Interview 23  

Interview 23

Age at Interview: 62
Sex: Female
Age at Diagnosis: 61
Background: Carer who had been a teacher looks after her partner, a former policeman, who has Pick's dementia at home. Diagnosed in 2000. Between them they have 3 children.

Brief outline:Has been able to cope with caring for him at home. He attends a day centre and he has regular respite care. Doesn't feel ready to consider full time residential care for him but has felt it necessary to look out for homes which might be suitable.


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There should be a checklist of things carers may need to know.

 



I do think one thing about the professionals that's a bit negative, what I've found out has been by a process of gradual finding out, talking to other people, listen, hearing something, reading something, being told something. And I feel that there should be a sort of a checklist held by and I'm not sure whether it should be the GP, the psychiatrist, the CPN, the Social Worker that should run you through all these things. I mean practical things, things like Power of Attorney, I was told that, I already knew it, it was already too late. Things like you get a reduction on your Council Tax. Things like you have, you can have a disabled badge sticker for your car.

Sort of things that you find out by talking to other people who are in the same situation, 'Oh did you know about such and such?' 'no', 'oh well yes'. I mean two people at the Alzheimer's Society Carers' meeting didn't know about the Council Tax and City Council didn't know about the Council Tax, and they had letters backwards and forwards saying 'no you're not eligible,' 'yes we are,' 'no we're not,' 'well we know somebody at our group who's got it,' 'well then that's wrong they'll have to pay it back again'. And then when it came down to it [town] City Council was wrong. The person who dealt with it, and this chap got so many hundreds of pounds back in back pay.

The county council were fine, I just wrote to them and said were we eligible. They sent me forms they sent the doctor forms, filled in and we got the reduction. But I can't remember how I got to know about it. And then somebody else told me about the disabled sticker, just a friend of mine and I do think there should be a checklist somewhere of all these things that you should, that you are eligible for or you should be thinking of because you don't know from one day to the next what you should be thinking of or who you can go to.

And if you're somebody who's very retiring and very shy and not one who's willing to get on the phone and find out you just sink. Well you must do. That's what worries me, is these people who don't like to make a fuss, don't like to make waves, don't have much confidence, spend all their days looking after their partner or whatever and fall through the net. And don't get very much help or support because people don't realise they need it.

I think I said in my last interview when you asked me what advice I would have for the professionals if you, if you find somebody coping too well, be rather suspicious. Because probably underneath they're not coping all that well at all, or not as well as they like to make out.

Jonathan Miller - Dementia
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