I wonder if you could say a bit about the impact on your family as a whole?

So often we have to plan what we do and how we do it around what my wife can manage. The kids are very good. They are aware that that mum isn’t capable of doing things. They see it every day, obviously, but, at the same time, they give emotional support. They’re very, very good at that, through necessity really because for all her wish to get on as normal and appear normal to everybody else as much as she can, within our family unit of course, you see somebody when they’re at their worst. You see them when they can barely get from the bedroom to the bathroom and… they’ve seen my wife when shes had a bad fall. And they know what to do. They know to help they should ring me as well if I’m not there.

But… I think, if suddenly my wife didn’t have MS tomorrow, I think it’d be a shock to us how much we now have to plan round… what we do and where we go and how we do it and how much time things are going to take as well. So, if my wife was cured tomorrow we would suddenly realise, I think, how much we do without even thinking about it. Little things like bringing full plates of, dinner plates in from the kitchen to the table for us to eat and helping my wife move around.

Shared housework, my daughter particularly is fantastic at both finding things that she needs to do and from vacuuming to cooking to anything like that. I guess with them being young, as well, they just adapt to it. It’s only when they compare their mum to other mums and realise that their mum can’t do the same things that they probably notice it more but you just manage. You just get on with it. I think that’s the main thing. As a family you, I mean were blessed because we have got a close family unit. I wouldn’t like to think what it’s like for somebody who hasn’t but right from the very basic level of just looking out for her, making sure that things aren’t in the way for her to trip over because she can’t lift her left leg very high to making sure that the toilet seat is down [laughs].

Could you just talk a little bit more about the importance of family? You’ve mentioned that a number of times. Just reflect on that a bit more?

Well, family have been there right from the start and all grown with it. He, my son’s had the illness 25 years now and so, and my daughter was a teenager. Two were teenagers and two were married. I’ve got four children altogether and they have they’ve all been inWere very close because we all live here in the same town so they’ve had a bearing on how weve dealt with my son’s illness.

I don’t know whether I’m mistaken or not, but I feel in a way one member of my family has probably felt on the outside looking in, maybe he… felt a little bit neglected may be. I don’t know. He was already married at the time of my son’s diagnosis and he hasn’t played an active, hes there and he would be there to listen and support, but hes not had a very active role. And I just wonder if that’s because hes felt a little bit neglected because weve focussed on one member of our family who was ill and who needed attention and has needed more attention from time to time. But that, maybe I’m reading the wrong signs. I don’t know, but I’ve felt that at times.

But no, were close. We see each other regularly. We meet for a coffee anyway, every Saturday, all of us. In fact Marks and Spencers are moving to Leeds Road and I’m wondering if it’s because of us [laughs]. But no, we meet regularly for coffee so Were a close family. That’s apart from other things, and we go out for meals. We were out for a meal last night. So I feel were there for, for my son and six grandchildren are all happily involved with the family and are aware of [name] problems too.

So yes, I mean, when [name] was first diagnosed, grandparents were still around. Didn’t know what MS was, and very shocked, very frightened and felt inadequate. I remember my Father was very sorry. But just very sad because they didn’t know more about it and although they were there for us all, they felt their lack of knowledge. And you sort of tried to protect them in a way and not tell them too much or what could be down the line, although no one was to know. We didn’t know how the illness would progress. So there was no point in frightening them or talking too much about it, but they too played their part in supporting me and the other children really. So, yes, I feel were a close family.

We have our moments when we argue and because hes so stubborn [laughs] we could strangle him at times, but I think his stubbornness has made him independent and kept him independent. Yes, hes a great member of our family.

It’s probably brought us closer together I suppose because it’s obviously a common factor I suppose that it’s a, it’s a concern for everyone in the family about my brother’s welfare. So but it obviously affects different people different ways and dad’s quite emotional. He probably sort of took it hardest whereas and he still gets sort of upset about it I suppose but then my mum’s more was more rational about it and just wanted to know everything about it and what could be done and how she could sort of help him I suppose. But also I think weve got a good sort of strong family unit anyway, so I think that helps. So hes got quite a good support network anyway with the family and then also his friends as well. So but yeah, I was trying will try and sort of help as much as possible and if he needs help but.

Do you talk about it to each other? You all live together at the moment and do you talk about it?

Yeah, I’m back home at the moment so yeah, well have a chat about it and sort of about how hes getting on and stuff and but a lot of the time it’ll be part of the conversation with other general stuff that that’s going on in his life. It’s not it’s not really like a dominating factor. It’s always sort of there so we might chat about his treatment but it’ll be in the same conversation about what hes doing with his art or anything else that that’s happened at that time I suppose. Yeah, I suppose the most difficult thing is not being able to visit as much as much as wed like but.

Do you ever imagine what it would be like if he was down the road or even in the same town?

Yeah, I mean it’d be good, it would be nice to see him more and spend more time with him but when hes down sort of see each other and spend time together. But yeah, I suppose it’s, it’s sort of thinking what it might be like if he hadn’t of had the disease and what hed have been able to do that he sort of can’t do now but I suppose you can’t really think about that. You’ve just sort of get got to get on with it and sort of how it is I suppose. But I think were sort of relatively happy with the way things are I suppose and it’s good to sort of speak to him regularly and sort of see him every few months.

And I worry about the children’s future because it has affected them a little bit in a way. Sometimes they don’t want to help and are being rude to their mother. It’s not because they are rude people, it’s because of the situation, they can’t cope with it. I cope with it because I’m more, I’m more, I’ve been through it many years. They’re only just about starting to understand the difficulties of having a disabled parent and what it involves, what the demands of a disabled parent are. And you don’t expect somebody, like I have for instance, my daughter was going to university, to make her do things like that for my wife, shes got her studies to do, I don’t want, personally I don’t want to distract her from her studies. I want her to have a, to concentrate on her studies, finish university and get on with her life. They do help, but not at, at the pace that my wife demands or she is asking. It’s difficult for them to, to comprehend what I’m going through and to understand that it’s very difficult for me. And I don’t expect them to understand, I don’t expect anybody else to understand unless you live with the problem yourself.

And, as I was saying, that my relationship with my dad hasn’t always been the best, very distant. He was out most of the time. Even after his diagnosis he used to still work in a pub and we used to go to school he used to be in bed, we used to come home from school hed be at work, hed come home from work, wed be in bed. And that was a vicious circle and we used to just get to see him maybe on a Saturday or a Sunday. So, I didn’t have the best relationship.

But then the doctors, he, he could see his health deteriorate over the years and became more prevalent when I was in my teens and I started to notice the decline. The relationship got worse between me and my dad because he was grumpy so to speak, moods, you know, and he just, he seemed to be annoyed all the time. So when we want to ask him questions you wouldn’t really get an answer you would get sort of ooohhhh.

So the relationship between me and my dad got worse. And the thing for me is that I was born into a house with four children. I had one sister and three brothers so we had kind of a big family back then but as time goes on family members move on and they become married or have their own family and they separate and go off and do their own things. So, as a teenager dealing with my dad bearing in mind that my elder brothers kind of like one of my brothers ended up meeting somebody, having a kid, my sister went away got married and she had two kids, my other two brothers moved down south so basically it was left with me to kind of like deal with my dad. Then I had a younger brother who between me and him I kind of like became his dad, yes, because theres a seven year gap so you can imagine me looking after him as a young un.

It stopped all relationship between our parents. They were very separate. They… they didn’t talk to each other. I got the impression that they didn’t love each other anymore. I mean, whether they did before, I don’t know [laughs]. But then I, you know, I got the impression there was no closeness, really. I mean, our dad was a really good carer in that he, when she was in hospital he went to visit her every single day. But he worked long hours, he had to do two jobs because she wasn’t working and so bringing up, you know, three daughters and, him and our mum and he wasn’t well paid. He had a very poorly paid job and so he had, two jobs to help with that.

So, he was shattered when he came in and all, hed come in and hed sit down in the chair and fall asleep [laughs]. And then hed cook the meals and clean and stuff. I mean we helped, I helped but [sighs] yeah, I felt our parents didn’t really talk to each other at all about things and certainly with that. And the house was very, very quiet. You know, there wasn’t sort of laughter going on and there wasn’t chat going on. It was all like everyone in their own little worlds in a way and I never thought of it like that but, yeah, it was. It was like that. So I think it had a huge impact on their relationship.

And did you reflect on that at the time?

I suppose I mean it did strike me that they didn’t talk to each other and that they weren’t close with each other, yeah I, that did affect me at the time and I did think about that I think it was more that I was thinking of myself really probably and how they didn’t react to us and talk to us about things. So at the time, no, I didn’t really think too much about them, together. It was just that it was, it felt like a very unloving, unloving family, which sounds awful I feel guilty saying that now because they did work very hard for us and they did, you know, try hard. But that emotional support wasn’t there or emotional, not support but, you know, it wasn’t support, emotional feeling wasn’t there with any of us. Between ourselves, everyone was very isolated, yeah.

But, yeah, I felt very alone because you norm, you expect you expect your parents there to sort of be guiding you. And I can remember another memory that really sticks in mind was when I got my GCSE results I went with my friends to the school and everyone was all excited and those who failed were sort of saying, Oh you know, my parents are going to kill me, kind of thing. And I went home and put mine in a drawer and nobody even knew that I’d got my results and no-one ever asked what my results were.

So theres quite prominent sort of memories like that where I think, you know, your family should be supporting you and nurturing you and that support wasn’t there. And there was no support from anybody sort of saying, you know, no, even within the school itself, within even my friends, you know, there was no, nowhere, no network that would pick up what was sort of happening. And I don’t think I could have even articulated what, it was my experience from quite a young age that it had almost become the norm. So although I would get really upset and I would and I knew it was an unhappy experience I’m not sure that I would have known to, you know, it was kind of almost what I knew.

So I guess I always felt that I had to, and this is, you know, something that I still do now, is I guess I always felt that I had to put a brave face on and be strong and that was my, that’s what I learnt was I had to be strong. I was the strong one. You know, I kept the family together and it, albeit that my father and my sister were almost dropping in and dropping out because my father didn’t, my step-dad, didn’t spend a lot of time at home, Even at the weekends he would go off and, you know, sometimes just not be there. And it got to the point where he was staying out overnight and clearly he had found someone else. So again I had that to sort of deal with. And, to try and act as a buffer for my mum that, you know, to try and protect her from some of that, that sort of thing.

So I felt an incredible you know I was just completely relied on, I was completely the one that sort of kept everything together and I kept mum going. And sometimes I think that was manipulated and abused a little bit. And I think my sister just assumed you’ll get on and do it and had no concept of just what I was going through really. And we talk about that now. And my step-dad I think he used it as a, to manipulate kind of, you know, I can remember things like yeah, I must have been a bit older, I’d got my first boyfriend, so probably about 18, 19, my first sort of really serious boyfriend. And I can remember you know, him having a conversation with my mum saying, Shes going out, shes leaving you again, she doesn’t love you, what sort of daughter is she? And there was quite a lot of that sort of went on because I think he wanted me to be around, he wanted me to be there because it stopped him from sort of picking up on some of that.

It’s quite difficult being the person responsible for their sibling in, in terms of making sure their well-being is catered for. I suppose it’s become a lot more in my world since he moved back home f-, after he moved back home with my parents. Then things became a lot more real, because then it was clear that he was quite disabled and, you know, the family life changed dramatically. My parents were both getting on. And having to have their son come and live with them and for their son to need their support all the time, that was quite difficult, to see the toll it was taking. I mean I know that they wouldn’t have even dreamed of him living anywhere else but, you know, that was quite difficult.

My mum died in August 2006, which was just over a year after my brother moved back home. Shed had cancer on and off for twenty years. But I think, I don’t know, I’m not a medical professional, but obviously the worry and the stress and the strain of looking after my brother and then the worry about what might happen to my brother when she could no longer look after him in some ways I feel exacerbated her illness and made her decline maybe a bit more rapidly than she might have.

She was only in her early 60s when she died. Shed been fairly active and, you know, had a very fulfilling life. But the sort of, es-, I suppose the, the last few years of like worrying about her son with his illness and especially the last year or so of taking care of him must have had an impact on her health. And again as my mother declined, my father was running between my mother and my brother making sure both of them had all the support that they could have. Which was quite difficult. And my mother was often the referee in the constant difficulties between my brother and my father sometimes falling out over silly things and my mum trying to keep the peace and tell them to not be so nasty to each other or be s-, having arguments with each other all the time.

I think my brother, my brother’s, once my, after my father lost my mother I think, you know, he was totally devastated. They, you know, were married for forty years , nearly, and hardly ever a cross word. It was a pretty normal family life. My, my parents both sort of m-, their lives revolved around their children and making sure that we had support and got educated etc. After he lost my mother I think my father kind of lost the will, but I think he carried on for the sake of looking after my brother because I know that for mum’s sake he would have looked after him. And he did look after my brother for as long as he was physically able to, even though he suffered with arthritis and constant pain in his arms and legs, struggled on. How he used to hoist my brother off the bed single-handedly, I don’t know. I’ve done it a few times and it’s hard. Even with somebody else helping you, it’s a hard thing to have to do. But for a man in his mid 70s with ailing health, he just got on with it. And I think you do. You, you just get on with it.

But, and I think also worrying about my brother and what might happen to my brother also meant that my father didn’t have treatment that he maybe should have had. He was diagnosed with prostate cancer in the March before he died less than a year later. They wanted him to go into hospital and have some treatment. He mentioned it to me. I said, That’s fine. When you need to go I will come, I’ll take time off. You go, you do what you need to. He then got the doctor to just give him some tablets. Everyone kind of says that prostate cancer is one of those ones that’s quite treatable, and after my father died they said, you know, It’s quite rare for somebody to be diagnosed and die in less than a year. But again I, I wonder whether having, the sort of the caring for my brother and the worry about everything around that again may have contributed to my father dying maybe a little bit earlier than he might have if hed been having a comfortable retirement with no stresses and strains of caring for a disabled son. That’s, you know, things that you think about.

My sister realises now that I did so much more than actually perhaps she realised at the time. It wasn’t very straight forward because my sister, at the age of 21, had a baby with hydrocephalus and he was very ill so she was somebody without a mother really who didn’t have a very close relationship with her father. She was young and with a very severely handicapped child who actually died last April so she had her own things that she was worrying about. And she, she suffered you know, a lot of, of illness as a result of that really. So the conversations that weve had are, she felt that she had just nobody as well so she felt isolation. I felt that I was the only person sort of managing all of this. But I guess the common ground is the isolation really, is that we both knew what it, what it was. I mean, it would destroy some families actually And there were periods of time where my sister wouldn’t see my mum for sort of six, seven weeks at a time.

Now that, that was a lot because what that meant to me was mum’s seeing someone today that means I can do X or, or Y. And but we have talked about it and we, you know, weve worked through that but I would say that, you know, that was another thing that I felt resentful to initially.

I remember when I found out about that. My mother called me at work to tell me the news. She was very upset because she had a cousin who’d died of MS when he was 28 years old. So she immediately thought of the worst-case scenario. I was obviously upset but didn’t really understand what MS was, what it could mean, and how it might affect my brother and my family as well. Fortunately a member of my work had got some research for me and, and found out a little bit more, got some information from the Internet so I could read about it.

And then the next time I went up to the Midlands we, we talked about it a little bit, but in that kind of way that families do sometimes, you don’t talk about all, all the detail. And, and because my brother to most intents and purposes seemed quite, quite fine, still his happy, cheeky self, it seemed like, Is it, is it really something that’s that bad? So I think heads, head in the sand was probably the situation with our family for some time. I think my mother didn’t really talk about the things that shed seen with her cousin, so I wasn’t really thinking that it could be such a terrible, terrible thing to have.

Shes obviously very, very nervous about the future in terms of shes a very family orientated young woman shes getting married in June, which were all thrilled about, and I’m pretty certain that shell want to start a family if they can and shes worried about how her MS might impact on that. And when we have talked a little bit about that with the MS nurse I think it’s been a little bit about, Oh, let’s not worry about that yet. But actually it’s really important to [name] to know what might happen and, you know, should she delay putting a family or should she have a family when shes fairly young. So I think that, once we get over the wedding, I think that might be something that she and her fiancé might talk to the MS nurse about and just sort of get some opinions on that.

I think that MS has a massive effect on the family at large. It’s not just the person who has the condition. And I think this was particularly so when you have a young family. Typically, that is the stage of life that people are going through as they receive their diagnosis. So information about peoples experiences on what and when they shared the facts with their children, how they did that, was very useful.

Personally, weve always found being completely honest and upfront with our children has been the way to go. Just to drip-feed them the amount of detail that they need at the time. You know, starting from, Oh, Daddy’s brain doesn’t talk completely properly with the rest of his body you know, very simple, through to my older daughter when she got to sixth form was thinking that she would write an extended paper on MS, because it was something that she really felt she wanted to dig down deep about, find out more.

So it’s something that they’ve grown up with. And, and they’ve seen the plusses and the minuses, and hopefully have become tolerant of other people who struggle with other diseases and, you know, who, who might have circumstances that impact them more than theirs do. But they’ve also learned that, you know, we are not a normal family. You have to admit that. And, and often you, the human nature is amazing, you adapt and you create your own normal. You really do. And it’s only when you step out of that, out of your normal routine, out of your normal environment that you suddenly realise how different your normal is.

Typically that would happen to us when we went on holiday, especially if we were on holiday with a group, you know, meeting family from abroad or something like that. You suddenly realise that things that to us are completely second nature and normal are absolutely foreign to most peoples experience. It wouldn’t matter to most people whether the restaurant that you were going to had steps in it. But to us it would make the difference whether we went or we didn’t. Or, that we would book a table at the back of the restaurant rather than overlooking the beach, just so that we didn’t have to avoid the steps. You know, it matters whether the, the toilets are on the same level as the tables in the restaurant or whether you have to get up and down a flight of stairs to get there. And most people don’t have to think like that at all.

Ray: Sarah and myself were lucky enough to go down to 10 Downing Street to interview David Cameron with regards young carers. It was a thing that was run by the BBC. It was a young carers’, they had young carers from all sorts of walks of life and basically when Sarah was talking to him about perhaps going to university, you know, I, wheres, wheres the money going to come from? And basically David Cameron was sort of, well the council would be foolish if they’re not backing these people up. But…

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 theres a lot of good carers out there, I don’t mean to sort of stereotype them, it’s just the minority but that, theres 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 shes 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 well just get carers in. Why aren’t carers coming in? I said, Well we couldn’t have them anyway because weve 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 theres, 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] thered 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, weve both got pensions. Small pensions.

Sarah: No choice, theres 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.