When Maureen's husband, Jim, was diagnosed with Parkinson's disease (PD), her understanding of intimacy changed. Before the onset of his symptoms, the couple enjoyed exercising together — for them, physical activity was a means of both healthy living and connection. As his symptoms advanced, Maureen explains how they have had to change the way they relate to one another. "Being a caregiver can be distancing. I have had to learn to listen and observe more, and be more mindful as his symptoms advance."
She has come to discover that intimacy means shared moments and communication — intentionally focusing on each other's experience and feelings. Whether a small moment of laughter, a hug, or a meal together, each occasion brings a new opportunity to build and maintain openness and honesty. "I am still learning to go with the flow," Maureen says, "moments of connection and shared fun can arise unexpectedly. Keeping flexibility in our schedules is important."
Throughout her journey as a carepartner, Maureen discovered valuable resources that helped her and her husband adjust to a new dynamic in their relationship. The Mindfulness Based Dementia Care Program through St. Paul's Eldercare Clinic helped her build self-awareness and resiliency. The Rock Steady Boxing program offered a new shared experience for the couple, providing a replacement for some of the activities they used to do together. They were also able to learn more about PD, and get connected to kind, motivated members of the Parkinson's community.
To other individuals transitioning into a caring role, Maureen recommends giving yourself enough space and nurturing so that you can be more present for your partner, and, to remember hugs.