Looking back at the changing roles and relationships in Parkinson’s

I didn’t expect just how much my relationship with my late uncle Brandon would change over the years.

When I was a kid, he was always the one who got everyone going in the morning. I remember us kids staying up too late playing Nintendo, thinking we were sneaky. No matter how late my brother, cousins, and I went to bed, he’d be at the door a few hours later, knocking loudly so we couldn’t ignore him.

He would call out that a new day was waiting for us, joking that he was already up making breakfast and that if we didn’t get up soon, there wouldn’t be any food left for the rest of the day. Of course, we would groan, pull the covers over our heads, and sometimes go right back to sleep. Other times, we’d drag ourselves up and join him, laughing at his energy even when we didn’t have any. It was just who he was.

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I’ve carried that memory with me for years. It’s one of those small but important parts of childhood that sticks with you. But over time, I started to notice something shifting. It didn’t happen overnight. The changes were small at first and easy to miss. Some mornings, he didn’t get up as quickly. Sometimes, he just didn’t have the same energy. There were days when starting the day seemed harder for him than before.

Eventually, I realized something I hadn’t seen coming. Now, I was the one knocking on his door.

I found myself checking on him, encouraging him to get up and start his day, just like he used to do for us. I realized I had to talk to him differently, not to change who he was, but to meet him where he was. Sometimes I’d gently remind him to eat, even if he didn’t want to. Other times, I’d encourage him to take those first steps into the day, knowing his body was working harder than anyone could see. The change didn’t feel dramatic at first. It was gradual. But once I noticed it, I couldn’t ignore it.

Parkinson’s disease affects more than just movement. It can lower energy and motivation, making it harder to start daily activities. Changes in the brain can make it tough to get going or stay involved, which people might mistake for not trying, when it’s really a symptom. As Parkinson’s progresses, these changes become more noticeable in daily routines.

What stayed the same, though, was the heart behind it all. The same person who once woke us up with jokes and energy was still there. The difference was that now, the way we showed up for each other had changed. Looking back, I don’t see it as a loss. I see it as a full-circle moment.

He cared for us in ways we didn’t always notice back then. But, in a new season, we got to care for him in return — just in a different way. Caregivers often find themselves in roles they never planned for, trying to balance support, compassion, and patience while adjusting to changes that aren’t always obvious.

When I look back on the times I cared for and supported Uncle Brandon, I realize something that still brings me comfort: Even though our roles changed, the love between us never did. It just found a different way to show up.

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.