Joyful Sorrow - a Column by Kristin Neva

Every step of an ALS journey is difficult, but somehow we’re wired with the ability to forget much of the pain and remember the good. I wrote last week about our current challenge of finding nighttime caregivers. After getting all of the shifts covered, one of our caregivers…

“I feel like crying,” I wrote in my journal after a second caregiver decided to leave in December. “I can do 18 hours a day on duty, but I need to sleep sometimes.” For a few months, we had had a reliable team of nighttime caregivers for my husband,…

I feel a sense of accomplishment as this year ends. We made it. My husband, Todd, has hung on, with much effort to keep his lungs clear and filled with air, and we’ve kept persevering even as his ALS keeps progressing. Todd hasn’t had his breathing tested since December…

Every year, I make and sell Christmas wreaths. Much of my day is filled with caring for my husband, Todd, who has ALS, along with household tasks such as laundry, meals, dishes, and snow removal. But I often have a couple of hours each day — after I set…

I had a bad cold last week and am still recovering from it. Apart from concern over my husband, Todd, catching it, because he has ALS, the hardest part was trying to keep up with his caregiving when I was fatigued and needed to rest. Something surprised me, though:…

My husband, Todd, was asked about his health over the Thanksgiving weekend as we caught up with some old friends. He and I explained that his breathing has been declining recently, that ALS has taken most of his lung function, and he now has to eat with his…

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,…

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…