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Interview 40

Age at interview: 80
Brief Outline: Gradual onset. Cared for at home for several years with support from daughter and local authority carers. Attended day centre. Sometimes husband would stay too. Died rapidly after moving to a nursing home from hospital following a fall at home.
Background: An elderly clergyman caring for his wife who was interviewed with his daughter who lived close by. There are 2 other children. Diagnosed in 1996-7.

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Daughter says that changes due to dementia were not always noticeable.

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Obviously in the early stages, the first signs only occur very occasionally. So you find somebody trying to drive around a roundabout the wrong way, or never getting something out of the oven before it burns or not being able to balance a bank statement, periodically. And then it sort of, I suppose, gradually, becomes more and more frequent a recurrence. But, at that very early stage it's very difficult to make sense of what's happening really.

 
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She was surprised how long everything took to arrange, but impressed at the way questions were...

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I suppose just the length of time it takes to get somebody to come and give their opinion and the endless forms you have to fill in. I think she was assessed by a psychiatrist/geriatrician when you first moved here. One county and another have different policies, so that the thing that was set up in [county] wasn't transferable here, so when they moved here the whole process had to start all over again. Just time consuming I think really. And the rather difficult situation when somebody comes to assess somebody who may be having a good ten minutes and the person coming in might think 'Well what's all this about, they look fine to me'.  

But actually, with skill and judgement they ask key questions that the patient eventually can't answer. We had a very interesting interview with the geriatrician when he first came here, and he said something like 'I understand [name] you haven't been very well recently. You've had some problems with your memory. And she said 'Yes, it's a family failing'. And I thought 'Gosh, we're not going to get anything done here, if she answers as swiftly and succinctly as that'. 

But then he went on to ask her what went round her wrist to keep her watch in place, and she couldn't think that it was a strap of any kind, and, could talk easily about the war, and who were allies and so on. That was not a problem at all, but current things, days of the week, months of the year. Even the year I think at that stage couldn't say.
 
 
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Describes how pleased he was with the attitude of the home carers who looked after his wife.

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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 she'd 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. 
 
 
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His wife was surprisingly relaxed about being left in the day centre. Sometimes he would stay...

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And they sat around talking or listening, and occasionally they'd watch some program on and talked about it. There was often music, there was lunch, and it was very. It looked as though you did nothing, but the person there was in association with other people in varying degrees of dementia. It was, it wasn't disturbed in any way, people sat around and talked, or didn't talk.  It was a sort of very voluntary thing. I thought that it was outstandingly run. Small group, perhaps ten or twelve people there, and it's been much disturbed by all the health authorities. [My wife] took it in her stride, she didn't say "What the Dickens are we going here for?" you know, and it became normal, we drove over there. 

Occasionally I stayed to lunch. Other times I went out and did something else in the neighbourhood, left her there for two or three hours. And that seemed the most amiable thing. She wasn't the sort of person in her normal life, just to go somewhere like that for fun, as it were, you know. And it was quite striking the way that she was quite content to go there. Partly because of this, and partly because of the extremely good reception, and their brilliance at handling people. Talking and then going away and leaving them for a bit and so on.

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