It appears that for the first years after being diagnosed finding the support groups is vital, finding different research groups and organizations to work with, to help you navigate and learn and understand your dementia, find and build relationships and friendships. Imperative to do, its how you find your way through to the other side of having being handed a difficult diagnosis. Many get heavily involved, they regain confidence in themselves, they learn to understand that they still have and are of great value and have much to contribute. Dementia and all that it is consumes us as we learn to navigate it.
Thats not a bad thing, for if we dive into it, we learn from others, we learn tools and skills to help us navigate, but at some point we also must learn to step back outside of all things dementia and remember to live, to get back to our life, different in many ways but to living.
We get so entangled in the advocacy and the dementia world, that we forget to live outside of it. We spend 7 days a week working on things, sitting in meetings, sometimes three and four a day, tied to our computer screen, to those who understand us. I have been one of those people who dedicated my time to many groups and organizations, wanting to help and make a difference, with little time left for actually life in real time.
About a year ago I started to scale back on some of those things and over the course of the last year I have really scaled back, being very picky on where and how I spent my energy and my time. Ensuring that my first priority must be to my life, yes I take my dementia with me everywhere I go, but it is not my life, it is my diagnosis, it is my illness. Getting back to putting time and energy into life has brought me to some incredible gifts on the life scale, I have and am with the love of my life, which is a love story for the ages, I have just moved to another city so we could build our life together. He has brought so much to my life, my illness must not be allowed to stop me from living and making the most of everyday, and it should not stop anyone from living, going and doing the things you want to with the people you want to.
It doesn’t mean you shouldn’t do advocacy or go to support groups, they are a wonderful place to share and care. But we all need to remember to work hard at finding the balance. We can and should ebb and flow with what we are involved in and doing as far as working within the dementia field. Dive in deep, step back and move in out of it as we need too and as we learn to live again. dedicating our lives to a causes ok as long as it isn’t at our own expense.
I have a few big events on the go, that will take me into mid May and thats enough for now, some of my work will just be ongoing, but I will be out living, enjoying life, still being involved but with equal time given to my actual real time life.
It has taken me almost 8 years to get that all sorted out, I have been blessed with meeting so many and learning so much, I truly believe that everyone when diagnosed should spend time engrossed in it all. As the years go by it becomes important for those of us who have the years ticking by to embrace all things in our lives that we are fortunate enough to have. I have made friendships that will stand the test of time, laughed and cried with them, those will not change as the amount of advocacy they do changes, as it certainly will, just as dementia is ever changing for us, so do does our roles within it.
Go enjoy! Find your Brave!b Embrace Life!