The last few days I have been asked on several occasions by others living with Dementia why if we have been advocating for 3o years has there been such a reluctance and the lack of real tangible change. It’s a hard question to answer, I’m not sure there is just one answer, there is as many layers to that question as there is to dementia.
it is surprising that after all these years people somehow still seem to think that Alzheimer’s and dementia are not connected, when in fact Alzheimer’s is just one of many types of dementia, it is just the most well known, in part due to the fabulous marketing done by many who make a lot of money off of it. Yes that’s right, money comes into the picture as one of the biggest reasons it has and is taking so long, there is money in having people be fearful of Alzheimer’s and dementia, from the Organizations that have become big businesses to the pharmaceutical companies, money is the driving force, not the actual well-being of the people living with dementia. If you start peeling back the sugar coated guise that most of them operate under you can clearly see, this is about business and money not actually the people living with the illness, other than that they use them to keep brining in the money. I know it sounds harsh, but it is a hard reality and one to which none of them will own up to.
On the other hand, it is not all doom and gloom for those living with dementia, for together the voices of people living with dementia have become louder each year. Partly I think due to the fact that people are being diagnosed earlier, and younger, so it becomes increasingly hard to keep the old image of what dementia looks like alive. As people are being diagnosed at younger ages, they are standing up using their voices, campaigning, advocating, demanding a place at all tables where Dementia is. From government bodies, to local groups, research, to medical, people are demanding change.
Although for many the change is not happening fast enough, tangible results are slow to see.
Yesterday, someone with dementia, who lives on the other side of the country from me said, please don’t stop using your voice, they said they can use their voice within their community but they no longer have their ability to use their voice at a national or global level. I said if everyone uses their voice within their communities, pretty soon the voices are so loud that they become part of the voices at all levels that no longer can be ignored.
Ignoring, or trying to silence the voices of those living with dementia because people believe that because their is no cure there is no point, or no hope, so why bother is as old a view as the disease itself. People once felt that way about cancer, about MS, and a multitude of other illnesses. It is true that there will likely never be a “cure” for dementia just by the nature of the disease, it is complex, but people can and do live for 25 or more years with the illness. So should we not be looking at care and quality of life instead of cure, just as people “live with Diabetes “, shouldn’t we teach people how to “ live with Dementia”. When people are diagnosed with Kidney disease, diabetes, heart conditions, cancer and others they are provide the “ tool kit”, to help them live with and manage their disease so they can live as fully as possible. They are offered continued resources to help them maintain and live as fully as possible. Is it not time ( it’s actually past time) that those living with dementia are offered the same. Our voices need to keep pushing for those types of changes. Many of us are more interested in having the resources to help us live fully, more so than we are in the cure, largely in part because we understand that “ a cure”, is largely unattainable. That does not mean that there are not and may not be the ability to have treatments and medications that can help with many of the symptoms of dementia, but there can any will never be “a cure” that can or will fit or work on all types of dementia, fie example my vascular dementia would need a different type of “cure”, than someone with the Alzheimer’s type of dementia. That doesn’t mean there can’t be treatments and programs that can help both.
Some of my conversations of late around all of this as also had conversations about how much more or for how much longer I and many others can continue to use our voices. We are tired, those before us grew tired and weary, when is time to say I’ve done what I can, time for others to carry the torch. Some can manage for years others not as long, all have an impact, but because all have dementia, all with varying types, all progress differently. So when is the right time to say, I’m handing the advocating over to others know, know I’m simply going to finish out my time living as fully as I can? It’s hard to walk away, we so desperately want to see that change happen, we want to feel as though somehow we have made a difference. It’s a question I have been asking myself a lot lately. 6.5 years into what I was told was a 3 to 8 year life expectancy after diagnosis, and I find myself facing some hard truths. My health is declining, much more than I like to admit,( that’s the warrior in me), but after this last hospital stay, after March and April’s round of Drs and Specialists, and conversations with them, the reality is that my “ good” runs, where I feel good and manage well, I was getting months at a time, and my bad runs, the time in between is becoming smaller. I can do less than before. Yes this was to be expected, yes they did say 3 to 8, yet somehow I felt I could maintain much better for much longer, in part because I have worked so hard to do so, as they say if I hadn’t I would not be here today. But somehow I still struggle with thinking I have and am much more able than is the reality. I have actually just had a new volunteer start, her name is Angie, and I am thrilled to have her coming to help me. There is a huge sense of relief that comes when you admit and settle into and accept that you need some help. I feel like having her come is such a gift to help me continue to do the things I enjoy and that keep me feeling and living a purposeful and positive life.
There will be many more decisions and conversations in the next month or so, living with dementia is always about facing new normals and it would be nice if in fact that we were finally given the tool kits that enabled us to do just that.