I wish I could put into words how important and massively appreciated it is when people who have received a diagnosis early in the progression of dementia speak out. I wish there was a way, without sounding daft, or crass, to say that the more people out there who speak up and tell it like it is - the things that show there is life with dementia and the cr@ppy bits too - the less dementia will be brushed under the carpet and the more we, as carers now and as likely as not, future people with dementia ourselves will know.
The more accounts I read here, the more I am reminded of my own mum. Like so many others, she was one of life's 'do-ers'. She climbed in the Dolomites and the Julian Alps, as well as the Lakes in her younger days and as a teenager, went off hitch-hiking with her friends and stayed at Youth Hostels in the days when it was safe
She was involved with the local church and Lady Farmers and a real hands-on mum too, who welcomed random friends of her children to stay in the holidays and always cooked superb meals. She was a Ninja Knitter (Arran and the trickier the better!) and loved crosswords and Sudoku. In short, she blows the theory out of the water that dementia only gets the people who don't keep their brains and bodies active!
As her daughter and now her main carer, when she started experiencing dementia, I wish every day that she had summoned up the courage to speak up and seek help years ago. There are so many things we could have done to help, instead of feeling hurt and confused by her behaviour. Dad died thinking it was somehow his fault
because after 50 happy years of marriage, he suddenly found himself on the receiving end of her delusions. Had mum and dad known and understood more about dementia: what the early stages were, what they could do and most importantly, that there is the help out there and there are good people who share their first-hand experiences and help the rest of us understand, well, that would have been a gift greater than any other I can think of!
Fortunately, the way society views dementia is slowly changing thanks to people speaking up and sharing ideas and information.
So, please don't feel that dementia means you have nothing more to say, or to give. It means you need to be heard and we want to listen, to hear and to help!