The topic for his blog we are sharing today is one that almost all of us talk about. Richard Taylor and Sid Yudowitchalso gave a brilliant presention on exactly this topic in Puerto Rico. Thank you Ken for allowing us to share your blog here.
by Ken Clasper
“As with many neurological illnesses there is nothing noticeable about our condition. It’s not like a broken leg or arm where there is a plaster cast which is obvious, or someone who is blind and has a white stick.
But how many times have you been told the same old words, you do not look like you have dementia,
I often wonder if it’s down to the fact that people feel embarrassed to talk to you about it, then just open their mouths and this falls out. I have been out walking with my wife on numerous occasions, and someone has stopped and spoken to her, then asked your clearly how I am, instead of asking me.
My dear wife always answers with the same words, ask him yourself, he may have dementia, but he has a tongue and can speak and think for himself.
I have to ask what dementia looks like? There are times I have spoken out and asked if people wanted me to have” I have dementia tattooed on my forehead” or should I be wearing a pair of horns like the old Vikings.
I was tempted to have a sweat band printed with those words once, but then thought it would bring me down to their level.
It’s very strange these days, but I know that I am not the only one who has hear this being said, and sometimes, it gets hurtful as if people simply don’t believe you.
I do think that part of this is because years ago dementia was classed as a form of madness and those with the illness were locked away, or put into hospital wards out of the way.
They also think that everyone who has the illness sadly sits in a corner dribbling, and I find that offensive. I have has people from social workers side of things who knew very little about Lewy body dementia, and made me feel like a Martian.
I have also been given verbal abuse from a carer at a conference, because I got lost for words. At this time to help me cope I would often make a comment about my moth eaten brain, which I did at this event. Never thinking of what would happen. This lady waited till I let the room for the toilet, and nabbed me when I walkedv out of the toilet saying that I was dis respective to these with dementia. I tried to explain that I had Lewy body dementia and she used the same old words. You do not look like you have dementia. Later on when I was on a panel answering questions this lady got up and walked out, but never apologised once.
Some people think that everyone who had dementia is deaf, as another social worker person kept shouting at me at home one day and then would come right up to my face, and shout at times. I am a mild person but this lady was very lucky not to have been slapped on this occassion because she also came out with the same old words. You do not look like you have dementia.
We are not weird we simply have an illness which is not visible like many other people, and while we have dementia, it does not own us. We also have a tongue and can think for ourselves given the chance
So please stop this form of stigma and treat us with respect and dignity.”