A-Z

Interview 15

Age at interview: 59
Age at diagnosis: 82
Brief Outline: Her mother had been an independent widowed woman. They had hoped when they were able to move her nearby that this arrangement would be adequate for several years but before long she had to go into residential care.
Background: Carer is married with her own family (2 children). She shared decision making with her brother and sister for her widowed mother who was diagnosed in 1998 / 1999.

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Her mother would blame other people for muddles she had made.

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Her mother would blame other people for muddles she had made.

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It had become evident by 1997 that she was in some difficulty living on her own. She was falling out with people that she'd been friendly with a long time. She was blaming people for things that I think she'd done herself or that hadn't been done that she thought she'd done and then, I mean for example putting her name down for an outing. 

She would say she didn't want to go so her name wouldn't be put on the list and then she would turn up for the bus with everybody else and be very upset that she wasn't allowed to get on it because she hadn't put her name down and there was no room. And she would say that she had put her name down and that somebody had crossed it off.

 

Suspects that her mother has some idea what is wrong but is unsure that she wants it to be confirmed.

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Suspects that her mother has some idea what is wrong but is unsure that she wants it to be confirmed.

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Do you think a person with dementia should be told the diagnosis?

If they wish to be. And, but it's not always clear that somebody does or does not wish to be. In my case, if it was me and if it was now, yes, I would want to be told because although I would be scared witless actually, at the whole idea that I was going down that particular slide, I feel that there is some provision that I could start to make and could prepare members of the family for what was going to happen.

In my mother's case I tried to ascertain whether she wanted to know. My view was that she possibly didn't but her, her previous, my previous experience of dealing with her was that she dealt better when she knew what was going on than when she didn't. She didn't like thinking things were going wrong and not knowing what it was, whether that was a social thing or medical thing. If she felt unwell she liked to have a name put on it and then she could deal with it and take the medicine, or know that there was no medicine.

But by the time we got a diagnosis I was also aware that she was quite frightened by what was happening to her. She would sometimes be quite up front and say 'I don't know what's happening to me.' ' I can't seem to remember anything.' 'I'm really getting worried.' 'I don't know what's happening to me.' And she couldn't elaborate upon it, she wouldn't or couldn't tell me what it was.

 

Alzheimer's Society gave advice about how to inspect residential care homes.

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Alzheimer's Society gave advice about how to inspect residential care homes.

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If I can't talk to her GP, who can I talk to? Oh, I can talk to the Alzheimer's Society who have been brilliant, absolutely superb, but I've bent the ear of the lady on the phone more times than I would like to say, less so lately but certainly for the, that period of twelve months, I was on the phone every week probably and they told me that I could ask for an assessment for my mother. 

They told me that when I inspected a home I should look for various things like a visitors book, like whether there was any entertainment, like what sort of policy they have about getting people up and putting them to bed and letting them behave as they want to behave and going in and having visitors and all this sort of thing.

And they, although I actually knew about it, through my sister and my own work, they also pointed out to me that there is an inspection unit for nursing homes to which you can have resort. And if you want to know the latest assessment they will send it to you and that is invaluable to know that somebody goes in and provides a check on the nursing home. If you're not satisfied with a nursing home then go to the inspection unit, tell them your concerns and if they think its appropriate they will look into it.

 

Mother could not form a mental image of the space between her house and her daughter's.

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Mother could not form a mental image of the space between her house and her daughter's.

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The memory problems she was having were all short-term memory problems and problems of, I think some sort of spatial problems as well. The flat is about a half, a mile in more or less a straight line from here and from her window you could see across a playing field, the top end of our road. But of course between that road, the main road and the, besides the playing field and the main road, between that and us there were then a lot of houses because we are at the bottom of the road.

And she could not understand why she couldn't see the house and she would stand at her living room window with me and say 'Well whereabouts is your road?' and I would point it out and eventually she learned where that was and she'd say 'Oh its just there by that white house. 

Well why can't I see your house then?' And no amount of conversation about it or drawing or illustration or any, any kind of example, or walking up the road, would convince her as to why she couldn't see my house from hers although she understood why she couldn't see her house from mine, presumably because the buildings are here and closer, and nearer.

 

Carer felt unable to assert herself but suspected the motives of the professionals deciding whether her mother should be given medication.

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Carer felt unable to assert herself but suspected the motives of the professionals deciding whether her mother should be given medication.

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Yes I'd be very, yeah, I think if that was put to me 'We can give your mother something but of course she'll then realise more,' I think I would have been discouraging about it. But I would also have been aware that I couldn't, I didn't have any right to stop it. 

I mean it's got to be a, I think you have to defer to the medical profession in these things but at the same time you have to be aware that the medical profession may not be totally altruistic in their motives and they want to look at the results of these experiments. Are they looking for guinea pigs? I don't know. But I can't, I don't think I like the sound of that one.

 

Describes how she knew it would not be right for her mother to live with her and her husband.

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Describes how she knew it would not be right for her mother to live with her and her husband.

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So, but I was aware that my husband had rights and issues within this and, I had discussed it formally and informally, mostly informally with people, on the basis that I couldn't move my mother in here. a) the house, most importantly, the house is unsuitable; but there is another option, you can move you know. We did talk our way through that and it wasn't something my husband wanted to do, it was nothing personal to my mother but he didn't want to move, and I didn't want to move, and besides which she didn't want to move in with us.

And she had said that all her life and continued to say it until quite late on in her illness. At which point she did start to say 'Well why can't I live with you?' By that time she was in the nursing home.

But up until then she'd always said, 'I don't want to live with any of you.' Now, I think if you're committed to a partner, I was going to say married, because that's really what I believe, but I think nowadays people make, or think they have made a similar commitment and therefore the same applies. If you're committed to a partner then that commitment is the prior commitment.

In the same way as if you have a child the commitment to the child takes precedence over the commitment to the other adult in the partnership because the other adult can take care of himself for a bit. But you have to try and balance it all the time. Once the child's needs lessen a little, then you have to try and balance the relationships otherwise you've got, you know it's got to be balanced. This is different, it's a parent who cared for you and now suddenly the roles are reversed.

It is not a parent who has a blood link if you like, or a long familial link to the other partner in the arrangements. My husband knew my mother for years and got on with her extremely well but the fact is she was my mother not his mother. And whilst he was sympathetic and wanted to do everything we could for her he was also, I think by the end of it he, was beginning to get a little fraught over it.

 

Describes how she and her sister share the responsibilities in caring for their mother.

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Describes how she and her sister share the responsibilities in caring for their mother.

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By this time I was doing all her shopping, all her washing. I employed a cleaner for her, who she paid. I was managing her pension. My sister was dealing with other aspects of the financial situation, she took all that on board because I had the physical side to do. 

Fridays became quite a good day, I'd set aside Friday afternoon and we would go shopping together and sometimes she was better than others, but she would walk with me and look at the shops and buy inappropriate things if I didn't prevent her. And I, but I did begin to think that we might manage a few years like this, again I had no idea what dementia led to, how fast it progressed, or slowly, or whether it was the same for everybody, you know I knew very little really.

 

Describes her reasons for rejecting the option of having her mother to live with her.

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Describes her reasons for rejecting the option of having her mother to live with her.

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I don't know what it must be like as a husband or wife caring for their partner but to care for your parent who does not live with you, you have the decision as to whether they should live with you. That is influenced by your own circumstances and their own, their own wishes and the wishes of anybody else who happens to be living with you.

Personally I think when one is married, the first priority is the partner to whom you're married - or committed to I suppose in this day and age - and the parent has of necessity to be the second priority, it has to be like that. Otherwise you rescue one relationship, well one person at the expense of another; that's all very easy to say but it's the doing it, its very difficult. I had great difficulty remembering that my first priority must be my husband when my husband was hale.

It was decided that the house that we live in is not suitable to have my mother living here in her - then - condition. Although there is a downstairs toilet facility, there are lots of little steps in awkward places. It, she would have ended up either a prisoner in her own room or sitting with us the whole time, neither of which would have been a good idea. As fond as my husband is of my mother, it would be putting a great strain on him, and we have a relationship of our own which is important to us - after many years of marriage its as important as it was in the beginning, it requires nurturing, not threatening it, really.

 

Getting used to the day centre but there were problems when she muddled which days she went.

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Getting used to the day centre but there were problems when she muddled which days she went.

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The first one that was tried, I had tried the previous year, I had asked my doctor if there was anywhere she could go to for one day a week or so and he had tried one. I don't quite know, I can't remember how he accessed that, but anyway, whatever, she didn't like it 'It was full of old people.' She didn't like it, the fact that she was going on for 80 was neither here nor there, she was 80 in fact' 'I'm not going there.'

But following the diagnosis she was able to go to a day centre attached to the psychiatric unit of the hospital which was run by this consultant's boss, if you like and he, she went initially one day a week, well in fact almost immediately two days a week because one day a week was too long apart for her to be able to remember what was going on, but two days a week she seemed to be able to cope with. Every week was a fresh week and a fresh experience but the two together with just one day in between, she got into a routine and she went relatively happily for some time, and then three days a week.

Partly that was I think supposed to help me, and it did because I knew where she was from 9 o'clock but the problems were that she had to be picked up and brought back. Bringing her back wasn't too much of a difficulty because they would bring her back in the hospital minibus and somebody would escort her into her flat and once she was there she knew where she was.  And we'd set it up as far as possible like her previous flat so all her familiar things were there, just like a slightly different layout by the nature of things, but she would, she would recognise her own pictures and things.

But going was a different matter, she would get the day wrong, she would go downstairs and try and get on board other people's buses and transport which were nothing to do with her. She would refuse to go, they would come for her and 'I'm not going' because she'd been out an hour earlier and tried to go and not been able to go on some other bus or transport she would, a fit of high dudgeon and 'I'm not going' and that was that. But they began, they learned, they knew how to deal with it for the most part, I think the drivers are volunteers but they, they obviously get the hang of it and by and large she attended most of them.

 

Describes a distressing incident when she realised that her mothers home carer was taking money from her.

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Describes a distressing incident when she realised that her mothers home carer was taking money from her.

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Anyway, as I say we had carers in, I had gone to Social Services and asked them to recommend somebody, which of course they won't do, they give you instead a list of accredited care agencies which are agencies who meet their standards. And already there I'm aware that I'm talking in 'bureaucratic-speak' if you like, I don't know how best to put it, 'agency-speak', not necessarily 'Social Services-speak'. But its, you, you find there's a whole world out there full of these phrases which mean something different in terms of care provision from an authority than they do in terms of an individual trying to understand what they're dealing with.

I picked one more or less willy-nilly and I had established that it was probably the largest in this county, or at least in this town and was used a great deal by Social Services and I thought well if they're using it to that extent then it must be fine. But there were two problems really' in the first six months of this arrangement my mother had thirty-one people through her flat, and what we wanted were the same little team of people to come so that she stood some chance of getting to know them and begin, being able to trust them, rely on them and believe in them.

As it was she was constantly opening the door to somebody she'd never seen before, or couldn't be sure if she'd seen before which actually exacerbated her problems. I had endless arguments with the agency about this, who explained to me that they had quite a high turnover in staff and they had other people who had needs and they had to put people, carers, wherever it was appropriate or convenient for them to go. In addition there were days when nobody turned up, which I found absolutely incredible and difficult to cope with. 

I needed to know that somebody was coming into my mother's flat for that hour and would see that she had a meal. My mother would ring me and say 'Nobody came' and because of her memory problems I didn't know whether she was telling me the truth or not so I had to establish whether anybody had come. So I had to go over to the flat, see whether there were any signs of her having eaten anything, because she would say 'Oh I've had my lunch' but often she hadn't.

And then my mother started to say that she hadn't any money. I was as I say handling her pension which at that time was something around '60, so I was paying for all the, my sister was paying the overall bill, I was paying for the food and provisions for the flat, any of my mother's needs, and leaving a certain amount of money with my mother, and putting the rest of it in the bank.

So I knew that I was leaving her with something like '15 or '20 a week and out of that she was paying - with the milkman's help - the milkman, and the man who delivered freezer foods and all of them had to be primed and spoken to by me so that they could understand what they were dealing with and we just had to trust them.

So, first of all I said to her 'Well you must do because I leave money with you.' And she said 'I haven't got any money, I never have any money, I've never had any money since I came here.' 'Yes you have' I said 'You've always got 15 or '20, by the time you've spent it you should have 5 or '6 left.' Eventually I said to her that, oh she had, had a habit in more recent years of putting, squirreling money away in drawers and things because she didn't, couldn't get to the bank or whatever. So, when my sister was over I said to her 'Well you go through all mum's cupboards and drawers and look for money.' Because I said 'It's difficult for me to do it because she's saying to me 'Don't you believe me?'' I said 'Perhaps you could do it under some other pretext.' So that was done and there was no money So I said to my mother ‘I will have to look through your handbag and your purse if you’re going to keep saying this.’  ‘Well do it, I’m not telling you lies.’  So I did and lo and behold there was, we couldn’t find, I mean I reckon she must by that time have built up something like 60 or £70 at least.  And it wasn’t, or more than that, a couple of hundred pounds I would have thought she would have had, in fact I’d begun to worry about how to get it back from her to put it in the bank when she started saying she hadn’t got any.
 
And there was no money to be found anywhere apart from the odd £5 note in her handbag.  So then I said ‘Well in that, now what I’m gonna have to do is give you money and keep it all written down in a book.  And I’m going to have to come over every time anybody comes to, to see whether any disappears.’
 
And that’s what I did for two or three weeks and it became plain that after a particular carer had been in the flat there was less money than there had been before the carer came.  So I, my sister initially rang the police from where she lives, and then I rang the police, and, it was
complicated by the fact that I was going on holiday and they said, first of all the policeman said ‘Well you’ve got several choices, you can, you can ask for that carer never to come to your mother’s flat again.’  Which I found extremely negative thinking and pointed out that if we did that the person would still be visiting the other vulnerable people. Or, he said ‘You can make an accusation, you can accuse her to us of, complain to us of theft, but…’ he said ‘…of course you’re going to have to be able to substantiate it, so if you want I can tell you how, how to do that, marked notes, etc.’
 
So the upshot was that – I won’t go through all the procedures of how I had to establish that she was in the flat and the money was in the flat – but I left a large amount of money with my mother and waited outside with a policeman until this girl came out and the policeman apprehended her and she had £25 of marked notes in her purse which she said her mother had given to her.  If she’d said my mother had given them to her we would have been up a gum tree really.  But she said her mother had given them to her, she was taken to the police station where a further £25 was found in her underwear, meanwhile I went into the flat, checked my mother’s purse and found £40 was missing.
 
In all she admitted to stealing almost £400 from my mother, I asked that she be prosecuted and the case went to court and she was eventually given 18 months probation and what they call ‘compensation to the victim’, compensation was the amount she’d stolen and was no compensation at all, really.

 

Had to accept a reversal of roles with her mother who could no longer make decisions.

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Had to accept a reversal of roles with her mother who could no longer make decisions.

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In the case of dealing with a parent, there's a role reversal and the, even though you may have been moved out of the family home for years and years, and you've been living your own life and making your own decisions, in the relationship between the parent and the child however, whatever their ages, there is always some residual authority invested in the parent. Well that changes, the parent becomes dependent on the child by, of necessity, and the child finds they're making the decisions for the parent' where to live, how to live, whether they have carers in, whether to move house, which GP, what to eat, everything, what to wear on a particular day.

And as I say those decisions can be huge decisions like whether to sell a property in order to fund care or just whether the person needs to wear a bra anymore. We recently decided that my mother didn't need to be cluttered up with such an object and asked the staff not to bother putting it on her. She's not aware that she's not wearing one so there's no point in it really.  We have sold her house, we did decide that she would need to go into a nursing home, but you can make as many decisions as you like but you have to have the co-operation of the patient and that's where it really gets difficult.

I think myself that its not, its never going to be a simple issue making decisions for other people. Its not really, although it's a reversal of roles, its not really like a parent deciding this school is better for their child than that school or that they will go to a scout evening but they won't go to a disco. It isn't, because you're dealing with an adult and you have to try and decide things what will be acceptable to that adult. At the same time you're restricted in what you can actually have, you're restricted by what's available, you're restricted by financial considerations perhaps.

 

Solicitor explained to her mother and to her what was and was not possible with Power of Attorney.

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Solicitor explained to her mother and to her what was and was not possible with Power of Attorney.

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He said to my sister 'I think your mother is perfectly able to do this.' In fact he said that with her present, she was quite happy, she wasn't offended by it and he'd explained to her that he had to ascertain that she was able to do this. 'Well why wouldn't I be?' she said. And he said 'Well you know there are all sorts of reasons that might be so but we don't need to go into those, I just need to be satisfied you are able to do it and you agree to it, you're not being pushed into it by your family or anybody else.' 'Oh no,' she said 'I think it's a very good idea.'

The only thing that changed in the course of that interview with the solicitor was that whereas she was going to give it to one person he suggested that she gave it jointly and severally to two people, namely my sister and myself because then we could operate with her but without each other if it, if necessary and it wasn't, if one of us was away abroad or, there was still somebody else. And it was deferred or as it was called Enduring Power of Attorney.

You don't have any real power to, to make the person do what they don't want to do. You don't have any right over the person at all but you can sign cheques for them to pay bills that they've agreed to pay. It's a big ethical issue involved in this, yes. [OK yeah.]

How did you feel about the Power of Attorney and the responsibilities that come with this?

We were led very clearly by her solicitor, my mother's solicitor who was, very clear and very good at telling us what our roles and responsibilities were and we took the view that he was acting in her best interests anyway, because he was her solicitor and should have been, but he was. And we had confidence in him and she had confidence in him and he told us what we could and could not do with this power. And in practice we did very little with it at all until she came to move and then it meant that I could deal with things at this end and my sister could deal with things at that end and both of us could sign the legal papers and my mother really didn't have to sign anything at all. Although some things she did sign, I mean where she could, she did.

 

Realised that though she tried to be totally honest with her mother it was not always appropriate.

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Realised that though she tried to be totally honest with her mother it was not always appropriate.

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I knew that she would feel as I did about losing control of her life and her environment and her decisions because she's my mother and we, I grew up with her and you know it's part of life's experience for me.

And I knew how frightened she had been of exactly this thing happening to her and it had happened and there was nothing that I could do about it, absolutely nothing. So the whole thing was a horror really. The only way to deal with it was to try and be honest with her when I could be, and I couldn't always be, and I had to rationalise that and know that there were times when it was better not to be honest for the sake of her well being, reassuring her rather than worrying her, which is not a comfortable situation to be in, no.

 

Suggests regular visits from a CPN would help inform and advise the carer and allow for advance planning.

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Suggests regular visits from a CPN would help inform and advise the carer and allow for advance planning.

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I think there ought to be, I think that people in my mother's position ought to have a CPN involvement, if it is only every quarter or even every six months where there is an input from the CPN. The CPN will visit and talk to that person and hopefully there's no need for some time, by the time they're in a nursing home, or would have notes to fall back on and would be able to do some sort of assessment and gauge how things were going.

Why do I want that? Partly, as I said because it would be a, she would be being interpreted to me by an informed - a medically informed or mental health informed person - which might make sense to me of some of some of the things that don't make sense. And this was really all more relevant perhaps a year ago when I knew less than I do now, when I couldn't get a perspective on it and when my mother had lived already a good year longer than any of us thought she was going to and looks, and she could go on living for, who knows, its open-ended really

 

Describes the difficulty of making decisions on behalf of someone with dementia.

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Describes the difficulty of making decisions on behalf of someone with dementia.

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So if you have to make decisions on behalf of somebody else you're on very shaky ground unless you can prove, I was going to say, demonstrate is a better word that you are genuinely doing it with their interests in mind and that's a big issue on occasion because of the sort of things you might be dealing with. Like giving away the brain to, for donation; like deciding to pay for a funeral in advance; like selling property and disposing of the contents of it, all those things really.

If you're doing them without the other person's knowledge, provoke a lot of questions and I have to say that although we tried to tell my mother that we were doing these things, it wasn't always possible to tell her in any way to be convinced that she understood. So we might have said it but it wouldn't necessarily have penetrated. And sometimes we didn't even say it because it would have been distressing for her, but we had no alternative but to do some of the things that were done.

 

Families should be allowed to discuss their concerns about a relative who may be developing Alzheimer's disease with that person's GP.

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Families should be allowed to discuss their concerns about a relative who may be developing Alzheimer's disease with that person's GP.

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I think GPs should be more enlightened than some of them are, I think they should be, as I say, give family's credit for intelligence. I know not everybody wants to know it, not everybody wants to hear it, but if a family is coming to a GP and saying 'We are concerned about our relative, there is inappropriate behaviour, this is what is happening.' I don't see that it breaks any medical ethics for the GP to say 'What are your concerns, explain them to me fully, what do you think is happening' and then put his own informed input in. And if he's asked directly 'Is there any sign of dementia?' I believe if he thinks there is, he should honestly say 'Yes I think there is.' Because people deal better with what they know than what they don't know in the end.

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