The last couple days As I have income to realize I am in this place of wintering, I have also enjoyed the opportunity that it has given me to be think about things uninterrupted. The noise of the every day, the noise of the world removed and just clear thoughts. It gave way to thinking about this walk with dementia I have been on, it’s my eighth year walking along this road. A road that caused me to change my perspective in many ways on many things in life, what’s truly important, where my time and energy is spend and on what. It changed my view of what life was really about and for.
Yes, I have always advocated for others, always tried to give of myself to make others worlds a little brighter, and I will always be proud of that, never having or putting an expectation on anyone for anything in return. But I also lived a life of caught up in the world of having all the stuff, nice clothes, nice car, nice home, nice furniture, that materialistic world, that world that our commercialized society has taught us we must have and need. What it doesn’t teach us is that one instant it can and often does change, one instant like a diagnosis or illness.
Working through those losses and changes, coming to terms with a life that is stripped bare, and putting it back together, completely different, a rebuild. It is not easy, in fact admitting how difficult and scary it is, is not easy either. As we try to portray “ living well with Dementia”, but living well with dementia, comes through much hard work, determination, grit. Accepting the hard days, sometimes weeks and months, being willing to admit sometimes we need help with certain aspects of things. Maneuvering the sometimes daily changes, in how hoe dementia is impacting us, the exhausting work of it all. Doing it all so we can “ live well despite our dementia”, because one day well lived is a win, because once we have been stripped to the core, overcome the fear, we understand that to be here, to have this day, to enjoy, in whatever capacity we can.
If I can put my finger on the thing that has helped me thrive through this dementia journey it is simply the “ Community of People”, I have been blessed to come to know since my diagnosis. Through my work and involvements with groups like Dementia Alliance International, Dementia Advocacy Canada, CCNA, AgeWell, and others, it is here the people, the friendships, the connections, the sense of community. That community where we feel safe, cared for, respected and accepted. I am also blessed with however increasingly small circle right here in my own community a circle of those who truly also provide me with support, caring, and they are immeasurable to me.
In the Advocacy world, we share much respect for each other and encourage each other, friendships that span the globe, it is amazing how deep that runs. The immense pride we have of and for each other, the encouragement we give each other as we together try to change the worlds view on Dementia. It doesn’t at times seem like others who are outside of that world can understand it. We have often heard that they don’t think the relationships can be “real”, but they are the most real I believe I have ever been part of.
I am grateful for this community, for these friendships, as I am all the relationships I have, for without having found and becoming part of this very special community! I believe, this disease, my dementia would have overtaken me. I believe with 100% certainty this community of people that work and live and take part is one of the best gifts I have ever received. I am grateful to and for this incredible community.
We have recently lost a dear friend and advocate Roger Marple, and the loss of Roger, who I was blessed to have as a friend, and how the loss of Roger has been felt around the globe, speaks to and reminds us all of how truly special this community is. RIP my friend, you will forever be with us. Thank you for the friendship and for all you have done for all in the dementia arena.
I will leave you today with this great photo of Roger and I having fun here in Vernon.