60
We asked: What brings you joy as a care partner?
Julie: The joy in our relationship comes from our friendship; it’ s not specific to Parkinson’ s. Having good phone conversations, spending time together, seeing our kids together, who are like cousins. Despite this disease, it’ s not rare for Becca to just enjoy herself.
Heather: Jeff’ s deep brain stimulation surgery was a moment of joy for both of us. The transformation was amazing. His shaking stopped, and he looked more comfortable and at ease in his own skin. I really felt like I got my husband back, and even our friends noticed the change. That brought me immense joy.
Jessie: We laughed together— that’ s really important. Seeing friends is a joy, though it happened less often; Bill had trouble eating and didn’ t like to do it in public, so we socialized less. But when people visited and could handle his needs without being uncomfortable, that was a real joy. Those are true friends.
Keep Your Old Life— and Your Own Life
You are still the person you were before becoming a care partner. Maintain your favorite hobbies and interests, adapting as needed. Keep up with pre-Parkinson’ s friendships. Connection with other care partners is valuable, but so is spending time with people outside of Parkinson’ s. That time can be refreshing and give welcome distance from the disease.
Also continue to invest in activities and relationships that are yours alone. Partnerships thrive when each person keeps their own sense of self.
Create“ No Parkinson’ s” Zones
Make Parkinson’ s updates or check-ins off limits during certain times or activities. You might say to a friend,“ I’ m looking forward to an afternoon off from care partnering, let’ s skip Parkinson’ s talk today.” You can create“ No Parkinson’ s” zones with friends and family, as well as with your loved one. Just as couples might avoid discussing household logistics on date night, block an hour each week to talk about anything but.( Make it a game: Whoever says“ Parkinson’ s” first does the dishes or another chore!)
Zoe: My family found a theme song to keep us going. Every time we hear it in public, it’ s a reminder that keeps us motivated and connected to the Parkinson’ s community. Find your theme song. Find the thing that keeps you going.
Table of Contents