Care Partner Perspectives

Parkinson's disease Care partners

David M, care partner of 9 years for his husband, David

“You and your loved one are partners in caring for each other in ways that are equitable but not always equal. As a care partner, sometimes you’ll fill your loved one’s pitcher more than they’ll fill yours. Replenish your pitcher by doing things and being with people that you enjoy and who lift you up. It’s easier said than done when requests for your time and energy feel overwhelming, but caring for yourself allows you to provide the best care to your loved one.

“Recently, a care partner friend [told me] she’s been able to reduce her own stress and anxiety ‘by focusing on what is, not what if.’ I wish I’d learned early on to not panic. To focus on our life today rather than what might happen in the future.”

care partners smiling together

Jan K, care partner of 11 years for her husband, Ron

“Ron values me and loves me with all of his heart. He tells me so all the time. When you’re both healthy and living your life, sometimes that doesn’t come out. But Parkinson’s makes you appreciate each other so much more. And when he has down days, I say ‘Look, we’re still together. We still have our life.’ I remind him of everything that’s good and of all that we still have.

“It’s important as a care partner to do something for yourself every single day. I take a 45-minute walk with my dog every morning. I do yardwork. These are things that I do for myself. You need to make sure you’re fulfilled.”

Patient and her care advocate

Gretchen H, healthcare advocate of 15 years for her mother, Carol

“I was 27 when my mom was diagnosed. Shortly thereafter, my family went to a PMD Alliance conference. I was expecting people my parents’ age, but then I found myself at a table full of people like me—young people with kids and full-time jobs—and they just got it. I learned so much by watching their behavior: they were letting their parents make their own decisions, even if they didn’t agree with them. And I realized that giving my parents autonomy would be better for all of us.

“My mom always says that Parkinson’s is like a gift she received. Before her diagnosis, she lived in this hurried state. And Parkinson’s not only forced her to slow down physically, but also to realize how important time is.

“My advice to other care partners is to be patient—both with yourself and with your loved one. Because there’s no one right answer. Everyone’s journey is different. And if you can be patient and try not to make someone else’s journey your journey, it’ll serve you well.”