Finding balance between safety and dignity while caregiving for a loved one
I realized how tiring it is to be reminded that people see you differently now
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As you probably know by now if you’ve been reading my column, my late uncle Brandon liked to stay on the move.
His career involved hands-on work, building things from the ground up, and figuring out problems on his own. That hardworking mentality wasn’t just part of his job. It was part of his personality. He liked feeling capable, useful, and active. Sitting still for too long just wasn’t him.
So when his Parkinson’s disease began to progress, one of the hardest adjustments for him wasn’t just the physical changes. It was when he realized that people were starting to treat him differently. And one of those people was me.
It wasn’t out of cruelty. I loved my uncle and wanted to protect him. But as his tremors and movement devolved, I started being extra careful around him. I spoke more gently, rushed to help before he could finish things himself, and sometimes watched him too closely instead of just being there with him.
One evening, we were standing outside talking when I noticed his tremors acting up more than usual. Without really thinking about it, in a soft tone, I immediately asked him if he was OK and whether he needed help.
His response caught me off guard. He snapped and told me he was cold and didn’t want people treating him like he was fragile. For a moment, the mood shifted completely. And honestly, I understood why.
Deep down, I think my uncle was having a hard time facing the fact that Parkinson’s was getting harder to hide. Hearing people worry about him all the time probably made it feel even more real and difficult.
It wasn’t really about my question itself. It was about what the question represented. It was the tonality of being coddled, which, for him, was unfamiliar territory.
I realized that at some point, I started treating him more carefully, rather than just being myself around him. The same uncle who used to roughhouse, work with his hands, and walk with confidence was now being treated more gently by those who cared about him.
Even though that care came from love, I started to see how tiring it must be to always be reminded that people see you differently now. That moment stayed with me.
A couple of weeks later, I became more intentional about finding balance. I still cared deeply about his safety, especially as changes in mobility and coordination progressed, but I also realized how important it was for him to still feel like himself around the people he loved. So instead of hovering, I learned to support him more quietly.
Sometimes I would quietly move something out of his way without drawing attention. Other times, I’d offer a hand nearby without grabbing him right away. And sometimes, I just let our talks and jokes happen like normal, without making everything about Parkinson’s. I think that balance mattered more than I realized at the time.
People living with Parkinson’s still want support, care, and understanding. But they also want to feel seen beyond their diagnosis. They want moments when they can still feel like themselves, not just someone navigating an illness.
Looking back, I see that one of the biggest things I learned from caregiving is that support and pity aren’t the same. Real support sometimes means protecting someone’s dignity as much as their physical safety.
And sometimes the most meaningful thing you can do for someone you love is to help them feel like themselves again, even in the middle of difficult changes.
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.
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