I was at breakfast with several other CarePartners yesterday and it is always interesting to hear how similar many of our challenges are even though our People with Parkinson’s are at different points in their journeys. I hope they don’t mind if I share some of the comments I heard yesterday, I think they may resonate with the greater community. 

“He needs to know where I am at all times and often follows me around which can be too much.”

“I want to let him do things for himself, but it just takes so darn long!”

“I have to take care of my house, my yard, and my husband. How do I keep up with it all?”

“I feel bad when I hear myself constantly telling him to stand up straight or speak more clearly. I know he can’t help it.”

“We’ll be walking along and he just stops, his feet freeze. I feel guilty because I don’t realize what has happened and have left him standing there more than once.”

“I need to find a way to get away for myself because it wears me out being there 24-7.”

My life as a PD CarePartner is difficult because I see my husband struggling with challenges outside of his control and want to help, but there is not a lot I can do. I know this yet it still haunts me. Why us, why him, and yes- why me? One of the things that does keep me going is the knowledge that we are not alone, I have a whole network of people I can turn to when my patience with this disease is wearing thin. I also know that there are some very good researchers out there in the world looking at ways to make our lives easier. I know that we are strong and resilient; we can make it through. Most of all, I find comfort in the knowledge that we are never alone in this fight.