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.
jmgoyder 
Well done Julie 💕
so very, very true
Your cause is so worthwhile, glad you and Ming are spreading the words of your final sentence.
Thank you so much for sharing your experiences. You are helping take out fear and uncertainty, and help bring it to a “human” level. So important to know that dementia is not the end of being a human……
Well said.
Here, here, so bloody true
Will your Ted talk be on video anywhere Julie?
Yes but not sure when!
Oh I can’t wait!!!! I hope you are all doing well Julie. I think of you all often.
“A person with dementia” who has loved ones as devoted as you and Ming, are unbelievably blessed!
Keep the faith Julie 🙂
I am seeing more and more people with dementia and as you say it is different for every single person. Julie please keep writing because it helps all of us.
[…] Next up is one that hits close to home because I remember with my grandma there were times where it felt like the woman I had known had left before her body left but at others she wuld tell me stories of her childhood, though she was never quite sure who I was at times, she knew I was related she just lost track of how https://jmgoyder.com/2017/07/29/a-person-with-dementia-is-not-a-person-who-is-dead-and-gone/ […]
I’ve watched my mom diminish over the past two years with dementia that has taken her soul, in so many ways it seems. She remembers little from minute to minute, this woman who was so active that she worked at the Gap until she was 80 and played tennis until she was 81. She now sits in a wheelchair and (after months of silence) talks. None of it makes sense, but at least she has left the stage of anxiety and anger. The more we talk about the pain/fear/senselessness of dementia and what it does to our loved ones, the better.
People need to hear your message. Congrats to you and Ming!
Well done Julie. Hope we can see your talk soon 🙏🏻👏
Well said an kudos on your TEDx talk. I think those who walk away do so because the change is so painful they can’t bear to be present. Yet, if they simply kept up the visit, over time, a new revelation about the frailty of human life will surface and they will see the blessing in the challenge before them. Indeed those with terminal or degenerative conditions still need a loving touch and presence. It is never easy but worth the effort. ❤
Your TEDx talk was brilliant! I loved the give and take you and Ming have together as you journey with Ants. Your honesty and caring help the rest of us who are in this boat together with our own loved ones enduring Alzheimer’s and Dementia. Thanks for being you. I am so grateful we’ve connected. xo
This made me tear up. My mother in law had dementia and passed away several years ago. She is so missed.