When I reflect on my time as a caregiver to my late husband, Jeff, while we lived with his ALS, I remember how afraid I often felt. I was fearful of injuring him during a transfer. I dreaded making a mistake with his feeding tube. I worried about his…
Thunder Road — Juliet Taylor
Juliet lost her husband, Jeff, to ALS in 2020, 19 months after his diagnosis. Together Jeff and Juliet enjoyed being on the water, live music, pets, and traveling. She was his primary caregiver, and finds meaning and healing in helping individuals and families who are living with or have lost a loved one to ALS. Juliet lives with her rescue pup, Sailor, on the eastern shore of Maryland, in a home that Jeff chose because it reminded him of his beloved Green Lake in Michigan.
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After my late husband, Jeff, was diagnosed with ALS in the fall of 2018, I could not have managed without the help of other people, and he couldn’t have either. This is hard to write, but even harder to own. Asking for help used to be difficult for me.
I remember borrowing a coffee tumbler emblazoned with a Royal Caribbean cruise ship logo from my late husband, Jeff, while we were dating. I wanted to take my coffee home from a visit to his house, and he reluctantly handed it over, explaining that he and his brother Steve had…
When I met my late husband, Jeff, we lived exactly 7 miles apart by car, our respective homes separated by the Potomac River just south of Washington, D.C. The bridge that crossed it nearest to our places featured a wide and safe bike lane that separated cyclists and pedestrians from…
I’m writing this column while gazing out over a foggy Pacific Ocean, aboard a ship that’s taking a group of us from Vancouver, British Columbia, Canada, to the icy waters of Glacier Bay, Alaska, and back. Intermittently on this voyage, pods of porpoises come racing close by the ship, and…
When my late husband, Jeff, was diagnosed with ALS in 2018, I remember reading that it could be an isolating disease. I didn’t understand that at the time; our days were filled with testing appointments as we went from electromyography to blood work, swallow study to spinal tap. Our…
A few weeks ago, I was driving out of my neighborhood when I noticed a sheriff’s car passing me slowly, headed in the direction I’d come from. Reflexively, I made a U-turn and began following the officer, dreading the bad news that I was sure he was headed to my…
On my first date with my late husband, Jeff, he rhapsodized about his family. He was the middle child of seven, and it was clear from the start that his brothers and sisters were a central part of his life. They’d grown up together in a home in Wyandotte, Michigan,…
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…
As ALS Awareness Month comes to a close, it’s a good time to reflect on what we’ve accomplished, and perhaps more importantly, to find ways to both sustain and build upon our momentum as we search and fight for cures. For the past month, members of the ALS…
Like many others, I completed the Ice Bucket Challenge when it became a cultural phenomenon in 2014. Created by Anthony Senerchia, Pat Quinn, and Pete Frates, who were living with ALS and have since died from the disease, the challenge involved being doused with a…
When I look back at photos from when my late husband, Jeff, was living with ALS — something I do often to find inspiration for this column — I’m struck by how many of our happier memories took place outdoors, even in the advanced stages of Jeff’s illness.
When my late husband, Jeff, was diagnosed with ALS, we were living in a small rented farmhouse that we both adored. Jeff loved the sprawling lawn that led to a tidal fishing pond and the flower beds that had been meticulously planted by the home’s owner. I appreciated the…
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