We connected with a support group for Parkinson’s many years ago and it has been a wonderful resource as my husband’s disease progresses. We have learned much about this illness by being with others on similar journeys. The absolute best piece of it for me though has been connecting with other CarePartners. When we are able to gather without our People with Parkinson’s and talk about the role we play as Partners, it is amazing. Just as my husband needs to know that he is not the only person with PD, I need to know that I am not the only one feeling lost as I try to provide appropriate support and care.

My husband has been my best friend and confidante for decades but in this part of our journey things are happening that I just can’t talk with him about. While his diagnosis impacts us both, the challenges and emotions we encounter are different. Only someone who is facing the same difficulties can fully understand. How can I complain about loss when he is living it? How can I share my fears for a future that neither of us can predict? How do I express concerns about the daily toll this disease is taking on me without making him feel worse? These are the type of things I can say to another CarePartner and we can laugh or cry about them, which makes it almost okay.

I was seeing a therapist and keep her number in my back pocket just in case, but I have found that spending an hour with another CarePartner is much more useful. They get me when I talk about being exhausted at the end of each day. They understand my exasperation about the ups and downs of my husband’s good and bad days. They hear my pain, my loss because they share it. Finding a support group for my husband was good, finding a support network for myself was essential.