Being an ALS caregiver changed my understanding of self-care

My brothers-in-law made me an incredibly kind offer while I was caregiving for my late husband, Jeff, as he was living with ALS. They offered to spend a long weekend in January caring for him at our home while I went on a getaway. They wanted to fly me to sunny and warm Florida, far from the winter cold of Maryland. A beachfront hotel room would be reserved, allowing me to relax and get some sunshine. This idea was generous and personal — they knew I loved travel and warm weather and that I needed some rest.

I knew I was truly exhausted when I declined their thoughtful offer.

I welcomed the idea of taking some downtime, but getting on an airplane sounded tiring. Instead, we reached a compromise: They’d still come for the weekend, but I’d simply pack up my dog, Rudder, and drive 90 minutes for a stay at a comfortable oceanfront hotel in Delaware.

That weekend, Rudder and I walked each morning and evening on the cold, empty beaches. We enjoyed the free hotel breakfasts and binged on true crime television. I slept in each morning, napped every afternoon, and went to bed early. To this day, I remember it as one of the most peaceful weekends I’ve ever had. Though the schedule was unconventional, I recognized that I was taking care of myself.

Recommended Reading

March 27, 2023 News by Marisa Wexler, MS

MDA 2023: Patients typically need wheelchairs within 2 years of onset

A new understanding of self-care

If you’d asked me before ALS entered our family’s life what self-care looked like, I’d have responded by talking about spa days, manicures, and weekend brunches with friends. I’m embarrassed to say it now, but self-care had the connotation of decadence. Self-care before ALS meant spoiling myself and paying closer attention to my appearance and comfort.

Being a caregiver, however, taught me about self-care through a completely different lens — a much healthier one, informed by meaning and perspective.

Taking care of Jeff was the most profound and rewarding experience of my life. It was, above all else, an honor. Yet at the same time, it was terrifying and exhausting on a level that I never could have understood before ALS. Caregiving for a loved one with ALS meant sleepless nights that bled into restless days, scary and unexpected medical crises, and the relentless progression of the disease. It meant that a solution that worked yesterday might not work today.

Beyond the physical aspects of caregiving, there was also a constant awareness of Jeff’s faster-than-average progression and the emotional toll it took on both of us. Our days at the ALS clinic, for example, were a mixed blessing of getting the excellent care he needed juxtaposed with receiving unwelcome news about his diminishing respiratory capacity or decreased physical function. I now understand that we were living with ongoing losses, trauma, and hypervigilance, but it was difficult for me to see it at the time. It is hard to take care of oneself, much less anyone else, in those circumstances — but caregivers must find a way.

Well-meaning friends would remind me to look after myself as I cared for Jeff. I’d smile wanly and agree, but the truth is that finding the time or energy for self-care while caregiving is difficult and, to me, sometimes felt selfish. Plus, as was the case with my weekend getaway, some of the things that I remembered as self-care — travel and sunshine — didn’t hold the appeal they once did.

What I learned that weekend, and in the time since, is that our definitions of self-care can, and should, change depending on our stage of life.

Self-care in caregiving meant striving to get uninterrupted sleep when I could and making sure that I ate meals and got adequate nutrition. Most days I fell short, but I was at my best for Jeff when I could accomplish these goals. All the same, I struggled with guilt when I took care of myself.

In early grief, self-care meant lots of tears, lots of sleep, and taking time for reflection. It meant giving myself grace for my foggy brain, poor memory, and inability to concentrate. It meant easing up on a tendency to be hard on myself, and asking myself how I’d treat a friend going through the same thing.

Today, self-care is about balance. It’s taking care of my health and body so that it can sustain me for as long as possible. It’s about recognizing when I feel overwhelmed and making adjustments to my schedule when that happens. And it’s about honoring how our family’s experience with ALS shaped me into the person I am today — hopefully someone with a healthy perspective about what’s important in life, including taking care of myself — however that looks at the time.

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.