I had the honor of speaking to a group of individuals with Parkinson’s, as well as those who are caring for someone with this disease, this past week and I came away thinking about how much support these families need immediately after the diagnosis.
It is only natural to let emotions flood our mind when we get such news and it makes it hard for the patient or the care partner to truly take in what the physician is trying to tell us about the next step. We are somewhat “blown away” and either we are feeling great fear, we are in denial or thinking about the dreams we had for our lives.
And yes, there needs to be hope for a new treatment or a cure (if available).
Once this news sets in, we seem to go to a place of – what do I do next? And, what should we do to plan for our future.
This is the time I would encourage all individuals with a progressive illness diagnosis to meet with a Professional Geriatric Care Manager, even if they are not yet seniors. To look at options that will meet their needs and keep their values at the center of all planning. From this initial meeting, individuals will be well-informed when they meet with their financial planners, insurance professionals and estate planning attorneys – because now they will know what they want and the cost of those options.
There are many proactive lifestyle changes individuals and the partners can make to live life fully once they have done their planning for the “what ifs” of an unknown future.
All along this journey, both the individual with the illness and their care partner will need emotional support – so, find a support group early in the process. Support groups are wonderful settings to share how new treatments or approaches are working and will give us all hope and most of all “understanding”.