We have been dealing with changing caregivers and I have designed a spiel to share with them on that first day because what you see when you meet my husband is not necessarily what you get. His appearance can be deceiving and they need to understand his strengths and capabilities which outweigh areas where he may need help. His Parkinson’s symptoms often mask his true persona and I don’t want them to get stuck in a first impression that may not be great depending on the day and what is happening with his medications.

I like to learn about their experiences while also letting them know what they may face in our home. One thing I always ask is whether they have ever worked with someone diagnosed with Parkinson’s. This gives me the opportunity to remind them that everyone with this disease presents differently. The conversation usually starts in our kitchen and moves through the house as I explain the tasks I need help with. We finish in the living room where so we can include my husband in the discussion.

After a brief overview of what we have covered so far I ask my husband if there is anything he would like to add. If he doesn’t mention it, I will share specifics about his situation as they relate to his physical and cognitive challenges and remind the helper that he really prefers to do things for himself. I work to make sure any words I say are respectful and reflective of where he is in this moment while acknowledging the changing dynamic of his condition. I then walk away and give them a chance to figure things out. After all, he is the reason they are here and he is the one they really need to please as they figure out what this job truly entails.