What do we do when ALS caregivers become injured or sick?

It’s been more than four years since I was a caregiver for my late husband, Jeff, who died of ALS in May 2020. Caring for Jeff is the hardest and scariest thing I’ve ever done, a fact that took me years to acknowledge out loud because I believed that saying so betrayed him.

It’s also true that caregiving was, in retrospect, the most rewarding thing I’ve ever done because I loved him and the experience brought us closer in many profound ways.

I’d never really considered what being a caregiver meant until I became one. And like so many unpaid caregivers in the United States, I learned as I went, and it wasn’t always pretty.

Recommended Reading

June 11, 2024 News by Andrea Lobo, PhD

Eli Lilly to develop, market ALS therapy for UNC13A function

What shocked me most about caregiving was the sheer physicality of it all. Jeff weighed 260 pounds at diagnosis, and I was exactly half that. The Ice Bucket Challenge aside, I didn’t know much about ALS when our local neurologist began gently mentioning it as a possible diagnosis. While I understood ALS was a terrible disease, I didn’t know the impact it can have on the body. I never thought about how a person living with ALS ate, bathed, got dressed, or got into and out of bed, a wheelchair, or a toilet.

Like all caregivers in ALS, I learned to complete these procedures, and dozens more, as safely and competently as I could. Whether it be a family member, friend, paid professional, or some combination of those three, people living with ALS need some level of assistance as the disease progresses, and these carers need to possess, in equal measure, physical strength and dexterity.

What a caregiving crisis means

That’s on my mind today because I broke my arm last week. I fell while walking on uneven ground and instinctively used my wrist to break my fall. The break is a minor inconvenience, and I’m grateful that my arm is expected to heal well over the summer.

It’s interesting, though, that while I was briefly on the ground from my fall, I started thinking about how I’d get things done — shower, brush my teeth, open bottles, or use the laptop to write my column. It turns out that none of those things have been easy to do, but they’re manageable with some patience and ingenuity.

What wouldn’t be possible, however, is caregiving, and that fact alarmed me last Friday even as I lay on the ground from my fall.

If Jeff were still here and I were injured like this, we’d be facing a crisis. As his primary caregiver, I wouldn’t have been able to operate a Hoyer lift, empty a cough-assist machine, or administer a meal through a feeding tube. Too many elements of those tasks require uncompromised physical ability and certain fine motor skills, which I’m lacking right now. Our family and friends would’ve rallied around us, but with difficulty.

This week, I read anew about the caregiving crisis in this country. A 2020 study conducted by AARP and the National Alliance for Caregiving reports that today more than one in five Americans are caregivers, having provided care to an adult or child with special needs at some time in the past year.

In the study’s research report, I learned that “while many caregivers feel their role has given them a sense of purpose or meaning (51%), these positive emotions often coexist with feelings of stress or strain. Caregivers report physical, emotional, and financial strain, … fewer caregivers report their health status as excellent or very good, … and a greater proportion report being in fair or poor health” between the current study and its previous iteration in 2015.

For families living with ALS, the implications of even a temporary loss of caregiving create at best unsafe and at worst devastating situations for our loved ones with ALS. It can also create danger for ourselves, as most of us caring for a loved one have needed to do so while sick, hurt, or otherwise unwell. ALS takes no pauses for sinus infections, depression, or broken arms.

I often like to conclude my columns with a lesson I’ve learned or a reflection I’ve gained from those living with ALS and their families, including my own. When it comes to caregiving, though, that’s hard to do. We have many pressures and few solutions.

My broken arm will heal, but it gives me concern to consider how my friends who are caregiving now would manage through their own illnesses and injuries should they occur. Right now, they rely on hope and luck, neither of which is a certainty or strategy in ALS.

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.