As I write this, I am thinking of my father and his journey with Parkinson’s Disease. It was 30 years or more ago and I was trying to support my mother as much as him. I remember not knowing anything about this disease and feeling helpless as I watched what it did to my parents. They lived in a small town with little or no support other than family. We did the best we could but was it enough?

Had I known then what I know now, I would have been accompanying my parents to appointments and asking questions about Lewy-body dementia. I would have worked harder to find respite care for her and I would have made sure the Dad got out for exercise, walks in the neighborhood at the very least. I would have tried harder to be there for them because I can better understand what they were going through thanks to our current situation.

The most important thing I would have done was to tell my mother that the helplessness and loss she was feeling was okay. She was watching the man she loved going through unbelievable personality and physical changes and could do nothing about it. I would have talked to her and explained that she was doing her best and that she would make it through. I would have explained that making it through probably meant accepting that she would lose Dad, but the reality was that we had already lost him to his disease. I would remind her of the love they had shared for 50 plus years and ask her what Dad would say to her if he were still capable of forming the thoughts and words. I would stress that understanding, accepting, and remembering the love are often the only tools we have to make it through as a CarePartner. That’s what I would have done if only I had known.