I chose the title to this post to provoke a little interest and perhaps even a shock factor. The word demented has very bad connotations for me but it apparently is an accurate description. I have dementia, therefore I am demented. The stigma and misconceptions that go along with that description is what today's thoughts are all about.
Even though those of us diagnosed are suffering from a very unfortunate, terminal disease, we should not be treated as anything less than a complete human being yet that happens continually. They speak of us as being gone, like we no longer exist. Hello, we are still here! We may be losing abilities, one of those used against us so often is the ability to effectively communicate with those around us. That doesn't give anyone the right to say we are gone, that we deserve anything less than the best, dignified care that can be obtained or that we should be warehoused until we die. Everyone owes it to those of us suffering this disease to provide as meaningful as possible of an existence until we draw our last breath. It doesn't mean stick us in a chair to stare off in space with no interaction for the rest of our days. Yet this is how the so many of us are handled in later stage. I know people are so confused as to what to do with us but it requires thinking outside the box. It requires remembering that it is still a whole human being inside that shell, one with a soul and one with feelings even though they may not show outwardly very much anymore and they may or may not remember what happened 10 minutes ago. We truly, naturally go through a process that leads us to live more and more in the moment and disregard yesterday and tomorrow. Something non-diagnosed could perhaps learn a thing or two about. I see too many people living their lives all about either the past or worrying about the future. This robs you of enjoying the here and now. There are no promises about even being alive in the future and you can not change the past, so letting either totally change the right now is a mistake. Just something that took a disease for me to totally understand and I think many people never do learn that lesson.
So back to the diagnosed, it has become a focus of mine lately to not only do what I can to facilitate support among those of us diagnosed but also to try to organize more of a voice from as many of us as possible to the world. We need to be heard, we need to overcome the stigmas, we need to be more engaged in how we are to be cared for, how decisions will be made when we can no longer make them or communicate them and much more. Yet it is completely dumbfounding to me how much we are NOT included in these very discussions. Much of this goes back to the incorrect views that our thinking is "demented" and can't be trusted in my opinion. Or that we just aren't capable of providing valuable input. Would they take ANY other disease or lifestyle, etc and handle the decisions this way? OF COURSE NOT! To borrow from my friend Kate in Australia, would the heterosexual community get together and decide how the homosexual community was going to live and conduct their life? There would be unparallelled rage and of course they wouldn't dream of doing that! So why are we continually ignored in matters that are all about us and when we are brought in, it is usually in a token position that isn't taken seriously. This is rising to a level of extreme anger among many that are diagnosed. It is unacceptable and hopefully I can be some small part of changing the way people think about this process. We do still have important contributions on how to improve our journey through this disease that any of us would not wish on their worst enemy. That is another reason why it is so important for there to be meaningful change in how the discussion proceeds. Thanks for listening and reading. And thanks for keeping an open mind in the future about positive change as we face a worldwide crisis with these diseases.
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