Why talking about caregiving is hard — but so important
In daily life with ALS, it can be difficult for caregivers to open up
Even before my late husband, Jeff, was diagnosed with ALS in 2018, we approached his unusual and alarming symptoms as a team. He’d shared with me from the beginning his painless but mysterious foot drop, and together our concerns grew when he began to slur his speech. From that point forward, we braved his eventual ALS diagnosis as partners. We each had a role to play and stayed united in making sure that he — and we— lived as well as we could with ALS.
I credit Jeff for that approach. As a former federal law enforcement agent, Jeff was calm, strategic, and methodical in a crisis, and ALS was no different. He was intentional about how he wanted us to live during his illness and pragmatic about preparing for the future.
Living with Jeff’s ALS brought us closer in almost every way: We laughed more often and more easily, cried together for the first time, and then dozens more times. We marveled at the beauty of simple things, particularly nature, in ways beyond our comprehension before ALS. But for all the ways that Jeff and I deepened our bond while he was living with ALS, there is one thing I never shared with him: my fears and challenges regarding caregiving.
An evolution in understanding
Jeff Sarnacki, Juliet Taylor, and their dog, Rudder, enjoy a walk during Christmas week in 2019. (Courtesy of Juliet Taylor)
During our family’s life with ALS, I always thought that Jeff had the far harder of the roles between patient and caregiver. I still do. He was the one whose once-strong cyclist’s body was deteriorating, and who dealt with daily losses of function and freedom. He was the one who had to rely on help for nearly everything, surely a major blow to someone who’d mowed lawns, changed lightbulbs, cooked gourmet meals, and otherwise tended to people he loved all of his life.
So, as Jeff’s caregiver, I felt crushing guilt admitting to myself, to him, or to others that it was a challenging role. And, therefore, I usually didn’t.
Caregiving, for us, meant nightly bathroom trips at 3 a.m. that took 90 minutes round-trip via a Hoyer lift from our bed about 20 feet away, with me sleeping at Jeff’s feet while he used the restroom. It meant cleaning catheters and feeding tubes and cough machines multiple times a day. It meant holding my husband’s body steady on a bath chair with one hand while bathing him with the other.
Caregiving meant dressing and undressing his paralyzed body each morning and night. It meant calling 911 when Jeff fell and I couldn’t move his 265-pound frame. It meant, for both of us, doing all of these things while utterly exhausted as day and night blended together.
When Jeff would text me, “I am sorry you have to do this for me,” I’d always have the same response: “You would do it for me.” And his eyes would brim with tears and he would nod. We both knew he’d do the same if our roles were reversed. And so, with just a few words, we understood each other.
Jeff Sarnacki, Juliet Taylor, and their dog, Rudder, pose for a photo in the summer of 2019. (Courtesy of Juliet Taylor)
It’s only with the passage of time — Jeff will have been gone four years this May — and the kindness and encouragement from connecting with other ALS families that I’ve been able to say that caregiving was difficult. Yet, it still feels like a betrayal of Jeff and an insult to those living with ALS to admit that caregiving is hard, because I recognize that living with ALS is harder.
There is a movement afoot in the ALS community to recognize the stresses on caregivers and to find and create more support for them. We are encouraging caregivers and their loved ones with ALS to have more honest conversations, released from the guilt that I and probably so many others felt, and feel.
I’m evolving to understand that two things can be true at once: Caregiving for Jeff was the most meaningful, rewarding, and loving thing I have ever done, and it was also the most challenging, both mentally and physically. I would give anything to have him back and would care for him for 100 more years if I had the opportunity. But in the throes of ALS, like thousands of families are right now, each day brings new fears, new demands, and new difficulties.
ALS brought Jeff and I closer, yes, but I wish we’d talked more about our respective roles as a person living with ALS and a caregiver. I know that Jeff was protecting me from worrying about him, and I was doing the same for him. While it was a logical decision at the time, designed to shield each other in a time of crisis, I know that our love and our relationship could have borne the discussion.
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