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Interview 22

Age at interview: 61
Age at diagnosis: 70
Brief Outline: Was cared for at home until very recently when he was admitted to residential care. Before this he attended a day centre with residential respite every 6 weeks. Later was on Exelon but taken off when he developed side-effects.
Background: Carer is mother of four who gave up her job as a social worker to look after her husband at home. Diagnosed in 1997. Patient was an ex army major.

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Exelon made her husband ill and was expensive.

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So we had some medication which, I suppose it calmed my husband down a bit. That's something else I forgot to mention. When he was first diagnosed as Alzheimer's he was given Exelon and he gradually built up to the top dose and he was just so ill physically. 

He was completely spaced out, he was vomiting and he was totally zombified. And as soon as we could we came off of it gradually, and it cost us a fortune as well! Spending a lot of money to make you feel ill is not very, helpful.

 

Finding ways of including her husband in conversations.

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Perhaps if we bumped into people I would sort of, yes or it's like when you first introduce people he'd say something like 'Oh hello [name]' and then perhaps say to her or say to them together' 'Oh you did all those rambles together didn't you,' and my husband would say 'Yes' but he obviously didn't remember, so yes I mean things like that I would try and draw something which connected them together. But nothing as sort of formal as sort of, I don't know, it was done on a very sort of casual basis. I'm trying to think.

Possibly I've said things, I mean when my husband's, people have been a bit baffled by the response they're getting I might have said to them afterwards 'You do realise my husband's got a memory problem?' He said, 'I'm beginning to,' this sort of thing. Yes I try to find some common ground, if I'm having a conversation with somebody, perhaps if my husband's obviously forgotten I'll bring him in as well. I'm just trying to think of a particular one.

I bumped into someone, we were just walking across [place], not that long ago and I bumped into somebody we'd met on theatre trips. And I sort of said to my husband 'Oh we haven't seen [name] since we went to [town] have we?' and he said 'Oh no.' but he knew anyway what the situation was and he was very good, including my husband.

I mean people do, when they're aware, I think they, other people will go out of their way to try and find common ground or just sort of tune in to what's going on. What I do not like standing with one or two other people and my husband and excluding him. I mean that's just, that just isn't on. If he's there he's there and he's included. But I don't know if I've ever made a conscious effort. It's just the way things are really.

 

Was not prepared for her husbands disinhibited behaviour.

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I must say the frontal lobe bit's taken me, that has really hit me, especially when its, your granddaughter, when he's using expression to her that, hang on he only talks like that when we're in bed!  I thought this isn't, right and then I say when we were on holiday he asked her very personal questions. And you know I hadn't come across anything like that you know.

Or this disinhibition I mean he's inclined occasionally now to just drop his trousers. He did it at my daughter's the other night but luckily the children didn't notice. And he'll unzip his flies and just sort sit and stroke himself. I mean he's always wearing a pad but he'll quite happily sit with his flies' open and just sort of touch himself.

And, oh two or three years ago now we were waiting at a, we must have been out for a walk and we were waiting at a bus stop and he just suddenly came towards me, I was wearing probably a tight t-shirt or something, and just grabbed my breasts and said 'What are these then?' And I thought you don't do that at a bus stop, you know!

Yes, and he makes no bones about what he wants to do I mean, when it comes to - what's the word - urinating or as he calls it 'poohing'; he'll talk about it quite loudly wherever we are, and quite graphically as well. He doesn't sort of say 'Oh I think I need to use a toilet'. He'll say 'I need to do a pooh and its coming out'. It doesn't matter who's around, he'll just say it, just like that!

That I do find a bit difficult and I say I, I hadn't come across people doing that when I was in the hospital, I suppose it didn't arise. And then when he was at [the respite unit] last time he, there were a few sort of evacuations while he was in the bath, and they deal with it there without any problems, but its not exactly a party trick is it? 

So yes I did know about dementia but I didn't know much about frontal-lobe syndrome. That can be a shock.

We were also very vigilant from then on that [he] should not be left alone with, with children. That has been possibly my, biggest concern. Because when his grandchildren come and stay there's two little girls, they're what about 7 and 8 now, and when they were here last time he was standing in a doorway watching them get dressed. I mean they had their knickers and vests on but he was standing there watching them and they felt very uncomfortable about that.

And when we go out he makes comments, not, so much in the last few months he's, but back in the summer we were on a boat trip and there was a little girl on the boat and [my husband] kept looking at her and I kept trying to distract him. And then he kept saying 'Do you think she's wearing knickers?'

And it was just so, shocking and another time he was looking, there was a picture of a very young, well sort of probably late teens girl on the front page of a magazine and she was wearing very brief shorts and she had her thumb stuck in at quite a provocative attitude and I, could hear him talking and when I came in here he had this book in his hand and he was saying 'Go on, pull them down just a little bit, go on, go on'. And it was really creepy; the voice, I've never heard his voice like that before and so it really spooked me.

 

Describes her difficulty persuading her husband to see his doctor.

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Well I think we'd just gone through a phase, just after we'd moved when I realised we had a very urgent sort of something going on, and I did suggest nicely several times 'Would you go and see the doctor?' or 'I think we need to go and see the doctor,' or I tried to persuade him that you know his memory was really poor and that perhaps we could get some help.

I remember really losing my cool one night and just saying 'I just cannot go on living like this, it's just too awful.' And it was just after Christmas I think I made an appointment to see his GP and I put him in the picture. I gave him some examples of what had been going on and you know how the changes had sort of become more obvious after the move and everything. And he said 'Well we don't have to think gloomy thoughts, there are other reasons why people become forgetful, we'll do a full MOT.'

So I did get [my husband] in to the doctor's with a view, I mean I was up front about it, I said 'I'm worried about your memory but the doctor said he hasn't seen you for ages and he'd like to give you a full medical.' He said 'Well I'm perfectly fit, I walk fifteen miles twice a week and all the rest of it,' and I said 'Well perhaps we'll just get you checked out, just to be on the safe side because I knew he had high cholesterol and I said 'You need perhaps to go and have your cholesterol checked if nothing else.'

So he did agree to go to the doctor and he let me go in with him on the first occasion and the doctor took lots of bloods and made another appointment and all the blood tests had come back pretty well OK. So he talked to [my husband] and [my husband] did agree eventually that he would go and see somebody about his memory.

 

A post-mortem may reveal fronto temporal dementia, with implications for her husband's children....

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Well it's something which we discussed at the meeting on Friday, there's a possibility, there's a, the consultant, the two local consultants in sort of dementia and Alzheimer's, they're pretty sure that what [my husband] is suffering from is a fronto temporal lobe vascular type dementia.

But, there is a vague possibility still that there could be something genetic in it. And the only way to be sure is with a post mortem but because this area does not have a teaching hospital or a specialised interest in dementia they wouldn't normally request to do a PM. And if we wanted it done we need to set it up obviously before he dies.

But that's something, which for myself I mean is, the dementia has hit him and the cause isn't terribly relevant but the implications for his family are still there. And how I'm going to broach that with them is, is a biggy. I don't know how you know 'Do you want your dad to have a post mortem so you'll know if you're going to get this disease? ' Put at its bleakest. So that, is something I'm working on at the moment. About as ethical as it comes I guess.

I feel if any of them want it then yes I think, I think it has to be for them to decide. I mean I, I don't mind, I don't have any real worries about it. So it is really I think for them, for them to decide, if I decide to give them the option. Perhaps I need to talk about it more. I don't know who with really. 

My, my kids are brilliant, they're very supportive but I think they would have to say 'Well it's, it's for his children to decide.' Because I mean they just see  as , the cause of this horrible thing is not really relevant, we just deal with what we've got.

The local consultant, he was very, very up front about you know what it entails and whether they would want to know and you know whether testing, I suppose if I gave them the option, maybe if we had the post mortem then they would have to look at the option of taking it further for themselves as individuals.

But I suppose once you're faced with that sort of option it does put a lot of stress on you, doesn't it? And then on the other hand if anything developed later, two of his children I know are still considering extending their families, maybe they need to know before that, before that happens. Maybe if they've got that knowledge then they will make different decisions, I don't know! There's one couple, I mean they're both in their 40s and they only have one child. I think we've more or less been reassured on this point last, last autumn.

Because my younger stepdaughter had read something about frontal lobe dementia and it being like a 50% chance of this particular gene being passed on and she asked me to find out more about it. Which I did and we got another assessment of  from the doctor who is based in north. And he came back again with the vascular dementia probably caused through smoking, he hasn't smoked for thirty or thirty-five years but he said that doesn't matter it was still an option. But he felt that the likelihood of it being one of the other frontal lobe ones was minimal.

 

Carer felt that the chance that a drug might help was sufficient to justify its use and that it...

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I think that if it's the right thing for you then it should be available. And I think maybe we should have got some to start with. Because it was so bad for him I feel quite aggrieved at all the money that we spent out on it. I think if we'd been offered a trial period and it was working then maybe I wouldn't have felt so sore about having to pay. But I feel if it does work like it did worked for (my friends) I think you know you shouldn't be penalised. I mean we could have afforded it but it wasn't easy. I know lots of people who just simply couldn't find that amount of money.

So, I think of it, it's like with the MS drugs, I think if people need it they should have it. I don't think you should be penalised because of, of your illness but I think that is absolutely wrong. People who need treatment whether it's for gout or measles or cancer or whatever, if you need treatment it should be available, you shouldn't have to sort of scrabble through your savings to get it or go without because you haven't got the resources. 

I don't think there's any question about, that. I know they were sort of saying 'Well it was only for a limited time' but when you know somebody's going to die of their illness, limit the, all your time is precious and I don't feel that you should reduce the quality of somebody's life because of the lack of their funds. I'll get off my soapbox now!

 

Describes the problems arising from allowing her husband to manage his own medication.

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At one time if I'd put tablets out for him he would take them. More recently, perhaps this year, he has played with his tablets and he will pop them in a spoonful of pudding or mashed potato or put them in a sausage or something. And unless I was actually with him and got him to take them I couldn't be sure that he'd had them.  

On one occasion, I mean this wasn't prescribed medication, it was cod liver oil, he actually opened up the capsule and drank it and then complained because it tasted fishy, it was quite horrible. And another, another time I found a tablet dissolving in the bottom of a yoghurt or something like that because he doesn't seem to take them unless I'm actually there and supervise, he doesn't always take them as tablets. And he's having increasing problems actually swallowing tablets. He was put on Brufen a little while back because he had a really bad knee, he had sort of arthritis in his knee and it was playing up and he was taken Brufen which has a sugar coating and should be swallowed straight down but he was trying to crunch it which wasn't really the idea.

And the same with the iron tablets. Again you're supposed to swallow them whole because apparently they're designed to dissolve in a part of the gut where it's most beneficial. But he would sort of crunch it up or he would put tablets in his sandwiches because he just didn't seem to understand the importance of it and I would get the instructions 'To be taken with water;' 'To be taken with food.' He'd just look at it, it didn't mean anything to him, seeing it written down. He didn't actually fight about having to take medication but the actual method was not perhaps what it said on the instructions. But I did try to make sure that he had it at the right time and in the proper method.  

That's a very recent, very recent thing. Until possibly three months ago he was taking tablets with a drink and without any problems. But as I say, you don't chew cod liver oil and complain that it tastes fishy.

In general, do you have any thoughts about surreptitious medication?

What are we talking about here major 'tranqs' or?

Do you make a distinction?

Difficult one. I think if somebody is a danger to themselves or other people perhaps there is a case I mean if you tried all the possible avenues of discussion and persuasion and involving anybody who might have some influence, some positive influence on the person and they're still saying 'no.' I think if they are a danger to themselves or other people possibly yes there would be a case for it but it would have to be the very, very last resort. I don't know. Maybe if it prevents some even worse form of treatment there might be a case for it. I'd be very uncomfortable with it though. I certainly wouldn't want to think that anybody did it without my knowledge, I would have to be very involved in the decision for my husband and for myself obviously. I just hope I'm never faced with that. 

I think I might have joked about putting  tablets in a spoons full of jam. I don't think I've ever done it. A difficult one but I think you know in absolute extremes maybe there is a case for it. But I certainly wouldn't want anyone to be given medication just for the sake of keeping them quiet and making their lives easier. The same with catheterisation, if you can't be bothered to toilet with patience you shouldn't be looking after them.

 
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His daughter explained to her stepmother why she chose not to visit her father.

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She said his face, his voice and his mannerisms were all still there 'but dad's gone.' She said it was really eerie not to, find him because everything else was the same. And she said 'I think I choose to remember him as he was, the brilliant father and grandfather that I knew.' I thought 'That's a change of attitude!' Because when I've spoken to her she's had quite a lot to say about her relationship with her dad. But she wants news, she said keep her in touch and, she just said a few other bits about my holiday and what have you.  

But, I can understand the feeling of wanting to retain your, old memories but I think if she'd seen him with me and perhaps come out with us and seen how much he gets from the moment, you know how, although it's gone almost immediately he's actually happy at the time. 

He enjoys doing things and I think if she'd seen that maybe she'd have felt better about it rather than just remembering him as an empty shell who rejected her. I think that's a really bad way to finish. And I don't know whether to get back to her, because she's in America I don't really want to be tied up on the phone forever and ever. But I'd like to find a way of communicating with her that didn't sound critical. 

I think looking back a lot of her behaviour while she was here was perhaps denial or some sort of deep, deep fear about what she was going to find and how she was going to deal with it.
 
 

Coping with her husbands incontinence is a daily burden.

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About a year ago we were, again we were on holiday and I noticed he got out of bed quite quickly one morning and he wet on the floor, just a little bit and that, that happened increasingly, until January this year he was wetting the bed virtually every night. I had a 'kylie' sheet which I put on his side of the bed. But then, about that time he started going for respite [at] an NHS resource at [place].

And the second time he was in there I went out and got single beds! I couldn't get, because our bedroom's so small, we had it fitted around the double bed, I had to get two, two-foot six beds and we actually had to put them together, but I now put a plastic sheet between the two mattresses, just to be on the safe side.

And he's also become frequently incontinent, bowel wise as well so that, that has made a huge extra sort of workload for me. I start every day with getting him out of bed, stripping his bed, getting him in the bath, nowadays I need to be around most of the time he's in the bath or he just wallows. So I'm sort of up and downstairs for the first half hour or so of each day.

Yesterday when we were out, he'd dirtied himself and I, he had a funny turn when we were out um, he virtually collapsed on me and I had an awful job to get him back. And I just let him sit, so of course by the time he was actually mobile again um, he had to be showered and we, we have this quite a lot now. Every, every trip out is, within minutes of walking he says 'Oh I need the loo' I say 'Let's go back then'. 'No'. So I know by then its probably too late.

I mean we use pads all the time. Night-time we have the biggest ones they can provide but he still manages to soak them and the bed. And I was washing quilts two or three times a week as well as the other bedclothes. And I say that, that is probably the biggest thing at the moment.

 

Escaping from residential home.

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He's just going, trying to, he's actually escaped twice, from a secure unit, which made me very concerned. The day after he moved in I was out in the morning, got back and there was a message on my answer phone, would I ring the home - excuse me - so I rang the home and they said 'Well it's OK now he's turned up but we needed to let you know that he'd gone missing.' I was so stunned I couldn't really react. I thought, the day before we'd taken him in, there were swipe cards, keypads and my grandson who'd come with me had said 'At least he won't escape from here, will he?'

I just could not believe it when they told me and what really scared me, he'd walked from the unit along a pavement and then along a country road, it must have been a good mile on a summer's Sunday morning, no pavements and turned up in the local pub. And the pub owner realised there was a problem and rang the police and the Unit had already rung the police so they put two and two together. And he'd managed to con a pint of best bitter and then realised he didn't have any money and the care home manager went to pick him up and took him back.

I say, at first I just said 'Thank goodness he's safe and fancy him finding a pub.' Because he'd never have, it was just pure luck, he'd never have got there. But then I began to think when I put the phone down - hold on he was walking along that road on a Sunday morning, no pavements, no road sense I just was absolutely devastated really.

 

The slightly 'batty' atmosphere in the day centre was just right. Threat that cuts may close down...

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The [name] Unit where he goes, they're just wonderful there. The whole set up is, is very, I don't know the right word really' they're all batty! but in a, in a professional way. They can be quite sort of uninhibited in joining in sharing but they manage, I mean watching [name] who is the manager there, manage [my husband], she is just so good with him. And you know she can get him to go to the toilet and get him to wash himself. I can't get him to wash his hands after the toilet, but she can!

And the whole atmosphere there is lovely. I mean I've been in and out times, unannounced and the atmosphere there is always good. They're very respectful to the clients but they can have a lot of fun with them. And its just, you know I'm just so lucky you know I think to have it and now as I said I've been offered four days. I don't know, I think I want four days but I'm, gonna have to get my act together and do something myself. I don't know.

And [the respite unit] where he goes, that, that is a sort of resource everybody should have but it's probably going to be closed because it's so expensive. It's a five-bedded unit in [place] and it's used for day care as well for 

 

Explains why she feels it is important to continue to observe anniversaries.

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Are you still observing things like birthdays and anniversaries?

Oh yes, of course. Well he had a birthday just before he went in but yes that's very important. And I've suggested to his children that they send things. Only one of them sent a birthday card this year and I was a little bit hurt by that. And they, one of them said 'I thought it would confuse him.' And I thought well he still likes, if I take in letters for him, he likes to open them, he might not make any sense of them but you feel important if you get a letter through the post don't you.

And one of his grandchildren has sent him a letter, a very nice letter saying 'This is your granddaughter [name] speaking, I'm your son [name]'s daughter,' just to make quite clear who she was! Beautifully written, it was a very nice letter.  And his daughter, she sent a letter, a photograph of the children, a school photograph and a postcard which I've put up in his room.  I got a frame for the photograph.

No I think it's important for me as much for him actually. You know I wouldn't want to forget that. Nothing else is coming up until December but hopefully we'll do something for our wedding anniversary, and certainly Christmas. Well I'll face that when it comes, but I don't quite know how we'll deal with Christmas. No I mean it's, maybe it's for me as much as him, well I'm sure it is.

 

It is easier to get close to him again now she understands why he had changed.

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In lots of ways we've been much closer over the last few months because having to do some very personal things for him, and we've been able to laugh, laugh about them sometimes and - though we did go through a stage a little while back when he would shun any sort of physical contact. He'd sort of shake me off or not seem to want any contact but now he's far more amenable, he seems to enjoy being hugged. And if we're out he's always holding my hand very, very tightly.

And we, I don't know we still, this was one of my big difficulties with putting him into this nursing home was because we did still seem to have that, that sort of bond and I didn't want to lose that. When I go and see him I mean I still sort of flirt with him a bit, he sort of responds to a bit of flirtation and he responds nicely; possibly a year or so ago he wouldn't have done, he'd have just sort of shoved me off, 'I can't be bothered with all that,' sort of thing. But in a way just very recently that, that sort of bond seems to have become, become closer even when I visit.

But I suppose, it's difficult to pin a time on it but I suppose for a number of years his personality traits were becoming more focused, both the good and bad ones did seem to be almost coming to a head. But more recently you don't see very much of any of these sort of things. I suppose he does still sort of charge off in his own direction, I suppose that's a bit like making big decisions without, without consultation.

It's really hard to put time scales on things like that. You're sort of aware of a gradual trend and the sort of peaks and troughs but as to actually putting dates on it, it's really not possible. And again only having known him for sort of fifteen years and only being married for sort of thirteen and a half I don't know just how much the changes were taking effect before that.

 

Recalls the feelings she had about her husband before she understood that he was developing...

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I think, I think there have been times where I've sort of been aware of how his behaviour has been and I sometimes perhaps I was thinking of his, his illness as being partly responsible for what was going on but partly it was like a sort of, personality and his behaviour which had been I say somewhat cavalier, sometimes and perhaps not the most socially acceptable.

But again I'm getting a more sort of mellow view of some of the things that were happening. But you know I guess some of it is going to be personality and some of it is going to be the, the illness. I think I'm taking a more benign view of it now.  Maybe more of it was illness. Certainly anything that happens now I just you know I just can't take it as deliberate or you know aimed at me. I think possibly a year ago, possibly even six or seven months ago I was taking it more as a personal affront sometimes. But perhaps it wasn't, wasn't deliberate.

But certainly, thinking back I suppose I was saying sometimes well this is [name] and this is the illness. Some things were, were sort of, I did feel were different. And I was certainly getting a lot more emotional about what I felt was the, the slights or the dismissive behaviour. Now I just you know, well this is it. I can be a lot more philosophical about it.

 

Had heard that vascular dementia could be caused by smoking.

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I don't know how familiar you are with vascular dementias and what have you. Because well, he stopped smoking all that long time ago and when you see all these anti smoking campaigns they never mention dementia. I mean yes the heart disease, the strokes, emphysema, all sorts of other things but I've never ever seen any publicity linking smoking with dementia.

I think why, because it's the one thing which has had an effect on one of my children he, he tried to give up before but he has given up now, he said 'If that's what it does to you, no thank you.' I suppose vascular, if it's vascular it could be affected by the smoking, if it's like mini, mini strokes or whatever.

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