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Interview 29

Age at diagnosis: 65
Brief Outline: His 65 year old mother had lived alone but consented to come and live with him. After a few months he realised he could not care for her adequately while continuing to work and she went into residential care.
Background: Carer is a married Doctor looking after his mother who is a retired teacher with the help of his sister.

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Creating a life book.

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We did some things together which were helpful, you develop strategies to try and offset when they're upset or confused and I found that somebody recommended to me early on making a life book with her pictures, so I got a photo album and we sorted  out the photos. And of course her long-term memory is pretty good so she knows what pictures are where and you can sort of develop a chronological photo album and write underneath. And referring back to that is often a good way of calming, I found it a good way of calming mum down, she enjoyed looking through the photos and telling me about them.

 

After their mother went missing he and his sister realised she could no longer live alone.

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And he called the Social Services who weren't available, so he called the police and they went round to check on mum and she was back home and OK. This was one of the local shops, she used to get a bus into town to go to her other banks, but wasn't able to by then. And they phoned me at work and at that stage I talked to my sister on the phone and just sort of said 'Look, this isn't working, we've got to get her up to stay.'

We'd had a, since things had first started two years ago we'd, we'd had her to stay with us at weekends and breaks and holidays more regularly, mainly my sister I have to say. But now we just thought we'd give her a bit of a break so we bought a, my sister went down and collected her and took her home. And that was the last time she was at home really. Because what we thought would be a sort of short respite just eventually, that was it, things, she'd stopped being able to cope.

 

Describes the sensitive approach used by the psychogeriatrician to counteract his mothers denial...

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The GP was I think quite good initially, he went out to visit her, went out to visit her again a week later to see how much she remembered of the visit. Did the standard things to examine for physical illness, which I think is important at first, you mustn't categorise somebody as having dementia unless you've excluded other things that can make them confused, especially in the elderly, there's a lot of things that can do that.

So he took blood tests and arranged a CT scan to see if there was anything happening intercranially with my mum, which there wasn't and went back to talk to her and felt that she was slightly depressed and slightly confused and very anxious. So referred her to a psycho-geriatrician who came to assess her at home and I went down for that assessment because I felt it was important for somebody to sort of give mum some support. And also one of the problems with my mum's illness throughout is that she's been in complete denial that there's anything wrong.

So somebody going into her house and asking her a lot of questions about the mini-mental test score for instance which has got questions which is fairly obvious to anybody whose not very, very demented you know that they're asking you about your memory. And you know when you can't answer those questions as happened with mum, she got very uptight and quite, agg., not aggressive but, the realisation there was something wrong and she wasn't giving the doctor the answers that she wanted made her get quite anti about it really. A bit 'bolshie' I suppose.

And I think, I left the doctor to talk to my mum in the living room and went into the kitchen and sat in the kitchen listening to her answering the questions to the mini mental test. I think that was the first time I realised quite how wrong things were because listening to her trying to answer those questions is a good test. Some bits of it were completely normal and you could see the areas, different areas of cognition and memory that it was testing and some were fine and then there were others like short-term memory and language skills and things which my mum as an ex-teacher and very interested in English and history and literature she had always prided herself on her control of language and use of language and listening to that from the other room I just realised that she was really quite handicapped, already.

So at that stage the doctor had made a diagnosis of borderline dementia but trying to explain that to my mum was very difficult. She obviously wanted to know why this doctor was coming into her house and talking to her and asking her all these silly questions. And sort of, at that stage the doctor did say 'I feel there's something wrong with your memory,' and, she completely denied that and got very upset and that's another reason I think to be with people when they're seeing the doctor, even in a home setting, with a home visit. Because one thing I've found over appointments with different professionals is that after they've gone you're often left to sort of pick up the pieces of somebody who is very upset and it's takes a while to, to do that.

Its not the fault of the person who has come to do an interview or talk to the patient, it's just the realisation that people are looking at somebody's mental state. When their doctor comes and takes blood or examines you or looks at your physical state then that's a, you know that's an affirmation that there's something physically wrong with you and our society is clearly happy with the idea of labelling somebody as being physically ill.

But there's still an enormous stigma, especially with elderly, more, people who are older in our society about

 

Was unable to spot early signs of dementia in his mother even though he is medically trained and...

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I think I said I'd seen somebody with dementia before in the family from, a non-expert point of view, just as a kid seeing the way that it sort of reduced an adult to somebody who was quite obviously simple if you like. And one of the, most remarkable things is the memories that I have of my grandmother having dementia, some of the behaviours that she exhibited then that I can still remember have been reflected in what's happened to my mum, very much so. 

Obviously because I'm a doctor I went through medical training and did things like neurology and geriatrics so I've come across people with dementia before so I have some idea of the sort of physical and clinical aspects of it. But you know that didn't stop me missing, missing it in the early stages with my mother.

 
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Backing away from conflict as a way of resolving it.

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If you're going to be locked into an argument or a discussion about something that just seems to be going around in circles. Finding something else to do or something else to talk about. Often something physical like making a cup of tea or go and sit in the garden or popping out for a trip or something can help.  

When she was very upset I often found that it was sometimes better to leave her alone for a bit. Often people you know need their privacy sometimes especially if they're upset. I found the photo album quite helpful at distracting her when she was very upset. And sometimes it's best to, often I used to recognise in myself and in fact I was getting into these repetitive arguments because I was suddenly trying to force a point or make her do something that I wanted but she didn't. 

So in fact if you just let that go and don't get worked up yourself, that's why I say you have to learn to be patient. You've got to recognise in yourself the times when you're getting a bit frayed and sick of it and you just need to let it go and move on to something else and then go back to it later or stop trying to reason and justify something which you can't with somebody who's not going to accept it, just go ahead and do it.

 

Balancing a relative's wish to drive against the possibility of danger to the public.

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Yes it's a, it's difficult I think your automatic inclination is always to take into account the individual good of your relative first and foremost so it can be difficult to see when there's a wider issue involved. But I didn't have a huge amount of difficulty making the decision not to let mum drive because I, in fact what, what probably I should be saying is that I was remiss in not realising there was a problem sooner and therefore she had been driving a bit in the previous year when she was clearly not well and that was dangerous. So I don't think I did that too soon.  

I'm not sure if there are equivalent. I think if somebody was still at work and was in a position to put other people at risk that would be an issue. I think at the stage my mother got to it wouldn't have been an option, she wouldn't have been able to work. I would in general err on the side of the public good at that stage I think.

 

He was told his mother's reaction when she was first moved to a residential home was normal.

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I took a decision not to tell her that she was going. We went to have a look around and I discussed the idea with her. But in terms of actually taking her there on the day that I took her there I have to admit I rather kidnapped her. I think almost inevitably if I'd have given her the option of going she wouldn't have wanted to so she would have got upset whatever had happened.

She was very upset the day that she was there, staying there and the first couple of weeks when she was very unhappy and upset and distressed, which according to the staff in the home is perfectly normal. And that was quite difficult to cope with and in fact at several stages the staff just told me to go so that I wasn't around inflaming the situation and she also had then to confront the idea of getting on with people there and interacting with people. And they were very, very good about that. Obviously they've got a lot of experience of that.  

So in those terms it didn't feel quite like sort of taking and dumping her somewhere and driving off, but it was quite difficult to deal with emotionally. It did feel like I was abandoning her to some extent even though I was trying to visit often and she's not in prison there you know we go out.

And, probably took her a full month to settle down, but since then she's very much got into the swing of things there and has established a routine. I think that's very important and the staff strive to give her a routine around which to base her day. And whilst it might not seem very fulfilling to us I think it's what she needs. There's not a huge amount there, but then that's all she can cope with so.

 

Describes setting up a Receivership Order with the Public Guardianship Office.

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There are several options, if the person is, is still cognisant enough to be able to sign over the running of their financial affairs to a carer they can sign a Power of Attorney which is a lot easier and avoids a lot of, of hassle really. At the time my mum was diagnosed she really wasn't, she really wasn't able to do that and so I had to apply for what's called a Receivership Order to the Public Guardianship Office. And this basically allows you to take over the financial running of your relative's affairs with appropriate reports and, from the psycho geriatrician and the psychiatric nurse or references from other relatives to say that you're a responsible person who, who would do that.

But that takes, that's taken somewhere around eight months. I got the Receivership Order a couple of weeks ago and in fact now I've got it it's made things more difficult because I've spent the last two weeks closing down bank accounts, shifting money around and in fact all the money has been lodged with the Court rather than with me. So now I have to apply to the bank to pay a monthly mandate to pay her care home fees and I just have the anticipation that that's going to take a long time as well so in the meantime I have to continue paying for her.  

So everything takes a long time and they're not very efficient I've found. Things have been sent off to them and then a couple of months later despite numerous phone calls they haven't done anything and then they turn round and say they've lost it so you have to send it all again. And it's been a long drawn out and frustrating process. Given that I am trying to do the best for her and I'm not about to run away on the proceeds it's just, it's, I can understand the need for legal checks and guards against dealing with, dealing with your relative's assets. But it does seem to be a very drawn out process.  

So my personal recommendation would be, if at all possible, to get people early, in the stages of the disease when they still know what they're doing to some extent, to, to sign a Power of Attorney, that makes things a lot easier and cheaper.

 

Discusses his feelings about disclosing his mother's dementia and speculates on whether she...

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I've had to tell various people that she's got dementia in order to for instance to sort out her financial affairs. And it's not something that's unknown in society and most of these places it's simply an operational reason for them to change things and so that's it. I've never felt unwilling to explain to other people that my mum's got dementia. I think at work I've told some people and I haven't told others.

So I try and respect her privacy in that sense, I'll only tell somebody if I feel it's necessary for them to know in order to explain for instance why I'm not there or can't do something. I suppose I use it as a justification in those terms which might be slightly wrong. But no I've not really felt that it was a, it was a problem.

Because looking after somebody with dementia is a team based activity and that requires a lot of people with a lot of different skills and I think then, it's, it's often means that you know the details of the illness and problems are more widely known maybe than another disease. But then you can argue that the person, the patient themselves doesn't mind. Now that's difficult because obviously ethically it doesn't matter what they think, it's a bit like psychiatric illnesses and just because a patient doesn't appreciate there's an ethical issue involved doesn't absolve us from taking responsibility for that. I think again I've been so sort of wrapped up in the emotional caring and financial and organisational issues that it's not been at the top of my list of priorities I have to say. But it's an interesting question now you've raised it. I would also feel that that looking after came first, and I'd worry about the ethical issues afterwards. But that's, that is a pragmatic view which might be mine rather than other people's.

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