Down the toilet went the Parkinson’s medicine, along with my patience
My uncle was acting like a child, but maybe I didn't understand him
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I couldn’t tell you the name of the medication today. But more than a decade later, I can still remember the sound of Uncle Brandon flushing it down the toilet.
It was a newer medication his doctor had prescribed for his Parkinson’s disease, and Uncle Brandon hated it. He didn’t like how it made him feel. The problem, at least from our perspective, was that he hadn’t been taking it very long. We understood from his doctor that it could take some time before we knew how well it would work, and we wanted him to give it a chance. Uncle Brandon had other plans.
Our family tried everything we could think of to convince him to give the medication more time. When reasoning with him wasn’t working, we even got a little creative about helping him take it.
For a little while, we thought we’d gotten away with it. Then one of his grandsons spilled the beans.
Uncle Brandon was already particularly irritated with his Parkinson’s symptoms that day. Once he realized what we’d been doing, he’d had enough. He grabbed the bottle and headed for the bathroom.
“I’m not taking any more of that [expletive] medicine,” he said. “Don’t give me that damn medicine. It makes me feel like [expletive].”
And down the toilet it went. The room got quiet. I was furious.
What it felt like to be him
I thought he was acting like a child. The medication wasn’t cheap, and now it was literally being flushed away. I also thought he was being selfish. Here we were worrying, picking up prescriptions and trying to help him manage Parkinson’s, and he wouldn’t give this medication more than a week.
Someone tried reasoning with him. Couldn’t he give it more time? Couldn’t he at least see how he felt after taking it longer?
Uncle Brandon eventually reminded us of something we couldn’t argue with: We didn’t know what it felt like to be him. We could see his symptoms, research Parkinson’s, listen to his doctors, and fill prescriptions. But we couldn’t comprehend what it was like to wake up every day feeling as though your body wasn’t completely your own.
This was a man who loved to dance. Uncle Brandon could randomly pop up from his chair, rub his feet against the floor, and wiggle his hips like Elvis just to playfully irritate everybody. As Parkinson’s changed what his body allowed him to do, he was the one living with those changes every day. To him, this wasn’t simply one more medication that might help. It felt like one more thing being done to a body he already felt increasingly unable to control.
At the time, I tried my best to empathize and understand some of what he was saying. I was still mad about that medicine, though.
What caregiving requires
Years later, my own health experiences have given me a small glimpse of how frustrating it can feel when people who genuinely love you become so focused on helping that their concern starts to feel like another decision being made for you. I would never pretend to know exactly what Uncle Brandon experienced while living with Parkinson’s, but I understand his frustration better now.
Looking back, I think our family sometimes slipped into caregiving autopilot. We researched. We listened to doctors. We filled prescriptions. We followed the marching orders because we loved him and wanted him to be OK.
But we didn’t always spend as much time asking Uncle Brandon how he felt about those marching orders. Maybe we could’ve asked how the medication was making him feel, whether he’d be willing to try it longer, or if we could talk with his doctor about other options. Maybe his answer still would’ve been no. Uncle Brandon was, after all, Brandon.
Caregiving sometimes requires persistence, and there’s no perfect formula for knowing when to push on and when to pull back. But our loved ones don’t stop being human because they need care. Whenever possible, they deserve a voice in what happens to their bodies.
Back then, I thought Uncle Brandon needed to listen to the people trying to help him. More than a decade later, I wonder whether we needed to listen to him a little more closely, too.
I just wish he hadn’t needed a toilet to make himself heard!
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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