Am I his wife or his caregiver in this moment? How do I switch one off and turn the other on? Which do I want to be, and which do I need to be? When did the lines become so blurred? What does my husband see when he looks at me? All questions I face daily now that we are reaching more advanced stages of my husband’s diagnosis. My biggest question is can I keep my role of wife alive as we move further in this journey, or will I simply become a caregiver at some point? Is that what being the spouse of someone with Parkinson’s Disease means?

I hope my answer to that final question turns out to be no. I married the man, not the disease, and don’t want to lose that connection. To keep that from happening, I continue looking for tools that allow him to maintain as much independence as possible. I am figuring out those things I don’t want to do for him and letting someone else help. We have a foot nurse who trims his toenails, we have hairdressers and a health aide who help with grooming. I know they can’t be here 24/7 so there will be times when I must provide care, but I don’t want it to always, or only, be me.

My husband’s illness is progressing slowly which gives us time. My personal goal is to remember that I am his wife first. The cuddles, the hugs, the kisses and whatever else we are still able to manage matter. I was at a presentation on intimacy and PD years ago when a CarePartner in the audience shared her perspective. Even though her husband was at final stages they could still hold hands, they could still spoon in bed, she could still feel the man she loved in those moments. And she knew that he was feeling it too. Perhaps it will only be moments someday, I must do what I can now to ensure that they are there for us too.