5 Things I’d Tell My Pre-ALS Self That I Learned From Caregiving

A columnist shares valuable takeaways from living with her late husband's ALS

Juliet Taylor avatar

by Juliet Taylor |

Share this article:

Share article via email
Banner for Juliet Taylor's column

I’ve read dozens, if not more, of the kind of column I’m about to write: first-person narratives that offer advice to one’s younger self, full of lessons learned from difficult life experiences. Before my late husband, Jeff, was diagnosed with ALS, I devoured these columns, always looking for some relatable wisdom I could use to better find my way in the world.

Jeff’s diagnosis changed me so much that I now divide my life into two distinct periods: before and after ALS. Once ALS hit our family, all of my collected quotations and inspiring phrases went out the window. My go-to phrase in early adulthood — “Do one thing every day that scares you” — felt like a mockery. I was doing multiple things a day that scared me.

Living with Jeff’s ALS meant I had to learn new ways of being, but I didn’t realize what they were until the “after.” Following are five things I’d tell myself before ALS entered our world:

1. Give up my people-pleasing tendencies

One trait I developed in my pre-ALS life was a broad desire to meet others’ needs, to make as many people happy, or at least not unhappy, as possible. People-pleasing is impossible to achieve when living with ALS because it contradicts the needs of our loved ones.

Meeting Jeff’s caregiving needs in a way that provided him with dignity and safety meant that other things had to give. In becoming Jeff’s advocate, it became, as a matter of necessity, much easier to embrace the things we needed and to say no to things that didn’t serve him. Prioritizing in this way gave us focus and clarity, gave him better care, and brought me greater peace.

Recommended Reading
main graphic for

Revisiting Both Sad and Happy Memories of Life With ALS

2. Expand my heart to total strangers

This may seem counterintuitive after No. 1, but it’s just as true. When living with ALS, we were offered kindness, support, and love from people we’d never met and may never see again. A local hospice volunteer brought me a rose on Mother’s Day and we talked for an hour in my driveway. That morning, I never would’ve seen that conversation coming or known that I needed it. I cannot recall our exact words, but that time is one of the beautiful moments I remember from life with Jeff’s ALS.

I believe there’s a recognition of suffering and loss that binds many of us together. Some of the most beautiful gestures came from people who’d experienced this before and wanted to offer comfort, to let us know that we weren’t alone. One gift left to me by that time in life was that I’m now moved to do this for others, with no agenda or expectation of return.

3. Give myself and my loved ones grace

Early on in Jeff’s ALS, my first caregiving task was to put on his shoes in the morning, as his earliest symptoms kept him from doing so by himself. I remember one morning inadvertently putting his shoes on the wrong feet and him becoming upset with me, something I still feel bad about because it was — for both of us — about so much more than shoes. For him, it was the first physical loss, and for me, it was the recognition that my strong husband could no longer do this for himself and must have felt great sadness.

Rather than focus on the mistake I made, or his reaction, I learned in that moment — and many that followed — that so often, the feelings surrounding mistakes and missteps are often about more than the actual event.

4. Laughter is healing

Many funny things — hundreds, maybe thousands — happened during our time living with Jeff’s ALS. We laughed every day: at the dogs, at the squirrels, at the often ridiculous and frustrating situations that ALS placed us in. While the latter weren’t funny per se, we had the choice to laugh or cry together. Since we did plenty of crying, laughter, when available, always felt better.

5. Be present

Days with ALS were long and exhausting for both of us, one day spilling into the next through many sleepless nights. Scary and sad moments abounded, but so did quiet moments when it was just me and Jeff sitting outside watching the birds, learning to communicate without speech.

ALS didn’t change the fact that he was a wonderful husband, loving and loyal. During those quiet moments, we could soak in the love that we felt for each other, a feeling that helped empower us for tough moments ahead.

A couple stands on the beach in the Dominican Republic wearing shorts and sandals. The woman is hugging the man, and both are smiling at the camera.

Jeff and Juliet on the beach in the Dominican Republic in December 2019, just over a month after Jeff’s ALS diagnosis. (Courtesy of Juliet Taylor)

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.


Alan avatar


Such a beautiful article... Thank you!

DeEtte Petrie avatar

DeEtte Petrie

I was diagnosed with ALS in October 2022. Reading some of these stories and watching some Youtube Videos has me scared for the future.

John alvarez avatar

John alvarez

thank you for your tender insightful comments
i have a favour to ask
there has been reported from professor Tim tree kings college London about a recent breakthrough with als
a70% survival benefit at two years with placebo controlled trial and I have been trying to get als news today interested but unable to communicate with them
hence when I read your article i thought that this may be a way to get the news out there!



Thank you for sharing these thoughts of wisdom. They were very helpful for me to read.

Ruth avatar


Juliet, tears flow when I read your columns because you put into words so beautifully everything I am feeling and learning as I share my husband's ALS journey. Many, many thanks.

Gwen avatar


Your comments about life with ALS are so right on. Thanks for writing them.

john avatar


Thank you Juliet, so much wisdom

Chris Cantergiani avatar

Chris Cantergiani

Thank you so much for this timely article, Juliet! I've passed it along to a friend who is doing some ALS caretaking for his mother. You are a gifted writer with an important message. Do not stop!


Leave a comment

Fill in the required fields to post. Your email address will not be published.