Wow, this is such an easy trap to fall into. I wake up in the morning and my husband is there needing my help to get out of bed. I spend much of my day working with him on his activities of daily living and trying to make sure his day goes well. By the time I help him back into bed at night, I am often exhausted. I used to hear all the words about “self-care”, but I didn’t really understand the importance or how to make it happen in our busy days. His care had become my only purpose.

I’m not sure what it was that finally triggered me but I realized that immersing myself in his disease wasn’t healthy for either of us. Our world was shrinking when everything we did had something to do with Parkinson’s. We had little or no contact outside of the PD world. It was when I started trying to write about things other than our journey that I realized I could have my own interests without taking away from caring for him. As a matter of fact, those other activities that I take part in bring new conversations and have opened up windows in our current situation.

Having in-home care helps me manage my outside stuff but it isn’t absolutely necessary. I can write while he is napping and have connected with some great writer’s groups through the internet. I wouldn’t say that my purpose in life has become to write the great American novel, but it has become to find additional personal enrichment alongside our PD journey. I’ve even joined a social group that has nothing to do with writing or PD and our world hasn’t fallen apart. Caring for my husband is still a big piece of my purpose but caring for me has found its way in too.