The Benefits and Burdens of Being a Parkinson’s Care Partner

Parkinson's Care Partner Burden and Benefits

On a recent Living with Parkinson’s meetup, one of our Ambassadors said that a care partner and person with Parkinson’s are like Fred Astair and Ginger Rogers. The person with Parkinson’s, the melody, is Fred Astair. The care partner is Ginger Rogers trying to do everything the person with Parkinson’s is doing but backward, in a dress, and wearing high heels.

That sounds about right.

The truth is unless you’re a medical professional who has been caring for people as your life’s work, having to step into the role of care partner is a big change and often a significant stressor. And it can take its toll on you – physically, emotionally, spiritually, and otherwise. And once again, the data bears that out. However, the research also shows that many care partners describe it as one of the most rewarding experiences they’ve ever had.

In 2021, we partnered with Kyowa Kirin and PMD Alliance to look at what it means to be a Parkinson’s care partner and how to provide care for a loved one without compromising your own health and well-being.

On any given day, as a Parkinson’s care partner, you may:

  • Provide emotional support
  • Watch symptoms worsen and progress
  • Manage medications, appointments, and care teams
  • Manage outsourced and respite care
  • Switch roles on a dime – from spouse to care partner
  • Adapt or modify a home to be safe and accessible
  • Navigate a complex healthcare system
  • Become an advocate for your loved one
  • Have uncomfortable conversations
  • Battle insurance denials
  • Question medications and treatment plans
  • Make end-of-life plans
  • Be the executor of wills and trusts

You may also feel:

  • Like you’re becoming the very best version of yourself
  • Fulfilled
  • Grateful to have more quality time with your loved one
  • More patient and grounded
  • Appreciated and loved
  • Challenged
  • Grateful that you can share your experience with others

And that’s the duality. It’s challenging and rewarding. Exhausting and invigorating. Frustrating and meaningful. Our goal, then, is to shine a light on all aspects of the care partner experience so we can understand what resources, programs, and tools are needed to help you along this path and all of the ups and downs and twists and turns that come with it.

We’re grateful to Kyowa Kirin and PMD Alliance for their collaboration, partnership, and commitment to helping Parkinson’s care partners live well today. We hope that reading the paper that resulted from this collaboration will make you feel less alone and connected to the resources you need to be the kind of care partner you want to be.

Click here to download the white paper: Burden and Benefit: Embracing the duality of the Parkinson’s caregiving experience

Want More Care Partner Resources?

If you’re a Parkinson’s care partner, this hub is for you. Complete with webinar recordings, audio, blog posts, and deep conversations, we created these resources to help you live well today. If there’s a topic or resource you think we’ve missed, please let us know.

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