Lessons revealed in the quiet moments of Parkinson’s caregiving

The drive home turned into a quiet ceremony, a gentle transition between worlds I didn’t yet have the language for.

After spending long days with my uncle Brandon, who had Parkinson’s disease, I would get in the car, turn on something soothing and timeless like Sade, and let the music create space for reflection. It was the one time each day I allowed myself to fully process everything I had just experienced.

I still remember one evening clearly, after a day that felt especially long. Uncle Brandon snapped at me because he thought I had given him the wrong medicine, and he didn’t want to do the fun workout I’d hoped would help him stay agile. He had been having a tough few days, getting used to needing his cane more and dealing with new pain and stiffness.

Usually, I could laugh things off. I’d say something playful to get him to chuckle, and then we’d move forward together. Humor had always been our way through. I’d learned that sometimes, being a caregiver didn’t mean doing more, but simply being present.

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But that night was different. I felt drained in a way I couldn’t explain — not just physically tired, but emotionally heavy in a way I’d never felt before. I think part of me knew his condition was starting to worsen, and that realization forced me to face a reality I wasn’t ready for.

On that drive home, I understood that I was grieving someone who was still alive.

I was grieving the version of Uncle Brandon whose voice entered the room before his body did. The one who loved yelling playful obscenities at Cowboys games, making everyone laugh, playing dominoes, and lighting up any space he walked into. That man was slowly becoming quieter, more reflective, more reserved. And I didn’t know how to feel about it.

Part of me felt guilty for even calling it a loss. Shouldn’t I just be grateful he was still here? Shouldn’t I focus on the fact that, even with Parkinson’s and the changes in his spark, he was still trying? He still smiled. He still loved. He still showed up however he could. But there were emotions I’d never learned how to make space for before.

Living alongside Parkinson’s means carrying feelings that don’t always have names. As a caregiver, I was learning that some of the hardest parts weren’t physical tasks, but emotional ones.

Giving myself space to feel

That night, during the drive home, I let myself feel everything at once. I cried. I felt grateful that Uncle Brandon had hugged me earlier that day, told me he loved me, and thanked me for looking out for him. I felt grateful that even after snapping at me, he still found the energy to offer tenderness.

But deep down, I also felt a quiet ache I could no longer ignore. This stage of his Parkinson’s journey felt different. It wasn’t something I could brush off with humor or bury for later. It was asking something new of me. It was asking me to sit with the reality of change, of uncertainty, of love that no longer looked the way it used to.

For the first time, I realized I didn’t need to fix how I felt; I just needed to feel it. The emotional aftermath of caregiving doesn’t always come during the hard moments. It comes later, in the car, in the quiet, in the space where there is no one left to perform strength for. It arrives when there is finally room to exhale, when the weight of the day settles in and asks to be acknowledged.

Some things do not need fixing. They just need space to be felt. And sometimes, that space, the quiet, the drive home, the moment after the day ends, is what allows caregivers to keep showing up with patience, compassion, and a little more honesty about what this journey really asks of us.

Note: Parkinson’s 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 another 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 Parkinson’s News Today or its parent company, Bionews, and are intended to spark discussion about issues pertaining to Parkinson’s disease.