Our children know that my husband has Parkinson’s Disease, we had that difficult conversation a few years ago, but I am not sure that they understand what that means. Do they realize that he has tremors that keep him from doing even the simplest of tasks or that slowness and stiffness are his constant companions? They all know he is no longer driving, but do they see how that much that limits his interactions outside our home? Yes, we told them about the diagnosis, but they don’t see the progression or know the extent of the impacts. This is a man they have looked to for help and guidance, how can I help them understand his current situation without taking away the man they knew before, without taking away their respect for him and his dignity?

It isn’t easy being his ambassador, the voice that explains the challenges he faces every day to the rest of our family. They need to know that if I wasn’t here, someone would need to stop in daily to make sure his tremors are under control and that he able to safely shower and dress. They also need to accept that he doesn’t drive and that someone needs to come by regularly to make sure he has groceries and a ride to medical appointments. And, while it is important that his children understand the challenges Parkinson’s has brought to our lives, they also must see the strength that my husband shows every day as he faces and overcomes them.

I am going to find a time for a conversation with them when he is present. I need to make sure that they all know the truth in what I am saying and see that their father is there with me 100 percent. And, I need to encourage him to take the lead in the discussion when he can to make sure that we are all in agreement. Because, while I share this PD journey, it is his life and those of us who love him need to be prepared to step up should he need us. He is strong but may need us in the future, I hope I can find the right words to share the importance that we all be ready together.