Its a topic we hear about and talk about all the time and at times it seems almost like when we are asking and looking for help and answers as to the why’s and how’s we are ungrateful, which in fact is so far from any truth. So what am I talking about? Well it’s about the fact that everywhere we look, for example I had a newsletter come today almost every thing listed was for and about caregivers and caregiving. Again, we are grateful that the caregivers are getting the much needed support they need and ask for. They truly are a deserving bunch.
The issue is why aren’t we the people living with dementia getting the same? I am not wanting to put blame anywhere, I am truly wondering why the vast difference? Is it because people with the lived experience find it easier to just let the care givers do and be the voice? Do people with the lived experience somehow feel like no one really will or wants to understand them from their own viewpoint? Do people with the lived experience somehow feel like no one actually cares about what they personally feel or think? Why oh why are people with the lived experience so afraid to step up and speak out? Do they not want to offend or upset their partners and those providing care? Has the years and years of stigma around dementia been ground in so deep that those with dementia still feel they need to hide it, not talk about it? Do they still feel like they have no value after the point of diagnosis? I see people with the lived experience who have become part of peer to peer support groups like the ones run by DAI http://www.joindai.org, and Dementia Advocacy Canada, and I have watched so many people with dementia find their voices and find purpose, and they come alive at those meetings, and many have gone on too contribute to their own communities, countries and the global voices of dementia, they have and are doing incredible work. However there is still a vast number of them who won’t, or can’t or don’t feel they have enough to offer to step outside of the support groups. the support groups offer a place of safety, no judgements, just acceptance, is that the missing piece that other venues have yet to be able to offer?
Are those living with dementia still feeling as though they will be judged, or treated as though they are less than equals with others?
There has been a very noticeable shift in recent years in how those with dementia who do step up and contribute are seen, and treated. In most cases they are treated as equals. I describe it this way, its like bringing everyone to the kitchen table, talking, listening and sharing, your background, your chosen profession, none of those things matters at the kitchen table for at the kitchen table we are all just people. There is no hierarchy at the kitchen table, just people. Too often too much emphasis is put on what we do, what we do does not make us who we are, yet people spent years equating them to be. Research is about much more than labs, and test tubes and people in white coats.
The shift that has happened particularly within the research realm is that researchers embraced working with those with the lived experience, collaborating, working side by side. The benefits for them is they get to learn from us, understand right from the source what we need, not trying to do research based on assumptions of what we need. We benefit because we get to help ensure the research being done is for us, with us, not just about us, we make connections, we contribute in valuable ways. It provides purpose. So I am not sure how we reach all those sitting feeling like they are not valued and or understood, because there is places for you to feel like you are contributing, like you are of value, that you belong, that life is and can remain vibrant. It may not be life as you knew it, but it can be just as meaningful maybe even more meaningful. The big question is how to reach everyone and encourage them to take part so that we along with all the others who are yet to be diagnosed will have a better quality of life?
Again I started this blog days ago, and am now back to finishing it or adding to it, I am not sure. My recent days have been a mess of blinders, bad brain days, unable to complete many simple tasks. I was trying to print some important things off my printer, I could not get my printer to work, had to get some one else to print the things off, the following day, or perhaps a number of days, I am losing days like crazy, trying again, after two hours with anxiety hitting an all time high ( dealing with anxiety is a fairly new thing for me), off to the Staples store I went. Trying to print it on one of their computers, nope brain is just not able to manage to connect the dots, store manager saves me and my day, by taking over for me, which went a long way in helping get my anxiety back in check. Next day trying again, now I have created such a mess my printer is totally taken out of my computer, I don’t know how to get it back up. It’s time to admit, I need to bring a computer person in to get things going in the right direction again. This will also go a long way in keeping anxiety in check. So I thought my printer was faulty but its my brain showing its faulty wiring. My brain is tired though I have been working on a few pieces for upcoming events and those things are draining my brain more quickly now so I am going to have to retrain myself to manage them in a different way at a different pace. Without the help of some wonderful researchers and those friends who step in and help none of it would be possible anymore. I am getting out more now that the days are cooler, and enjoying having the doors and windows open all day and night. the walking is good for me and I can hopefully get some exploring in before the snow settles in.
I feel like I am pushing hard to get one or two more decent years in, do things I want to do, it feels like many of us are pushing hard at on many fronts with our advocacy and work with research, in large part because we have yet to figure out how to reach others so that they can pick up the baton and keep things moving. So if you need help to get connected reach out we are all happy to have you come aboard and get involved, you will meet great people, share lots of laughter oh and yes perhaps at times tears too, but your life will surely be enriched.
This is so appropriate for today as the clock strikes 9 am and my brain already is telling me its tired.