Being reminded that my uncle was still in the room was an important lesson

As my late Uncle Brandon’s Parkinson’s disease progressed, my family became increasingly involved in helping him navigate appointments, medications, physical therapy, and everyday life.

But somewhere along the way, we started making mistakes. At times, we began talking about Uncle Brandon more than we talked to him. At first, it seemed harmless. When we attended doctor appointments or physical therapy sessions, healthcare providers would often direct questions toward us.

How was his gait? How were his tremors? How was his sleep? Was he eating well? How often was he exercising? How was his mobility around the house? Before long, one of us would jump in with an answer. After all, we spent a lot of time with him and wanted to be helpful. We knew his routines, his challenges, and the things he sometimes forgot to mention.

Meanwhile, Uncle Brandon would sit there looking less and less amused as everyone around him answered questions about his life for him. He didn’t always say anything, but the expression alone told us exactly what he was thinking.

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The doctor’s office wasn’t the only place where this happened. At home, we’d occasionally make assumptions on his behalf. We’d move things around the house because we thought it would make it easier to navigate. We’d clear pathways, rearrange furniture, or make decisions based on what we assumed he wanted.

Sometimes we’d even decide what he probably wanted for lunch or dinner because we thought we knew his habits. Most of the time, our intentions were good. The problem was that we were starting to forget to ask.

One day, Uncle Brandon finally had enough. In the middle of one of these conversations, he pointed out that he was still sitting right there and didn’t appreciate being discussed as though he were part of the room’s decorations. The way he said it was classic Uncle Brandon: It made us laugh. But he was also absolutely right.

As caregivers, it’s easy to fall into the role of helper, advocate, translator, and protector. Those responsibilities are important. Sometimes family members do need to fill in information, especially when symptoms, stress, or memory challenges make communication more difficult.

But somewhere along the way, we had started answering questions that should have gone to him first. We had started making decisions for him instead of with him. We had become so focused on helping that we unintentionally sidelined the very person we were trying to support.

Looking back, I understand why it frustrated him. Parkinson’s had changed some of his physical abilities. It had introduced new challenges, appointments, and limitations. What hadn’t changed, however, was his right to have a voice. He still had preferences. He still had opinions. He still had things he wanted to say. And as you may know by now, Uncle Brandon was never short on opinions.

After that conversation, our family made a more intentional effort to include him in discussions about his care and daily life. We still provided information when necessary, but we became better about asking him first. We encouraged doctors, therapists, and other healthcare providers to direct their questions to him whenever possible. We stopped assuming and started actually listening.

Ironically, one of the most important lessons Uncle Brandon taught us wasn’t even about Parkinson’s. It was about dignity. Caregiving often means stepping in. But sometimes the most meaningful thing we can do is step back and let our loved ones speak for themselves.

Parkinson’s may have changed certain parts of Uncle Brandon’s life, but it didn’t change the fact that it was still his life. And, respectfully, he wanted to make sure we never forgot it.

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.