Don’t overlook the importance of care in caregiving
Caregivers are the special glue that holds families together
As we celebrate National Family Caregivers Month, I would like to share an experience I had at a Huntington’s disease advocacy meeting I attended with my wife, Jill, a couple of years ago. It was my first advocacy meeting, and as I stepped through the doors of the gathering, I froze when I saw one particular caregiver in action.
A woman ahead of us was carefully maneuvering her husband in a wheelchair through the lobby. He was clearly in the late stages of Huntington’s disease and could no longer speak. His thin body was positioned crookedly, his head hanging forward. The sight stopped me in my tracks.
I had met Jill’s father, Ken, who had Huntington’s, in the last years of his life. I’m familiar with how the disease causes the brain’s nerve cells to deteriorate, and how movements become involuntary, speech fades, and personality changes emerge as damage spreads throughout the areas of the brain that control motor function and cognition.
I have clear memories of Jill pushing her father in a wheelchair, and I couldn’t stop thinking about the likelihood of that future for her. Additionally, our daughter, Alexus, is also gene-positive for Huntington’s.
Noticing how sad I looked, Jill squeezed my hand.
“Nothing good comes from worrying about a future that hasn’t happened yet,” she said softly.
Jill has a wonderful habit of being direct, thoughtful, and correct at the appropriate moments.
“Look,” she said. “Really look.”
A closer look
When I lifted my eyes from the husband in the wheelchair to the faces around him, what I saw struck me even more. The man’s wife was standing next to her children, who didn’t look sad. For a moment, they seemed like any other family out enjoying the day. They didn’t appear burdened or broken; they were just together.
Jill leaned close to me and whispered, “Pay attention to how people act here. Tell me afterward what feels different.”
When the conference began, I sensed a subtle shift within myself. Around the room, families sat beside one another, some comforting each other, while others nodded in quiet understanding. At some points, conversations overlapped. Professionals shared advice with caregivers, and caregivers commiserated with one another. There was no hierarchy, no sense of separation — just a shared determination to face what Huntington’s brings, together.
It wasn’t a stuffy or formal conference like many of those I’ve covered in my journalism career. It felt more human.
I leaned toward Jill and whispered, “They actually care, like, all of them, for one another.”
She smiled, knowing that she had helped shift my perception of what was happening in a room full of people facing Huntington’s together, mostly with positivity and hope. They were warriors armed with compassion, empathy, and love.
Until a cure for this disease is found, it’s clear that this community is built on the kind of mutual care that science can’t quantify.
On our way home, I thought about that family in the lobby. The woman inspired me as a caregiver. I imagined what it must’ve taken her to get her husband dressed, into the car, and through that hotel entrance. Most of all, I thought about how that family was together. They weren’t pretending that Huntington’s didn’t exist; they were choosing love in spite of it.
Jill glanced over at me in the driver’s seat. “See what I mean?” she asked. I did.
For the first time since Jill was diagnosed, I realized that, even as we navigate the most challenging aspects of this disease, it’s invaluable to be inspired by other caregivers, who are the glue that keeps families together. They act as reminders that loved ones have people they can rely on, and most importantly, they are a force that keeps our community focused on fighting the disease, not one another.
So here’s to all of you. Thanks for putting the “care” in “caregiver,” and for ensuring that no one ever feels alone on this journey.
Note: Huntington’s Disease News 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 Huntington’s Disease News or its parent company, Bionews, and are intended to spark discussion about issues pertaining to Huntington’s disease.
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