Advocates Advocating Christine Thelker © 2020 Dementia Event For This I Am Grateful Good Grief Living well with Dementia Silver Linings Stress


I have been thinking about the oddities that come with my dementia, things that were not part of my being in the past. Or perhaps they were I just never had the ability to realize or understand it. But some things are new patterns and I believe they are the brains way of coping and managing. For example after my recent TIA’s, as in the past the fatigue comes, the slower and hesitant speech, all part of the brain wanting and needing healing time, that is getting better, luckily no amount of any more severe effects, for which I am grateful.

But those odd things, like my just wanting and truly wanting to be just spending time organizing. This time it was my entrance closet, you know the one where the coats, boots, shoes, all those things go, all the things you need and want to keep that have to go somewhere. I spend a great deal of time taking everything out, looking at stuff, deciding what to keep what not too, painstakingly organizing it. Its like somehow my brain needs me to so that it can reset and organize itself.

Its funny I remember often how we talked about the strange behaviours or patterns or needs for certain people in dementia care, when I worked it, but being on the other side of it now I see it from a different viewpoint. Its only my opinion but I believe when we are doing these strange and seemingly odd things, its actually our brains way of doing self care, it takes us into a place and part that allows it to try to heal, a place that helps us remain calm and quit. So often we stopped people from ” playing or mucking with things”, more I think as it was an irritant to us, a nuisance, we didn’t feel it was somehow appropriate, the little bags of treasures that they somehow needed to go through over and over, but I now fully understand how important those things are.

If anyone had tried to drag me away from my closet, from my organizing, I likely would have been upset, perhaps even agitated. Sometimes as much as it can be difficult to live alone, it is a blessings as those little oddities are not bothering anyone else, so I have been able to just be in the quiet with my brain, giving it the time and space to do what it needs so that I can continue to manage.

Its funny that over time living with my dementia, I understand my brain more, it’s like I treat it has a separate but yet very important part of me, I somehow have formed a partnership with it, I listen to it, I let it guide me, for it may be broken, it may operate differently than before, but it still (guides me. It takes me and places me in things that allow me to just be, its a phenomenal experience, especially to be able to understand it. Or at least understand it for what it is for me. There is a saying about listening to your body, taking care of it, because if you don’t, it will just take it, and very often in ways that are life changing and life altering, it took being diagnosed with Vascular dementia, along with a whole host of complicating factors and living with it for all these years to truly appreciate and understand my brain. And as I feel the fog lifting, I am understanding that this is another step, that again I tire a little more easily, yet somehow I am content, I don’t want to fight it, I don’t want to push to do more, I want to just do what my body directs, what feels right for me. Next week will likely see me back at my advocacy work, although to what degree I am not sure.

Speaking of advocacy, it seems there are many changes and shifts in the advocacy world, it is important work, but there does come a time when the torch must be passed , but it somehow appears there is less and less who are willing or wanting to take up the work. I wonder if thats because they feel we have not seen enough tangible change over the years, or if they simply have decided they are just going to live their life’s as best they can, doing what brings them joy. A lot of people, understand the importance of the advocacy work, but they also somehow seem to be-able to place more of emphasis on self. Neither is right or wrong, and for many in the advocacy world knowing when to hang up the reigns and focus solely in living life is a hard thing to manage. I am trying to teach myself to transition, to jst step back from some, giving more time for the joy. I continue to be a work in progress, trying to change and adapt to the changes with my illness and its effects on me.

By WWW.Chrissy's

I am an advocate for people with dementia in Canada and globally, having been diagnosed with younger onset dementia myself a few years ago.

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