Living with Dementia was not a life-style choice that I made consciously.
For me, a diagnosis of Dementia has closed certain doors, yet opened others.
It closed the door to my ability to continue to work in paid employment, in an area that helped to provide a sense of identity. The forced departure from a career that I loved, and I think that I was well respected in, suddenly occurred two years before my diagnosis. This loss took some time to ‘get over’, if in fact I have fully. As many of you know, I worked in and managed all aspects of the education of primary school students in a large school. A valuable profession. However, I no longer had the capacity to do many of the things that I once took for granted like problem solving, decision making and planning.
More recently, doors have closed on friendships that I would have thought could have withstood the test of time. But sadly, they didn’t.
Although Dementia has robbed me of my ability to do many things, and others that continue to emerge, it has opened other doors, hitherto, not a part of my previous life. New supportive friendships have been established and I have met many people who’s paths I wouldn’t have crossed, without Dementia.
One of the doors that opened is as a result of my membership of Dementia Alliance International (DAI). Only people living with a diagnosis of dementia (PWD) can be members of DAI. One of the initiatives of DAI is their weekly on-line, support hook-up session, facilitated using a medium called Zoom. We can chat about anything, including the weather; how we’re feeling that day; our concerns and share solutions; what we’ve been doing or planning to do.
It was during a recent zoom meeting, one person said a positive comment about our lives and the conversation went from there, with more positive comments and some laughter. Thinking about the conversation afterwards, I realised how truly lucky that I am that I still have the capacity to talk, to think (if somewhat impaired) and to socialise with others.
This highlighted to me how precious life can be, and that we should never take it for granted. I felt blessed that I am able to still do the things that I can. We should make the most of every moment.
My thoughts then drifted to thinking about other new doors that have been opened to me. For the past two years I have become a strong advocate for living well with YOD (Younger Onset Dementia) which has involved public speaking engagements in local, state, national and recently in international arenas. The purpose of these speaking engagements is to educate the community about the existence of YOD and about the stigmas and stereotyping associated with dementia that abound within the community, which must be addressed and dispelled. I believe that sharing my story, and listening to the stories of others who are doing their best to manage each day, and look for the positives when they can, will help change the pubic’s perception of dementia. It is not only ‘end of life stage’. By doing this, I and other PWD hope to demonstrate that a PWD can still live a productive life long after diagnosis.
To sum it up: Travel takes a lot out of me for weeks and months, and I still haven’t fully recovered from our recent trip to present at ADI Budapest and our holiday. However, I need to get some perspective again about the doors that have opened for me, and how lucky I am. So I’ve decided that despite how I’m feeling today, whist I still have the capacity I will continue my advocacy work as it gives me a new found sense of purpose in life. Glenys shares my passion and I’m sure she will continue to support me moving forward. We are a good team together.
I stand by my comment: