My late husband was adamant I take care of myself
As an ALS caregiver, self-care often seemed impossible
While my late husband, Jeff, was living with ALS, a close family member was diagnosed with colon cancer and required immediate surgery. Fortunately, the cancer had been caught early, and the surgery was successful in eliminating it without complications.
The unexpected cancer diagnosis meant that we now had a family history, and I needed screening as well. Now 50 years old, I was due for my first colonoscopy anyway. However, I was deep into caregiving, so I decided to wait.
At this point in Jeff’s time living with ALS, he required considerable care. He was no longer able to walk, speak, or eat by mouth, and we were in the exhausting throes of 24-hour caregiving. Still, we were like any married couple — we communicated, celebrated, joked, and argued with each other — working, as best we could, around the limitations that ALS brought.
So Jeff wouldn’t hear of me ignoring the colonoscopy order. Yes, it meant a morning away, which is often impossible in the context of ALS. Yes, it meant time away from caregiving to prepare for the procedure, which was another significant ask.
Self-care isn’t so simple
The day before the colonoscopy, our friends Mark and Vivian arrived to be with Jeff while I prepared. They were two of our closest loved ones, and they had doubled down on presence when Jeff was diagnosed. They routinely showed up with groceries and kindness, shared funny stories, and treated Jeff and me exactly the way they always had, which is a gift in life with ALS. They were two friends who walked with us toward our fear, acknowledging the gravity of ALS without looking away.
The next morning, my friend Therese arrived to drive me to and from the procedure. Therese has the magic gift of making me laugh and feel calm simultaneously — the perfect antidote for a colonoscopy. When I awoke from anesthesia, she was sitting at my bedside, waiting patiently. I remember feeling loved, cared for, and safe, and I knew Jeff was, too.
As a caregiver, I often heard about the need for self-care. Without exception, these conversations came from a place of love and concern, but it was sometimes hard for me to explain the nature of caregiving. Leaving the home for even an hour sounds simple to many, but when living with ALS, it can be seemingly impossible.
Because of that, what felt like welcome self-care before ALS — manicures, for example — became unwelcome distractions, even extravagances. Self-care in ALS meant taking care of myself as best I could while at the same time putting the needs of someone else — a person I deeply loved — ahead of my own.
Jeff was adamant and pragmatic about my taking care of myself, even as we both recognized that it felt impossible to do so. He insisted that I keep up with routine medical care and helped me find ways to solve logistical challenges. He pushed me to eat healthy meals even when we could no longer share them. He was concerned when I developed a skin rash and researched it on his own, sharing his thoughts about what it could be and how to treat it.
When the girlfriends with whom I ride horses — a lifelong second family to me — planned a weeklong riding trip to Ireland, I never considered going. When Jeff caught wind of it, his family came for four days so that I could join for a brief time. Galloping through the Irish countryside was restorative and exhilarating, helping to heal the broken heart I was already experiencing as Jeff’s ALS progressed. Between rides, I slept hard on the bus bench seat as we moved from ride to ride.
Even while living with the terminal diagnosis of ALS, Jeff took care of others — me, his adult children, his close family and friends — as best he could. He sent birthday wishes, ordered flowers, and let people know he was thinking about them. This wasn’t secondary to looking after his own health; it was intrinsic to it. It’s who Jeff was as a person, and caring for others brought him meaning and joy in the latter days of his life, just as it had before ALS.
I smile now when I hear the term self-care. It has a broad meaning in popular parlance, but self-care is so individual. It can change dramatically with the evolution of priorities and life circumstances, both of which are hallmarks of living with ALS. I feel grateful that, with my late husband’s love and insistence, self-care came to mean looking after my own physical and emotional health while we lived with his ALS.
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.
About the Author
Leave a comment
Fill in the required fields to post. Your email address will not be published.