Ray & Sarah
Age at interview: 17
Brief Outline: Sarah’s mum has MS and from an early age Sarah took on caring responsibilities. Along with caring she is also an advocate for younger carers, providing help and support in her local area. Ray’s wife was diagnosed with relapsing-remitting MS in 1980, before the birth of their daughter, Sarah. The progress of the illness has been slow, but with some severe relapses. Ray and Sarah both feel that MS has made them closer as a family.
Background: Sarah is 17; white British, and studies Health and Social care at college. Ray, age 57, is a retired labourer. He is white British, married, with one child.
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Sarah’s mum was diagnosed with MS before Sarah was born; while her mum still looked after Sarah as a parent would, Sarah took on caring duties for her mother from a very early age. Sarah’s father, Ray also carried out care duties for his wife along with working fulltime. Sarah describes how at school she was bullied and at the time she could not understand why people viewed her as different. Sarah is now 17 and is very knowledgeable in both the medical and the personal aspects of MS; she describes herself as ‘a qualified carer just without the paperwork’. Sarah’s dad has now retired and together they work as a team and negotiate plans to ensure that someone is always there for her mum.
Sarah is currently studying health and social care at college and finds the material and the level of training easy because she has first-hand experience from an early age. Sarah describes carers as ‘unsung heroes’ and has become an advocate for young carers; starting a charity support group in their area. On reflection, she is surprised at the level of work and expertise that young carers are expected to achieve and feels there should be more support available. She feels frustrated with government policies which oversimplify and dismiss carers’ needs and make accessing support complicated. The work Sarah has done for carer advocacy and support has led her to be nominated for and win various awards, such as Humanitarian Citizen Award for the British Red Cross at age 13 and International Carer of the Year last year. Sarah will also be carrying the torch this summer for the London 2012 Olympics.
Sarah describes herself as a ‘fighter’ and explains how she is rarely fazed during caring because she has learnt to expect difficulties. Last year a combination of difficult circumstances made her feel a loss of identity and confidence. She experienced some depression and felt tired, panicked and anxious. However, she managed to address these issues and now feels stronger and better again.
Sarah believes that attitude affects the way in which people cope with illness. She is impressed how well her mum copes considering she has had MS for 31 years and also had a child in that time. Sarah is very proud of her family, who are all very close to one another. She feels lucky and wonders if her family would be as close, and if she would be as strong, if it wasn’t for her mum’s MS. Her message to others is that, although it is sometimes tough and hard work, caring is not as bleak as people often assume it is.
Sarah is currently studying health and social care at college and finds the material and the level of training easy because she has first-hand experience from an early age. Sarah describes carers as ‘unsung heroes’ and has become an advocate for young carers; starting a charity support group in their area. On reflection, she is surprised at the level of work and expertise that young carers are expected to achieve and feels there should be more support available. She feels frustrated with government policies which oversimplify and dismiss carers’ needs and make accessing support complicated. The work Sarah has done for carer advocacy and support has led her to be nominated for and win various awards, such as Humanitarian Citizen Award for the British Red Cross at age 13 and International Carer of the Year last year. Sarah will also be carrying the torch this summer for the London 2012 Olympics.
Sarah describes herself as a ‘fighter’ and explains how she is rarely fazed during caring because she has learnt to expect difficulties. Last year a combination of difficult circumstances made her feel a loss of identity and confidence. She experienced some depression and felt tired, panicked and anxious. However, she managed to address these issues and now feels stronger and better again.
Sarah believes that attitude affects the way in which people cope with illness. She is impressed how well her mum copes considering she has had MS for 31 years and also had a child in that time. Sarah is very proud of her family, who are all very close to one another. She feels lucky and wonders if her family would be as close, and if she would be as strong, if it wasn’t for her mum’s MS. Her message to others is that, although it is sometimes tough and hard work, caring is not as bleak as people often assume it is.
Ray’s wife was diagnosed with relapsing remitting MS in 1980, after some ‘minor’ episodes which had been treated with steroids. The progress of the illness was slow and it did not seem to have much impact for a number of years. They didn’t tell anyone about her condition at first, partly because they didn’t know much about it themselves. Eventually they researched and learned a lot about MS. Ray thinks it is important to talk about the illness because that gives you the chance to learn more about what to expect. Then you can have more control about how you manage.
Some of the relapses were severe. Ray recalls one time which they call ‘the dark weekend’ when his wife was completely paralysed and he thought she was going to die. She recovered for a couple of hours but relapsed again. Eventually Ray collected his thoughts enough to call a doctor, and remembered that a neurologist had told him to get her into hospital as quickly as possible in these circumstances. The doctor responded to this advice and Ray remembers learning from this experience that he could have a direct influence on getting the care his wife needed. This has been the way he has approached the illness ever since. Their daughter Sarah, now 17, has the same dynamic and positive attitude to caring.
Ray worked in a physically demanding job which, along with the tasks of caring, has taken its toll on his health. He is 57 now and has been retired from work on grounds of ill health for four years. He suffers from fibromyalgia, which sometimes severely limits what he can do. Ray keeps up a positive attitude to his changing circumstances and considers that, although, ‘we’ve had more than our fair share (of difficulty), others have had more.’
Ray’s message to other carers is: ‘Understand the illness and don’t work against it, work with it. You’ve got to look to the future and think, ‘What would empower us to get a better quality of life?.
Sarah, whose mother has had MS for the whole of Sarah’s life, thinks social networking websites are the best way to raise awareness about MS and to provide support to young carers.
Sarah, whose mother has had MS for the whole of Sarah’s life, thinks social networking websites are the best way to raise awareness about MS and to provide support to young carers.
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Sarah: Well, I’m, obviously I’m a, being 17 [laughs] I’ve got, I’ve got my laptop and I’m nearly always on it [laughs]. It’s I ...
Let’s just talk a bit about what you do and...
Sarah: I mean, having, I uploaded that video to YouTube about young carers, that’s one of the biggest things is well I mean, a lot of people seem to think that was a massive thing putting that video on YouTube but I, I mean, it’s not, it was just something, it’s like I thought when I was 12, I thought, “Well everyone used the Internet now, everyone uses YouTube, it’s an avenue that I can use to try and make a bit more awareness”. And it just worked basically. And it’s one of those things like I know that my young carers’ group the people that went into schools use that to show to the kids to try and conjure up. It’s only words, all of it’s just words, but I mean, it did conjure up an emotional response to people.
Ray: From something in the background, possibly...
Sarah: Yeah.
Ray:...in the background as well.
Sarah: It’s like 'Concrete Angels', something like that and it, and it’s, it does, it, it, it’s the only way that you’ll access people of my age directly. I know that obviously not a lot of us, there are some of us that aren’t on Facebook or any other social networking site but even things like, you know, the MS Society website, I go on Children’s Society and look at the, all the different young carers’ groups because I’m trying to think about creating a national identity for young carers. The researching MS, if you go on the Internet and you look at the MS website even Twitter have a load of the MS Society, they have the national, they have the one from the US, they have all the MS, even I created one locally, I’ve created a Facebook and Twitter page for our MS Society so that people can see what we’re doing. And it’s, I think the Internet for me, despite, you know, I’ve had a lot of bad will come over it, the, the avenue of accessing the people, like especially with MS quite a lot of the time they can’t necessarily go out a lot or they’re too fatigued to, and it’s that, that, extra way of being able to get into someone’s life and, you know, you’re not alone, look at this, look at, look at, you know, this site., You know, you can see the statistics for this. And I think being able to research it online is good.
Ray and his wife have detailed discussions with her doctors about the best treatment for her.
Ray and his wife have detailed discussions with her doctors about the best treatment for her.
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Sarah: Yeah.
Ray: It was really hard for the first few months for her to get it into her system, made her really ill. But we think that we’ve, we’re certainly seeing the benefits now. She’s not having as many relapses and it seems, as far as we know, there are new things coming almost on a yearly basis. New ideas and tablet form for this, tablet form for that. But we’ve gone into quite a bit of detail with the specialists and they say even they get a, like a tablet form of this they think because this works for her she’s probably better staying on this anyway. Because the other, the other form, mode might not work. But she has a, has a check up every 12 months and, and, and stuff like, so, the, the, you know, the people, they’re on the, they’re on the ball with it. But again we’re pretty, not pushy but we, we want to know because we can do something about it ourselves, i.e. change to a stair lift, change, diff, move, you’ve got to move each time with it and see how see how you cope with it and how you get on really.
Sarah believes that ‘family should look after each other.’ She enjoys looking after her mum and thinks that MS has made the family closer.
Sarah believes that ‘family should look after each other.’ She enjoys looking after her mum and thinks that MS has made the family closer.
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Sarah: He just kept saying, “Well we should have carers in. There should be carers in”. So I’m not being funny but I don’t want some carer to come bursting through the door, get mum up in the morning, not ask her, you know, because, and I know there’s a lot of good carers out there, I don’t mean to sort of stereotype them, it’s just the minority but that, there’s that threat of this carer coming in , shoving mum out of bed, shoving her in the shower. And, I don’t think my mum deserves that. Not after, you know, like she worked all of her life, she brought me up well. And she’s done so much for the MS, young carers, all this, and I don’t think she deserves to just by thrown aside like that. I want to look after my mum because I know how she wants to be looked after. When she wants certain things.
And no matter what, no one can give that kind of care where it’s actually meaningful. And I just, I just don’t think it’s appropriate that David Cameron should be saying, “Oh, well we’ll just get carers in. Why aren’t carers coming in?” I said, “Well we couldn’t have them anyway because we’ve got savings”. Nothing substantial but those, that small pot of savings, it expels you from everything.
And it’s like, so I’m not going to pay for care that I could be giving for free with more meaning that actually matters more to my mum and to my family. So I believe family should look after each other. But it just, it’s still, at the end of the day, it still stumps me from going to university, from moving away, in my book. I know that mum and dad would say, “Go”. You know [chuckles]. It there’s, you know, mum and dad will be fine by themselves, might, but it’s just not the way that I want things to be because you know with MS eventually things may not be as pretty. They might stay the same for the rest of her life, you never know. They might get a lot worse very quickly.
Ray: Hmm.
Sarah: They might take ages. You just don’t know with MS. But it’s the kind of thing where I’m just not, I’m not willing to spend money on that kind of care when I could be doing it myself. But it does stop me from, sometimes attaining your goals. Not just me, but others obviously. But you know, it’s like if I ever wanted to go to university, thankfully I don’t anyway [chuckles] there’d be no hope because I’d want to stay here. And there was like, I was looking at universities and things like Nottingham and things like that, they’re not close by. They’re not the kind of, you know, I can’t commute. And it’s just, it’s frustrating how even a carer like David Cameron can just dismiss it completely like that. When you know, and it’s like, obviously being a carer you’ve got limited funds as well. Because, you know, like dad said, you lose a full-time wage, you go onto a pension or whatever. Mum’s on a pension, isn’t she? From retiring due to ill-health early.
Ray: Yeah, we’ve both got pensions. Small pensions.
Sarah: No choice, there’s no choice in it. Dad’s health, He could not physically work, I know he couldn’t for a fact. Mum couldn’t physically work. She struggles to do what she does now charity-wise. And it’s, I just think that people can be do dismissive over what you do and why you do it. And it’s just, it’s, that’s the thing that gets to me because I am happy to look after mum. I enjoy it a lot of the time. And me and my mum have never fallen out once in our lives. And I’m sure that’s why. Even, even, you know, I know everybody falls out and everyone says, “Oh, you know, everyone, you know, you’ve got to fall out with your parents when you’re a teenager. Everyone does”. But I just don’t. It’s created a better relationship between all of us as a family.
Sarah thinks being optimistic makes life less of a struggle and that people shouldn’t think of MS as a ‘death sentence.’
Sarah thinks being optimistic makes life less of a struggle and that people shouldn’t think of MS as a ‘death sentence.’
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Ray: Hmm.
Sarah: They seem to think that, “Oh, I’ve got MS, that’s it. Give up. No point. I, you know, five years time I’m going to bed-ridden, can’t feed myself”, this that and the other. Because they’ve seen the worst in people a lot of the time. But it, it is, it’s not, it’s not like that. The majority of the time, like I know people that have had it for as long as mum, and the same, better, worse conditions, it doesn’t matter how long you’ve had it, it’s just basically luck whether, and, and optimism as well. Looking at the positives because if you’re negative of course you’re going to struggle more. Because you’re going to say, “Oh I can’t do that”, so you’re not going to try. Whereas if you’re optimistic and you do try I might say, “oh well, that failed but I know I can do this so that doesn’t matter”. Like mum with the stair lift, you know, it’s, I have to have a stair lift now because I’m getting exhausted doing the stairs but on the other hand I can still do them, just not all the time.
Ray thinks that being close friends is one thing that has kept him and his wife together.
Ray thinks that being close friends is one thing that has kept him and his wife together.
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Ray: I think that ultimately, as we’ve discussed before like, we, if we weren’t married we’d be friends anyway.
Sarah: Yeah.
Ray: And because, I don’t know, you just, something just, something just clicks. And you just get on. And we just, we’re always looking out for each other all the time. Whether it be if you’re coming home, oh I’d better, make a sandwich, so you’ve got a sandwich, or whatever. It’s you know I’ve got to go to town get your tickets because I’m going to the football and thing, you, you know, and so, we look at all, we all look out for each other and always have done all our married life, I think. And Sarah’s just sort of slipped into that pigeonhole, shall we say? And I think Sarah is exactly the same as us. It’s like when, with my late father, my late father was my best friend as well. And he was my brother.. and my other brother’s best friend as well [laughs]. You know, they, it’s not unique or anything like that. And, that’s just the way we are as a family I suppose. And it’s nice that it is.
Ray tends to notice in the Spring that his wife’s symptoms have progressed. Sometimes there hasn’t been as much change as he expected.
Ray tends to notice in the Spring that his wife’s symptoms have progressed. Sometimes there hasn’t been as much change as he expected.
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So that’s always a, the spring is always our point of reference as regards not only the weather picking up but where the wife is from there.
Are you apprehensive about the spring coming then? Do you...
Ray: It...
... expect that things are going to be worse?
Ray: I, yes and no.
Sarah: [laughs]
Ray: It because as, it’s such a minute change sometimes you think, “Oh well, it’s, that’s not too bad, or she might be having a really good day”. So you combat it, so, it, you know, we’ve, it, it certainly is a focal point for us without a doubt. And I would think the wife obviously herself can is concerned about it but by the same token, if it’s not quite so bad when you go out that’s bonus, you know, “Oh well, I ,might have slipped back a little bit but not a massive amount”, so in effect the illness is actually perhaps not, get, got such a grip...
Sarah: Hmm.
Ray: ... now as it had last year. I know, it, I know you get, things get progressively worse but if it slows down that gives you a bit of momentum to go, “Well, you know, perhaps next it might even be the same”. So it’s, it, the illness, it really is an individual illness and no two with it are the same.
Sarah wasn’t keen on having a stair-lift in the house at first. She talks about how the whole family has to adapt to having mobility aids and other equipment.
Sarah wasn’t keen on having a stair-lift in the house at first. She talks about how the whole family has to adapt to having mobility aids and other equipment.
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Ray: Oh, it’s not long ago...
Sarah: And it’s one of them things where all these different mobility aids, walking sticks, wheelchairs, scooter, whatever level it be on, even things like getting a wet room and rails and things it, you’ve got to, well not just, not just mum but the whole family have got to adapt and you’ve got ...
Ray: Yeah.
Sarah: ... you’ve got to like, like I wasn’t big on having the stair lift was I? I said, “Oh it looks like an old person’s home”. But it, but I’ve never been like that with it, but I think as I’ve got older I’ve become more aware that each one of these items that you install is because mum can’t do something anymore, and as good as she was before but as soon as you see how much energy she’s got because she doesn’t have to go up the stairs, but she’ll still go up, walk up the stairs and come back down and, you know, after having MS for 31 years and having a kid and, you know, changing from a relapse and remit to secondary progressive you’d think it’s not bad going really. But it’s like everyone has to adapt mentally to the way that things are in the house, the way that, I remember when mum first got a scooter, I’m sure I remember that day when we went to that shop and she was trying that scooter so, I thought it was brilliant, awesome.
Ray: You were the age and then...
Sarah: I was six or seven wasn’t I?
Ray: Yeah, but that was a toy.
Sarah: Yeah.
Ray: It was a great machine. But, but over the years even the handrails around the house that, that we’ve put up, they’re all disguised so that, they’re not, shall we say disguised, they’re made to fit in with the property so it doesn’t look as though it’s someone that needs it. The handrails all around the stairs and everything like that, like they’re nice and wide and in fact I think that they’re an aid for able-bodied people as well sometimes, you know, it’s just so with all the handrails, bit by bit we’ve added some to the house each, every twelve months or so.
Ray’s wife was ‘really reluctant,’ to use a wheelchair or scooter. Now she finds that she is less fatigued when she uses an electric scooter.
Ray’s wife was ‘really reluctant,’ to use a wheelchair or scooter. Now she finds that she is less fatigued when she uses an electric scooter.
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Sarah: [chuckles]
Ray: [chuckles] and your mum went back to work part-time but again the fatigue and everything kicked back in and she really struggled. So I suggested that maybe we ought to take the next step and get a wheelchair and stuff like that to go, when we go out and about shopping and things like that, which again your mum was really reluctant to do. And just by chance one day we were actually going to do some shopping up at, up at one of the local supermarkets and by, there was a motobility, mobility shop with scooters and walking stick and all this sort of thing so I said to your mum, I said, “Let’s just go in and have a look...”
Sarah: {laughs]
Ray: “... and see what we think”. So we went into this shop and spoke to the lady, said what we was thinking and there was a scooter there, a little green scooter and so the, it was like a shopping precinct so the lady said, “Just get on the scooter,” she said, “go round the shop and see what you think”. So your mum did and that was it, “I’m having that" she said. She realised the benefits of using... these aids are there to help you and to, and to help combat your fatigue. And stuff like that. So by using an, an electric scooter that give your mum more time to be able to do other things, you know, or more energy and stuff like that.
Ray and his family know the local MS nurses well and are confident that they will be supported. He knows that it is not like this everywhere.
Ray and his family know the local MS nurses well and are confident that they will be supported. He knows that it is not like this everywhere.
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But I wouldn’t say that that is typical all over this country. In fact, I would say far from it. From the people I’ve met, some haven’t even got MS nurses. In fact, we never actually had, we used to go to the local hospital here, we have to go 12 mile away to see a neurologist now because they never had one up here. He retired and he was never replaced. I believe now that someone has actually taken up the post. But for three years we’ve been travelling, we live almost next to a hospital for, for, for the reason that, that, that it was handy for us but we still have to travel now 15-20 mile to another hospital which I don’t like much really [laughs].
Sarah has been a young carers representative since she was 10 years old. ‘I’ve always been very articulate in the way I speak for MS and young carers’, she says, ‘so I think people picked up on that.’
Sarah has been a young carers representative since she was 10 years old. ‘I’ve always been very articulate in the way I speak for MS and young carers’, she says, ‘so I think people picked up on that.’
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Sarah: Yeah. Well, I’ve been going to young carers’ group, it’s, since it started about 10 years now, isn’t it? I was the first to go to, it’s a British Red Cross young carers’ group locally. And I mean, through that and through the MS Society basically because I was the young carers representative on the local MS Society as well, when I was 10. I was the youngest in the UK I think, wasn’t I?
Ray: Yeah.
Sarah: Well, I still am, as far as I know.
Ray: Yeah.
Sarah: Youngest committee ...
Ray: Yeah.
Sarah: ...member they’ve had. I’ve always been vocal, I’ve always been very articulate in the way I speak for MS and young carers so I think people picked up on that. I was on the Young Carers’ Forum which was where we created ideas obviously for what we could do as young carers for activities, away trips. What maybe personally we needed. Like whether we thought some of us may have needed counselling. Not just us, but I mean, all the young carers went to the group, whether some of them may have needed counselling or even people to go into the home to help them. All, all different aspects, fundraising, everything. And with the MS Society again, I was sort of the go to, and still am really, the go to young carer locally if there is anyone that thinks they may be a young carer, or, a newly diagnosed person with children. And all these different aspects. And through that, well I got nominated for an award, didn’t I?
Ray: Hmm.
Sarah: When I was twelve, 13, 13, [laughs] And I, it was Humanitarian Citizen Award for the British Red Cross. It was they nominated quite a few of us from our group but we went down and were on a boat on the Thames at the ceremony and it was the first sort of award thing that I’d ever been to. I’ve never won anything in me life [laughs] And I was I was stood next to a lad with Down Syndrome who saved his dad’s life with first aid and CPR and things like this. I also stood next to the girl that, we were all from [county] ironically. There was people from like the very north of Scotland, and people from Northern Ireland and things like this and yet it was all three of us from [county] that that had been shortlisted. And there was a girl whose mum, I can’t remember what she had now, she’s passed away now, but her mum was really ill and she was helping look after her brother and sister as well as her mum. She was a bit older than me, wasn’t she...
Ray: Hm.
Sarah:... she was probably my age, she was probably about 17, 18. And so I won this award [laughs] and I, it was the most shocking moment of my life wasn’t it. I had no idea what I’d done, I had no idea why I’d won it. But they just they decided that with the charity stuff I’d done, looking after mum and things like this, that I deserved it. But I just, I still to this day will never understand that.
Sarah thinks that caring for her mum has given her a different outlook on life and that you can get a lot more out of caring than you have to give.
Sarah thinks that caring for her mum has given her a different outlook on life and that you can get a lot more out of caring than you have to give.
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And I just, I wouldn’t change it for anything, I really wouldn’t. I genuinely mean that. Like a lot of people say, “Oh of course you would”, you know, “you wouldn’t say that with your mum or ...” But, no, it’s made me a better person. I’m sure it has. It’s made me, mum and dad closer. And it’s meant the friendships that I’ve developed are more meaningful. It’s meant that the career path I’ve gone down is more substantial. Like I wouldn’t have had any idea otherwise, I’m sure I wouldn’t. And it just, it’s just given me a completely different outlook on life to what I think I would have had. So I certainly think that you get a lot more out of it than you necessarily have to give.
Ray recalls that the visiting nurse told his wife she was having steroids for MS. When the nurse realised his wife had never been told it was MS, she said she had mixed her up with a neighbour.
Ray recalls that the visiting nurse told his wife she was having steroids for MS. When the nurse realised his wife had never been told it was MS, she said she had mixed her up with a neighbour.
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But we still didn’t know at this point your mum had got MS until a nurse come and give the wife injections and the one day she said about, oh she said, “I’ve come to give you your injection about MS,” and, [name] she said, “What, what do you mean, MS?” And the nurse realised she’s made a mistake, there was someone that lived four doors away from us who was tall and blond, almost a mimic of your mum, but she know she’d got MS and she was injecting the both of them at the same time...
So, anyway, “No, no it’s not MS”. So she, she went away and, and eventually it, as I say, your mum was diagnosed with it and when she, they start, put her on these steroids she was really, really burned out and, and in the early stages, we’d only been married sort of two years then and the fatigue was, was so great that she was managing to work but when she come home from work she was off to bed at eight, eight o’clock at night and sleeping right till time for work again. But, so it was work, sleep, work, sleep all the time.
Ray thinks people need to be prepared for the possibility of having MS diagnosed.
Ray thinks people need to be prepared for the possibility of having MS diagnosed.
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But I think since, since, since the wife has been diagnosed I think doctors and neurologists are more up front with the situation because I, as I said before, the wife was nearly two years. Some people are four years before they’ve actually had their diagnosis and they think they’re going mad. You know, they think it’s all in the mind. It’s something else, it’s something they’re eating. So I think that, you, the diagnosis needs to be quick so that the people can take charge of their life again. And I think that slowly, certainly in our county, I think that that is happening, that the doctors and the nurses are a bit more up front.
Ray and his wife decided that keeping the diagnosis to themselves was, ‘living a lie.’ Telling others felt like ‘a positive step’.
Ray and his wife decided that keeping the diagnosis to themselves was, ‘living a lie.’ Telling others felt like ‘a positive step’.
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Sarah: [Laughs]
Ray: It brings it home to them. And then they realise why you’re saying, “Well, I’m, I can’t go to this party, I can’t go to that”.
Sarah: Hmm.
Ray: “Do you want to come to this house?” “We can’t because the toilet’s three storeys up, the wife can’t get up three storeys” and things like that.