But personally it sort of, it’s a bit odd, I must say, it does seem very odd, because obviously I’ve had a very active partner. I’ve known Sandra for oh 30 years, 30 odd years, weve been married 29. We have a pearl wedding next, next April. So I’ve known Sandra for a very long time. So I know her inside out and I know, you know, what she likes and what she doesn’t like. So we can, we can work on, sort of doing things together, and keeping together, I think sort of not It’s the aspect of what’s the right word? I can’t think of the right word at the moment. But it’s keeping our relationship alive and kicking. Were not just become a carer and someone who’s sick. Were doing all the things that we should be doing as people that work, so the illness, even though it has a greater and greater impact on Sandra, I actually think that were coping with it.

But it’s a way off, all these things are a bit of a way off, they’re not going to be, it’s not tomorrow, it’s in the future, and I never thought in five years time I’d be saying these sort of things to be honest. It’s just that I’ve often described it as though sometimes Sandra’s building a brick wall with her illness between me and her, and what I have do is smash it down occasionally, push it over. It’s like someone building with a sandcastle and you have to push it over to try and get back together again, because if you don’t, you end up, I think, leading very sort of separate, sort of lives, and I don’t think you have to. I think you can actually lead, it’s difficult, but you have to do it lead really a very sort of active and it will all be worthwhile doing it.

So, what do you think has kept your relationship together?

Ray: I think that ultimately, as weve discussed before like, we, if we weren’t married wed 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, were 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.

Being together makes me very happy and focusing on doing what we can do when Jennifer is well enough. Doing things together, the fact that weve just got married, we had a wonderful honeymoon you know . As Jenny knows I’m, you know, I’m here for the long haul; I’m not going to go anywhere. And we will, as I say, I tell, I base my happiness on the fact that I’m actually with Jennifer and I will be with Jennifer for the duration . That makes me happy. I, obviously, it’s very hard when Jennifer’s laid up in bed and theres little or nothing that I can actually do to help. But I console myself with the fact that I’m actually here and I will help in any way that I can. I think I know Jennifer will probably tell you that, you know, me actually being here is a comfort for her.

I was just thinking about what you said about being in this relationship for the duration. I’ve spoken to quite a lot of partners and they’ve more or less all said a similar thing to me. Many of them have also talked about knowing other people whose relationships have dissolved as a result of MS.

[Um, um]

And I wondered if you could just talk a bit about where that motivation is coming from for you to stay in it for the duration?

Well the motivation for actually staying, staying in it for the duration is the fact that I love Jenny to bits and to me the fact that she has an illness doesn’t make a jot of difference at all. I mean, yeah, okay, I can understand where some people would be in a relationship and find that they couldn’t actually cope with it. As far as I’m concerned, what drives me is the fact that I love, I love Jenny with all my heart and you know if this is the way it is then this is the way it is. We deal with it as best as we can.

I knew absolutely nothing about MS. I’m not sure if I even knew the difference between MS, motor neurone disease and muscular dystrophy. I knew nothing. I knew a little bit about Motor Neurone Disease because the landlord of the flat next to me actually got it and he and his wife were great friends of ours, so Charles and I lived with them through the very traumatic, because it was a very quick one but no, nothing. So of course, I went completely blithely into this thinking, Right, you know, [laughs] I’ve dealt with royals and I’ve deal with heads of industry. I can deal with this. I can sort this out. Therell be a cure. Because, of course, they always say that, They’ll be a cure. Next fifteen years, People say, They’ll be a cure. So you have that, from that you have to be completely very, well I was very optimistic about it. I thought this is something that I can handle. I, you know, he was a pretty wonderful man because hes got a brain the size of a planet and to me, is very attractive. So I thought that I could handle it and, quite honestly, I was thinking about this the other day because I thought, I’m going to tell Nic because if I knew then what was going to happen, I don’t think I’d have changed anything at all. It’s, you know, just one of those things, love, yes, so, yeah. You know, we have a very good life here.

I actually went to the MS Society, to find out about the MS. The brain tumour side I actually looked up on the Internet at the time because my husband’s a computer analyst so it helped having the Internet at the time. And basically looked both of them up whereas my husband or my, to be husband at that time didn’t want to know. He was sort of blanking it out. He didn’t want to know anything about what was going on at the time, whereas I’m more of a practical person, I will actually go ahead and I will find out about things. So I knew what to expect within the MS, I knew what to expect if it was a brain tumour. I knew what the life span was with both of them. It gave me just a little bit of hope with both of them and it made it very, very much more easier for me to cope with. [Name] didn’t want to know at the time but I did, and I felt that I had to be the stronger person of, of both of us at the time. And that’s why, why I looked up all the information that I could.

It had a huge impact on our relationship, a huge impact. So, the one thing is that at some point he was becoming needier, and needier and needier, and I kind of like started to mother him, more and more and more. And then, lately, a completely new phenomenon where he was kind of trying to break away from that. He thought that that is what is making him ill, actually, and so he tried to break away from me. And at the moment he feels that he can’t be in the flat any more, where hes been for many, many, many years, and so he says we need to move, and I don’t really think we are in any financial position to move, and also hes weak and so I don’t really see how that can be possible.

And also it’s, this kind of like tearing away from me lately. It was very difficult for me, because before I felt that I was needed more and more and more, and more and that constituted a lot of our intimacy in our relationship, me caring for him. And, suddenly, that was like taken away and he was tearing away. And so we actually went to we were always very proud of our relationship and we even thought about becoming relationship counsellors. We were really proud. And so that actually led us to seeking professional help and to having relationship counselling. So that’s late developments.

And but now it seems that mainly he says he loves me, but he can’t be in this flat any more. And so that’s another headache, really, and, yes, and so it has an impact. I suppose it’s also this kind of, like, if one in the relationship is always, like, really miserable for long periods of time, not feeling well and kind of like intensities clash. So, if I come from work and I’m quite joyful, and it’s creating resentments obviously, huge resentments on both sides. And so, he wants me to be as miserable as he is, or she doesn’t understand me, and really difficult. So I marvel at how other people cope with that.

And then me being quite smug and doing this recording and talking about it all, and him actually suffering all this pain and all these threatening things. It’s just like much.. far, far worse for him than it is for me and so it’s kind of like split. It’s not easy to deal with I suppose.

And I mean yesterday, because it was a bad day well I have to think, No, hes 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 were not now. I mean sometimes hell just sit here looking into space and you try and have a conversation and, No, theres 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, hes 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 hes a chatty person, hes friendly, hes 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. Hes 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.

If you don’t mind talking about this, if you do then don’t, but I wondered if you’d talk a bit about the more physically intimate side of your relationship and how that’s been affected by her condition over the years?

Fortunately, no problems at all, I’m happy to report.

At times when my wife has had a relapse then her feeling in her body does diminish but, thankfully, from that point of view, all her feeling returns and after a relapse and theres no problem at all with that. Because, obviously, in a loving relationship that’s a very big side and you can’t understate it really, I don’t think. So were lucky in that respect.

There is a tremendous thing that as a carer you come to regard your partner as a patient and therefore sex would tend to appear to be out of order, unprofessional or whatever and it does affect erectile dysfunction and things like this. Because of the change in mobility, in muscle control the variety of sexual positions becomes limited and one becomes quite inventive at times to go on, carry on expressing physically ones love for each other. But it’s very difficult mentally to do this if you’ve had to pick somebody up off the floor, you put, stick them on the bed because they’ve fallen off the bed, by the time you’ve done all that and you’ve got them into a position you think, Oh, no, I don’t feel like this anymore at all. I’m just knackered, I just want to go to sleep [laughter].

Hes very affectionate but in terms of the sexual aspect of the relationship it’s, that has dwindled quite a few months ago and I accepted that it would. It’s much harder for him. It’s much more difficult for him but I just accepted that it really would be coming to a natural halt anyway. I just thought, well, because of the amount of, I just thought it was, I just thought it was just an inevitability, as it is with any illness I would say, with a lot of illnesses where, you know, the limbs don’t work as well, especially the lower limbs don’t work as well. And it, it sort of just takes you enough energy to sort of just get from the chair to the kitchen and move around.

Hes at that stage now where he physically just getting around from the bedroom to the kitchen, making a meal and then sort of getting to the computer maybe, to do a bit of work and getting up to answer the door, is just going to wear him out. So hes more easily tired and I’ve just sort of come to terms with it, you know. I just sort of sit beside him on the sofa, hold his hand and then I’ll sort of get up and say, Okay, well, let me sort of put the kettle on for a cup of tea and let me sort of cook the meal, you know, because I know you’re too tired to do it and just sort of lay there for a moment, just lay there or go to bed or sleep, whatever you need to do. I’ll just sort of sit and make you comfortable.

So those times when before wed would be more affectionate with each other, I just make him comfortable and I’m quite happy to do that. The fact that hes still being able to talk to me I think is much more important than anything of a physical nature, much more important but I appreciate that that he just sort of misses that and mentions it so I’ll just sort of just play along but I’ll just sort of say, Okay. That’s fine but, you know, you do all the flirting, make all the jokes you want. But it, you know, it’s going to be less of an issue, okay. Just let’s sort of just sort of maybe sort of deal with that, you know, tomorrow or whatever it is. But rather than sort of say, you know, It’s finished. It’s the end, which I don’t think is the right kind of thing to say, I’ll say, Okay, well, you know, maybe in a few months. Maybe next week or whatever it is. Maybe, you know, maybe things might change but I don’t think that they will really in terms of, you know, the sex part of the relationship. I think that that’s over. But that’s okay.

Could you talk a bit more about how your relationship with your dad improved?

Yes… well like I said we didn’t, we didn’t used to see speak to my dad at all because, you know, when we were younger and we used to see him and has he got I, when I got older he stopped working as much because he was getting poorlier we started, you know, we didn’t speak because he was grumpy yes he was grumpy and you couldn’t really speak to him but then when we were kind of like, I don’t know, his health deteriorated and the hygiene fell on me to like start being with him for stuff it’s a kind of, it was a bit weird, it’s a weird process actually because when I started bathing him my son was a baby so I was bathing my son and I was bathing my dad. which was very weird and it’s a kind of, I shouldn’t really be doing this really you know I’m bathing my son and then I’m bathing my dad, it’s, tell you it’s weird.

And we got talking because you can’t just spend forty five minutes with somebody, an hour, in the bathroom and not say a word. So we ended up talking and yes we ended up talking about how he became to become in the UK, what he did for a living. Because I [laughter] I hadn’t a clue you know, he was an engineer when he first came here and you know how much wages he used to get and so we end up talking and the more I bathed him the more we talked the more we talked the more we learned about each other. I mean some of the stuff he didn’t know about me my friends because he was housebound more or less so, you know, he didn’t get to go out or hear word on the street because nobody used to come and speak to him, his friends never used to come and see him so he didn’t know what I was doing. Usually you pass people say Oh I saw your son doing’ or, there was none of that kind of interaction.

So, yes we learned a lot about each other and now out of probably all of his kids, if he had to say, you know, parents don’t say oh so and so is my favourite but he had to say who he was closest to now if he didn’t say me I’d be upset [laughter] you know, yes I’d be shocked if he didn’t say me because it’s a bit sad really but I actually calculated over 12 months how much times I’ve bathed him or, you know, and it’s quite I mean yes it’s quite a lot of times.

But yes I spent lots of hours extra with my dad . What I’m trying to say is I’ve spent a lot of hours with my dad that I wouldn’t probably have spent with him they always say behind every negative is a positive. And I’ve seen people triumph have tragic, tragedy so it’s that that I’m focused on and I do get emotional when I leave his house or still now, yes I put him to bed and still leave with that, so. He might be in the bath and were having a laugh and a joke and stuff in the bathroom but as soon as I leave his house I start, emotion kicks in and that down feeling but I mean I wake up in the morning and I’m back to normal, yes, fully functioning. So, you know, if we speak yes I couldn’t speak to him about it all that. So it’s improved, my relationship has improved dramatically from not talking to being able to tell him absolutely everything.

What impact does it all have on your relationship with your partner?

My relationship with my partner has obviously been quite affected by everything that’s happened. Weve been together for nine years as of yesterday. We moved in together about a month after my mum died. So in most of the time that weve been together hes been involved in, you know, my family. Obviously he was at my brother’s wedding. And hes obviously, hes seen, hes seen my mum decline. Hes seen my brother go from a chap who used to speed round in a sports car to somebody who’s bedbound with all the problems that he has. It’s been very hard on our relationship.

We you know, try to get on with, with stuff and, day to day. Hes given me a lot of practical support, taking me up and down to the Midlands before I learnt to drive, then helping me clear out my parents’ house, helping me with my brother when wed go up and visit and, and my parents were both alive. He would help me get my brother in and out of bed or help me feed him and, and that kind of thing. Be another person to, for my brother to have a laugh and a joke with as well. He likes ganging up with my brother to pick on me.

But, you know, I can’t say that it hasn’t affected us, because it has. You know, it’s bad enough when you lose a parent and, and maintain a relationship, but obviously having the situation where, you know, weve got another person to consider. I mean my partner’s got two siblings and a mother. Hes got a father who, his parents are divorced and his father is abroad. But his family are quite close and they don’t live too far away from us. But, you know, you can come and go and see them as and when. They can come and see us as and when.

But we obviously have to go and see my brother and, you know, having to think about things like, We need to go and get him some toiletries or, Can you go and visit him because I can’t visit him tonight? or… Yes, I mean weve had a lot of problems and a lot of arguments over all kinds of things, I don’t think specifically to my brother, but the strain of, the strain of having that at the back, you know. And sometimes that can come out in arguments like, you know, you know, You don’t have to do the things that I have to do, you know. You don’t have to worry about your brother and all kinds of things. It’s, it doesn’t make you feel like a very nice person sometimes when you say things like that.