Before Parkinson’s and before retirement, I always worked outside my home in a variety of positions. There was a lot of public contact and a learning component in every job I held. Becoming a full time CarePartner was quite a change as I found myself at home interacting solely with my husband most days. Granted, he is the person I most want to spend time with, but it can feel a little isolating when he is the only other person around. The only new things I learn in this role are PD related, not necessarily something I want to know more about.

Recognizing that I needed more, I started volunteering at a local museum. It is interesting work, but more importantly, it is an opportunity to step out of my CarePartner role and leave the worries behind for a few hours every week. I love interacting with people about things that have nothing to do with Parkinson’s Disease and enjoy the new things I am learning. The stories I share with my husband help to expand our world and refresh our conversations. The staff at the museum know about my husband’s diagnosis and understand if my schedule needs to change due to things happening at home.

The work at the museum picked up a few months ago and, after discussing it with my husband, I tried adding another day to my schedule. The extra day quickly became too much, and I had to accept that I can meet my own needs or I can meet the needs of others, I cannot always do both. I have dropped the extra day and have reinforced my boundaries around my volunteer position. I don’t want to stop volunteering at the museum, I need that interaction to be healthy, but I need to make sure that it is a healthy interaction. I am also looking carefully at my responsibilities at home to make sure that I have the capacity to continue in both places. Life needs to be about more than PD and it is good for both of us when I am able to bring some balance in the life I share with my husband.