Husband: And then, there came a stage when she couldn’t do very much. She couldn’t do much in the kitchen, and much in the house. And we got in touch with the powers that be and at that stage it was planned that we could have some carers to come in. I think, she was finding it difficult to use the initiative to get herself to bed and that sort of thing. She wasn’t disagreeable about it all, just remote, and she never really inquired why all these people came, you know, it’s all the same, you know, ‘What the hell are all these people coming in and out of the house?’ Because a whole team of people came, I mean – you’ve switched that bit off – and, the, they were very good, she got on very well with them. They were a varied collection of people.

As if they were part of the family and she was part of their family and it was the most normal thing that they were coming in here. They would talk about their children, or what they’d done at the weekend. Just friendly, not patronising. Relaxed, and never really giving the impression that there were probably many other people who they’d got to do the same thing for before they clocked off, and that kind of thing. And they came here first thing in the morning and last thing in the evening when they might not have been at their best, but they were very, very good people.

Daughter: Oh yes, they were very good in dealing with the loo and washing and all the rest of it weren’t they, that part of the thing too. And, the personal attitude, there was one girl, she was rather glamorous. She was, you know, she was young, young wife with children, a child that the… kept on talking about. And she, would come in sometimes and say ‘Hello [name], how are you tonight?’ and put her arm around her and smile, and she had, and shed be all dolled off to go off to, you know, a party or social function.

Yes, they really seemed not just to be doing a caring role but to actually care. And to have to capacity to rally somebody who may not want to do what they wanted to do in the time allotted which is another skill really.

So, so I had a couple of carers coming in to, in the mornings to help out there. But, that want so successful because [he] wouldnt cooperate with a stranger and really it ended up that I was the only one that could get him to shave or bath or toilet really. And he was becoming, incontinent which became a problem because although the carers, the professional carers should have been trained in that respect, they werent. They, were taken on I believe and thrown into the field almost instantly which, is unfair on them, but that was the way I felt it was. I know they were very, very short staffed but I didnt think that could possibly help them.

The other reason why [name] had to stay actually, had to stay in the [hospital] – sorry Im jumping about – one of the other major reasons why [he] had to stay in the [hospital], in, in January 2000 after that weeks respite was, no he was physically OK, it want that he was physically unwell, Social Services could no longer provide a carer. The, man who was doing it [name], resigned at the New Year because the pay was so appalling, I mean he had a family, and they had no one, the, Im not sure I can remember what the company was now, but they had no one to replace him and, without their help I could no longer cope with, with [him] and so he stayed at the [hospital], that was, that was].

The carers, well, [name of carer] did his best poor, poor man but as I say he had, he had no training I feel. The first day he started he rang me at work and hed locked himself in the kitchen and [name] was prowling the house and [name] had told him exactly what he thought of him because he didnt know who he was and [the carer] didnt know how to respond and [name] had become, not aggressive but abusive and [the carer] was frightened.

And it was a little while before they got to know each other. They did eventually and, it was OK but certainly I want very impressed with, if I could find the name of the company, it doent matter does it? But, I was not impressed. They were obviously, I know they were charging a lot and they were very, paying very badly. I dont understand why thats not, didnt stay in the State control. I do not understand. Im sure that, if a private company could make the profit margins they were – I shouldnt talk like this – if a private company could make the profit margins they were making then why couldnt the Local Authorities? Then at least, some standards might apply.

Carers who used to come in werent really trained, they were thrown in almost immediately you said. Do you think this reflects societys attitude towards people with dementia?

No. I think its, its not just dementia, to any disability. I just, its to do with putting out care in the community, physical care to, these small companies rather, rather than the council, the council. It used to be a council responsibility didnt it? And they dont seem to have the necessary training, and not necessarily the right sort of people because the pay levels are so abysmal.

When you think how much our, one is paying or social services are paying for these, for these people and how much the, the, and how much the individuals getting as an employee the profit margin strikes one as pretty exorbitant. But what struck me as odd is, perhaps nave, why social services werent taking that cut and training the people themselves.

Surely, theres such a big profit margin there must be room, you know, to do that. And its only, no, no, its something like 10 an hour they were paying, I cant remember, I really cant remember but I know that the people actually doing the work were getting 3.80, the government minimum. And that seemed pretty poor.

Anyway, as I say we had carers in, I had gone to Social Services and asked them to recommend somebody, which of course they wont do, they give you instead a list of accredited care agencies which are agencies who meet their standards. And already there I’m aware that Im talking in bureaucratic-speak if you like, I don’t know how best to put it, agency-speak, not necessarily Social Services-speak. But its, you, you find theres a whole world out there full of these phrases which mean something different in terms of care provision from an authority than they do in terms of an individual trying to understand what they’re dealing with.

I picked one more or less willy-nilly and I had established that it was probably the largest in this county, or at least in this town and was used a great deal by Social Services and I thought well if they’re using it to that extent then it must be fine. But there were two problems really in the first six months of this arrangement my mother had thirty-one people through her flat, and what we wanted were the same little team of people to come so that she stood some chance of getting to know them and begin, being able to trust them, rely on them and believe in them.

As it was she was constantly opening the door to somebody she’d never seen before, or couldn’t be sure if she’d seen before which actually exacerbated her problems. I had endless arguments with the agency about this, who explained to me that they had quite a high turnover in staff and they had other people who had needs and they had to put people, carers, wherever it was appropriate or convenient for them to go. In addition there were days when nobody turned up, which I found absolutely incredible and difficult to cope with.

I needed to know that somebody was coming into my mothers flat for that hour and would see that she had a meal. My mother would ring me and say “Nobody came” and because of her memory problems I didn’t know whether she was telling me the truth or not so I had to establish whether anybody had come. So I had to go over to the flat, see whether there were any signs of her having eaten anything, because she would say “Oh I’ve had my lunch” but often she hadn’t.

And then my mother started to say that she hadn’t any money. I was as I say handling her pension which at that time was something around 60, so I was paying for all the, my sister was paying the overall bill, I was paying for the food and provisions for the flat, any of my mothers needs, and leaving a certain amount of money with my mother, and putting the rest of it in the bank.

So I knew that I was leaving her with something like 15 or 20 a week and out of that she was paying – with the milkmans help – the milkman, and the man who delivered freezer foods and all of them had to be primed and spoken to by me so that they could understand what they were dealing with and we just had to trust them.

So, first of all I said to her Well you must do because I leave money with you. And she said I havent got any money, I never have any money, Ive never had any money since I came here. Yes you have I said Youve always got 15 or 20, by the time youve spent it you should have 5 or 6 left. Eventually I said to her that, oh she had, had a habit in more recent years of putting, squirreling money away in drawers and things because she didnt, couldnt get to the bank or whatever. So, when my sister was over I said to her Well you go through all mums cupboards and drawers and look for money. Because I said Its difficult for me to do it because shes saying to me Dont you believe me? I said Perhaps you could do it under some other pretext. So that was done and there was no money So I said to my mother I will have to look through your handbag and your purse if you’re going to keep saying this.’ Well do it, I’m not telling you lies.’ So I did and lo and behold there was, we couldn’t find, I mean I reckon she must by that time have built up something like 60 or £70 at least. And it wasn’t, or more than that, a couple of hundred pounds I would have thought she would have had, in fact I’d begun to worry about how to get it back from her to put it in the bank when she started saying she hadn’t got any.

And there was no money to be found anywhere apart from the odd £5 note in her handbag. So then I said “Well in that, now what I’m gonna have to do is give you money and keep it all written down in a book. And I’m going to have to come over every time anybody comes to, to see whether any disappears.”

And that’s what I did for two or three weeks and it became plain that after a particular carer had been in the flat there was less money than there had been before the carer came. So I, my sister initially rang the police from where she lives, and then I rang the police, and, it was
complicated by the fact that I was going on holiday and they said, first of all the policeman said “Well you’ve got several choices, you can, you can ask for that carer never to come to your mother’s flat again.” Which I found extremely negative thinking and pointed out that if we did that the person would still be visiting the other vulnerable people. Or, he said “You can make an accusation, you can accuse her to us of, complain to us of theft” he said “Of course you’re going to have to be able to substantiate it, so if you want I can tell you how, how to do that, marked notes, etc.”

So the upshot was that – I won’t go through all the procedures of how I had to establish that she was in the flat and the money was in the flat – but I left a large amount of money with my mother and waited outside with a policeman until this girl came out and the policeman apprehended her and she had £25 of marked notes in her purse which she said her mother had given to her. If she’d said my mother had given them to her we would have been up a gum tree really. But she said her mother had given them to her, she was taken to the police station where a further £25 was found in her underwear, meanwhile I went into the flat, checked my mother’s purse and found £40 was missing.

In all she admitted to stealing almost £400 from my mother, I asked that she be prosecuted and the case went to court and she was eventually given 18 months probation and what they call ‘compensation to the victim’, compensation was the amount she’d stolen and was no compensation at all, really.