Putting a spotlight on the challenges of being a caregiver

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, that was for a long time, and then when he passed, I didn’t take care of myself, so I let a lot of things go that I should have been taking care of.” She spoke about it again last month, four days before she died on Aug. 25, saying she hadn’t paid attention to her own health while taking care of her husband.

Sandra Bullock also spoke about managing the care of her partner, who died of ALS. “I am lucky in that I had the means to pay for it, you know?” she said. She hired four nurses to care for him, but she still spoke of those years as being on a treadmill.

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The treadmill just keeps going

I relate to both women’s statements, as I’ve been my husband Todd’s caregiver for 16 years. Being on a treadmill is a good analogy. I’ve thought of life with ALS as a marathon, but that’s not as apt, because even though a marathon is a long race, it has a definite endpoint. In my life, the treadmill keeps going, mile after mile.

In the beginning, I thought Todd’s death was imminent, and my biggest concerns were my children losing their father at such a young age and my own grief of losing my husband. In our memoir, “Heavy,” which we wrote about coming to terms with the diagnosis, Todd said, “Kristin is too young to be a widow. She will lose the help of her partner. She will have to carry most of the load of caring for the kids while she becomes my full-time caregiver. Then she will lose me, her husband who loves her unconditionally.”

I still held that grief as the disease progressed and the timeline of caregiving lengthened, but then added to the grief was the persistent stress of managing a chronic disease.

I was caring for Todd throughout the day, but after Todd lost the ability to turn in bed, he also needed my help at night. After a couple years of not getting good sleep, being up and down with Todd all night, I was at my breaking point. We started hiring nighttime help and needed to fundraise to do so, as Medicare and Todd’s private insurance don’t cover caregiving.

We now have six hours of help most nights so I can get a stretch of solid sleep, but I wish I had the resources of Dolly Parton or Sandra Bullock to be able to hire more help. It is striking to me, though, that even with unlimited wealth, caregiving did not feel manageable to them either.

Perhaps it always feels like too much. When we have a full team of night caregivers, my stress level decreases, but I am always a bit on edge when my phone dings with a text. My first thought is whether that night’s caregiver is canceling, which will send me scrambling to try to find a replacement.

Last weekend, friends from Wisconsin visited, and I hired a caregiver for Todd on Saturday afternoon so we could hike to a waterfall and explore an old copper mine. Things took longer than I expected, so I tried to calling my mom to see if she could cover the gap until we returned. My mom didn’t answer her phone. I tried calling the caregiver to see if it would work to come back an hour later than planned. She didn’t answer either. I tried calling Todd. He didn’t pick up. My heart sank. Had something happened? Were they all at the hospital? Had Todd died?

I’m always living on the edge.

A few minutes later, the caregiver called back. Everything was fine, and she was available to stay an extra hour.

When I am rested, I can better manage Todd’s care. When I have the chance to get away from our home and get a break from being on duty, my stress level decreases. But because there is no cure, there is no getting back to normal. There isn’t a sense of stability when disease progression is ongoing. But the more help we can find, along with securing funds to hire that help, the more manageable life with ALS becomes.

Note: ALS News Today is strictly a news and information website about the disease. It does not provide medical advice, diagnosis, or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or other qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website. The opinions expressed in this column are not those of ALS News Today or its parent company, Bionews, and are intended to spark discussion about issues pertaining to ALS.