Well my diagnosis of Dementia was a few years ago now and it followed a long period of time since first telling my doctor I was having problems with my memory. In fact it was in the late 80s, early 90s, so you can see this has been something of a slow process. This is certainly one of the many concerns I have relating to all things under this umbrella term, Dementia; I’ll come back to it.
To say I was devastated is an understatement. I wanted to die and to be honest, my plan was to just do that. I’m very much a believer in being allowed to decide your own fate. Up until that moment I hadn’t really got much understanding of Dementia, other than what I’d heard in the media, but after that day, I wanted to know everything there is to know. It became an obsession, spending hour after hour online, buying one book after another and asking anyone that I thought would know, the questions that I wanted answering.
I first asked the medical staff at the hospital that had decided I had Dementia for their help, and my daughter and son asked, and I asked again. Eventually I had a chance to have several appointments to talk with someone in the hope of answering the questions I needed answers to. He was very polite and tried his best, often though he would say, ‘I will have to ask about that.’ He was a student, studying to be a psychiatric nurse, or doctor, I’m not sure. As I say he did his best, but they didn’t even give me the benefit of a qualified and experienced practitioner. I also had a psychiatric nurse, but when she came, which was never on time (something that caused me great problems), she was totally absorbed by her phone and the continual picking up, clicking and putting it down during our meetings led to the end of our fraught and non productive relationship.
The questions I had, are I’m sure the same as you have; What is it? What can I do to stop it? What can I take to slow it down? Will it kill me? Will I know when I reach the point of not understanding the world around me? How will I die and when? What became screamingly obvious was how little anyone knew for sure. The misconceptions, varying view points, contradicting research and so called evidence was and still is rife!
I’ve spent the time from being told until now, trying to get my head around the information and theories about Dementia and making some sort of sense of it all.
I’m not here to give you the answers, the definitive theory, or to make certain the uncertain, but I am going to spend the next year here, hopefully, on this blog, putting into words what I have found, what I believe to be true and most of all what has given me a future to look forward to. Maybe it could do the same for you too?
Is it too late, maybe not… I certainly don’t think so!