“I’ve noticed a decline in my mental health this week,” my husband, Todd, observed after a week of being quarantined in his office. Our daughter had a bad cold, and Todd hoped to avoid the bug that would have threatened his life. He rarely leaves our home, anyhow, but…
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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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…
Our family had another close call recently that caused us to our reexamine our methods of emergency communication. Due to ALS, my husband, Todd, is completely paralyzed in all his limbs and has low lung function. He is dependent on noninvasive ventilation to breathe and to talk. Without…
A couple of weeks ago, I lined up a daytime caregiver for my husband, Todd, so I could take a day trip with our 14-year-old son to ski and snowboard. During the two-hour car ride, he introduced me to the “Bellied Up” podcast, a call-in advice show with comedians…
After years of living on the edge of life and death with my husband’s ALS, I sometimes wonder if my body has quit reacting to stress in a normal way. Trying to squeeze in lunch before I ran to town for our 18-year-old daughter’s doctor appointment, I reheated…
Last Friday night, I pulled a prescription bottle out of the cupboard, preparing to take my daily antidepressant — just one half-pill of the smallest dose, but that’s been enough to take the edge off and help me cope with the ongoing grief of living with my husband’s…
Since the point where my husband, Todd, needed a wheelchair because of his ALS progression, he’s had to navigate a less than perfectly accessible world. Todd is particularly challenged in our old community, which was built up long before the passage of the Americans with Disabilities Act in…
We often feel isolated now that my husband, Todd, is homebound because of ALS. He’s paralyzed with weak lung function, and it’s just too difficult for him to get out. So we were delighted when some friends planned a game night with us at our home last weekend. We…
My husband, Todd, is homebound due to ALS and I am his primary caregiver. That often makes our lives feel small. While I appreciate the small joys of life at home — watching birds perch in the tree outside my kitchen window, enjoying a cup of loose-leaf tea,…
As my husband Todd’s ALS progressed, trips to the doctor’s office became increasingly difficult. When he was still walking, we used to travel four hours from northern Michigan through Wisconsin to the closest ALS clinic in Duluth, Minnesota. We turned those trips into mini-vacations, bringing the kids along and…
Once when my daughter, Sara, was a baby, I made a mistake that led to a moment of sheer panic. After setting up her jogger stroller next to the car and strapping her in, I dug through the diaper bag that was still in the vehicle to get some…
One of my favorite Christmas gifts this year was balsamic vinegar — two bottles, actually — that my husband, Todd, gave me. Todd has ALS and is paralyzed, so he spends time watching YouTube videos about various subjects. A couple months ago, he came across a video that explained…
A memory from 12 years ago popped up on my Facebook feed. It was a video we had made for a benefit my husband’s co-workers organized for him after his ALS diagnosis. “When I was diagnosed I thought of Danny,” Todd says at the start of the video, accompanied…
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