todd. We’d been brainstorming ideas for some print-on-demand items that I might try selling. Todd has had a fixed income ever since he was…
My frustration brought me to tears today, and I had to take a step back and remember to care for myself in addition to caring for my husband, Todd, who has ALS. Todd’s new wheelchair was delivered today, and like the one he’s been in for the past 11…
I caught up with an old friend last weekend. We were in a moms’ group when our now college-age children were just babies. She was visiting our small town because her son goes to college here. It’s hard to believe that we met nearly two decades ago — and harder…
Cooler-than-average temperatures these last few weeks are turning our maple trees red, reminding me that winter is just around the corner. Due to caring for my husband, Todd, who has ALS, I don’t often get out to see the best of Michigan’s Upper Peninsula — such as the shores…
A friend who stopped by for a visit last weekend asked my husband, Todd, “Anything new?” “Not really,” he said. “So no more choking incidents?” she asked. “There have been choking incidents, and Kristin has to clear my lungs every couple days,” he replied, “but you asked if there was…
Before my husband, Todd, had ALS, he enjoyed cooking. He often made omelets on Saturday mornings. He was skilled with a chef’s knife and cut ingredients quickly and finely before cooking the egg to perfection. I miss eating his omelets. Although I do all the actual cooking now,…
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