a young woman is defining her relationship to parkinson's

My Issue with Defining Myself as a Caregiver

Last updated: January 2022

In the Parkinson’s community, you commonly hear 2 terms in forums and columns: a PWP (person with Parkinson’s), and a caregiver (those who care for a PWP).

I’m not currently looking after my dad (a PWP), so I don’t feel that I fit into the caregiver category. And I don’t have Parkinson’s disease. But there isn’t a third category that’s widely used to describe my relationship with the Parkinson’s experience. I feel that I’m something else entirely.

I don't have a solution

Do I give care to someone that I love? I would say that I do. But we’ve adapted to create a lot of virtual care or care throughout the holidays and my short stints at home. Wouldn’t that make me more of a part-time caregiver? Or simply the daughter of someone who has Parkinson’s disease?

All I know is that I don’t think of myself in this binary light, and I don’t yet have an entire solution to this dilemma.

I can tell you that I’m a frequent researcher of Parkinson’s. I like to read about the latest studies. When I’m in Michigan, where my dad lives, I don’t mind jumping in and lending a hand to give my mom a rest from doctor’s appointments and day-to-day activities. But I’ve never felt as if I can entirely own the "caregiver" title - even if, on occasion, I do give care.

Connecting with my dad

The problem with this duality is that I sometimes feel like a fraud. I write tons of columns that talk about the disease and some of the challenges that my dad is facing. But I live in another state from my dad, and I don’t always feel like I have a close look at what’s happening in his life.

We talk nearly every day, and he shares bits and pieces of what goes on. I often try to use my research to get him to talk about things he wouldn’t otherwise address. And it usually works.
On some mornings, he sends me a quick text about a thought or revelation he’s had about the disease. And it isn’t long before we’re diving into our next research topic.

Labels fall short

In some Parkinson’s communities, the term "advocate" is used to describe people like me. This term would suggest that I feel very strongly about supporting those who struggle with Parkinson’s.

I do feel that this is a better depiction of my role. But it still leaves something lacking. I’m an advocate because I’m up close and personal with someone who battles Parkinson’s every day.

And perhaps all labels fall short of our own experience when it comes down to it. Sure, we can categorize ourselves as PWP or caregivers, but ultimately our experience is still our own. Relating to one another involves finding commonalities, but we’re all different.

More honest titles

I’ve struggled with labelling myself as a "caregiver" since the start of my relationship with Parkinson’s disease, and I suspect that I will continue to feel this way.

I do, however, wonder if there’s a simple solution; Maybe we can begin to develop the English language to include additional descriptions and titles that more honestly reflect our experience.

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