A constant shadow of fear hung over my caregiver responsibilities
I remember the first caregiving task that I completed for my late husband, Jeff, after he was diagnosed with ALS in the fall of 2018. His symptoms had started with a foot drop,…
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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Processing my guilt has become a part of my life’s work
Often I do some of my deepest thinking when I’m alone in the car. I regularly drive 35 minutes to ride my horse, and I like to spend that time in silence. That’s when…
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How ALS taught me to feel emotions more deeply
After the loss of my beloved dog Rudder when he was 12 years old, a close friend observed with concern that she hadn’t seen me cry. It was true, I hadn’t shed any tears…
What I can’t accept about ALS, despite years of processing it
It was seven years ago this summer that I unwittingly and unwillingly became a part of the ALS community when my late husband, Jeff, began exhibiting foot drop and slurred speech, symptoms that were…
Adapting helped us keep the outdoors a part of life with ALS
My late husband, Jeff, and I shared a love of the outdoors, even though our preferred activities were often different. I loved to hike and kayak, while Jeff, who’d been injured when a car…
Why sharing is important amid the sadness of May
I remember the emptiness I felt the first September after graduating from college. I’d been a student for 16 of my 21 years at that time, and the void of not going back to…
Living with ALS changed my priorities in life, permanently
Sometime in my mid-40s, I wrote a list of goals I wanted to achieve before turning 50. I no longer have the list, but I remember a few things on it: Learn a second…
Sharing fears with other ALS caregivers can help us feel less alone
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…
Adding love and light to my home after experiencing ALS loss
When I was growing up, many of my neighbors participated in the U.S. Naval Academy Sponsor Program, as we lived just a few miles from the school’s campus in Annapolis, Maryland. Under the program,…
A snapshot in time prompts a flood of emotions and reflection
A photo I came across this week from when my late husband, Jeff, was living with ALS flooded me with emotions. It was taken in November 2019, the month we moved into an…
The end of a career was a hard loss for my late husband
I was enchanted on the first date with my late husband, Jeff, when our conversation turned to work. It’s an odd thing to say, because we can be conditioned to believe that work should…
Choosing how to communicate about ALS — and when
The summer and autumn of 2018 brought uncertain and scary moments for my late husband, Jeff, and me as he battled progressing symptoms of what would later be diagnosed as ALS. His symptoms…
