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


My mind seems to be swirling these days, aware of so many deep feelings, and feelings are the one thing that never leave someone with dementia, in fact as other pieces become more challenging feelings are the thing that brings things to us or back to us. How things, people and or events made us feel, we may forget some of the particulars, but the feelings associated with them are so acutely sharp, sometimes it feels like you can’t breath. Somehow feelings seem amplified. I have no idea if that is a good or bad thing, I guess it depends on what it is making us feel, sadness, joy, fear, the reliving of trauma’s, it is not a wonder that people with dementia are often accused of having behaviour issues when in fact they are very likely reacting to feelings that have surfaced that maybe unknown to those around them, and perhaps the ability to manage those feelings in a way one would have before dementia progressed is no longer possible.

I am admittedly extremely emotional these days, the unexpected and recent loss of my sister, has brought many emotions, and I am acutely aware that some of those feelings that are surfacing have in fact been sitting quietly somewhere in the recess of my brain and it has taken her loss to have those feelings surface. One trigger can cause a tidal wave of things to come bubbling up, they may or may not be related, it just takes one event to be a trigger. I say this because after spending years working in Dementia Care, I see things am aware of things that perhaps I always was and thats why I advocated so much for the people in care, but I understand it even more and differently now. How many times were people triggered and behaviours erupted and one thing was blamed when in fact it likely was something completely different that wasn’t being recognized.

I am still able to recognize where I am emotionally and how to take steps to do my self care, I know not to rush myself, I know not to make any major decisions. I almost at times feel guilty amidst the devastating crisis of Canada Health Care System, that my team of doctors have been doing extra check in with me, even while I was away, on my return, appointments set in place, when I watch the system let so many down, I am grateful and truly blessed by the care they have given me, but I also wonder how long they will be able to continue to provide me with such exceptional care, given the crisis of our system.

We all need to be gravely concerned, I am waiting for the one politician who is willing to stand up and say this is not working and today we are going to start doing something differently. Dismantling and getting rid of all the bureaucracy, get rid of the levels and levels of management, get rid of the multiple processes of paperwork, that is unnecessary, when will we learn that we overcomplicate things, we are paying with the cost of human lives. I am waiting but because, government and businesses including health care, because it has become big business, everything is amount money and power, I don’t believe I will see it in my time I have left, I do believe that we are in for some very heart wrenching times. I don’t like any of the political parties, they are all invested with so much corruption. The political systems along with the medical systems all need to be dismantled. Maybe this is the time for more woman to be put into play, not that they are perfect, not that there isn’t some that are just as corrupt as the men, but they do come at things from a different place and perspective or at least some do.

I worry about how to go about advocating these days, how do we measure if anything we are doing is actually making a difference? Is it all falling on deaf ears? More and more we see and hear of different organizations that are being brought to task for practices that are not in line with what they were meant for and they are causing harm. Perhaps all the organizations need an overhaul too, for they to have become more about the business than actually helping those they proclaim to help.

So emotionally all these things are bubbling up, how and when to do what and ensure that whatever I do for as long as I can that I do it with a good heart and good intentions. I will be getting back to things as I can, I will take time as I need to for healing, for grieving, my heart and soul need the ocean, I will work towards making that happen, life is hard for everyone these days, extra kindness, extra self care. Baby steps.

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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