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Interview 09

Age at interview: 53
Age at diagnosis: 61
Brief Outline: Her mother, a strong minded widow, bitterly resisted surrendering her freedom and finally had to be sectioned before being transferred to residential care. She died recently twenty years after the first signs of her dementia, in a nursing home.
Background: Carer is the oldest daughter of three children, who over many years found the conflict between responsibilities towards her mother and her young family very difficult. Carer is married but has given up her job as part time social worker.

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Describes how she felt it easier to cope with her mother's behaviour once she knew she had Alzheimer's disease.

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Describes how she felt it easier to cope with her mother's behaviour once she knew she had Alzheimer's disease.

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I think because we thought it was depression you know the feeling around if it's depression it's a treatable condition. And I think we behaved towards her in a manner that would indicate that she would get better and would try and, when she had lapses of memory, would try and help her find a way of remembering things or try and, sometimes ignore the fact that she, that she, trying to say 'Yes it is Tuesday, you remember it's Tuesday.' You know, that kind of comment, which in retrospect I feel was a very damaging experience for all of us because we spent a lot of time not understanding what was wrong with her and we had, it resulted in a lot of anger and upset at times.

When we were trying to confirm that 'yes it is today' or 'no it isn't'. If we'd know that she was dementing then you wouldn't have used that, you would have just accepted that she couldn't remember and got on with life. And when we all, when we did do that life was much better for all of us. And I think that resulted in an unhappy time for, you know there were times that were OK but there, were a lot of times when you got so frustrated with her lapses and forgetting to do things, turning up at the wrong time, the wrong place.

And, and it wasn't a case of patterning behaviour, 'Of course you remember,' or 'Why did you forget?' or 'Let's put things up here.' And just it was, if we'd known, if I'd known that it was never going, she was never going to be able to recall then, and had somebody told us then we could have used a different approach with her. And I think it would have been better.

Was that perhaps that, if you had known it was dementia you wouldn't have thought your mum was culpable?

Yes, I, I think, there was a time, because my mother had, she was quite histrionic at times and, and was, we began to think well maybe it's attention seeking kind of behaviour and that if we say, if we reprimand, well 'reprimand' sounds, but kind of take her up on issues then, then she'd, she'd pull out of and she'd remember and she'd behave in a way that was OK. Yes and that she was culpable for what she was doing to a certain extent.

And that she was in charge of herself, because she'd always been very much in control and responsible for her life and she always had made decisions for herself. So when she started making wrong decisions for herself there was an element of thinking 'OK, I don't agree with what she's doing and I think in fact she's wrong and I'm gonna tell her she's wrong' and the response came back was, you know 'So what, if I want to do this.'

And if you know that she'd demented and that she's not capable of making the right decision that I'm sure that would affect the way you would respond to her and maybe you could guide her to a better decision as opposed to challenging her on her wrong decisions and things that she did wrong, rather being more supportive.

 

Noticed that her mother was becoming more difficult.

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Noticed that her mother was becoming more difficult.

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She came to help me when I had my youngest son, who is now sixteen and I can only say that help was in inverted commas because I found actually having her in the house quite difficult. She would start jobs and not finish them, she'd clean out the fire and then leave everything. 

She'd start preparing a meal and then not finish and actually I was running around, although she'd come to help me, I was actually running around and asking her to do things for me. So I began to feel there was something wrong then, so that's sixteen years ago. At the time I just put it down to possible depression and her being just difficult. So that's…

She returned to Scotland and I was, to be honest, quite relieved at that point. But during that period she would quite often just phone up and say 'I'd like to come down.' and she would and she'd come on the train, no problems at all. I went to Scotland when my youngest son was about four or five months and I then had friends again saying to me 'Do you think your mother's alright?' and I again presumed it was depression. I talked to her about it but she wouldn't talk about it.

Another year went past when we, I visited Scotland and she came here, we, you know, she was still independent, there wasn't any problem but there was already signs that she wasn't OK. So we had a holiday with my sister in Switzerland and it was very obvious that she was really not alright. She couldn't remember anything. You know, we talked, my sister was going to go on to work in Africa for two years. 

The purpose of the holiday was to kind of say farewell to her; she couldn't grasp that, she couldn't understand why she was packing but all the same functioning at a perfectly normal level but we couldn't make her understand that my sister was going away for two years and that we were all there to say goodbye to her.

At that point because it led to family arguments, a big argument, we begged and pleaded her to go and see a doctor, so we're now talking about fifteen years ago and to talk about depression. She did go but my mother had been, the person she chose to go to was a psychiatrist whom she had been at university with and she went privately. She came away from that saying 'There's nothing the matter with me, I'm perfectly alright.', at which point I was distraught because I knew there was something wrong and I couldn't find out what.

That's how it was left. We just continued like that for a bit with my mother getting increasingly forgetful, difficult, I mean she was quite difficult at times. Her friends finding her more unreliable, she would forget to turn up at pre-arranged appointments. She'd turn up unexpectedly, quite often at mealtimes but without being aware that it was a mealtime. I think that went on - I'm trying to kind of date it now - certainly for another year and a bit. That's how it went on.

 

Feels her mother's restlessness and agitation was caused by her attempt to bring order to the chaos in her mind.

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Feels her mother's restlessness and agitation was caused by her attempt to bring order to the chaos in her mind.

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I think I probably had this myth like a lot of other people think, once you start forgetting things it's alright because you don't remember. What I didn't know, I had no idea was the awfulness of not knowing things and not, the anxiety that went with it, just the constant trauma of not knowing what you're doing all the time and that got worse. I don't think anything prepared me for that, this terrible distress that was in her, because in the flashes that she had, she knew there was something wrong but there was this constant activity with her and it just got worse and worse. 

Wondering where she should be, what she should be doing, she'd forgotten to do something, she'd forgotten…and all of these things she had done, so there were times when she knew but you know, she'd go up and down stairs a hundred times you know thinking she'd left something upstairs or downstairs.

And the constant feeling that she ought to be on the move and doing something else and something different than what she was doing. And you know scrabbling for bits of information, all the time she'd be looking through old letters, try to make sense, it felt like trying to make sense. 

In fact when I was talking to my husband about your coming he said he remembers her already, before, if I split into say the last two years, but somewhere between 1990/'92 when she was already quite bad and we'd go up for the weekend and she'd always get up very early and she'd be just constantly moving, turning letters over, trying to work out what day of the week it was, trying to work out what meal it was, trying to work out.... I think Terry said to her 'What's the matter?' and she said 'I don't know what I'm doing, I don't know what I'm doing.'

And nobody prepared me for that and the anxiety just got worse and worse and it was awful, just awful. I can't remember her feeling relaxed and calm. Fortunately music was wonderful and she could play the piano and I could get her to relax a bit by playing the piano. But she'd go to a concert for example and get up half way through you know at the interval and go home because she couldn't work out, she couldn't relax.

 

Describes telephone calls which alerted her to her mother's level of dementia.

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Describes telephone calls which alerted her to her mother's level of dementia.

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And phone calls, she knew my phone number, it would just go on and on, there'd be days I'd get twenty phone calls, not knowing what she was doing, where she was supposed to be, what was happening to her, it would just go on and she'd get into a loop and couldn't'

 

It would have been hard to predict how dementia would affect her mother. Wishes she could have alleviated her agitation.

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It would have been hard to predict how dementia would affect her mother. Wishes she could have alleviated her agitation.

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How long it was going to be. Because, even now I mean, it's seven years since she's been in the home, there's no particular end to that you know. So it's a long time, so we're talking now, if I date it to the time that (children) was born which is sixteen years, which is when I first knew there was something. Or, I can date it now, at the time I thought she was depressed and I think I thought that for the next couple of years that she was severely depressed but that's fifteen, sixteen years with no particular end in sight. 

So that's a big chunk out of my life, certainly a big chunk out of my children's life and it's getting to be an enormous chunk out of my mother's life. So yes, it's the length of time that it could go on for. And I did read that but somehow it didn't, I think I remember seeing it could go on for twenty years in some literature that I read. But you don't take that in, the time.  

The other thing was that I wished I'd realised about the unhappiness that it causes really for the person who's demented and that spills out into everything. The fact that just you being there is not reassuring so all the time and effort that was spent into going and making sure she was alright, sorting out things for her, sorting out her cupboards, sorting out the fridge, all that.  None of that was actually, was she able to be reassured by any of that and it feels like it's a constant on-going one-sided thing.  

I mean even, she'd phone me in a frantic, saying, when she was here I couldn't go to the loo without her saying - it's like a toddler, you know - ' where are you,  where are you?' But then seeing me didn't necessarily make it better, it sometimes did. Sometimes there would be a few minutes where it would be reassuring but my saying things like 'Don't worry, it'll be alright.' none of that. I don't know if it would have made any difference but I spent a lot of time trying to think about how to reassure her and it actually didn't make any difference at all. 

Not in terms of her state of mind or'I know it's not'because now I've seen other people with dementia and you know I've seen people's progression with dementia and so I know it's not the same for everybody but her particular form was of being exceedingly agitated. And this constant, constant seeking for whatever it is, I had no idea that, that would happen. I don't know if it would have changed my mind about how I dealt with it, I don't know. But I didn't know that was part of, or could be part of, or, yes, possibly you can read about it but actually living that anxiety is a completely different thing.
 

 

Evidence of her deterioration eventually led to her asking for her mother to be taken into care.

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Evidence of her deterioration eventually led to her asking for her mother to be taken into care.

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But she was still managing to live alone, do things but it's difficult. I was doing frequent visits up to Scotland and she would, every now and again she would take it in her mind, she'd come to England and she'd come and see people. Then she'd take herself off on trains and be OK. 

I was going up more often to Scotland, she was coming less on her own. But we are, she was still managing to do things on her own. She went to Austria on holiday, she went to Spain on holiday and on all of those occasions I had comments from friends saying she can't really manage this any more so, I'm trying to date it now but I can't remember when the exact…  But she was still very adamant that she could do all these things on her own and I was beginning to have to warn people that they might find her difficult and that she wouldn't be the same and they might have to…but still allowing her to do all that. 

But I didn't want her to get in a mess and her friends not know what had happened to her so I was beginning to have to say 'You may find she's forgetful' or 'Let me know if there's a problem and I'll come and sort her out or whatever.'

The last six months was horrific and I can only say it was a nightmare with me having to go up to Scotland once a month and, fielding her care from here was a series of carers, the GP, their unit, until we could get her a place. When I eventually, when we eventually got her a place, well, no she came to, it wasn't really a crisis but it got to the point where the neighbours couldn't sustain it any longer. 

I begged and pleaded the consultant to take her into hospital for an assessment because I didn't think we could manage to get her into care from home. And they took her in and they sectioned her actually for an emergency section first and then a twenty-eight days while I found some appropriate care.

 

Explains the strategy for getting her mother tested by the DVLA.

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Explains the strategy for getting her mother tested by the DVLA.

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Then we had to get her to stop driving and the GP, I planned it fairly carefully with the Psychiatric Nurse and the GP and he'd never done that before, writing to Swansea, so he actually took advice from the, what do you call it?

Well he took advice from the DVLA but the Medical Defence Union because he was really worried about doing it, which meant writing a letter to them to say that she wasn't fit to drive because the nurse had asked him and I'd asked him to go and talk to her about not driving anymore. She was absolutely adamant that there was nothing the matter with her driving, she'd never had, apart from that one prang, she'd never had an accident and why shouldn't she drive? So he wrote the letter. I planned this really carefully, so I said 'Right, you write the letters so that it arrives about the day I come' because I knew that would be the beginning of the end in terms of her, I knew that when she lost her driving licence that she'd lose her fight to kind of carry on, which it was really.

She was outraged when she got the letter, she was ranting and raving and I was there because I'd planned it to be like that, of course I got the blame for it, it was all my fault. But I wanted to support, my idea was that I would be there to support her through it. The Nurse was wonderful he phoned me up and said 'How's it going?' I said 'Absolutely awful.' He dropped everything and came and he sat with me while we coped with the rage. So that was horrendous, and that was about two years before she went into care.

 

Her mothers care plan did not work when the day centre, and eventually the home carers, said they could not cope with her.

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Her mothers care plan did not work when the day centre, and eventually the home carers, said they could not cope with her.

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And then, this takes us up to the summer of '93. We had a care plan, I can't remember, I think we'd worked out a care plan, it didn't work terribly well, we were going to up the level of the day centre so she was going to go twice a week and in the summer of '93 I spent a long time with her social worker working out a care plan so that we would get covered for every day, some kind of cover for every day. 

They got an agency to help; she got the maximum amount of help from Social Services and day care. That included going to two sessions a week to the day care centre. We spent hours on this thing, this plan and getting the carer mum knew, getting an agency with three separate carers so that each meal time was covered, the day centre, so it was quite a tight package you know.

I spent most of August sorting it out and the second time she went to the day care centre after we left, they discharged her, said 'She's too difficult, she's far too restless, we're not having her.' I was beside myself because we'd spent all summer working out this care plan that included the day centre. 

I actually wrote complaining letters to everybody I was so angry. The Social Worker really was very helpful and he tried to see how we could rearrange it so that we could get more agency help. I asked the Nurse to visit more often to kind of cover that and we sorted out the care package.

And he, I would liase with him and I'd phone him and he'd check on the care package and see how it was working, so that went on to about January '94 when it was quite obvious we couldn't keep mum at home any longer and we had a conference when I was up there and the agency that was providing the other care and the Nurse at the, the carer that I'd got threatened to resign at Christmas and couldn't cope. Nobody could cope with her because they said she was just so stressed and so agitated at home.
 

 

Feels that giving up driving marked the start of her mother's decline into dementia.

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Feels that giving up driving marked the start of her mother's decline into dementia.

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But losing the car was incredibly traumatic for her and it was what she'd always said was that you know, 'you have independence if you've got a car' and it was…having it forcibly taken away from her and not giving it up was pretty dire really.  

I knew that when her driving licence was taken away from her that that would be, that was the beginning of the end for her so it was quite traumatic, you know, that was definitely a big thing because of what she felt about driving. Because it summed everything up for her, it was independence, freedom, being in control of herself. I think it was all put into driving.

 

The friend her mother consulted about her memory refused to discuss his findings with the daughter.

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The friend her mother consulted about her memory refused to discuss his findings with the daughter.

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She'd agreed and in fact she did it off her own back when we asked her to go and see somebody. That there was something wrong and she, I think she obviously knew that there was something wrong herself. And much against her better judgement she agreed to go and see somebody. But she, the person she chose was somebody that she'd been at university, and she saw him privately, and she knew his wife quite well.

So I think she, it wasn't an independent assessment entirely and I think she probably put her, well her university, I mean, she hadn't kept up with him particularly but I think she put him in a difficult position. And I suppose I thought because he was maybe more friendly that he, I mean more of a friend rather than a professional colleague he might be able to say 'Well I think your mother's in trouble,' or something to indicate that we were in difficulties rather than it was something that would pass.

And I, I think that's, I would have thought the ethics, I understand where his ethics are from but from, from the relative's point of view, when you're struggling and you don't know if this is something that is treatable and she's not being, she doesn't want to get treated, or if this is something that there's nothing you can do about and you're just gonna have to live with.

I think it's a big difference and if somebody is able to inform the relative that this is not a passing thing, it's not something that is treatable, I mean it's her choice not to be treated for depression if she doesn't want to. But if she's dementing then it is the relatives in the end or somebody whose gonna have to pick up all the pieces, and I think it's only fair to the relative or to whoever it is who is the carer to give them some idea that this isn't a treatable thing, it's something that's, you're gonna have to live with. And I don't know how, how the medical profession are gonna resolve that one.

 

Anxiety about what she might have forgotten made her mother feel there was somewhere she had to go.

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Anxiety about what she might have forgotten made her mother feel there was somewhere she had to go.

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I think I probably had this myth like a lot of other people think, once you start forgetting things it's alright because you don't remember. What I didn't know, I had no idea was the awfulness of not knowing things and not, the anxiety that went with it, just the constant trauma of not knowing what you're doing all the time and that got worse. I don't think anything prepared me for that, this terrible distress that was in her, because in the flashes that she had, she knew there was something wrong but there was this constant activity with her and it just got worse and worse. Wondering where she should be, what she should be doing, she'd forgotten to do something, she'd forgotten…and all of these things she had done, so there were times when she knew but you know, she'd go up and down stairs a hundred times you know thinking she'd left something upstairs or downstairs. And the constant feeling that she ought to be on the move and doing something else and something different than what she was doing. 

She'd get up in the night, in the earlier days; she'd pack her bags and have them packed at the door. If I went out, this is before, to pick the children up from school, she'd have her bags packed ready to go because I wasn't here so she didn't know what to do so she packed her bags ready to go in case it was the day that she was going. That anxiety I had no idea about. There'd be flashes of insight, I had no idea of that; nobody told me about that. I kind of thought it would all be some…until I started reading about it.

 

Colluded with her mother's garage to try to keep her from driving her car.

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Colluded with her mother's garage to try to keep her from driving her car.

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Actually, a lot of people could have done it, it wasn't particularly because she wasn't paying due care and attention but she damaged the car quite badly. When I took it to the garage who constantly did, who did all her things for her, it was a small…they said 'It's a write-off!' The next day he said 'Could you come and chat to me?' He said 'I want that car to be a write-off, your mother shouldn't be driving.'  I said 'I know she shouldn't but I don't know how to stop her. She won't take advice.' because she wouldn't. So I said 'Well let's just prevaricate.'

I had to get the insurance people to come and do an assessment and they of course said it was amendable. So it was mended but he took a long time to repair that car and we were both trying to prevaricate on that as long as possible but my mother independently would be phoning him up and saying 'When's the car…why have you not finished the car, where's the car, where's the car?' And it would go on, once she got a bee in her bonnet it would go on and on and on, so she might be phoning him five times a day sometimes to say 'Where's the car?'

In the end she insisted that he finish the car and he phoned me up and said 'I'm sorry, I'll have to finish the car, there's nothing I can do about it, I'm not happy about it.'

 

Believes the medical profession has some obligation towards those they cared for but in reality sees little of this.

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Believes the medical profession has some obligation towards those they cared for but in reality sees little of this.

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I think, I've thought for a long time, even since my mother, you know that last crisis we had with her, that I think the medical profession has some obligation to those who care for, and I don't think they do. They have a care to their patient, and their, their obligation in the current way things are organised are to the patient, and to their confidentiality, to their integrity and so on. And not to those necessarily around them. I think, I think they do worry about them and I think a lot of GPs are concerned, but their primary responsibility is to their patient. That's in my experience.

I think with something like dementia and something that is going to involve long term chronic deterioration in somebody, if you're gonna get a good effective support for the patient you have to get the relatives - or whoever is gonna do the caring - on board as soon as possible. And to make it feel that they're part of some kind of plan or, I mean I know a lot of relatives run away from the whole thing, they don't want to have anything to do with it. But for those who are gonna do it or for those who are gonna be responsible.

 

Gets glimpses of the person her mother used to be.

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Gets glimpses of the person her mother used to be.

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No, I think because my mother retained enough bits about herself throughout the illness that even after she'd had the stroke she had some little mannerisms with her good hand, or she'd have a facial expression, just a touch of it that was her. That I could recognise as being part of her before she became ill and she managed that, you know there was always a little bit left of what was her.

What I didn't recognise was the very angry part that we had during the early stages. And that was quite a shock really when she became almost violent on one occasion to my sister. And, and the rage, the rages that she would get in were a shock, and so she was different.

But when she was calm there was enough of, and right up, as I say right up until the very end there was always a little touch of her that remained. It would be the way she touched her hair or she would sometimes raise her eyebrows in an expression, I don't know if she did it because she understood or if it was just something that was her that you could think, 'Oh yes she used to do that and that's a recognition'. Or she'd look at you as it she was understanding everything and you'd think there's that touch of her that's still there.

 

Relatives should not have to make difficult end of life decisions. Disputes hospital ethos of saving life at any cost.

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Relatives should not have to make difficult end of life decisions. Disputes hospital ethos of saving life at any cost.

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But it was you know as a family you're put through, in a time of real distress, some totally thoughtless kind of stuff, really thoughtless. I mean you could see by looking at her you know you're not going to want to resuscitate her for a start and what's all this for you know, who is it for all this stuff about antibiotics and drips and tissue, you know who is that for, whose benefit was it for? Was it for my mother's? I don't think it was for my mother's at all. It was to make sure that you know the doctors had done their bit.

And nobody thought about how to let her go in a reasonable way without it being a traumatic experience for all of us, which it was. No, so people don't think about that. I think when we saw the consultant he was quite horrified that we'd been made to make decisions about withdrawing antibiotics. I mean he felt that was a medical decision and that it was nothing to do with us and that we shouldn't have been put in that position, to make those sorts of decisions.

And you know so, but then he should be instructing his junior staff that it is a medical decision and it's not up for discussion.  But at every point in hospital you have to made a decision, everything. You know it, and 'Are you in agreement with this?' 'Do you agree with that?'  And some things you know, some things you don't so you ask the right question, you think you've asked, fortunately on the day we had the discussion about continuing antibiotics the deputy manager of the home was visiting us and said 'Do you want me to stay while you have this discussion?' Fortunately she had the presence of mind to ask all the right questions so that was really helpful.

But I don't, I think the medical profession could get their act together a bit better. I think if you're into hospice care and palliative care you understand that but in an acute hospital the idea is that you do everything possible to prolong life. And I don't think my mother was very well served by the medical profession at the end actually. Certainly no thought, no thought went into it.

 

Shared decision making with siblings who prevented her from taking on more than she could manage.

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Shared decision making with siblings who prevented her from taking on more than she could manage.

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When it came to looking for nursing homes it became a lot harder in terms of what we wanted and I for a short time debated about whether I would care for my mother here and whether. So we did have a discussion around whether we would sell my mother's house and, for us to buy a, you know a house and have a granny annexe. And both my brother and sister were quite adamant that they didn't want me to do that because they felt it was too much.

I was quite prepared to have a go. Well I was, I thought I was!  But they were quite firm on that and, not about selling the house but about me taking on caring for my mother. So that wasn't a disagreement. It was very much you know they both said 'No, you're not gonna do that, you can't do that, and you've got your kids to think about,' and so on. And I suppose that was relieving me of a feeling that I needed to do it.

In terms of the money, because my brother was the Power of Attorney I've always had to discuss money issues with him.  And I, we've probably had a slightly different approach at times. I don't think it's led to any disagreements or anything, it's whether or not we sell all the shares or you know what we're gonna do. And, so yes we've had discussions but it's never led into a disagreement about you know, no fundamental disagreement.

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