On the Wednesday, 20th December 2017 i am keynote speaker at a huge conference in Torquay, this is my speech, hope it helps you all so much, please leave comments, and let’s make 2018 the YEAR WE SPOKE THE TRUTH ABOUT DEMENTIA
The conference is called
so here goes…
I have dementia, IT’S THE worst thing I can ever imagine anybody having, yes there are other illnesses out there and just as awful, but today we are talking about this one.
What’s worse than having dementia? KNOWING you have dementia!! And with Lewy Body’s, sometimes, this is the case!! As in my case, I have dementia and I know I have dementia,
I suffer terribly from Sundowning, not every day, but some days, I get worse as the day goes on, I do some weird and wonderful things whilst I am Sundowning, I shout, I scream, I dance in the street, I hallucinate, I talk and see people that you don’t, I will not say that isn’t there because in my world they are!! I fight and thrash about every night putting my wife and loved ones in danger, I run around the room wide awake at three o clock in the morning, hallucinating, chasing murderers and fighting those who wish to harm my family, and then ?????
I wake up in the morning, get up and do this???? I talk to people about dementia and look (TO THEM, that is ) as if though there is nothing wrong with me ??
Then, and this is one of the worst things, ITS B****Y dementia that decides what you remember from the night before, and not you!! It’s like you have no free will of your own!! You suddenly start to remember some of the things you did the day before, you feel ill you are so embarrassed, and then you feel sick!! Why?? Because there is a good chance you’re going to do something very similar again and again and you have no control over it!! Can YOU imagine that?? Having no control of some things you do??
Total Chaos I call it, I refuse to call it total madness because it’s such a grey area, Is dementia a mental health condition?? In my humble opinion? No its not, because mental health conditions can be cured, this cannot, this is terminal, I am terminally ILL I am going to die from this or something related to it PERIOD!!
This is dementia as it really is
Does that sound normal to you ??? Can YOU imagine living this kind of life every day ??
That’s just the tip of the iceberg there’s a long way down to go yet.
I stand in front of you today, hopefully, articulate and well expressed, but how do I know this, is this dementia playing another trick on my mind, am I really here?? or is this just another one of my fantasy’s, how do I know what’s real these days and what’s not ?? I sit there sometimes, at home and wonder what’s going on, wonder how I even got to this stage. You will notice this with some of your patients and residents; sometimes they go really quiet and subdued, into their own world. Well, when I do this? I think of days gone by, of how hard I worked to feed the family, the struggles we had to make ends meet, so we could look forward to a happy and very long retirement, only to find myself in this state, wondering if people really believe what I say, seeing the look in their eyes when I act daft, thinking AWWWW Poor thing look at him, Thing is I have ALWAYS ACTED DAFT!! I LIKE ACTING DAFT!! It’s not my dementia?? ITS ME!! The real me having a good time, and sometimes making people smile, it’s not an act, it’s not dementia it’s me for Goodness sake having FUN !!
TRUE STORY When i was first diagnosed and when my Dr said You have dementia, do you know what Elaine’s first words were to him ??
How do you know he has dementia????? he is always and has always been like this!!!
(Thanks Elaine LOL)
PLEASE Try and remember who I was before dementia, and who I am now, I am still the same person, I just have a disease of the brain !! I am ILL just like anybody else
Then, there are the comments I get, and you wouldn’t believe some of them??
the most common one is
You don’t look like you have dementia ??
What the H*LL am I supposed to look like??
And one of the strangest ones is
You don’t SOUND LIKE you have dementia??
Well, unless someone has invented a language just for people with dementia and haven’t told me, I have no idea what that’s supposed to mean??
But beware; there is a new kid on the block!! People have said to me three times now in less than a month,
“You present yourself very well”
But they’re not kidding me, oh no ??, I may have dementia but I am not stupid!! It means the same thing so please don’t be fooled by the new wording.
This is probably the hardest one to talk about, not just because I am a man, but because it involves cleanliness and little accidents as they call it, you wanted to truth ?? here it is .
People with dementia have accidents, they wet themselves, they soil themselves, they do NOT do it to wind you up, they do NOT Do it on purpose and they don’t DO it to order !! Its nothing you have said or done, it’s not your fault, but it certainly isn’t their fault either, Shouting at them, cussing them, calling them names because of it is nothing short of verbal abuse !!The signal that tells the brain that they have had a wee or a poo has been lost somewhere, they have no idea what happened, It’s NOT THEIR FAULT, THING IS !! they can still smell what happened, they can still feel the wetness, their sense of smell hasn’t disappeared or their sight, they look down and can see what happened !! They can feel the dampness on their legs when it cools and how uncomfortable it is regarding the other. Then there’s the embarrassment of being cleaned up, washed and made to smell ok again, take a second and imagine if this was you who had to be cleaned up, what would you feel like !!
Not nice is it? They may have dementia, but they still have feelings, they still get embarrassed, just like you and i would, dementia hasn’t taken all that away.
Let’s take a minute to think about this ?? What would you call Independence ?? Free will, living where we live? Free speech etc ?? your probably right on all counts, but for me ?? Do you know what i call independence ?? Do you know what i miss most of all ??
Walking to the corner shop ON MY OWN for a paper and a pint of milk on my own !! Yes on my own, i cant because of my Spatial awareness, because i cant cross a road by myself or I will get knocked down as i forget to look both ways, Everywhere i go i have to have someone with me, never any ALONE Time for me ever again, or me time again for me, never again to sit and chill on your own, in an empty house, or walk across the moors yourself working out lifes reasons, imagine that,
imagine if that was you, how would YOU Feel ??
So, where does that leave us ?? You wanted to to understand a little more about dementia, and i hope you do now, but it that it ?? Do we just leave it there ?? Or do we try and do something about it?
2018, as far as i am concerned is the “” YEAR of the TRUTH ABOUT DEMENTIA! “”
We have come so far in the last ten years, but not far enough, we are still hiding behind the shadows of dementias cloak and frightened to talk about the things that most important, WHAT HAPPENS NEXT After diagnosis, it wouldn’t happen with ANY OTHER Disseise!!
How many people had realized how bad dementia really was, and more importantly
How many people, had been told about ANY of this when their loved one was diagnosed??
Just what are the GP`s , Gods, err sorry Consultants LOL, Psychiatric nurses thinking about ?? Do we not deserve to know the WHOLE TRUTH about dementia ?? WHY would you hold back such important information ?? if you get diagnosed with cancer, or heart problems, you get follow up after follow up appointment , someone is with you at every step of the way!! Not just get a phone call, if you’re lucky, about once every 12months for goodness sake .. THIS HAS TO STOP !! SOMETHING HAS TO BE WORKED OUT AND QUICK !!
Why does it all have to be blamed on the F WORD (Funding) funding all the time, why cant volunteers of ALL organizations to work together, educate each other so they can be there for all when someone gets diagnosed, people like us DON’T WANT PAYING !! WE WANT TO HELP< Please LET US HELP< Kick whatever politics you think you have out of the front door and start to open up to each other, SHARE INFORMATION, for Gods sake its not a state secret, you can find anything on Google these days, but that’s not as good as a real person, sitting you down, holding your hand or drying your tears, i am sorry but it's not!! We have PROVED with the Global Purple Angel campaign almost ANYTHING is possible!! And with VERY VERY LITTLE MONEY and NO WAGE BILL!! Believe me, if we can do it, with Myself at the helm, anybody can!! YOU Can help, YOU CAH HELP every day of every week of every year, and its so simple to do so, just by changing things slightly to what you are doing now. Sundowning is one of the worst things that can happen as we have just discussed, so how can you help with that? Well, is so simple !! Change all the times of the appointments of your loved ones /clients residents to a morning appointment, it really is as simple as that, no matter who they are seeing, a dr, a dentist a hairdresser Psychiatrist?? it doesn’t matter, but if you change their appointments to the morning, they will feel better, your job will be easier and who they are going visiting will understand them a lot better, SIMPLES REALLY I will finish off with this “ I DON’T CARE if I cant remember yesterday|” “ As long as Today os ok, that’s ok then !! ” End