This was the sentence that I began, and ended, our TEDx talk with last week. Like the other speakers, Ming and I only had 15 minutes to deliver this talk which was a challenge as I had written this massive missive of around 20 pages! Thankfully Ming convinced me to turn this into a cue card presentation and we practised it in a hallway before the event began.
It is extremely difficult to talk about Dementia because everyone has a different story of what it’s like (for both the person with the disease and the carers). Ming and I now have a disclaimer that admits our luck in that Anthony’s personality hasn’t changed and that this is one of the many reasons we still find joy in our interactions. We acknowledge that other people, coping with the multi-faceted aspects of Dementia, may be in hellish situations.
I am so glad that Ming and I had the opportunity to talk about our own situation. Anthony is immobile now, his previously loud voice a whisper, and mostly he doesn’t know who Ming is. But he is still alive, free of pain, accepting and full of love for me; it’s a beautiful thing.
If I can influence just a single person to visit their spouse, parent, friend, I will feel I’ve made a slight difference. There are so many thousands of people with Dementia in nursing homes who never have contact with loved ones; these people are, quite possibly, the loneliest people in the world.
A person with dementia is not a person who is dead. And nobody is ever, ever, gone.