“I felt for the first time in a long time, that someone was truly listening”
– by Agnes Houston
“Hi everybody, I tried earlier but I had no signal. What a great day. Face to face chat we had with the lovely guy from Radar. Can’t remember his name, in fact can’t even remember what day of the week it is just now. It was a very vibrant meeting. Thanks to you. And thanks to Comic Relief as well.
I felt for the first time in a long time, that someone was truly listening to exactly what we were saying. And you know something, you got it in one. I just don’t understand why Alzheimer’s Society and Alzheimer’s Scotland, the societies that are paid and states that they are listened to, and yet they’re not hearing what we’re all saying. So thanks again, it’s great to know we are being listened to, that you’re listening exactly to our words and to our lived experiences. Even if it doesn’t fit into the boxes of what our society think we should fit into. It is truly what we live day to day.
Poor Archie, he wanted to go home after we had our meeting and put his head in a bucket. That’s how tired he was.
Again I’m going to talk about self-management. When I said to Anne, as I say to everyone, if your loved one is the one who looked after you, if they went away for a month or two month could you self-manage, would you survive? Because if you need someone to help you, then that is most certainly not self-managing. Anne today talked about language and the use of language, so they need to change the word self-managing and say carers managing us, friends managing us, society managing us. But we are not doing, we the people with dementia, we, I know for the majority of us, we are not able to self-manage bills, daily living and keeping our households functioning. That is beyond us. Well the majority of us. May be there is one or two out there that can do this, but I don’t think it is the majority. And it is most certainly not me.
My daughter had to come home from Bulgaria, because I could not self-manage. But I wasn’t sick enough to get any help from anyone, not any society, not anyone. And going to a café does not help us to pay our bills, to manage our day to day living. That is no good for me. Going to a café, I can do this without going to a café. But what I can’t go without and what I need is being able dress in the morning, and being able to shower appropriately and be able to campaign. That’s what ticks my boxes. Not going to a café and complaining and chatting and not doing anything about things.”
