Carers of people with dementia

There are other Local Authority homes but there's 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 there's 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 we'd 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 doesn't appear to be any communication at all between any of the services or the support services. I didn't even become aware until the Alzheimer's, that the Alzheimer's 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 they're coping OK. They usually aren't aware of the support that is available to them. And they feel very, very much on their own and if they're asked if they're OK I would guess and say that nine out of ten would say that they're OK when in actual fact they're usually struggling. And that's 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 she's had two operations on her hip and she'll keep pushing herself up. Well in the last week she's had some like inflatable things put round her leg, her foot because she'll 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 she's 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 she's 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, she's 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. She's the one that orders all these things and she'd 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 there's 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, there'll be another outburst.

I was phoning them and telling them about his hearing aids, and I said, “You need to change the batteries in his hearing aids, because then he could communicate with you, because, one he can hear you and his dementia is only half as bad when he’s got his hearing aids in with the batteries,”

but when the one and only time I was able to visit, I got there and the hearing aid batteries were absolutely flat, and I unfortunately had forgotten to take any batteries with me, so I had trouble communicating with him when I was there. So I was a bit unhappy with the hospital for… not doing that, because it would have helped him tremendously, and—

I felt that he was… well, I wasn’t there of course, but you kind of feel that he was being neglected, and not given the full support that he… needed, and he must have been bored out of his mind lying in this hospital bed not being able to hear things, it must have been terrible for him.

And then she had… there was some… some really bad falls. She was… she went missing for 11 hours being transported from the [hospital name] back to the rehab, and they sent her half past midnight, something like that, by taxi on her own, which I was disgusted about, and at the time the papers were saying that elderly people were being sent home who were frail and shouldn’t have been on their own, and she shouldn’t have been, and I was ringing the hospital – they couldn’t find her. Anyway, I went down the rehab and she arrived, because they rang me, at least we’re on all the… ward sisters there, I had to put a formal complaint in about it, which I… so I was quite happy about, but she was absolutely ice-cold.

She had no… hadn’t had any medication, she was only in her nightie and one little blanket, no slippers, nothing, she needed more blankets around her, she needed food, she’d had nothing to eat, she’d had nothing to drink, and like I said she’d never had any… any of her medication, and that was something… and I was really absolutely appalled at. So we got the heating put on, got her warmed up, and trying to get some warm drink into her, and… and stuff.

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 we've 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 husband's 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.

Yes, we had to put all the gear on. The first meeting was I think with some council… or some… somebody representing the council, but independent of the council, to get an independent view of my father, even though I was there. But I was very unhappy with the care home when I saw my father because he was inadequately dressed, didn’t have his hearing aids, didn’t… and hence didn’t have any new batteries in his hearing aids. He was dressed in other people’s clothes, and inadequately, and it was… it was cool, and he didn’t have enough clothing on, and he had no socks, even though I’d taken the clothing along that he would likely need, although he… he did need some more, but they were not… the care home were not informing me of what he needed, so I thought some of these things are OK and but… but they were not. Yeah, so I was quite unhappy with the support that the care home were giving him.

t was quite good really because the activities coordinator on that floor, which was a dementia floor anyway in the care home, was a member of the LGBT community so that really helped.

The one or two things that were really galling, was that he’d got all his clothes there, and they’d got a laundry onsite, so I didn’t have to do any washing, they never dressed him properly, and then when I went one day, again she said, “Oh, he’s not eaten anything today,” so I said, “Well, why haven’t you put his teeth in?” and she looked at me at blank amazement, so I took her to one side, she was the senior nurse on, shut the door of the office, and I said, “Now look here,” and I give her a right earwigging, and I said, “you… I’m paying a lot of money for this, you need to make sure: a) he’s dressed properly, b) he’s got his teeth in,” I said, “and if you don’t start to do this,” I said, “there’s going to be serious consequences, it’s no good telling me he don’t eat, and if you’re not putting his teeth in, how can he eat if he hasn’t got his teeth in?”

But yes, after we had a deep meaningful discussion, things did improve, and on the whole the care was very good. They had a number of seating areas so he was never in the same seating area whenever I went, he was always moved around, so he was in a different place every day. He had his own room, which was fine, and his own en suite, so that was OK, and I’d put things which he would recognise in his room; I was allowed to sort of personalise his room, which was quite helpful.

We're 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, there's 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 there's 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 there's special provision for mothers with babies, but there's 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, there's no provision, we're not, we don't think in those terms. That is one of the big defects that we're 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 there's 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, we're not at all elderly, elderly aware.