Another turning point was a realisation that, I'm sorry if this sounds a bit arrogant but it's the way it is, you assume that when you hand somebody over for say day care, that people know a lot about dementia, know a lot about [my husband] and that they're the experts. It's not necessarily so.  Another was when I realised that for example none of the information from the hospital about where the particular deficits in [my husband]'s brain were, therefore what his difficulties were, and therefore what his particular needs were.  None of that information seems to travel automatically to the people who are trying to give care and so the turning point for me was when I realised that I had to take the initiative and say 'Look however bizarre it seems this is what pleases him. You know, at autumn time, he likes to go around on the grass, picking up interesting coloured autumn leaves and then looking at them afterwards and then putting them, hoarding them in a box.' And that to him was a meaningful - don't ask me why - a meaningful activity, far more meaningful than the bingo or whatever.

And I wish that I had volunteered more information about [my husband] rather than just assuming that when I delivered him at ten o'clock that they knew what to do. They would tell me at the end of the day what they'd done with him. It never dawned on me that I should be saying 'Would it be possible if?' Then I used to say 'Is there access to a piano? Could he play the piano for a bit?' 'Oh yes there's a piano' you know,

And I think another turning point was a realisation that - and this comes quite late on - the carer is the expert. You know far more about the person you're caring for than all the doctors and the workers put together. You know the whole picture, you are the expert, and again, if that sounds arrogant, but a carer's voice must be heard I think in planning out what is right and proper for the person you're caring for. And if you feel that something is wrong then you've got to have the guts to say so, whether it's to do with the care, the medication, with anything to do with their well being, if you think that something is not as it should be, and it's very hard, but you have to speak up as politely, as firmly, but as firmly as you can. And that was another turning point because I just assumed that I was just a carer and everybody else was the expert. It's as though they all have bits of our jigsaw, but they don't have the [whole] picture on the box and the carer has the picture on the box and knows what it needs to look like.