Being an ALS caregiver was as hard emotionally as it was physically

When my late husband, Jeff, was diagnosed with ALS in the fall of 2018, there were many unknowns. We didn’t know how fast or slow his progression would be. We didn’t know the course that ALS would take in his body, or when we would need interventions like a feeding tube, a wheelchair, or an eyegaze computer. We understood on a larger scale that his body would change and we needed to be prepared.

What I found over time was that while the physical aspects of caregiving — transferring Jeff from bed to scooter, helping this previously physically strong man put on his socks and shoes each morning, preparing and administering liquid meals through a tube in his stomach — grew scary and relentless, the emotional aspects bore much more weight.

Many well-intentioned people romanticize caregiving, perhaps out of compassion or even admiration of one person caring for another so attentively. While sentimentally that may make sense, those who are deep in the throes of ALS caregiving will understand that it’s exhausting, messy, scary, and painful, emotionally as well as physically.

Here are four things I wish I’d known about the emotional aspects of ALS caregiving before Jeff and I began living with his ALS.

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Diagnosis was one of the worst parts

Jeff Sarnacki and Juliet Taylor sleep at the end of a vacation in June 2019. (Courtesy of Juliet Taylor)

Jeff’s ALS diagnosis felt like flipping a light switch on our future. Over the course of a few months, we went from optimistic and hopeful to feeling as if a heavy door had been closed on our life ahead. In those first few awful weeks after we heard the words “this is ALS,” we were both disconsolate.

I understand now that nothing I, or anyone, could have done or said would have helped. It was a shock to our systems, and our bodies and brains needed time to process, both together and separately. It was one of the worst times of our lives, and it was immediate.

Planning ahead is a blessing and a curse

Once Jeff and I accepted the reality of his diagnosis — I won’t say came to terms with, because I’m not sure we ever did that — I embarked on a personal mission to learn everything I could about ALS caregiving and to acquire everything I thought we’d need.

I took a certified nursing assistant class at the local community college, attended a caregivers’ conference, and read everything I could get my hands on about ALS. While aspects of this were helpful — for example, I learned how to use a Hoyer lift and other medical equipment, and I learned about nutrition in ALS — in retrospect, I think my quest for immediate knowledge and answers was fueled by anxiety and fear. I somehow felt I could stay ahead of ALS, which was never possible.

While I don’t regret learning about the disease early, I wish I’d stayed more present in the moment and processed my feelings along the way. Most of what I needed to know I learned through trial and error as Jeff lived with the disease, or through resources from our ALS clinic, other ALS families, and organizations like I AM ALS and the ALS Association.

Entertain angels unaware, and let others go with grace

This was the hardest part. For many people living with illness, a sad reality is that some people run from their pain, and others run toward it. In many cases, it’s not those you expect.

Jeff and I encountered angels in human form who showed up with groceries, good company, and kindness, deepening those bonds. I found that many of them had already been through their own pain and provided compassion naturally. Other people felt fear and could not be around us.

I tried to accept the new gifts while giving grace to those who couldn’t provide them, and honestly, the blessings outweighed the pain. A silver lining is that I, like many other caregivers, now aspire to be a person who runs toward those in need.

My loved one took care of me, too

Caregiving and Jeff’s eventual death from ALS were the darkest moments of my life. Caring for someone I loved so deeply, and knowing that he was going to die, brought daily sorrow and fear.

Six years on, I miss him deeply. But I don’t regret a moment of the time we spent taking care of each other. Even without his voice, I knew that Jeff and I were on the same team, and that we were going through this difficult and surreal season together. When I reflect on my time caring for him, I remember too the compassion and concern he displayed for me. I never felt like I was alone. He left me with the legacy of being a better person for loving him.

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.