Being a Parkinson’s caregiver meant carrying the weight
What I carried wasn’t just responsibility; it was also love for my uncle
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I was his niece, but Uncle Brandon meant much more to me. He felt like a second father.
Back then, my dad worked nights as he tried to build his teaching career, so we didn’t see him much. To be honest, there was also an emotional distance. He grew up in a country where survival and structure were more important than expressing feelings. Encouragement, heart-to-heart talks, or even hearing “I love you” weren’t part of our daily life.
But those things mattered. And in many ways, my uncle Brandon filled that space.
He was the one who showed up with energy, presence, and words that made you feel seen. He made you feel like you could do something, and that you mattered. So when it came time for me to show up for him, even before Parkinson’s disease entered the picture, it never felt like an obligation. It felt natural.
As his condition worsened, my role grew in ways I hadn’t expected. The mental load wasn’t just about helping anymore. It became more complicated.
Carrying the weight
I wanted to be there for his doctor appointments. I wanted to support my aunt and cousins as they tried to process everything that was coming at them. It was a lot to take in, and I found myself stepping into a role where I was constantly gathering information, breaking things down, and trying to apply it in a way that made sense for his life.
I was the one who did the research, asked questions, and tried to connect the dots. I also learned how to talk to him in a way that worked for him. When he pushed back, I could adjust my tone or approach to help the family get through those moments without arguments. But being that involved came with a weight that wasn’t always obvious.
It meant being there with him, laughing and enjoying our time, but also always staying alert. I was always watching, thinking ahead, and wondering what might happen next. I became his second set of eyes, especially as his movement and coordination made daily life less predictable.
It also meant quietly hoping that everything would go smoothly, that a simple moment wouldn’t turn into something more serious. Even as Parkinson’s progresses, those risks can become more pronounced in daily life.
I would carry it again
Over time, I realized something important. It wasn’t just one tough decision that made caregiving feel heavy. It was everything that came with it, such as the constant awareness, the mental calculations, the responsibility of helping with choices, and the pressure to protect him, while still trying to keep him happy. That weight doesn’t always have a name, but it’s there, and you might not notice how much you’re carrying until you stop and look back.
I see that what I carried wasn’t just responsibility. It was love, just shown in a different way. I tried to make things easier for him, even when I couldn’t fix what was happening, and I did my best to support both his reality and the life he still wanted. And while that weight was real, so was the reason behind it. I didn’t carry it out of obligation. I carried it because of who he was to me.
If there’s one thing I’ve come to understand, it’s that caregivers, or care partners, carry more than most people will ever see. It’s important to take a moment and check in with yourself, too. To recognize what you’re holding, to give yourself space to breathe, and to care for yourself in the process. Research shows that caregivers often experience emotional and mental strain over time, even when they are doing everything they can to support their loved one.
Prioritizing your own well-being isn’t selfish. It allows you to continue showing up in a way that is sustainable. Because the truth is, you can’t pour into someone else from an empty place. And in the middle of caring for someone you love, it’s easy to forget that you matter, too.
Looking back, I realized a lot was given during this scary time. But I also know that every bit of it came from a place of love. And if I had to carry that weight all over again, knowing what it meant and who it was for, I would.
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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