Sharing fears with other ALS caregivers can help us feel less alone
These connections buoyed me in the wake of my late husband's diagnosis
The weeks immediately following my late husband’s ALS diagnosis were the scariest and most unsettling of my life. Even with Jeff’s physical symptoms pointing toward ALS, nothing could’ve prepared us to actually hear those words when they were delivered in a windowless examination room in Baltimore, in November 2018.
In many respects, those initial days of shock and despair were more difficult than any that followed. Jeff and I each retreated in separate ways, individually processing this horrible twist of fate in our otherwise ordinary and happy life together. Jeff was contemplative and quiet, spending hours sitting alone in the cold on a wrought-iron patio chair overlooking the water. I, on the other hand, took to the woods with our dog Rudder. I walked and sobbed every day for about three weeks. In many moments, I couldn’t catch my breath. I felt scared, helpless, and very alone.
I understood, too, that if I was feeling this degree of fear and anguish, Jeff’s was likely far worse. I couldn’t reconcile how this rugged and vibrant man could be living with a terminal neuromuscular disease, and how he must be feeling. Life in the weeks immediately following his diagnosis felt like a nightmare from which neither of us could wake up.
While every person and family handles an ALS diagnosis in their own way, I have learned that despair and disbelief are, understandably, common immediate emotions. Musician Mat Kearney expresses the feeling well in a song called “Closer to Love,” singing, “I guess we’re all one phone call from our knees.” While I was moved by the song even before ALS entered our lives, afterward, I fully understood.
Connecting with other ALS caregivers
As we emerged from this dark period and began quietly sharing our news with family and friends, something remarkable happened — the beauty of which I didn’t fully grasp at the time. Only with the passage of time have I realized what a gift it was. As our loved ones discreetly, and with our permission, shared Jeff’s diagnosis within their own trusted circles, we learned of strangers who’d seen their own family members through ALS and wanted to help us.
The first was a friend of a friend in the Pacific Northwest who’d been her late mother’s primary caregiver during her journey with ALS. We barely knew each other, but she reached out immediately, listening as I confided my fears and sharing her own story gently over our periodic calls.
The second was a previously unknown neighbor who’d learned of Jeff’s diagnosis, and even though her own husband had recently died due to ALS, she invited me over for an early talk that lasted three hours. Other conversations, and walks together, ensued.
Jeff Sarnacki and Juliet Taylor rest together with one of their dogs, Sailor, in January 2020. (Photo by Juliet Taylor)
It was through these two new connections, and subsequently others, that I experienced the unconditional kindness and raw honesty of other ALS family caregivers who were willing to share their own stories to help ease or validate my fears, answer my questions — even the scariest ones — and pick me up when my feelings of loss were overwhelming.
I will be forever grateful that Jeff and I approached ALS as a team. Meeting later in life — he was 52, I was 42 — we had never endured a major heartbreak together, and I was buoyed by the way we came together to support each other during his illness. Still, living with a terminal disease and being a caregiver are two different roles, with wildly different emotions attached.
I experienced feelings I didn’t want to visit upon Jeff, including self-doubt about caregiving, survivor’s guilt, and exhaustion. Hearing from others who’d lived through those same emotions and could both normalize them and offer practical advice felt like the ultimate gift of empathy and compassion. I was aware each time I spoke with a former caregiver that the conversation could cause them pain, so I tread softly. And yet, their deepest instinct seemed always to be to listen, share, and help.
Now, nearly five years after Jeff’s death, I’m one of thousands of former ALS caregivers. That fact can still take my breath away. I’ve learned about the value of reaching out to current caregivers in case what I felt and experienced can benefit someone else. By connecting honestly with others who might appreciate the same love I was offered, I grow and heal.
Talking and writing about Jeff, our lives, and all the scary and meaningful moments that ALS and caregiving brought helps me honor him and the journey we shared. Sometimes it is painful to do so. But like so many things in life, if revealing our lived experiences can ease someone’s pain or fear, even if for a brief moment, to me, it is worth it.
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About the Author
Leslie Bauman
The Caregiving Wife's Handbook: Caring for Your Seriously Ill Husband, Caring for Yourself by Diane Denholm was revelatory for me. Caring for a husband will a long-term terminal illness alters the relationship in unique and profound way. This book speaks directly to the wife who has many questions: How can I be feeling resentment, and how do I deal with that? How can I plan for the future? How can I be both wife and nurse? Foremost, is speaks to the guilt we wives feel that surrounds literally all of what we feel. Thank you for sharing your thoughts and reflections.