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Interview 04

Age at interview: 60
Age at diagnosis: 80
Brief Outline: Distance care difficult as mother refused to accept help. Difficulty communicating with social services. Had to apply for a Court of Protection order to control her finances. Problems finding a suitable nursing home. She twice escaped.
Background: One of two sisters caring for their mother, at a distance and later in a nursing home. Diagnosed in 1992. Carer has taken early retirement.

More about me...

 

Describes the problem of trying to decide what to do when she received distress calls from her mother.

Describes the problem of trying to decide what to do when she received distress calls from her mother.

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Then as I said it was the telephone calls. We also had very little support from my mother's doctor. Again, I'm not quite sure why, but sometimes I'd get telephone calls at half past nine in the morning from mother saying, 'I'm dying.' I'd say to her, 'Well, I'm sorry, but I'm three hours journey away, what do you expect me to do?' I'd phone her doctor and say, 'Could you call?' and the doctor would never phone me back. Which is all very fine, but I needed that reassurance.
 

 

Says she would not have wanted testing when younger but might be interested now she has retired.

Says she would not have wanted testing when younger but might be interested now she has retired.

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I wouldn't, mind, but I think perhaps I might leave it till, I'd probably leave it till about now, you know, now that I'm retired because I said I'm now beginning to think about my old age. If I know I'm going to have, get Alzheimer's then it will influence my planning for my old age. But I'm not sure that I'd necessarily want to know when I was younger. But I wouldn't mind, I mean it wouldn't make a great difference now because while I'm not working and not having to get jobs, and I've got an income coming in. So yes I'd probably quite like it for me.
 
 

Describes how her mother got lost on the way back from Australia.

Describes how her mother got lost on the way back from Australia.

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One time my mother decided to go to Australia for Christmas, because Christmas is always a problem in our family with my parents being separated. So, this particular year, I think it was about 1992, mother decided to go to Australia for Christmas to spend Christmas with a nephew, flew out there. Ten days later decided she didn't like it and was coming home again. So they had to phone us from Australia, to say she was coming back.  

We, my sister and I, went to meet her at the Heathrow and she never arrived. So after meeting three planes and she wasn't on them, we didn't quite know what to do, so we came back here and I reported her missing to the local police. And the Police said that if we haven't heard anything in twenty four hours, we'd get Interpol. Anyhow, at quarter to five that night, my sister's daughter phoned and said the British Consul in Athens has found granny, can someone go out and rescue her? I think the cheapest way to go out to Australia was to go to Athens and then change planes.  

So I just had to put the phone down, phone Thomas Cooks and say 'I need to go to Athens tonight'. They were absolutely marvellous. I went on the half past eleven plane from Heathrow, picked up the tickets there. But the British Consul couldn't hang on to her because she had to go to a 'do' at the Embassy, and mother wouldn't go to a hotel. So in the end she put her in an all night police station. 

She gave me the address, so when I got to Athens, I grabbed a taxi, showed the taxi driver this address and he took me to this police station. He was very good. He waited to make sure that the police let me in and they had barricaded the door to keep mother in. And so at half past six in the morning I picked her up and we were wandering around Athens trying to look for her suitcase. She couldn't remember where she'd left it. 

We didn't quite know what to do, because Thomas Cook's said that we could have gone back on the same plane, but they said in case there's a problem, its only an hour and a half turn around, so they booked me back on an afternoon plane. 

So, in the end, we went to the Intercontinental, because that was the nearest hotel to the police station, which was £100 a day, and booked a room there. We stayed in that room and then came home that night. But it was marvellous, mother had all her money; she required a coat, apparently, because her luggage had gone missing and she hadn't got a warm coat, somebody had taken her to a shop to buy one. And she had some sort of story of having been given a night's stay by strangers, but we never discovered what happened to her hand luggage, and her main luggage turned up three months later. 

 

Feels that it would not be an advantage for her mother to take a drug which would keep her at a confused intermediate stage of her illness.

Feels that it would not be an advantage for her mother to take a drug which would keep her at a confused intermediate stage of her illness.

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There's a drug isn't there which, they say will retard it? That worries me because the, main problem was when my mother was in the sort of middle part, middle stage, when she was getting confused but not confused enough to go into a residential home. So that's when she was a loose cannon. And if one of these drugs just brings somebody back to that situation then I think it's a very bad idea, I wouldn't have been able to cope. Which is perhaps a bit hard, the person concerned might have been happy, but I wouldn't have been.

As I said, this drug did cause me concern in which perhaps they might be able to bring somebody back to an intermediate state. I said that really does, because I feel that's when it's most difficult. When my mother wasn't quite bright enough to be sectioned, but was beginning to have erratic behaviour, and that was very difficult to cope with, and as I said, again there weren't the procedures to cope with it. And I'd feel unhappy if drugs are researched say brought my mother to that situation but, couldn't bring her back to a situation which she could, could cope for herself. Which seems a bit unkind but I think you've got to think of other people as well.
 

 

Had problems with Meals on Wheels and suggests the service could be used to keep an eye on people living alone.

Had problems with Meals on Wheels and suggests the service could be used to keep an eye on people living alone.

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The real point was not so much the fact that she couldn't get Meals on Wheels, but that they, but nobody had made any contingency plans in case she couldn't. I mean, after all, if she needed Meals on Wheels, if she needed a meal and I wouldn't have thought it would have been impossible either to have worked out a procedure by which say, she could have been left something or somebody could have come back at a time when she was there. Or, somebody just review the situation. But as I said, it was Meals on Wheels or nothing.

And the fact that there was nobody close if, it just didn't make sense to me. I think that was the real problem, not so much the fact, I mean after all Meals on Wheels is a voluntary organisation, it's more the fact of no contingency plans when they wouldn't provide a meal. And I don't know whether Meals on Wheels reported back or whether the social worker knew. I mean we certainly didn't get any feedback as a family as to why a meal hadn't been provided.

I was talking to, a school friend of mine whose sister who had been involved in this field. And she well part of the idea is that Meals on Wheels can check up on the person concerned. So they just left a meal, they wouldn't do that. Well, that's a good theory but to me it's not the primary purpose of Meals on Wheels. And again if they are checking up on the person concerned then there should be some sort of reporting back situation, or some sort of liaison within organisations.

 

She and her sister tried to make arrangements for their mother to ensure that she got proper meals.

She and her sister tried to make arrangements for their mother to ensure that she got proper meals.

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It was things like getting her haircut and getting to the dentist, we never quite discovered how you sorted that one out. We had a care worker in for her, but my sister suggested we had her in for the evening, because we knew at least that mother was home in the evening. But mother wouldn't let her into the kitchen, though she was prepared to come and cook for her.  So mother didn't really get fed which meant that we had, my sister and I, to go down once every three weeks at a weekend and take mother out for a meal. 

So at least she got fed once every three weeks and we would take food down with us. But there again, it was really difficult to know what food to take, because my mother wasn't coping with, she'd got a fridge/freezer, but she kept turning it off which meant the stuff was thawing out and then she didn't understand the frozen food. Her care worker put in ready meals for her and she would take them out of the freezer and say to me 'Sylvia, do you want some beef in mushroom sauce with your cup of tea?' And then she'd put them back in the freezer again. So we were going screaming.  

What else was it? One time the care worker brought her a container of soft cheese, in a sort of margarine tub, a flat one, so mother thought it was margarine and tried to fry in it. So she was trying to cook me eggs and bacon, cooking it in soft cheese. She didn't understand best by dates. Because we think that people are competent coping, but they weren't. One time when my sister was taking her out, she had the most appalling diarrhoea. My sister thinks she had eaten bad food. So we couldn't do anything about that. So we tried to take down things for her to eat which would last and which couldn't go off, so it basically meant cheese and fruit.

 

Difficulties communicating with care workers. Regional differences in provision of care.

Difficulties communicating with care workers. Regional differences in provision of care.

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But again, being long distance carers, we normally went down at weekends because its about a hundred and thirty miles from here to [town name] everything was closed down. Couldn't get in touch with the social worker, if you want to find out all about different organisations, didn't know about it because I didn't even know where to go to find out about them. 

Because although I know the system here in [town name], it's surprising how different it is in different areas. And [town name] being a big city has divided everything into sections, so that housing wasn't done centrally at the council house. It was done in a sort of housing office, somewhere in the area. Which makes sense to [town name] people but doesn't make sense to outsiders, if we wanted to sort that out. 

So, again, I just didn't know where to go for help and the Alzheimer's Society, I'm afraid, and perhaps I shouldn't be saying this on tape, but wasn't very good in [town name] at that time. There was an excellent one in [town name] when mother moved there but the [town name] one. Again I think it had originally been affected, I think by being in [town name], I don't quite know. So we didn't get much help from them.

I also mentioned the point about carers, you know it would have been lovely to have gone to a carers' meeting in [town name] but they're all during the week. And I did actually say at an Alzheimer's Society meeting here in [town name] in my home, we could he very occasionally have Alzheimer's meetings at weekends because at least it would have helped somebody like myself. 

Because I am sure it would have helped us to find other carers and I was sent once details of meeting on a Tuesday evening, quite close to mother, but for a Tuesday meeting, it would have meant going down Monday, or perhaps going down Tuesday, coming back Wednesday. That's two days out of the working week' you can't afford to do it.

I've been early retired now about six years and, quite frankly, if we hadn't had my early retirement we couldn't really have coped with mother. It wasn't really the fact that we could rush down more quickly, it was more the fact that I was here to take the telephone calls during the day or phone up the social worker during the day. 

I didn't actually visit her a great deal during the week, mainly because I'd got my own commitments, but it was useful being able to do so because occasionally we'd have a meeting with a social worker on a Monday Friday evening. But, again, the social worker would have long holidays and we never quite discovered what happened when she was on holiday. We weren't given the emergency phone number for out-of-hours times, which we could have given to her neighbours. So, yes, we couldn't have coped without my early retirement.

 

Why her sister felt that it would be impossible to agree to their mother living close to her.

Why her sister felt that it would be impossible to agree to their mother living close to her.

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She wanted to come back in fact she implied she wanted to live round the corner from her and my sister said 'I can't cope.' Because mother would, be likely to turn up on her doorstep, at any hour of the day or night and she was a bit inclined, being a doctor also, she was a bit inclined to sort of tell my sister's medical friends what to do. It was, it was she and my sister were in some ways too much alike. 

But also you know my, my mother wouldn't recognise that my sister had a separate life of her own. When she did previously live in [place], she used my sister's hairdresser and told the hairdresser things about my sister and, she, she'd go, she'd use my sister's bank and I think, you know, cash in on that.

I, [my sister], [name] just found it too difficult. I think if mother had been prepared to stay at a distance, or had been say prepared to live half way between the two of us. But no, she wanted to move back to [place]. And, she didn't want come here to [county], she wanted to move back to [place]. And we just felt that really, [my sister] felt that really she couldn't cope, she said she found it very difficult when my mother had been there previously.

We did actually try and investigate sort of residential accommodation for her in [place], in the [place] area but she wasn't prepared to, to accept that you know. She wanted to live, as I said, just in a house just round the corner, which we felt we just couldn't cope with that. And so it's, my sister was the person concerned it was, her decision, which I accepted.

 

Many unpaid bills and a summons for non-payment of council tax.

Many unpaid bills and a summons for non-payment of council tax.

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The money was the main problem. She wasn't paying her gas and electricity bills either. She got a summons for non-payment of Council Tax and that annoyed me, because after all, the social worker was employed by the same people as was asking for the Council Tax. The social worker hadn't bothered to get in touch with the Council Tax people and say, 'Hey, this person doesn't need to pay it.' When I told her to sort it out she did. There was no problem but it wasn't done automatically, so mother got a court summons. 

Then she wasn't paying gas and electricity bills, she was just putting them in a drawer. So every time I went down there I had to go through the drawer to try and find them and then take them off to pay them. Because it is actually quite complicated to pay a bill, isn't it? You've got to find a chequebook and you've got to know the address and a stamp and so on. And again, lucky we'd got the money.

 

Tried to make sure their mother had a reasonable diet while she continued to live independently.

Tried to make sure their mother had a reasonable diet while she continued to live independently.

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We had a care worker in for her, but my sister suggested we had her in for the evening, because we knew at least that mother was home in the evening. But mother wouldn't let her into the kitchen, though she was prepared to come and cook for her. So mother didn't really get fed which meant that we had, my sister and I, to go down once every three weeks at a weekend and take mother out for a meal. So at least she got fed one every three weeks and we would take food down with us. 

But there again, it was really difficult to know what food to take, because my mother wasn't coping with, she'd got a fridge/freezer, but she kept turning it off which meant the stuff was thawing out and then she didn't understand the frozen food. Her care worker put in ready meals for her and she would take them out of the freezer and say to me 'So do you want some beef in mushroom sauce with your cup of tea?' And then she'd put them back in the freezer again. So we were going screaming.  

What else was it? One time the care worker brought her a container of soft cheese, in a sort of margarine tub, a flat one, so mother thought it was margarine and tried to fry in it. So she was trying to cook me eggs and bacon, cooking it in soft cheese. She didn't understand best by dates. Because we think that people are competent coping, but they weren't. One time when my sister was taking her out, she had the most appalling diarrhoea. My sister thinks she had eaten bad food. So we couldn't do anything about that. So we tried to take down things for her to eat which would last and which couldn't go off, so it basically meant cheese and fruit.

 

The advantage of talking to other carers.

The advantage of talking to other carers.

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I think it would have helped if I could have joined, if I'd belonged to the local Carers' Association, but again I didn't know how to find it. Certainly I think while, while the person concerned is still capable of doing things, get the, get the Power of Attorney, try and get some, opinions of what they want and try and get, try and get your finances sorted out. 

And tell people. I think the big, the important thing I'd say to carers is 'Tell people'. I was amazed once I went round and started saying to people that I'd got a mother with dementia, how many other people were in this situation. And how many other people were coping, and again certainly if she had been a case in this area, I was able to find out a great deal about the residential homes.

So I know in theory, Social Services doesn't tell you. They, they say 'You've just got to go and have a look.' But, I knew somebody who knew a social worker, so she told me what the social worker told her. But certainly I would say to somebody who's is a carer, once you become a carer, go tell everybody. Introduce it into your conversation because there's an awful lot of people with knowledge and help. But unless you, you mention it, you don't find them.

 

Gives suggestions for making the life of the carer less difficult.

Gives suggestions for making the life of the carer less difficult.

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We're very much user unfriendly towards the position of people with Alzheimer's or dementia.  And it's only when you're involved in it that you realise how little it happens. I'd like to see, not the sort of things that cost money but the sort of, I was saying you know, simple things like making provision for leave for people who are looking after their parents, not just those maternity and paternity leave and accepting that. That's a good use of a situation. Again having, I mean well another big problem of having someone with dementia is, is simple things like going to shops. Because you need to be able to park outside, but nobody seems to realise that, but nobody seems to, there's no provision for that, and that's really quite difficult.

And this matter with finances and so on. I think the Government can do a lot more without necessarily putting a lot of money in. I think more sort of legislation, more to making life easier for people with, with dementia.  But at the same time equally I do think they need to realise that somebody like my mother could have caused considerable financial hardship to us her children, by her actions.

And I think we need legislation, at the very least to prevent that happening, because I really don't see why I should have lost out because my mother had dementia. As it happens luckily we didn't, but my mother's dementia must have cost us probably about £10,000. And you can't, you can't insure against it or anything like that. So I think more, more support certainly is needed, I think financial aid towards people with Alzheimer's. We did get the attendance allowance but once mother, once mother was in a residential home, but it wouldn't have applied to us I think just being long distance carers.

So I think, yes, more sort of legislation to change attitudes and more and more recognition of that a carer can have financial responsibilities which could end up with them being impoverished. I mean it, I could have ended up not having to enough money to pay my mortgage if I'd had to pay out, some of the bills I had to pay for my mother.

 

There is too little understanding of the needs of the person with dementia or their carers.

There is too little understanding of the needs of the person with dementia or their carers.

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How little we think in terms of if, if sort of middle aged people with middle class ideas making provisions for people with dementia. You may have seen there was a fuss sometime about [county] wanted to supply people with microwave meals rather than 'Meals on Wheels'.  Well not every elderly person knows how to use a microwave. Mother didn't understand about best before dates and that sort of thing. I think there's an awful lot of us imposing our ideas on them.

And it also annoys me when I go to Sainsbury's down the road and there's special provision for mothers with babies, but there's no way you can take an elderly person who perhaps can't walk very far who might wander off. And you park in a disabled sticker place, you know you could be in trouble and no, nobody sort of, there's no provision, we're not, we don't think in those terms. That is one of the big defects that we're not really sort of elderly or dementia minded.

We think, you know, we see parents and kids. We don't see parents and elderly. Because again I am sure you, you have it in your job, my employer's going for maternity leave and paternity leave, but there's no question under this spectrum of going for elderly parent leave. And that used, that used to annoy me because you could have as many problems in that way as you could with kids. So I think we, we're not at all elderly, elderly aware.

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