Balancing safety and individual autonomy in Parkinson’s disease
With my dad, I've found it's important to have these conversations
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There’s a moment that many Parkinson’s families encounter at some point. Maybe they’re on the road with a loved one with Parkinson’s who is driving, and they notice slight swerving over the center lane, as I did a few years ago with my dad. Or maybe the moment happens during a particularly challenging freezing episode, leaving them navigating the discomfort of silence while mulling over a simple question: Do I help or do I wait?
The part of me that wants my dad, who has Parkinson’s, to maintain autonomy for as long as possible has a tendency to stay quiet, even when I notice subtle changes in the way he drives. But there’s another part of me that expresses resistance at the idea that he might put himself or others at risk by pushing his own limits. It’s a reality that I find myself facing more frequently as the disease progresses, and navigating the nuanced layers of loving my dad while finding the best ways to support him is challenging.
In my experience, it’s hard to find a satisfiable resolution of the tension between safety and dignity in these examples. I think that every challenge is unique. But the research I’ve done about other people’s strategies has helped me to better understand some of the best approaches to use with him.
Many families that deal with Parkinson’s disease must distinguish between capability and difficulty while addressing this topic. While simple tasks like tying shoelaces and navigating the home during off-times have become more challenging for my dad, they aren’t impossible. And some days seem to be easier for him than others, which could mean that he might prefer assistance sometimes while maintaining autonomy other times.
I also think it’s important to have ongoing conversations about his preferences. Does he want help if he freezes in the living room? Or does he feel that he can manage? One strategy I’ve implemented for myself is to simply ask him. When I do, his answers change. Sometimes he wants a helping hand, while other times he doesn’t. I also find that there can be a third option that involves implementing other tools, like a grab bar in the hallway to help him maintain balance while navigating off-periods.
The important thing seems to be approaching these topics from a place of love and compassion to make him feel supported. Parkinson’s continuously forces my dad to pivot and shift his behaviors to maintain autonomy. Finding the right balance between helping him maintain his independence while prioritizing his safety isn’t simple. It’s an ongoing challenge, but a necessary one.
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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