Hi everyone,
I've just signed up to Talking Point, to find out if anyone else has had hurtful remarks made about their relative's Alzheimer's. My mother has had the disease for a few years, and is now in a home - we had an appalling time before then, with my disabled father pretending that all was well and trying to cope on his own. My sister and I worried ourselves silly about them, until finally, after my mother had attacked my father, thinking him a stranger, he admitted that he couldn't take any more. My sister and I then spent eight hours in A&E trying to get her admitted, and she spent six months in a grim psychiatric ward until we finally got her into a really good home. It's still not exactly easy, particularly when she stands at the locked door waving us goodbye, but we know she's contented, safe and well looked after. All the time, though, we're aware of what's to come as both our grandmothers died from Alzheimer's.
But what has appalled my sister and me is other people's responses to what is obviously an extremely distressing situation for us. If they forget a word or a name, they laugh and say happily that they're getting as bad as our mother or that they're getting Alzheimer's. We've had that on numerous occasions. The very worst was when a good friend commented on my mother and her new "husband" (my mother has latched onto a male resident at the home, thinking he's my father, which is a great comfort to her). The friend asked me if my mother and this man were having sex. I'm afraid a red mist descended and I squawked at her. She was horrified that she'd hurt me, but clearly didn't understand how. For the sake of our friendship, I've glossed over it, but it still rankles.
Her remark obviously stemmed from ignorance, so my sister and I asked around to find out what people with no direct experience of Alzheimer's actually knew about the disease. The results were depressing - absolutely everyone said it was just a bit of memory loss, which got to a certain stage and then didn't get any worse. They had no idea it leads to death.
It's made me do a lot of thinking about how I can help raise awareness. As I'm a journalist, I'm putting together an article to explain what it feels like to be on the receiving end of people's ignorance and to have to cope with their remarks on top of the misery we already feel about our mother. If she had cancer or heart disease, I'm certain no-one would joke about that - so why about Alzheimer's?
Can anyone give me examples of their own experience - people's unthinking comments, more evidence of how ill-informed people are about such a common and awful disease? I won't use names - I just need the information to lend weight to the article. If it helps just one person to understand a bit more about the disease, it will have been worth it.
Hope you can help.
I've just signed up to Talking Point, to find out if anyone else has had hurtful remarks made about their relative's Alzheimer's. My mother has had the disease for a few years, and is now in a home - we had an appalling time before then, with my disabled father pretending that all was well and trying to cope on his own. My sister and I worried ourselves silly about them, until finally, after my mother had attacked my father, thinking him a stranger, he admitted that he couldn't take any more. My sister and I then spent eight hours in A&E trying to get her admitted, and she spent six months in a grim psychiatric ward until we finally got her into a really good home. It's still not exactly easy, particularly when she stands at the locked door waving us goodbye, but we know she's contented, safe and well looked after. All the time, though, we're aware of what's to come as both our grandmothers died from Alzheimer's.
But what has appalled my sister and me is other people's responses to what is obviously an extremely distressing situation for us. If they forget a word or a name, they laugh and say happily that they're getting as bad as our mother or that they're getting Alzheimer's. We've had that on numerous occasions. The very worst was when a good friend commented on my mother and her new "husband" (my mother has latched onto a male resident at the home, thinking he's my father, which is a great comfort to her). The friend asked me if my mother and this man were having sex. I'm afraid a red mist descended and I squawked at her. She was horrified that she'd hurt me, but clearly didn't understand how. For the sake of our friendship, I've glossed over it, but it still rankles.
Her remark obviously stemmed from ignorance, so my sister and I asked around to find out what people with no direct experience of Alzheimer's actually knew about the disease. The results were depressing - absolutely everyone said it was just a bit of memory loss, which got to a certain stage and then didn't get any worse. They had no idea it leads to death.
It's made me do a lot of thinking about how I can help raise awareness. As I'm a journalist, I'm putting together an article to explain what it feels like to be on the receiving end of people's ignorance and to have to cope with their remarks on top of the misery we already feel about our mother. If she had cancer or heart disease, I'm certain no-one would joke about that - so why about Alzheimer's?
Can anyone give me examples of their own experience - people's unthinking comments, more evidence of how ill-informed people are about such a common and awful disease? I won't use names - I just need the information to lend weight to the article. If it helps just one person to understand a bit more about the disease, it will have been worth it.
Hope you can help.