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

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.

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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.

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)

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