The gift of presence made us less isolated while living with ALS

When my late husband, Jeff, was diagnosed with ALS in 2018, I remember reading that it could be an isolating disease. I didn’t understand that at the time; our days were filled with testing appointments as we went from electromyography to blood work, swallow study to spinal tap. Our early days living with his ALS were a constant flurry of activity and concern. There was hardly time to rest, much less feel isolated.

We’d also opted to be transparent with our family and friends about what Jeff was going through, and many of our loved ones were along for the anguish that can be — and in our case, was — the diagnostic process. So when his ALS was confirmed, the news was met with shock and sadness, but also swift support. We felt many things, fear and sadness among them, but we didn’t feel lonely.

We learned pretty quickly that there was no settling in to our new routine with ALS. In Jeff’s case, it was never the same disease from day to day. Some symptoms would arise overnight, and then they’d seem to abate. Others were more insidious, presenting as minor weakness before they abruptly stole yet another physical function from him.

This dynamic made it hard for us to tell well-meaning friends and neighbors who offered help just how they best could support us. But there was one thing that we almost always welcomed, and that was the gift of their presence.

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Buoyed by the company of loved ones

In ALS, particularly in the later stages of the disease, leaving home is often hard for both the patient and the caregiver. Thus, the company of loved ones at home can become an incredibly important aspect of our self-care and well-being.

Jeff and I were fortunate that our friends seemed to intuitively understand this need and showed up for us in moving and incredibly helpful ways. He and I, normally planners, both grew to love the informal drop-bys of those who’d come and sit with us.

What we loved most of all was having no agenda with them. Often today, spending time with friends involves making plans to go out to dinner or take in a baseball game. With ALS, that’s often impossible, so there was a lot of simply hanging out together, the way we all might have as neighborhood kids — no set plans, just unstructured time.

What that meant in practice was a lot of relaxing on the porch, telling stories and reminiscing. It meant playing board games that we’d adapted so that Jeff could be fully included, taking turns rolling the dice for him but leaving all the strategic decisions for him to make. It meant friends stopping by with Taco Bell for me and milkshakes for him, or showing up unannounced to hang our Christmas lights, or bringing over a new puppy to crawl all over Jeff, who loved dogs more than anyone I’ve ever known. It meant friends, unbelievably, bringing my horse to our house for a surprise visit because I couldn’t get to the barn.

What felt best of all was that the people who came weren’t afraid to be with us, or if they were, they didn’t show it. ALS is scary and can be ugly. Yet they treated Jeff exactly as they always had, with relentless inside jokes, shared memories, and playful teasing. They conveyed that he was exactly the same person that he’d been before his diagnosis.

It’s true, and important to acknowledge, that some friends could not bear Jeff’s disease and didn’t wish to see him. We understood that was likely for their own reasons, maybe harking back to difficult memories or experiences with illness. We tried to give grace. We were otherwise buoyed by a lot of love, so we had little need to be upset.

When COVID-19 struck in March 2020, everything changed. Overnight, we couldn’t see anyone, neither friends nor healthcare providers. It was then that isolation settled in deeply, and then that I understood how critically important our friends had been to our emotional health.

For Jeff’s 60th birthday just eight weeks later, dozens of friends from all aspects of his life and mine staged a drive-by parade past our home. While he was too sick to go outside, we showed him the recording, and he cried with happiness. He died five days later.

When I think about our time living with Jeff’s ALS, I recognize how vital and important it was that people spent time with us, and how much normalcy and joy they brought, and how much love and courage it took for them to do so. It made all the difference in our darkest days. If you love someone living with ALS, please consider paying them a visit. You won’t regret it.

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.