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Betty

Age at interview: 58
Brief Outline: Betty’s partner was diagnosed with primary progressive MS in 2006. She was made redundant from her job around the same time and is now his full-time carer.
Background: Betty, age 58, worked as a manager in the construction industry. She is white British, lives with her partner and has no children.

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Betty lives with her partner of 31 years. He was diagnosed with primary progressive MS in 2006, after about a year of investigations into the cause of a persistent backache which left him unable to work. Betty was also, around that time, made redundant from her job in the construction industry and, as her partner’s condition got worse, she became his full-time carer. Betty has found that information and services are not offered to people with MS, or their carers, in the borough where she lives. She feels that she has had to go out and look hard herself to find information. Her experience is wider than her own caring as she is a trustee of a local carer’s association and also a fund raiser for a local MS group. Betty is critical of many of the health and social care professionals and services (or lack of them) she has encountered, but she speaks very highly of the MS Specialist Nurse. She also praises the MS Society, who sent her a lot of useful information, and the MS Trust, whose 24 hour helpline she has called many times.

Betty talks of losing many friends, even close ones, over the years. She is able to leave the house occasionally to meet remaining friends and to see her 86 year old mother. But she often feels under pressure to get home. No one visits the house. Her partner is often depressed and fatigued and spends a lot of time asleep. Betty is often exhausted too, as her own sleep is disturbed by having to get up to help her partner turn over in bed and then not being able to get back to sleep. She often goes online during the night, talking to other carers. 

Betty expresses her dislike of being a carer very forcefully. She feels that the role was forced upon her and that it is not one she would choose. If she had the money, she would pay someone to do the caring for her. She is committed to staying in the relationship, though, despite the difficulties as ‘there is no one else to care for him.’ She is very frightened of what the future might bring.

Betty’s message for health and social care professionals is to spend time listening to carers, talking to them face to face. She encourages fellow carers to try and keep a sense of humour and to get some time for themselves, without feeling guilty.
 

Betty feels hurt that her partner is friendly and chatty to other people but doesn’t talk to her much anymore and takes out his frustrations on her.

Betty feels hurt that her partner is friendly and chatty to other people but doesn’t talk to her much anymore and takes out his frustrations on her.

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And I mean yesterday, because it was a bad day well I have to think, ‘No, he’s ill he can’t help it.’ Maybe if he, accept is the wrong word but maybe if he could try and cope with his illness it might help me better. But I’ve been told that some people never actually come to terms with having MS. Other people take ten years, you know, so I’ve got a bit longer to go. Maybe it would because before this happened we talked about everything, I mean it was a standing joke you know, you two can talk about anything even the price of carrots but that’s what we were like but we’re not now. I mean sometimes he’ll just sit here looking into space and you try and have a conversation and, ‘No, there’s nothing to talk about. I haven’t done anything, what’s the point of talking?’ And it is very hurtful. Unfortunately nobody actually sees this outside me. People at the day centre, ‘Oh, he’s marvellous’, you know, chats, this is the person I knew and loved, but they don’t see what I see now. As soon as he goes out the door it’s nat nat nat nat because he’s a chatty person, he’s friendly, he’s helpful and sometimes I resent that a lot, you know, it’s sort of why can’t you be like that to me indoors? But then other people have said it’s because you’re here 24/7. He’s got to take it out on somebody. Who else does he take it out on? But that’s not fair, not fair at all, not a nice person.
 

Betty feels angry at having been forced by circumstances into being a carer against her will. And she is angry with politicians and society because of their expectations of what a carer will do.

Betty feels angry at having been forced by circumstances into being a carer against her will. And she is angry with politicians and society because of their expectations of what a carer will do.

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And the other thing that really bugs me is when people, they don’t know what carers are like, they assume I’m a carer so I’m employed by the government, or whoever, and I get paid for it. Well, I’m sorry, you know, I am a carer, the people that they assume I am, they’re employed, they get salaries, you know, I do not. So we’re, there’s often that and the other thing that really annoys me, sorry I’m sounding very angry here, is people like politicians who are always saying, ‘Yes, we value you, we can’t cope, this country cannot cope without you,’ and then they pat us on the head and they forget about us. And that is so wrong. It really is wrong.
 

Betty was frightened when her partner took his anger and depression out on physical objects in the house.

Betty was frightened when her partner took his anger and depression out on physical objects in the house.

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Like I say, it was just a backache but, unfortunately, that is when the depression started coming in. Literally, I would go out to do something interesting (irony implied) like shopping and I’d come back and he’d got very angry and he’d smashed up furniture. And it got to the point when I was, literally, getting in touch with his consultant every solitary day. And it was frightening for me. And, in the end, I actually sent his consultant a list. It was an A4 list of everything he had smashed up. He started with cups, plates then he got onto furniture, came home one day there was a bonfire in the back garden. This was our kitchen table and kitchen chairs; he’d smashed them up in anger. That was when I was really frightened. The consultant said, ‘No, needs help, psychiatrist, you know, we’ve got to sort this out.’ But he, the consultant, was more concerned my partner was going to do damage to me. And I thought, ‘No, it’s not me he’s taking this out on, it’s everything else.’
 

Betty talks about a ‘pot of gold’ that the council has to fund respite for carers. Her carers group put in a bid to administer the money in the hope of ensuring access to respite.

Betty talks about a ‘pot of gold’ that the council has to fund respite for carers. Her carers group put in a bid to administer the money in the hope of ensuring access to respite.

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What sort of services do you need now?

Right, what do I need now? A cure for MS would be nice! Services? I think there is supposed to be a pot of gold that every council was given to give carers respite. This pot of gold has been sitting in our council and lots of others for about a year. I know nobody in this borough, and we are a large borough, who has actually had any respite yet. The group I belong to we’ve actually put in a bid to run this pot of gold. But it seems to have shrunk a great deal from how much the central Government gave to how much the local council is saying is in the piggy bank. And I think this just goes on and on, more corruption, never mind. 
 

Betty felt that the person on the MS Trust helpline understood her situation, because his wife has MS too.

Betty felt that the person on the MS Trust helpline understood her situation, because his wife has MS too.

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I’ve plugged the MS Society so I’ll plug the MS Trust. They do a fantastic 24 hour helpline and I have rung them on many occasions. It’s either them or the Samaritans, basically. There was one time, the first time I rang up, with them I didn’t know anything about them it was just a phone number, ring them .All the volunteers are people with MS or they’re carers so they know and I actually rang and I got through to a guy called [name] and I was sobbing my heart out and I’d had a really bad day and all the rest of it, and he told me a joke and it was a bit rude. He didn’t know me from Adam and within ten minutes I was laughing. He said, ‘I know exactly, yes, the wife’s got it, I know,’ and he knew.
 

As well as fundraising for the MS Society, Betty is a trustee of a local carers group, ‘fighting’ for the interests of carers in her borough.

As well as fundraising for the MS Society, Betty is a trustee of a local carers group, ‘fighting’ for the interests of carers in her borough.

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You get to the point when a lot of carers I know, maybe not so many carers that are carers to people with MS, these are sort of older people, maybe they’ve looked after their partner with Alzheimer’s or something, they haven’t got the fight in them, they really haven’t. So, it’s sort of people my age and younger who are having to fight all the time, which is why I became trustee of my local carers group. Because the carers I met they were, it was almost like, they were nice people but if you’d have gone up to them and said, ‘Right, you’re not getting any more help,’ they’d have said, ‘Okay, fine,’ and they’d have given up. 

Can you describe to me how you became involved with the Carers Association?

How?

Yes, what was the process, how did you first make contact with people or establish yourself in that role?

Right I wasn’t told there was a carers organisation around here, wasn’t even told there was a local MS support group. Yes, I am on the committee of a support group now, because I’m very ‘MS, more people should know about it.’ That’s something else, people do not understand MS. I do get very angry because there are lots of people who have got MS and they can still work, to look at them there’s nothing wrong with them but then you get the other side of the coin and you’ve got people that are really disabled with MS. I mean some of our members they are so disabled it’s frightening. So, there’s very much, you know, people do not understand MS. 

Basically what happened, one day I was wandering around doing nothing, probably chatting to a stranger at a bus stop, I can’t remember what I was doing, and I had to go and see the local CAB [Citizen’s Advice Bureau]. Without the real, there was a lady at the CAB she was a Rottweiler, she was an incredible lady and without her help I probably would have had a nervous breakdown, trying to deal with the council and God knows who else. And she said to me, ‘Oh, there’s a local support group. ’ But nobody had told me and I’d been in this situation six or seven months and, literally, I went and knocked on their door and said, ‘Help.’ 

And I, yes, they had socials, which I used to be able to go to but unfortunately now I can’t. They’re, it’s a local group, you have to be in this borough, they do have a lot of carers, obviously . They try and do things for carers and the people they care for but, like I say, some of the carers I met they were so down trodden and serious if somebody had said, ‘Right, you get no more money, they’d have just said, ‘Okay, fine’ and would’ve just curled up and died. And I wasn’t going to be like that. So I used to go to a lot of meetings and I got involved with meetings with local councils and things like that and yes I’m, I was probably a pain in the arse because at these meetings, there was always ‘somebody from the council who didn’t know an answer to a question and I’m one of these people that, I used to e-mail them so probably they were quite glad when I decided not to do that anymore, sorry. 

And then there was an opportunity, because they wanted a Trustee and one of the people who I became very involved with there who, you know, sort of put me up for all these things, he said, ‘Go for it.’ And I thought, ‘Yes, I am going to go for it.’ So, I’ve been a Trustee there now for, I don’t know, four years. But, unfortunately, Government cuts you know, it’s all very well a certain politician saying, ‘Big Society,’ and charities can, you know, sort of takeover but they can’t, they’ve got even less money. I mean, I’m the local fundraiser for the MS group and to fundraise now is blooming hard. I mean, it’s never been the easiest job in the world but it is very, very hard because people have got less money. So this ‘Big Society’ doesn’t work. It never will work. End of party political [laughter].
 

Betty is ‘scared stiff’ of the future, as it gets harder to look after her partner and he gets more depressed. She is not confident that she’ll be able to get the help she needs.

Betty is ‘scared stiff’ of the future, as it gets harder to look after her partner and he gets more depressed. She is not confident that she’ll be able to get the help she needs.

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When you allow yourself to think of the future what do you see?

Oh, aaarrgghhh, if this hadn’t have happened we wouldn’t even be in this country. [laughter] Basically if this hadn’t have happened we’d be living in France and, but it happened and we are here. I’m scared stiff of the future, I really am. I know you don’t die from MS but it doesn’t help. I am actually very, very frightened especially because of all the problems with Government and care homes and God knows what else. I wouldn’t say I have sleepless nights but I do worry. A lot of people have said oh, you know, put him in a home, walk away and I’m thinking, you know, this is my partner you really don’t do that. Like I say my partner’s not English, he’s German, I mean he’s lived over here for donkey’s years, he sounds more of a Londoner than I do so it’s very difficult, I think there is going to come a time when I’m not going to be able to cope because my health is getting worse especially my back. I don’t know how much help we’d get from Social Services, you don’t get much now anyway and I think for the future you’ll get even less. 

And there are so many things, I mean at the moment Social Service doesn’t work a great deal for lots of people and I think because of all the problems then it’s going to be even worse. I don’t know how much longer I can continue looking after him. Like I say, he’s a big guy and I’m getting shorter; I’m sure I’m shrinking. But I’m not going to give up on him. There have been times when I just want to kill him and maybe that’s an option, maybe I’ll just kill him [laughter] I don’t know, I really don’t. I mean sometimes he, he often says, you know, ‘Oh, I just wish I was dead.’ So, maybe you know, euthanasia? I don’t know, I really don’t. It is very frightening. I don’t know what else to say really; no, it’s very frightening, it’s very frightening.
 

Betty insists that the only way professionals can understand what it’s really like to be a carer is to meet carers and talk to them about what they do.

Betty insists that the only way professionals can understand what it’s really like to be a carer is to meet carers and talk to them about what they do.

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Is there anything you would want to say as a kind of summary to health and social care professionals about the things you think they could do better for people with MS and for carers of people with MS?

Right. Definitely they should meet carers. Very often if you say oh you’re a carer they may have met people who are carers of somebody with Alzheimer’s or they’re blind but if they actually took the trouble to meet a carer like me and to actually ask me questions, a bit like you’re doing, you know, this is what a real carer is like, this is what we have to do. Because they don’t understand, they really don’t. If they don’t understand how can they do their job properly? They can’t. They must have training. Nobody starts a job without training but carers have to start a job but we don’t get trained, we’re not taught how to lift somebody out of bed and do this and do that and how to get somebody standing up and the best way to get somebody to, we have to learn this the hard way and that isn’t fair on us because it makes us stressed out and angry. It really does affect our health as well so not only have you got people with an incurable illness who are ill, you’ve got all the carers and our health is all suffering so that’s going to be even more money added to, you know, the little pot. 

They should talk to carers and most of them they don’t. They just assume that you’re a carer a bit like a carer from the council. Well I’m sorry there are a lot of things that carers from the council will not do, an awful lot of things. But we have to, we’ve got no choice. I mean carers from the council won’t wash or launder soiled sheets and things, health & safety. If you get a carer from the council and they have to be somebody, say for instance in bed, they’ve got MS, there has to be two people to get them out of bed if they haven’t got a hoist. Excuse me. There’s me, you know, I can do it. It’s health & safety gone wrong, it really is. And the only way they’re going to understand carers is by talking to us. 
 

Betty is angry that she and her partner weren’t given more information.

Betty is angry that she and her partner weren’t given more information.

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Basically, just over five years ago my partner had backache but because of his occupation that was an occupational hazard. Usually a couple of weeks off work, fine. Went to a local GP, pain killers, the usual, didn’t happen, still backache. So, after about three, four months the local GP decided that he ought to be referred to a local hospital and then we had, I suppose, nine months of going backwards and forwards to the local hospital goodness knows how many scans and MRIs and things we’d never even heard of. But all this time, you know, I mean we were still hanging in there but unfortunately he couldn’t work because of the job he actually had.

We were called in after the last time and told there’s good news and there’s bad news. The bad news is that you’ve got something called MS but the good news is you’re got primary progressive and if you’re going to have anything that’s the best one to have. And then five minutes later we were in the car park and we thought, ‘What?’ [laughter]. Anyway, oh, before we left we were also told that an MS nurse would be in touch and, you know, all the rest. We came home here and we didn’t know what the hell to do. We didn’t know who to contact or anything. So we tried to get on with our life.
 

Betty has got her local MP involved in discussions about funding to make cannabis spray (Sativex) more readily available in her area.

Betty has got her local MP involved in discussions about funding to make cannabis spray (Sativex) more readily available in her area.

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I mean I’ve been trying to get my partner this drug for a year, Sativex. His consultant wants him to take it. So for a year, what I’ve heard is the consultant has to get in touch with the trust of the hospital, if they say yes it then has to go to the PCT. If they say yes then he can have it. But unfortunately he’s still waiting. I haven’t heard from the hospital trust so I’ve now got our local MP involved because it’s not only my partner it’s all the other people in this borough. Okay it’s not a cure but it might help a bit because all of the pills that are prescribed, they help that much and it would be so nice if something else could be added and there was a few more normal days because it would help him, it would help me thereby saving money. That’s my logic and I’m going to become a politician.
 

Betty had made a conscious decision to become her partner’s carer. But she felt unprepared for the role and is angry that there isn’t more support for carers.

Betty had made a conscious decision to become her partner’s carer. But she felt unprepared for the role and is angry that there isn’t more support for carers.

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So I thought, ‘Right, that’s it. I’ve got to become a carer.’ But I didn’t know what it involved, I really didn’t, because nobody tells you. And that’s when it all sort of kicks in, the enormity of it. You’re not given training at all. I think with something like MS you should be given training. I mean I didn’t know the correct way to pick him up if he fell over. There ought to be guidelines set down, you know, maybe a course , I don’t know, I’d go on a damn course. I’ve only found out through asking other carers, you know, well what happens........ and it’s, ‘Don’t worry about it. The best thing to do is leave them on the floor, you know, cover them up make sure they’re okay, right, maybe after a few minutes, maybe half an hour they might have enough strength to actually try and get up.’ But nobody told me this. It was another carer and I just think it’s wrong, you know, we are human beings here. I don’t know what else to say about caring. I absolutely hate it. I loathe it. And if I had lots of money I’d be more than happy to say, ‘Right,’ pay somebody, ‘come in, you do it,’ but unfortunately I can’t and I’m like the majority of other carers.
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