caregiver

I recently connected with another spousal caregiver who wondered how I felt about life now that my husband, Todd, has had ALS for nearly 14 years. She’s just a few years into life with ALS, and her husband uses a power wheelchair and speech-generation technology and receives ventilation…

I’ve lived in the shadow of my husband Todd’s ALS for the past 13 years. My days have been clouded by the bitter reality of knowing that life will only get harder until it’s over. The daily stresses of my caregiving are intense: clearing his airway when he…

If we’d anticipated my husband, Todd, needing nighttime caregivers, we would’ve designed our accessible house differently, but we probably wouldn’t have been as happy with it. After Todd was diagnosed with ALS in 2010, he told me, “We need to sell the house. We need to move near…

More than a dozen years ago, my friend Jana helped me process my grief after my husband, Todd, was diagnosed with ALS. She and I walked around our neighborhood, pushing our babies in strollers as our toddlers rode their bikes. Jana listened and didn’t offer platitudes. We now…

Often, as we discuss the ravages of disease, we give short shrift to one of the most vital aspects of debilitating illnesses like ALS. We offer our sympathy, prayers, money, remedies, and sentiments, which are all very positive and appreciated. What’s missing, though? A little imagination and a broader…

One evening, I took my daily walk in the Nara Nature Park in Houghton, Michigan. As I made my way around a network of wooden boardwalks, through a marsh, and alongside a riverbank and lakeshore, I listened to a symphony of birds. I saw a few couples walking,…

“Kristin, if you can’t choose joy for yourself, then do it so Todd’s remaining days and years won’t be miserable,” I wrote in my journal a month after my husband, Todd, was diagnosed with ALS. “Do it so your kids can see how to live well, so they…

A couple weeks ago, one of our toilet tanks developed a crack and started leaking. I turned off the water, and while we waited for a new tank to arrive, we filled a bucket with water from the tub to flush the toilet or used the other bathroom. On Saturday,…

Lately, I’ve been pondering the many ways our lives have changed for the sake of safety, like tamper-proof packaging, airport screening, and two-step password verification. I get it. Identity thieves are everywhere, so are scammers, along with the just plain crazies. We might be a little safer, but I…

Our daughter, Sara, is working on several pieces for an upcoming choir festival. One selection is the song “My New Philosophy” from the musical “You’re a Good Man, Charlie Brown.” The other evening, as our family gathered for dinner, Sara sang the lyrics in which the character Sally tries…