Carers of people with dementia

She'd agreed and in fact she did it off her own back when we asked her to go and see somebody. That there was something wrong and she, I think she obviously knew that there was something wrong herself. And much against her better judgement she agreed to go and see somebody. But she, the person she chose was somebody that she'd been at university, and she saw him privately, and she knew his wife quite well.

So I think she, it wasn't an independent assessment entirely and I think she probably put her, well her university, I mean, she hadn't kept up with him particularly but I think she put him in a difficult position. And I suppose I thought because he was maybe more friendly that he, I mean more of a friend rather than a professional colleague he might be able to say 'Well I think your mother's in trouble,' or something to indicate that we were in difficulties rather than it was something that would pass.

And I, I think that's, I would have thought the ethics, I understand where his ethics are from but from, from the relative's point of view, when you're struggling and you don't know if this is something that is treatable and she's not being, she doesn't want to get treated, or if this is something that there's nothing you can do about and you're just gonna have to live with.

I think it's a big difference and if somebody is able to inform the relative that this is not a passing thing, it's not something that is treatable, I mean it's her choice not to be treated for depression if she doesn't want to. But if she's dementing then it is the relatives in the end or somebody whose gonna have to pick up all the pieces, and I think it's only fair to the relative or to whoever it is who is the carer to give them some idea that this isn't a treatable thing, it's something that's, you're gonna have to live with. And I don't know how, how the medical profession are gonna resolve that one.

I think, I've thought for a long time, even since my mother, you know that last crisis we had with her, that I think the medical profession has some obligation to those who care for, and I don't think they do. They have a care to their patient, and their, their obligation in the current way things are organised are to the patient, and to their confidentiality, to their integrity and so on. And not to those necessarily around them. I think, I think they do worry about them and I think a lot of GPs are concerned, but their primary responsibility is to their patient. That's in my experience.

I think with something like dementia and something that is going to involve long term chronic deterioration in somebody, if you're gonna get a good effective support for the patient you have to get the relatives - or whoever is gonna do the caring - on board as soon as possible. And to make it feel that they're part of some kind of plan or, I mean I know a lot of relatives run away from the whole thing, they don't want to have anything to do with it. But for those who are gonna do it or for those who are gonna be responsible.

So if you have to make decisions on behalf of somebody else you're on very shaky ground unless you can prove, I was going to say, demonstrate is a better word that you are genuinely doing it with their interests in mind and that's a big issue on occasion because of the sort of things you might be dealing with. Like giving away the brain to, for donation; like deciding to pay for a funeral in advance; like selling property and disposing of the contents of it, all those things really.

If you're doing them without the other person's knowledge, provoke a lot of questions and I have to say that although we tried to tell my mother that we were doing these things, it wasn't always possible to tell her in any way to be convinced that she understood. So we might have said it but it wouldn't necessarily have penetrated. And sometimes we didn't even say it because it would have been distressing for her, but we had no alternative but to do some of the things that were done.

I went to see her, and this was so unlike my professional mum. She had a skirt on with bright red flowers, it wasn't her skirt, and a jacket that was a pink, a bright pink, shocking pink, hand-knitted matinee jacket, which again wasn't hers. She had white tennis shoes that weren't hers, navy blue tights that weren't hers and she had her nails painted with bright red nail varnish!  

Which, my mother's never worn in her life, well she might have done in the forties you know, but that was, bright red talons! 

And, and I said, I was going to take her out and, into Bath for the day, it was the summer and I said 'Mum shall we go and change?' 'Why?' she said 'I'm fine.' It was all nice and clean and neat but it was a bizarre collection of clothes. I said 'Well shall we take your nail varnish off?' She said 'Why? I like it.' So I thought well OK, if that's what she likes.

And I took her out into Bath and it was obvious you know that she was so, she was sort of, dressed inappropriately and people were so kind. Immediately they realised that here was somebody who, who was just a rather, you know an eccentric old lady who wasn't, you know wasn't trying to fit in with society. They, they couldn't have been kinder, we had a lovely day, people fell over backwards to be nice to us. I said to mum 'We're catching a bus.' Mum stood in the middle of the road with her hand up to stop the nearest bus. And the bus driver stopped and the bus conductor sort of helped us on and they said 'If you want to stop anywhere you just tell us and we'll stop the bus for you,' and every time we crossed the road people were nice to us.

And once we'd crossed that barrier of allowing, of letting her be non-normal people were so sweet and that was a lesson to me, that was lovely. We had a really nice day out and we both, yes I mean we both sort of enjoyed it and people smiled at her, you know she'd smile back and I smiled back and, we sort of, yes, we enjoyed the minor drama of it all.

I've tried to, I've tried to keep up the kind of standards which [my wife] would have, would have insisted on when she was in full health. So, for example, I try to make meal times as, as pleasurable as I possibly can. We, I try to ensure that we set the table as nicely as we can we have wine to drink with our meals. I usually have some of her favourite music playing in the background. So we make, we try to make an occasion of most of the meals that we, that we have. 

I think that would be, and particularly, our favourite meal is breakfast which we always gave ourselves time to, to enjoy, even when we were both working, even when the children were at home. And that's something that we still experience in quite a formal sort of way. Again with, with music playing in the background and so on. So you know, it, it becomes something which, which gives us both real, real pleasure, that would be an example I think.