There are other Local Authority homes but theres not another one that provides day respite and residential care. And as the woman said, she said ‘If we have him assessed then if you put him on the waiting list for the day’ – because theres a waiting list of course – ‘for the day care, then if there was an emergency,’ and say I was ill or had to go into hospital or something, ‘then wed have all the paperwork in place to put him in, to bring him in, straight into respite care.

So this is the sort of thing that’s needed, is the back-up services in case anything goes wrong and the support services from a day-to-day point of view. I know that the nursing care is there if you need people to help bath and to help dress and this sort of thing, further down the line, I know that’s in place but I think this emotional care is very important and this ability to allow the carers to have space to themselves is vital.

I think perhaps there could have been a lot more liaison for, for the support that is available, specifically at the earlier stages. There doesnt appear to be any communication at all between any of the services or the support services. I didnt even become aware until the Alzheimers, that the Alzheimers Society existed until my wife was actually in the, in a care home.

So I think that for carers there ought to be some sort of procedure, system, communication between the specialists that are diagnosing, between the doctors, between whoever we saw to ensure that the carer is eventually made aware of the services available. Because from my own personal experience when I did find that they were available and from talking to other carers now within my role, they all think theyre coping OK. They usually arent aware of the support that is available to them. And they feel very, very much on their own and if theyre asked if theyre OK I would guess and say that nine out of ten would say that theyre OK when in actual fact theyre usually struggling. And thats from my own experience and indeed talking to other carers now.

I had to go in to the hospital yesterday to see somebody from the General because just sitting on an ordinary chair, well you know not a like an armchair but an ordinary chair, taking shes had two operations on her hip and shell keep pushing herself up. Well in the last week shes had some like inflatable things put round her leg, her foot because shell keep pushing herself up because she can’t get comfortable because I think they’re blistering. And I got myself annoyed about that, not at the nurses, no way because they were, they are great, but the fact that shes been going to have this chair. I offered to buy it. I offered to pay for her one. And because they were £1,000 but they said there was no need, they should, they’re getting one for her.

And so I got, I told the manager, that’s what they call them now, I don’t think it’s sister, I told the manager, because shes a lovely lass, I call her [name]. I had her on the, I says Look [name] I want you to get in touch with somebody,’ I says because I’ve got a complaint. She says What’s that?’ I says’this chair. Oh,’ she says I know, I know. I says Well look at her, shes got these blisters on her feet, or whatever they are,’ I says if they burst and she gets any infection and the media today have been telling about a lot of infection that’s going around in these hospitals,’ I says I’ll take the NHS for everything they’ve got. I says If she doesn’t get a chair. That was last Friday.

And yesterday there was somebody from the hospital came and she apologised. Shes the one that orders all these things and shed never been, there was a physiotherapist, sociologist I think you call them, somebody else, there was about four people suggested she should have this seat, proper seat. It’s never got to her, so she tells me. And I think I tend to believe her. But I went there with me boxing gloves because I thought I was gonna have to fight them yesterday. And she was full of apologies.

And they’re trying to get her a, they’ve got to get measured for these chairs apparently. And they’re gonna try and hire one, well they’re gonna try and hire two because theres somebody else in there in the same position. So, and get them measured up and they’ll get them ordered and they’re gonna get them. She said, I says I, I hope it’s done quick. She says Well I cannot say it’ll be done this week. I says I realise that, I’ll give you a month. So if she hasn’t got it in a month, therell be another outburst.

As a result of that and as a result of us making a formal complaint I now have a CPN who meets with me well, so far weve probably had twice as many meetings as I ever had before. My husband has a placement in a, actually a psychiatric unit because of his age and the Alzheimer’s unit would be wholly inappropriate. He has transport that collects him from home and takes him in on a Friday morning. He has a session in a carpentry unit under supervision, he has lunch there and he has transport back again. Now if the problem was finances, resources, I would suggest that it wasn’t terribly well managed in respect of what they’ve ended up having to fork out if that really is the problem.

So you know, having kicked and screamed we now have got what I think a lot of areas in the country, dealing with these problems would consider is far more appropriate care, bearing in mind my husbands been off sick since 1995 and this situation only started in May this year, 2001. But its all been a desperate fight and its required huge energy.

Were very much user unfriendly towards the position of people with Alzheimer’s or dementia. And it’s only when you’re involved in it that you realise how little it happens. I’d like to see, not the sort of things that cost money but the sort of, I was saying you know, simple things like making provision for leave for people who are looking after their parents, not just those maternity and paternity leave and accepting that. That’s a good use of a situation. Again having, I mean well another big problem of having someone with dementia is, is simple things like going to shops. Because you need to be able to park outside, but nobody seems to realise that, but nobody seems to, theres no provision for that, and that’s really quite difficult.

And this matter with finances and so on. I think the Government can do a lot more without necessarily putting a lot of money in. I think more sort of legislation, more to making life easier for people with, with dementia. But at the same time equally I do think they need to realise that somebody like my mother could have caused considerable financial hardship to us her children, by her actions.

And I think we need legislation, at the very least to prevent that happening, because I really don’t see why I should have lost out because my mother had dementia. As it happens luckily we didn’t, but my mother’s dementia must have cost us probably about £10,000. And you can’t, you can’t insure against it or anything like that. So I think more, more support certainly is needed, I think financial aid towards people with Alzheimer’s. We did get the attendance allowance but once mother, once mother was in a residential home, but it wouldn’t have applied to us I think just being long distance carers.

So I think, yes, more sort of legislation to change attitudes and more and more recognition of that a carer can have financial responsibilities which could end up with them being impoverished. I mean it, I could have ended up not having to enough money to pay my mortgage if I’d had to pay out, some of the bills I had to pay for my mother.

How little we think in terms of if, if sort of middle aged people with middle class ideas making provisions for people with dementia. You may have seen there was a fuss sometime about [county] wanted to supply people with microwave meals rather than ‘Meals on Wheels. Well not every elderly person knows how to use a microwave. Mother didn’t understand about best before dates and that sort of thing. I think theres an awful lot of us imposing our ideas on them.

And it also annoys me when I go to Sainsbury’s down the road and theres special provision for mothers with babies, but theres no way you can take an elderly person who perhaps can’t walk very far who might wander off. And you park in a disabled sticker place, you know you could be in trouble and no, nobody sort of, theres no provision, were not, we don’t think in those terms. That is one of the big defects that were not really sort of elderly or dementia minded.

We think, you know, we see parents and kids. We don’t see parents and elderly. Because again I am sure you, you have it in your job, my employer’s going for maternity leave and paternity leave, but theres no question under this spectrum of going for elderly parent leave. And that used, that used to annoy me because you could have as many problems in that way as you could with kids. So I think we, were not at all elderly, elderly aware.