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Interview 38

Age at interview: 52
Age at diagnosis: 53
Brief Outline: Cared for at home with help of friends, relatives and neighbours while carer worked part time. Treated with Aricept and Rivastigmine. Admitted for respite care in 2000 and never returned home after that.
Background: Same sex couple together 34 years. Carers occupation: Medical Laboratory Manager. Patients occupation: Industrial Components, own business.

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He was relieved when his partner's license was taken away by the court.

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There were a number of very difficult decisions, very difficult decisions. Early on one of the most difficult would have been, stopping [him] from driving. Something he loved to do but he really wasn't very safe. Well he had to be told to go left round a roundabout, that sort of thing! So he wasn't, I know it's terrible. I know I understand, it's also very, very difficult to take away the one thing that he liked to do and could still do.

But in fact, the decision was taken away, that decision was taken away when, when he was stopped by a policeman. He became totally lost, somewhere where that he would have known. He became totally lost and disorientated and, when a policeman asked him what, he went over a red light and, when, when the policeman asked him what colour light he went through he responded 'Blue'!

A court case ensued! And, I spoke on his behalf in court and, although it could have been, I understand what the serious consequences could have been involved but life wasn't easy anyway and, that decision was taken from us and the court were very kind, I thought.

So at least I could say to him, I could lie to him that his license would be returned to him, but 'You remember you did something wrong?' and he would accept that. Whereas I couldn't tell him that he couldn't drive and just, you know and take the keys away, that would be too, too awful.

 
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His partner's home care workers did their best but were poorly paid and untrained. He cannot...

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So, so I had a couple of carers coming in to, in the mornings to help out there. But, that wasn't so successful because [he] wouldn't 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 weren't. 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 didn't think that could possibly help them.

The other reason why [name] had to stay actually, had to stay in the [hospital] - sorry I'm jumping about - one of the other major reasons why [he] had to stay in the [hospital], in, in January 2000 after that week's respite was, no he was physically OK, it wasn't 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, I'm 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 he'd locked himself in the kitchen and [name] was prowling the house and [name] had told him exactly what he thought of him because he didn't know who he was and [the carer] didn't 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 wasn't very impressed with, if I could find the name of the company, it doesn't 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 don't understand why that's not, didn't stay in the State control. I do not understand. I'm sure that, if a private company could make the profit margins they were - I shouldn't talk like this - if a private company could make the profit margins they were making then why couldn't the Local Authorities? Then at least, some standards might apply.
 
 
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Thinks that too much profit is being made by the private agencies, who do not train or pay their...

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Carers who used to come in weren't really trained, they were thrown in almost immediately you said. Do you think this reflects society's attitude towards people with dementia?

No. I think it's, it's not just dementia, to any disability. I just, it's 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 didn't it? And they don't 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 individual's getting as an employee the profit margin strikes one as pretty exorbitant. But what struck me as odd is, perhaps na've, why social services weren't taking that cut and training the people themselves. 

Surely, there's such a big profit margin there must be room, you know, to do that. And it's only, no, no, it's something like '10 an hour they were paying, I can't remember, I really can't remember but I know that the people actually doing the work were getting '3.80, the government minimum. And that seemed pretty poor.  
 
 
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Found a home which suited his partner who had had to be sectioned because of his agitated behaviour.

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[the consultant] had said that, before he was sectioned that, had I looked at homes because he didn't think that he had many months of knowing who I was.

I didn't in fact do anything about that but after he became so ill in January 2000 it became perfectly obvious that was the only route and so I talked it over with, with [his] sister who, is his only blood relative of, of that layer if you see what I mean - left. And we decided that it was, it was really the only option.

We were told that [name] would probably be in the [hospital] for six months or a year until he settled into, a level that they thought that a home would take him, became less difficult. But, we went round a number of homes which we didn't, didn't much care for until we went to [name of residential home] and we 'liked' - in inverted commas - that place because it's, if I used the term 'mad house' I think they would agree with it. They don't use drugs and people are allowed to do what they like, within reason. Whereas the other place there was, the other places they seemed to be sat like soldiers with some sort of possible chemical control, which I can understand but I didn't feel was appropriate for [him], or I hoped wasn't appropriate for [him].

And a place became available there quite quickly and they were prepared to take [him] in rather more, if I say he was, while he was more, rather more difficult than he is now, whereas the other places I think would have wanted him more zombie-like.  

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