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Interview 23

Age at interview: 62
Age at diagnosis: 61
Brief Outline: Has been able to cope with caring for him at home. He attends a day centre and he has regular respite care. Doesn't feel ready to consider full time residential care for him but has felt it necessary to look out for homes which might be suitable.
Background: Carer who had been a teacher looks after her partner, a former policeman, who has Pick's dementia at home. Diagnosed in 2000. Between them they have 3 children.

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Associates loss of language with loss of memory.

Associates loss of language with loss of memory.

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His short and long term memory have both gone. His language is very repetitious and very limited. His understanding of what's said to him is very limited too. He'll pick up on a few key words and repeat them, but doesn't really, fully take them in, although he can do things, but sometimes you have to ask him or tell him three or four times before he does them.

 

Describes why it was actually a help to have the diagnosis of Alzheimer's disease confirmed.

Describes why it was actually a help to have the diagnosis of Alzheimer's disease confirmed.

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I knew something was happening to him and he and sometimes I would say to him 'You know something's happening to you don't you?' And he, didn't say yes but he didn't say no, and I tried to play it down although I had this awful gut feeling that it was tremendously serious. But I tried to play it down by saying 'Perhaps it's something like a chemical imbalance in your system, and if you have blood tests and get sorted out by the doctor then it maybe can be put right with a course of tablets or something.' Which of course if it had been something like B12 deficiency which can be a cause of dementia then it could have been put right by the injections. I mean he has them now anyway on a regular basis.

Impotent fury I think would aptly describe the way I felt. Very, quite I felt quite depressed because I felt so helpless and I tried to get the help of the doctor and the doctor did say he would come out and see him but I thought probably he would refuse to talk to him anyway even if he came out. So impotence and anger, those were the two main feelings I can remember.

Here was he going along with his life as he wanted it and I was knowing something was going drastically wrong and yet unable to get him to do anything about it.

Did actually having the diagnosis help?

In some ways it did, it was, I suppose it really just made me accept that what I'd feared as the worst was actually the worst. That there was no doubt anymore if it was dementia and it was a progressive situation. And although it was upsetting it was calming in a way because you couldn't kid yourself any longer, not that I was kidding myself all the way along, but not that I really knew what was involved with dementia at the time. But yes, I suppose in some ways it was a calming but upsetting situation.

 

Describes the contrast between a sensitive and an insensitive approach to giving a diagnosis.

Describes the contrast between a sensitive and an insensitive approach to giving a diagnosis.

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If I could send all professionals along to the former psychiatrist that I had I think they would get it right. She was the first one who saw [my partner], was the psychiatrist, she came here to see him because he wouldn't go to the doctor. She was kind, she was concerned, she was informative. She told me what was going on and what needed doing, she didn't talk down to us at all. She never made you feel that you were wasting her time.

I got the diagnosis from her a few weeks later. Again she was extremely kind, very concerned, didn't try to blind me with science, just gave me the facts which I wrote down because I knew I wouldn't remember them. Said what they'd done and what they'd found and then was very sympathetic and just talked to me gently and that's how it should be.

Now this neuropsychologist was remote in my opinion. Now I know he sees hundreds of people, thousands of people in the course of the year and I know that it's his job, but I think sometimes the human side of people that he's interviewing or people he's dealing with isn't taken into account. This was just another patient, 'Oh no, I don't see relatives until you, unless we make another appointment. Oh I suppose I can fit it in because [your partner] only taken half an hour', because he's so far down the road that he, couldn't do all the tests with him you know. And then when I spoke to him well told you before when I spoke to him what he said to me was completely load of rubbish basically.

A load of rubbish from what I wanted to hear. I wanted to hear how I could help, what I could do. You know I wanted basic down to earth facts about the man that was, who was sitting there and he wasn't listening to what I was saying. He wasn't listening to what I was asking him.

I think the professionals need to understand that for every patient they've got it's a tragedy. It's a terrible tragedy for the people who are caring for that patient and every single person, every single case be it one of twenty in that day is the same for the people who are caring. They need to feel that the consultant is focusing on them for a start off. They are not just another statistic, they are just another statistic but they are a human being as well and if you can impart information, answer questions in a kind, considerate, sensitive manner that makes the patient, makes the carer or the patient feel that they are being focused upon rather than just trying to get rid of you then that would help.

 

Cannot see the benefit of repeated testing if there is no preventative advice or treatment to offer people who are found to be at risk.

Cannot see the benefit of repeated testing if there is no preventative advice or treatment to offer people who are found to be at risk.

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The stem cell research doesn't cause me any concern at all. I don't agree with genetic engineering for things like babies but I think if we can find ways of engineering illnesses and genetic defects that cause, may cause things like dementia or muscular dystrophy or whatever the other awful things are then I have no, no hang ups about them pursuing that line of research at all. 

Blue eyed, fair-haired white babies, yes I would have concerns about that. Or boys or girls, yes I would have concerns about that. But not, not otherwise I don't look on it as a Frankenstein thing, I look on it as progress. I mean we've progressed ever since man was created. This is just another way that we are able to progress. That's just, that's just my opinion anyway.

Well I think that's got to be a personal matter. I know that [my partner]'s daughter has said that her brother has said that even if there was genetic counselling he wouldn't go for it because unless, I think the good thing about genetic counselling is if you're aiming to have children and you want to know whether there's anything in your family that you're likely to pass on.  

It can be valuable then. And then I think if you, if you are in danger of developing something in later life about which nothing can be done I really don't see the point, because all you've got is the Sword of Damocles hanging over your head. Knowing that further down the line, X number of years you're going to start developing, I mean lets just say dementia for one thing, or cancer or, I mean we're all going to die of something but do you want to know that thirty years on you're gonna develop dementia?  

I don't want to know I, and if I went to see a geneticist and I had the tests and they said 'Oh yes you've got all the signs that you're going to develop dementia,' it would just, I might as well put a gun to my head and commit suicide now. 

Because I think unless you know that something can be done about it, and we're not that far on enough yet to know that.  There is nothing we can do to prevent dementia in spite of them saying 'use it or lose it' You know I have a living proof here of somebody doing a degree and then losing it straight away, so it doesn't protect you, it might help in some cases but nothing can protect you against the onset of it, as far as we know, unless it's caused by alcohol abuse or boxing or something like that and that's a physical cause.

So no I think the genetics, the fact that we can maybe identify the markers is dangerous if we can't give anybody any hope. So I think it's a very murky pool at the moment. I think when we're further down the line in a few years time and they've got maybe things they can do about it, yes, that would be good. But at the moment they can't for dementia, so what's the point!?
 

 

Carer is grateful that her partner who was in his 60's was allowed to take Aricept even though it was not expected to be helpful.

Carer is grateful that her partner who was in his 60's was allowed to take Aricept even though it was not expected to be helpful.

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That was an NHS prescription, and that was simply through the fact that the psychiatrist we had is a brilliant psychiatrist.  She is so kind and she is so fighting for the patient, rather than going with the system and it was also due to my GP and the practice generally. They had to decide whether or not they would be willing to fund the Aricept and they did, they funded it for, I think he was on it for about ten months. 

But they did tell me that it had been shown not to work in frontal lobe cases and also there is a period in early dementia, early to middle dementia which is the only time when Aricept has been shown to keep things balanced. I mean it doesn't cure, it doesn't make people better, but it does slow the progress down, and keep people on a an even plateau for a lot longer than they would be and I think my partner was really past the place, the case when it would have helped him even if it hadn't been frontal lobe dementia.

So it was worth a try because I would never have forgiven myself if, I'd have thought that maybe it would have helped him. So he's not on that now.
 

 

Describes how she came to accept that her partner needed some sedation.

Describes how she came to accept that her partner needed some sedation.

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So in the end I took him off the lot and we thought we'd see how he went. Well, he never sat down - basically. He just went round and round and round and round. He'd come home, he wouldn't even sit down for his meals at the care centre, at the day centre. I made him sit down because I've got a lap tray so I put his, I do now put his meal on his lap and virtually pin him down.

But the rest of the evening it was just round and round and up the stairs and out the house and round this little circuit until it was driving me mad. And then I thought well calm down, what's the worse thing about it. The worse thing about it is it's irritating. Take that away and just let him go. Now we've had to change psychiatrist and CPN because now he's under county for his care plan, protocol said that we can't access the psychiatrist or the CPN. So I've got a new psychiatrist and a new CPN. 

The psychiatrist when I went to see him said to me. 'Well now look at it like this' he said 'perhaps [name] would like to be able to sit down and rest, but can't because this is obsessional and he actually can't make himself sit down. But he's, it's wearing him out. So look at it like that and maybe it might be a good idea to medicate him.' So that's and I thought about that afterwards and I thought yes, you're probably right, you know he just cannot sit down. Now if he's absolutely worn out and he's still got this compulsion to walk it must be terrible for him.

So I started to alter my thinking on it and the other things I'd thought when I'd read these articles from the Alzheimer's magazine I thought I wonder if the people who write some of these things have actually had experience of living with somebody with some of these problems that dementia brings and know just how stressful it can be having somebody doing something time after time after time after time until you're nearly screaming at them to stop. And it's not doing you any good and it's not doing them any good, so maybe the medication needs to be a halfway house.

So I've got over my ethical dilemma of this business of medication because I think there is a time and a place for it. In my circumstance it may, you may say or people may think well it's for the benefit of the carer, well it may be for the benefit of the carer, but I mean lets face it you've got to look after the carer, because if the carer goes to the wall so does the person who's got dementia. But if you're also thinking of it in terms of the best, for the betterment of the sufferer then I think there is a place for it definitely as long as you're careful with it.

 

Looking for a way to control her partner's agitation without turning him into a zombie.

Looking for a way to control her partner's agitation without turning him into a zombie.

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I didn't want him to be a zombie but at the same time I wanted to try and manage it. So in the end I took him off the lot and we thought we'd see how he went. Well, he never sat down - basically. He just went round and round and round and round. He'd come home, he wouldn't even sit down for his meals at the care centre, at the day centre. I made him sit down because I've got a lap tray so I put his, I do now put his meal on his lap and virtually pin him down.

But the rest of the evening it was just round and round and up the stairs and out the house and round this little circuit until it was driving me mad. And then I thought well calm down, what's the worse thing about it. The worse thing about it is it's irritating. Take that away and just let him go. Now we've had to change psychiatrist and CPN because now he's under county for his care plan, protocol said that we can't access the psychiatrist or the CPN. 

So I've got a new psychiatrist and a new CPN. The psychiatrist when I went to see him said to me 'Well now look at it like this' he said 'perhaps [name] would like to be able to sit down and rest, but can't because this is obsessional and he actually can't make himself sit down. But he's, it's wearing him out. So look at it like that and maybe it might be a good idea to medicate him.' So that's and I thought about that afterwards and I thought yes, you're probably right, you know he just cannot sit down. Now if he's absolutely worn out and he's still got this compulsion to walk it must be terrible for him.

So I started to alter my thinking on it and the other things I'd thought when I'd read these articles from the Alzheimer's magazine I thought I wonder if the people who write some of these things have actually had experience of living with somebody with some of these problems that dementia brings and know just how stressful it can be having somebody doing something time after time after time after time until you're nearly screaming at them to stop. And it's not doing you any good and it's not doing them any good, so maybe the medication needs to be a halfway house.

 

Felt that the role of carer crept up on her without her making any conscious decision to do it.

Felt that the role of carer crept up on her without her making any conscious decision to do it.

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You mentioned some of the things that keep you going as a carer. Sometimes when the diagnosis is made the person says 'I'm not going to take this on at all'. and I'm really just saying why you took on, or accepted the role?

You don't accept the role, I don't think you do accept it. You're living with a person, I mean I'm not married to [my partner] but that doesn't mean to say I don't feel married to him. I came to live with him because that's what we both wanted to do and the fact that he started to deteriorate, it is a gradual process. I could not abandon him and that's how I would look on it, as abandoning him. Not that I'm saying that there won't come a time in the future when he will go into residential because I don't why, you know, he could because of his deterioration to such a point that it's physical deterioration as well as a mental deterioration and I couldn't cope with him at home.

I mean I have to do his personal care now. I have to wash and he dresses himself still, very slowly and sometimes I have to help him, but I think you gradually slot into this role of carer. If somebody came along and said to you 'You're going to be a carer in two year's time, a full time carer,' you'd say 'No way.' But because it sneaks up on you - do you want a biscuit?

Because it sneaks up on you, you take it on and until something goes woomph like that and makes you think no I can't cope any more you just carry on doing it and without realising a little bit more's eroding, a little bit more's happening, a little bit more's happening like you know now he can't speak, now he's incontinent. You know, now he needs twenty-four hour care. All the things that if you were given at a certain point and this is what's down the road for you, you'd say no way, no way, no way. But you just slot into it.

So I didn't, I don't consider I took on, I made a conscious decision to take on the role of carer. I think it was just part of my life with my partner, my life with my partner now involves taking care of him. Which I never thought it would, that was never in my mind when we first got together. But having said that I couldn't at the moment put him into residential care and have any sort of peace myself. Because I'm not ready to let him go and I don't think he's ready to have to go into residential care. I think he's still able to, although he doesn't show it, he's still able to enjoy the outside world and I want him to experience as much of the outside world as we can while he's still able to, while he's still fit. 

I mean he's more physically fit than he's ever been I think because he's lost weight which I think is part of the dementia and partly because he doesn't eat as well as he did and he's got plenty of energy. So we can go into town and I often see him looking round and I think yes, he needs to be able access this sort of life, normal life as well as being in the day centre five days a week. And I wouldn't want to deprive him of that yet and as long as I can cope with it there's not a problem. So we're not going to let him go yet.

 

Her partner continued to drive until he had an accident.

Her partner continued to drive until he had an accident.

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Driving was something that was a great worry to me, it was one of these great ethical dilemmas I found myself in, because his whole life, over the, a year ago his whole life was driving. He'd get up in the morning, he'd be out at 7 o'clock, he'd be back again, he'd be out again, he'd be back again, out again, in and out. In the middle of the night he'd get up, get dressed and go out. And I wouldn't know where he'd been.

I used to hide his keys when he was driving - eventually - so that he, he would wander round the house looking for his keys but not able to articulate what he was looking for, so he would say 'Where are?' and then stop and look puzzled and go wandering off again. So, that was a problem solved - partly but then he had a little bump just before Christmas last year, where he went into the back of another woman at a roundabout very slightly, but he drove off. But before he drove off a Tesco lorry went into the back of his car. And I came home and found his car on the drive with the back smashed in and of course he couldn't tell me what had happened. 

Fortunately he wasn't injured and I thought 'Well if the police were involved we'll soon know about it.' Well they weren't until a week or so later when I came home and he said 'The cops have been'. I said 'Why?' 'I don't know.' So I managed to find out who it was by dint of phoning the police stations around, not just one station but about three or four stations and spoke to the policeman who'd been and he came round to see me and he sat there and [my partner] sat on the settee over there, and the policeman said 'I feel most peculiar talking to you, and not talking to him.' He said 'When I came to interview him, about the accident, I thought he was taking the Mickey and I bring, brought my colleague in from the police car and said, “Will you listen to this gentleman and see whether you agree that he's not fit to be interviewed?”'

And they did, they both agreed. And what had happened was um, they'd gone to the DVLA and got his, address obviously and, this is why they came to interview him. So he said at the end of the interview 'Look, I will have to inform the DVLA about this.' So I said 'Well I was going to do it after Christmas.' 

I, well, it was one of the most difficult decisions I had to make, this business about driving the car because I knew he shouldn't be driving, because although his spatial awareness faculties are not, haven't been, damaged at all, its his decision-making abilities that have gone and he would, it would be dangerous, basically.

So really the whole situation took it out of my hands and I was heartily glad when the DVLA, well I, he stopped driving from the accident because his car was a write-off, fortunately, and he never asked to drive after that. So that was that. The DVLA finally sent a letter saying you know 'We've, we've been in touch with your doctors and your psychiatrists and sorry, but your driving license, needs to go.' So it went. It's never been a problem except it has made him completely reliable on, reliant on me now and that's one of my biggest problems.

Since he stopped driving it hasn't been a problem at all, he hasn't wanted to drive, he's never got in the car on the driver's side, made a fuss about it, asked me if he could drive, its as if its gone completely from his memory.

 

Describes how a good care plan has transformed her life and her relationship with her partner.

Describes how a good care plan has transformed her life and her relationship with her partner.

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And they had, they had it actually they had decided the social worker that the best thing they could do was to go for a continuing care plan so they filled in the forms, not there and then obviously. But the psychiatrist had to fill, do you know about the continuing care plan?

It's run by the local health authority and it's funded by the NHS and it is to try to help to keep people, to provide people with their needs basically. To have an assessment done, but it's done through the NHS rather than through the Social Services.  So they have the psychiatrist has to fill in a form, the CPN has to fill in a form, the social worker has to do one and I have to sign it, or sign something anyway. Then it goes to a panel which meets once a fortnight in [county] which is where we are based and they say yea or nay.

So they said yes and within a fortnight of these forms being filled in he was in this place he's in now so they, they granted five days a week day care, seven hours a day and thirteen weeks respite care during the year all funded through the NHS, we don't have to pay anything at all. And this will go on, on and on and on because once they've granted it they can't take it away.

And they are fantastic, it has transformed my life. And the home itself is a privately run EMI nursing home. The woman, the people who own it are a doctor and his wife. The woman who runs it is a qualified nurse and qualified CPN who went back to do a nursing degree because they wanted her to and when she came out she said I couldn't go back to being a CPN because I couldn't stand going to people's houses, telling them what they needed and then not being able to provide for their needs, and she is brilliant. 

She doesn't just allow me seven hours, she allows me as many hours as I need. So when I'm working I can take him in at eight o'clock in the morning, pick him up about quarter to six at night. And it's a big Grade 3 Listed building, there's plenty of room for him to wander. So it's transformed my life basically since March.

And that's the situation we're in now. Five days a week I take him and fetch him and then I have him in all you know in the evening and at night and at weekends. Apart from that he's in this day centre. And they've also allocated him a one to one situation because of his extra needs. So that's where we're at the moment.

Sometimes I feel very angry with him. Not so much now. I've come to terms with the situation a lot more as time's gone on and as I've got this continuing care plan which, I know the NHS has got lots of problems but I have, I think I've been very lucky. I really do, I have nothing but praise for the people with whom I've dealt and am dealing now and the fact that it's being funded through the NHS and it's not costing us anything is wonderful.  

And it's given me an opportunity to get some of my life back and this is what the woman who runs it says to me. She says don't look on this just as an opportunity to work, look on it as an opportunity to get your life back and it has, it's made a tremendous difference. So my relationship towards [my partner] has changed in as much as I feel very protective towards him now and I can laugh at some of the things he does.  

When he goes wandering off in town I think well, it doesn't matter because I've got five days a week when I can come into town when I'm not working. So when I'm with him I tend to give all my attention to the things that I can do with him.  

 

While not yet ready to accept handing over the care of her partner she values her 13 weeks respite.

While not yet ready to accept handing over the care of her partner she values her 13 weeks respite.

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When the psychiatrist said to me originally you'll to decide when your cut off point is I said to myself when he needs twenty-four hour care and when he's incontinent. And he's reached both and I, I'm not ready to let him go yet because to me there's still a person there you know.

So yes, there are still conflicts there and I have to think to myself well, you just got you've just got to get on with it basically.  And the woman and the home is very good. She said 'Look if you have a day or an evening and you think I just can't take it anymore, bring him in, leave him overnight'. She said 'You know it's as open as that, just bring him in. If you've had enough, you think I can't cope with this'. She said 'You don't have to phone us, just bring him in and leave him for the night.'

And knowing that makes all the difference. I've never done it yet, but I mean I know the first Thursday of this teaching course I do at the university we have a party for the students and I have to go to that, so I'll put him in respite for that night. I don't have to worry about him.

So there are ways of getting round this but there is still conflict in that I can't do exactly what I want to do. And I, you know, at the weekends particularly, unless I put him into respite. And I have to be careful that I don't go over my thirteen weeks because my daughter's-expecting a baby in August and I want to be available for that. My son's getting married later in the year, I want to be available for that, you know. I'm going to London next week to meet a friend, I want to be available for that so, I have to plan it, you know quite carefully really. I don't want to take up too many nights by being so, I won't say what I was going to say, being so fed up that I take him back to the home.

So we manage. Some nights not so good, other nights fine. The saving grace is he sleeps through the night and that's a big bonus. He doesn't get up and wander in the night at the moment. Touch wood.

 

They can no longer be equal partners in their marriage.

They can no longer be equal partners in their marriage.

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The big ethical decision is I have had to take over [my partner]'s life and that's not what he wanted. As I've told you before when we got together it was as an equal partnership, both, all of our, both of us had grown up children and families away and we got together as equal partners and he did not want anything else. And now that's, that's a problem, it isn't a problem it is a situation that's arisen because of his dementia that he would absolutely hate and detest. But it's inevitable.

You know you could go on about the driving, the money, those are the two, two of the biggest and the loss of, the complete loss of independence. Not being able to go anywhere on his own.

 

Suggests there should have been forward planning by a care manager.

Suggests there should have been forward planning by a care manager.

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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.

 

Does not have a problem with disclosing her partner's condition to people.

Does not have a problem with disclosing her partner's condition to people.

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How did you feel about telling people about your partner's dementia? You said that you had a very positive response when you did.

I had no problems with that at all because, by his own, by his own actions and. His own, the way he was acting people, when I actually told them they said 'Well we knew there was something not quite right, but we didn't know what it was.' They would ask him something and he would, or try and have a conversation with him and of course it was impossible even going back three, four years to have a conversation with him. And so people who tried to have a conversation with him knew that there was something wrong and they were quite relieved when I actually said what was wrong.

It didn't worry me at all. I didn't feel any shame or didn't feel, it was just this is what was happening and the more people knew about it, the easier it was for me to cope with what you know with what he was doing. And of course everybody made allowances for him and I mean people still talk to him, although he doesn't answer them. They still address him, which I find very good. Yeah, I would hate for him just to be ignored as if he wasn't there any more. I mean he's not in some ways, but we don't know how much of him is still there. This is the awful thing. If you could say well part of his brain is still functioning and he knows when people talk to him and he knows this and he knows that it would be easier, but we don't.

He understands certain things and then when you think he's going to understand he obviously doesn't because he just stands and looks absolutely blank at you as if he hasn't a clue what you've just said to him. So I had no problems with telling people. In fact it was a relief to me because the more people I told the more people I was able to talk to, and the more supportive people were. The CPN always used to say to me 'You're very open about it aren't you?' And I said 'Well, it's the only way I can cope. I can't hide it.' There's no way you can hide it.

 

Relays the advice she was given on making preparations for residential care before it is needed.

Relays the advice she was given on making preparations for residential care before it is needed.

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It is a twenty-hour a day, three hundred and sixty-five day a year job. And not a job that you'd choose and I think you have got to do what the psychiatrist told me to do, you have got to feel that when the cut off point comes you have prepared yourself for it as much as you can. But while you're still caring for your, whoever the person is you're caring for at home, you've got an eye to the future, you are looking around at what there is available if and when they suddenly do a steep dive into deterioration, which can happen. There's no guarantee that [name] will deteriorate on a slow basis, as he is at the moment, he might suddenly take a steep dive and then I would be floundering.

So I think its as well to get your future support network set up as well so that if you suddenly find you can't cope, there's somewhere they can go for respite care, to give you a breather for a week. Or if you find that really you can't cope at all, you've already started getting the lists from, I got my lists from Social Services and the psychiatric Social Worker, of respite homes, residential homes, nursing homes, all of those, so that you can start looking around basically.

Because it can take a long time I gather, from what I've heard from other people to find somewhere for them to go, if you get to the point where they need to go into residential care. Be prepared basically.

 

Examines her ethical position in relation to denying her partner access to his bank account.

Examines her ethical position in relation to denying her partner access to his bank account.

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In general terms about what do you think are the rights and wrongs of doing things behind people's backs when they have dementia?

I think if by not doing it you are giving them, you are putting them in a situation that's going to cause problems for them or danger to them, I have no qualms at all. I think the ethical problems, the ethical problems to me of cutting up [my partner]'s credit cards, it was not a problem. The ethics if you look at them bluntly would say 'Oh I have no right to take his credit card off him'. But the other side of the coin was he was going out and drawing all this money out and more money than he'd got in the bank anyway because the cash point in the end was refusing to let him have any money.

Therefore having left him his Barclaycard to get petrol with he was then starting going in the bank and using his Barclaycard in the bank to draw money out. Because I found out, I found he'd got a £100 in his pocket and I thought how did he get that, he hasn't got his card anymore and that's what I realised was happening.

So taking his credit cards off him, and I had to do it surreptitiously because he wouldn't give me them because that was part of his daily routine you see. And routine is very important for somebody with dementia.

No I had no, that to me was not an ethical dilemma. I realised it was an ethical topic so to speak but it didn't give me a dilemma. It was just a natural progression of what had to be done to keep him safe basically, safe financially if in no other way. It didn't give me any qualms at all.

In fact, I didn't want to do it, I would far rather not to have done it, but I don't think I had any choice. And it's no, it was no good me putting them in a drawer because he was going through the drawers look, just generally sort of now and then he would go through the drawers. I had to hide my keys and everything because again he would get the keys and put them somewhere else or go out to the car and leave them in the car. So I have to do lots of things surreptitiously for his protection basically or for my protection as well. And I don't have any ethical qualms about those.

 

Would accept the right to euthanasia for people able to request it, but not for someone with dementia.

Would accept the right to euthanasia for people able to request it, but not for someone with dementia.

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A few weeks ago, and I can't remember what brought it on, I suddenly started to think about [name] as he used to be and he used to think, and I started to think what a smashing chap he was. I met him in later life; I had already been separated from my husband about three years. He had been separated from his wife about twelve years. And I met him by chance.  I actually was a Special Constable [place] when I moved into [town] and he came to interview me. And I remember thinking 'Oh, I like him, but I bet he's married!' Well he was, but he was separated.

And I started to think back to those days and I thought, yes, that was what this man was really like. And I started, I started to write the story on the computer because I thought every day now I'm confronted with this, a man who is restless, who has his, his horizons have been completely closed in, through no fault of his own and this is what I'm aware of at the moment, this is how I'm judging him.

But if I look back and remember how he was, that was the man he used to be and that's the real man, that's the real [name], and I started writing it down on the computer, my memories of his and my relationship. And I found that helped a lot.  Because I was not just focusing on what he is now but what was and what could have been, and what should have been if everything had gone you know, normally.

So that was a turning point.

I think also, the psychiatric nurse came to see me two or three weeks ago and I was talking about going, going to London to Christmas, I was so indecisive about it that I phoned her up and said 'Please come and talk to me about it because I feel I need to go for my children's sake and my own sake, but I feel so guilty.'

And she came and she, amongst other things she said 'There's an awful lot of people living on their own with dementia,' and she said 'they, some of them are living in squalor and they've got nobody to look after them except carers who go in.' and after she'd gone I thought, yes she's right, so really he's very lucky. He's got somebody here who's looking after him all the time. All his needs are catered for, so why should I feel guilty going and having a few days out. And that was a bit of a turning point, that sort of jolted me back into thinking, well maybe you're doing too much for him.

 

Believes 'Living Wills' should be legalised and doctors encouraged to respect them.

Believes 'Living Wills' should be legalised and doctors encouraged to respect them.

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I mean I know, I could have a pretty good guess that [my partner] would be horrified to see himself and would want not to be here, but I couldn't be certain of that, I would never agree with assisted death or euthanasia - no. But 'Living Wills' would make a difference, yeah, yeah.

And do you think generally they are a useful thing to have?

I do actually because to go back to people who suffer from something that incapacitates them to the extent that they couldn't commit suicide and yet they're living this horrendous life, it's going to end in death, in a horrible death and they have no quality of life at all because everything has to be done for them. And they cannot be at all, they're completely and totally dependent, it must be like hell on earth, especially if you're an active mind that's trapped in a body that's not allowing you to do anything. Yes I think, I know 'Living Wills' don't carry any legal weight but, I don't see why they shouldn't if they're properly witnessed like, as an ordinary will is. I think they should carry, I think they should carry weight. But at the moment - I'll go back to something I said before - I think the medical establishment is too prone to keeping people alive at any cost these days. So whatever your quality of life has been, even if you are likely to die within a week they'll still try to keep you alive in many cases. Not every, not all of them but too many of them. So yes I think 'Living Wills' are a good thing and I think they should be legalised.

 

Being honest with yourself about how you feel and get help for yourself.

Being honest with yourself about how you feel and get help for yourself.

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Well first of all I think, admit to your self how you feel. Because I think I have gone through all the negative emotions that a human being is able to go through. Anger, terrible, terrible anger at the whole situation that means [name] has been, hit by this awful thing. I know there are thousands of other people in exactly the same, well not exactly the same situation, to whom it's happening and I have every sympathy for them.

I hope they don't feel as strongly as I do, the terrible anger about the situation. The terrible anger towards him personally and then the guilt, because its not his fault. He didn't choose to be like this. In fact he'd be appalled if he could see himself.

The terrible grief. I got a book out of the library on understanding dementia and it said 'Dementia is like a continual bereavement, because unlike a proper bereavement where you have the great grief when you lose the person because they die, you've got, you're losing a bit of that person all the time and you're watching it happen. So day after day you're grieving for the bit, perhaps the next bit that's going, or the bit that suddenly comes to you that day, so terrible grief.

A curtailment of your own wants, I'm talking to dementias, to carers now aren't I? So don't be frightened to acknowledge your own feelings because they're quite normal and I think if you try to suppress them you're not going to do yourself a service at all, you're going to actually maybe cause yourself mental problems yourself, depression and so on.

And if you need to talk them over with somebody, go to somebody like a counsellor, get the so, not the Social Services so much because they're not just involved with dementia, get the psychiatric services, get the help of somebody who'll come along and sit and listen to all your moans and say 'Look, you're quite normal to be feeling like this.' Look after yourself greatly.

 

There should be a checklist of things carers may need to know.

There should be a checklist of things carers may need to know.

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I do think one thing about the professionals that's a bit negative, what I've found out has been by a process of gradual finding out, talking to other people, listen, hearing something, reading something, being told something. And I feel that there should be a sort of a checklist held by and I'm not sure whether it should be the GP, the psychiatrist, the CPN, the Social Worker that should run you through all these things. I mean practical things, things like Power of Attorney, I was told that, I already knew it, it was already too late. Things like you get a reduction on your Council Tax. Things like you have, you can have a disabled badge sticker for your car.

Sort of things that you find out by talking to other people who are in the same situation, 'Oh did you know about such and such?' 'no', 'oh well yes'. I mean two people at the Alzheimer's Society Carers' meeting didn't know about the Council Tax and City Council didn't know about the Council Tax, and they had letters backwards and forwards saying 'no you're not eligible,' 'yes we are,' 'no we're not,' 'well we know somebody at our group who's got it,' 'well then that's wrong they'll have to pay it back again'. And then when it came down to it [town] City Council was wrong. The person who dealt with it, and this chap got so many hundreds of pounds back in back pay.

The county council were fine, I just wrote to them and said were we eligible. They sent me forms they sent the doctor forms, filled in and we got the reduction. But I can't remember how I got to know about it. And then somebody else told me about the disabled sticker, just a friend of mine and I do think there should be a checklist somewhere of all these things that you should, that you are eligible for or you should be thinking of because you don't know from one day to the next what you should be thinking of or who you can go to.

And if you're somebody who's very retiring and very shy and not one who's willing to get on the phone and find out you just sink. Well you must do. That's what worries me, is these people who don't like to make a fuss, don't like to make waves, don't have much confidence, spend all their days looking after their partner or whatever and fall through the net. And don't get very much help or support because people don't realise they need it.

I think I said in my last interview when you asked me what advice I would have for the professionals if you, if you find somebody coping too well, be rather suspicious. Because probably underneath they're not coping all that well at all, or not as well as they like to make out.

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