Caregiving for my late husband often left me feeling helpless
We can never fully prepare for the reality of ALS
I remember the first time my late husband, Jeff, fell as a result of ALS. Falls can be common with the disease, but I was still shocked each time one happened. When Jeff fell, it laid bare how ill qualified I felt to care for him, even while taking every precaution to keep him safe.
On this day, we were at an outdoor gathering of friends, relatively early after Jeff’s diagnosis. He was still walking without assistance and tripped on a single step, tumbling swiftly to the ground. My immediate instincts were twofold: to run and help, and to look for someone who knew what to do.
The latter reaction was more revealing because I realized I was, in fact, that person. The friends who’d witnessed Jeff’s fall were, understandably, looking at me. It dawned on me in that moment that, even just a few months since his diagnosis, I was indeed his caregiver.
Had I not been so concerned about Jeff’s fall (he was OK), I would’ve been bemused. Not by the fall, of course, but because I was meant to know what to do, and that I was somehow qualified to be in charge.
No amount of preparation can halt ALS progression
ALS left me feeling woefully unprepared for every physical and emotional insult it hurled at us. When Jeff was diagnosed, I became an ardent learner, willing myself to be obsessively accountable. What I discovered instead, after 19 months of caregiving before Jeff died, is that ALS was a brutal teacher. It leveled me and challenged me. It required me to bring my best and still usually left me feeling helpless and defeated.
Juliet Taylor naps during a break from caregiving for her late husband, Jeff Sarnacki, in spring 2020. (Courtesy of Juliet Taylor)
I remember starting a comprehensive binder of data when we were in the process of seeking answers to Jeff’s troubling symptoms. I dutifully carried the binder to every appointment, every test, every discussion. I recorded his temperature, blood pressure, and mood, as well as every comment his care team made, even though these were already documented in his online medical chart. I recognize that now as an attempt to manage my own anxiety, somehow feeling that we could overcome our fear with data and information, even when they pointed to a scary outcome.
Once Jeff was diagnosed, I enrolled in a weekend certified nursing assistant program at our local community college. Even though I already had a full-time job and Jeff was still functioning well physically, I dove into learning about bed baths, Hoyer lifts, and CPR. As part of the program, I worked for a week in a nursing home. I sought to absorb every bit of medical knowledge that I could.
While I’m now grateful to have gained this knowledge, in retrospect I realize that this effort, too, was trying to prepare for something that’s simply impossible to fully prepare for.
Caregiving tapped into my most primal feelings of helplessness and unfairness. The person I loved most in the world was facing a terminal illness, and no amount of wishful thinking, bargaining, or education would change that.
That’s why I was surprised to see so many faces looking at me when Jeff fell for the first time. I felt ineffective and alone, an unlikely and questionable expert. I could assist Jeff to his feet, yes, but I couldn’t keep a fall from happening again. Nothing would stop his progression, and no amount of preparation would mitigate what came next.
Jeff Sarnacki and Juliet Taylor nap in the car during a vacation to Canada in June 2019. (Courtesy of Juliet Taylor)
I’ve written before that Jeff and I had bountiful support from family and friends while he lived with ALS. Loved ones visited frequently, brought meals and laughter, and kept us company.
Even still, there were so many frightening moments of reckoning with ALS that were private to just him and me. There were overnight breathing scares, urinary tract infections, unexplainable pains, unfixable discomforts, nightmares, and communication challenges once Jeff lost the ability to speak. These were fears we bore both alone and together, and sadly, these weren’t things that preparation would solve.
I think about my “job performance” as Jeff’s caregiver all the time. Even more than four years after his death, I second-guess my decisions and my care. I wonder what I could’ve done differently.
Yet I know better. For a time, I devoted my life completely to providing a dignified, safe, peaceful, and meaningful life to the person who had always brought those same things to me. I strive to give myself grace. As we observe National Family Caregivers Month, I wish the same for any family that is living with this thief of a disease or reeling from the losses it creates. This community sees you, and you are doing a good job.
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.
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