Walking through the Neuron Forest ….called Dementia
Written by Christine Thelker
I spent my life working in Dementia and Palliative Care, always advocating for the patients and their families, sometimes at great expense, career wise and emotionally, but I had a saying: “the truth may not always be popular but it will always be right”.
This was how I lived my life. So advocating for change was something that was just a part of who I was.
My story began about two years before my actual diagnosis, forging through countless doctors and specialists, being a widow and living alone, it was a frightening time, so much uncertainty. I suspected what was going on long before most Doctors were willing to consider Dementia, my GP and I had had a discussion about it, he thought it was a possibility but the specialists were less willing to test or consider it, I was too young they said, so after putting me through many tests and specialists until they had no choice but look at it for what it was.
I remember the day I received the diagnosis, Vascular Dementia, I thanked the Doctor, for giving me the relief of finally knowing. My job was immediately gone, go home get your affairs in order, enjoy life while you can. Thats the standard drill, theres nothing we can do, it is a terminal illness, make the most of the time you have.
I am a realist, I went home, got all my affairs in order, mine are probably done up much more explicit and tight, because I am on my own, and I wanted and needed to make sure their would be no room for error in how I wanted things.
For me living with Dementia brings about unique challenges as I live alone, I don’t have that someone to help me stay on track and organized, or that person who can make sure if I forget things important things still get done. But I have always said since the day I was diagnosed that my motto was going to be that, “I’m not done” and I strive to life up to that every day.
My life was turned upside down, in every way imaginable, I could no longer work, people were questioning my ability to drive, some even suggesting I should consider going into a care facility or at least assisted living facility.
No one in my circle could or does understand the true devastation this illness has from the inside out. No longer working I had to sell my home, I have since given up my car, (I still have my license), I have a life line with a GPS built in, the dreams and hopes I had for my future all disappeared. But I continually said I was going to find ways to have a life of some kind for myself for as long as I could.
I originally started my Facebook blog in an effort to help the doctors see what was happening to me, and then continued because I found it draining having to explain many times in a day how I was and what was happening, and what I was going to do. So I decided if people wanted to know they could read my blog, for updates, and perhaps it would help educate those who kept insisting,” you should do this or you should do that, or Why don’t you, or things like well write yourself notes, thinking that would solve everything.
Writing my blog, turned out to be one of what I call the silver linings of my Dementia, it turned out to be a way to continue to help others and share, and through all my blogging I have been blessed to meet many great people and it taught me to keep researching and looking for others and places facing challenges like myself.
Eventually my research lead me to Dementia Alliance International, and that has been the biggest silver lining for me.
It has enhanced my life in more ways than I could have ever imagined or hoped for and I no longer feel like I am fighting for things to be better for us on my own.
One of my biggest challenges is getting people to see me instead of my dementia, I hate the stigma around dementia and how it makes my day to day life harder. This is a battle I run into daily and sometimes it really takes a toll.
One of the other things that I struggle with is the loneliness, but not the loneliness in the sense most would think, the loneliness comes from missing me, who I was, who is slowly disappearing, its hard to explain to people that you miss her, the one that was, and on the days she still shines through, it makes you realize how much you miss her and how much everything actually has changed.
But I can’t say I’m sad, I’m actually quite happy, feeling quite content these days, I live in the now know, that has been another silver lining for me, living in the now has given me a certain amount of freedom in my life that others don’t have. I always say for everything this disease takes, it gives in the most unimagined ways.
I don’t know what my future will be but I do know “I AM NOT DONE” and I will continue to advocate, use my voice as much as I can to make changes so we can all live our best lives. I know there is many more silver linings yet to come.
Christine Thelker © 2018
DAI thanks Christine for sharing her story with us all.