Getting together with family over the holidays can be stressful, especially if a loved one has Parkinson’s. If you haven’t seen each other in a while, you may not be sure what to expect, what’s part of Parkinson’s disease (rather than what’s part of getting older, for example) or what to do about it.
Learn about a loved one’s Parkinson’s
It is worthwhile to familiarise yourself with the basics of Parkinson’s and how your loved one experiences the disease. You don’t have to learn every detail about PD, but having a general understanding will give you greater ability to anticipate change and interpret what you see.
Call your loved one before they visit
When chatting beforehand, you can plan the best time(s) to spend together, particularly if your family member’s symptoms fluctuate and they feel better at a specific time of day. You also can get a general sense of the situation, especially if you use video.
Plan for the unexpected
Many families report a “disconnect” between what they hear before a visit, and what they see when they arrive. If you have the flexibility, extend your stay a day or two and don’t pack your itinerary too full.
Settle in and observe
Your first impressions may be concerning, especially if they aren’t what you anticipated. Remember that Parkinson’s symptoms can fluctuate from day to day and sometimes even hour to hour. Some people have “wearing off” of medication between doses, which can make Parkinson’s look significantly worse until their next dose kicks in.
Ask questions and listen
Asking questions can help you understand your loved one’s experience with and feelings about their symptoms. Dyskinesia, for example, may look bothersome to you, but your grandma may prefer the extra movements to feeling stiff and slow.
Talk about what you see
Families have differing comfort levels when it comes to talking about Parkinson’s (and health in general). For some, there is an open dialogue around the disease and nothing is off limits. In others, a discussion about symptoms and care may feel awkward or even taboo.
Make a Plan
Before your visit ends, decide what you need to do and how to do it. That could be anything from talking to your brother’s doctor about his falls or getting your mum help to care for your dad in the home. (You don’t have to complete your plan during your visit, but do create action steps to accomplish it.)
For more advice on navigating family visits, download the full guide courtesy of The Michael J. Fox Foundation for Parkinson’s research.