I participated in a virtual workshop almost a year ago given by our local Parkinson’s support organization, Parkinson’s Resources of Oregon and SW Washington (“PRO”), where they provided a tool entitled “Care and Backup Support Plan.” It is a document that allows me to fill-in blanks and create a plan in the event someone else has to step in and care for my husband. It covers everything from basic medical information to self-care to who is in his support network. There is a section to enter information about local organizations or facilities we have already vetted should he need care beyond our home. It is a great document and will be wonderful once I take the time to fill it all out. Which brings me to my point. It is still in my computer, half-done, and will do no one any good there. Any tool is only useful when you actually utilize it. 

He also has an Aware in Care kit, provided by the Parkinson’s Foundation, designed to take with him when he goes to the hospital or urgent care. It is another fantastic tool that has a lot of basic information about PD. It also has cards we can fill out that tell medical staff about his diagnosis and gives them breakdown of the meds and supplements he takes. He has had 2 surgeries and at least 1 trip to the emergency room since we got the kit and it hasn’t left the shelf in our living room once.

There are many other organizations who provide support documents to make our lives, and the lives of the ones we love, easier. I would love to have them and use them but, where do I find the time to actually fill them out? Then, the next challenge is keeping them current. Medications change, doctors change, needs change and the information we share must keep up with it all. Any tool only becomes helpful when you actually use it and when it is accurate.

I am working on ways to find the time to complete our Care and Backup Support Plan. I am also moving the Aware in Care kit to our car instead of our bookshelf. Perhaps we will never need them, but if we do at least they will be there ready to do their job.