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Multiple Sclerosis: friends & family experiences

Love and relationships with MS

After a diagnosis of Multiple Sclerosis (MS) people may worry about possible effects on their relationship with their partner, if they have one, and their planned future together. It is sometimes reported that couples where one partner has MS are more likely to separate than the rest of the population, but in fact there is little evidence to support this. There has been some research that suggests women who have MS are more likely to experience separation than men, but overall the rates are very similar to the rest of the population. The MS Society offers a leaflet on living with the effects of MS, which includes some advice about relationships.

People whose partner has MS may find their relationship continues largely as it did before. Some people we talked to said their partner was still the same person they had originally fallen in love with and that was unchanged. Some felt it had brought them even closer. David says it is important to keep talking to each other and work hard to stay close together so he and his wife are more than ‘a carer and someone who is sick.’

 

Patience’s husband has played a major part in her life and they have grown close together, even though ‘everything is not roses, happy every day.’ She thought about leaving at one point but is glad she didn’t.

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Patience’s husband has played a major part in her life and they have grown close together, even though ‘everything is not roses, happy every day.’ She thought about leaving at one point but is glad she didn’t.

Age at interview: 44
Sex: Female
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I live in a place where we are family orientated people. I could have given up. I did actually, after seven, six years, I thought, when I met my husband in September, I said, first time I had met my husband September ninety seven, I said, “I’ve had enough of this country. I want to go home.” And he said, ‘Oh, don’t go, you know.” So he is a very confident man really. He is, you know. He boosted me out of it because I wasn’t, I couldn’t even sit here and talk to you. I was a very, very shy person. If you will believe it, no! You wouldn’t, you see. 

So my husband has played a major part in my life, despite the fact that he’s disabled, wheelchair bound, can’t even hold a cup. I have to feed him. I have to give him bread, everything. He’s been a major part in my life as much as, I’ve got my faith as well. So we have grown together to be close because I said to him like, “There’s so many things you can’t do in this life.” I’m able and I can’t do a lot. I can’t even ride a bicycle because I had a fall when I was little, when I was running. So the fear of that couldn’t make me and we tried a few years ago, when he was, you know, wheeling him, he was a bit not like now. I got his brother’s bike. We went to the park. He said, “Do this, do that.” I said, “I couldn’t do that.” 

So I gave in but I can swim now and guess who? My husband taught me how to swim because I used to go swimming with him. He used to be a swimmer. He swam for the local town and the military service. I used to take him swimming on my own. He said, “Do this, do that.” I was petrified of water. I’ve got a fear of that. So I’ve overcome that, you see. So, you know, you can do anything and, you know, I think it’s my culture as well. My culture, my faith and my husband, I love dearly.

That is life, really. I knew what I was taking on but not fully. What do I do? Do I say I’m walking away? No. Yes, some people would do because we’re all different and I do respect everyone. It’s their personal choice. It’s their decision. 

They know why but to me, I want to hang in here. And I’m happy here, so why do I leave? Why would I go, you know? Everything is not roses, happy, happy every day. Sometimes I’m tired. He comes over and I just, “Oh, be quiet. I just want.” You know, but all of a sudden we just pick it up again, you know, and then this morning he was going on and on and I said, “Please, you know. You’ve woken up too early and things.” He say, “Oh, I don’t mean to.” And then we talk about it and then he goes back to sleep, you know. So, I’m sitting here. People shouldn’t think that everything is good. Everything is okay. I have to make myself make it okay. Sometimes I couldn’t. I can’t but I just try and sometimes I shout and scream, you know. 

I’ve spoken about a lot of good things but I need to let people know that it’s not always good. There’s up and downs and you have to know where the balance should be, you see. So they shouldn’t think that, “Oh, this girl, she’s come a long way.” You know, if I tell you everything is good, you might be doubting yourself. “Now how come?” If you see my husband now and say, “How come she’s so easy?” But you need to put a smile on your face and when you put a smile on your face, those challenges, you can get over it. Sometimes you cannot.. You know, you couldn’t or, you know, but then, hey, scream, shout, let your emotions out. It’s part of the healing process. 
 

David works at demolishing the barriers which MS can create between himself and his wife so that they don’t lead separate lives. Sometimes it feels as though she is building a wall around herself.

David works at demolishing the barriers which MS can create between himself and his wife so that they don’t lead separate lives. Sometimes it feels as though she is building a wall around herself.

Age at interview: 49
Sex: Male
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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, we’ve 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. We’re not just become a carer and someone who’s sick. We’re 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 we’re 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. 
 

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.

Age at interview: 17
Sex: Female
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So, what do you think has kept your relationship together?

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.
On the other hand, living with MS may bring to the surface tensions that were already there, or create new tensions, as people adapt to changes in their social lives or take on caring responsibilities, particularly if the person is more severely affected. Louise, whose husband has had primary progressive MS for 15 years, said, ‘You marry one person and you get another’. Eric’s wife has had MS for 30 years but in the last few years it has progressed markedly. He now feels he is ‘75% carer and 25% husband’. These are all normal responses and no-one can predict how they will feel if it happens to them; it is likely there will be good days and bad days.
 

Mike acknowledges that for some couples life with MS becomes too much for their relationship to survive. But he emphasises that he is, ‘in it for the long haul.’

Mike acknowledges that for some couples life with MS becomes too much for their relationship to survive. But he emphasises that he is, ‘in it for the long haul.’

Age at interview: 51
Sex: Male
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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 we’ve 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 there’s 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.
Some people had married knowing their partner had been diagnosed with MS. Mully and Chez admit they didn’t know fully what that would mean for them.
 

Mully didn’t know anything about MS when she met and married her husband, but she was optimistic that she would be able to handle it.

Mully didn’t know anything about MS when she met and married her husband, but she was optimistic that she would be able to handle it.

Age at interview: 63
Sex: Female
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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. There'll 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 he’s 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.
 

Chez was about to get married when her fiancé was diagnosed. She took on the role of finding out what to expect of life with MS.

Chez was about to get married when her fiancé was diagnosed. She took on the role of finding out what to expect of life with MS.

Age at interview: 42
Sex: Female
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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.
Although Mully and Chez’s relationships had lasted, Kay described how her brother’s did not. He got married after the diagnosis and his wife was optimistic at first, but eventually left him because she could not cope with his mobility problems. If people are diagnosed quite young, sometimes family members may worry whether they will have a relationship with a partner, and a family. Louise’s son now in his 30s, has not had a long-term relationship since his diagnosis. Ann’s daughter, though, recently diagnosed at the age of 18 is getting married soon.

People talked about the stresses and strains that went along with living with a partner who has MS. Dave said, ‘It’s a good job you’re in love, or you wouldn’t do it.’ Betty and her partner had lived together for 31 years, but over the last 5 years his condition has become much worse. She commented, ‘The person I fell in love with I lost five years ago. It’s a bit like living with a stranger sometimes… Sometimes you do want to walk out… but you don’t do that. I’m not going to give up on him’:
 

Stella describes the tensions between her and her partner as a ‘clash of intensities.’ Sometimes it feels like he’s trying to break away from her and there is resentment on both sides.

Stella describes the tensions between her and her partner as a ‘clash of intensities.’ Sometimes it feels like he’s trying to break away from her and there is resentment on both sides.

Age at interview: 45
Sex: Female
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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 he’s 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 he’s 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.
 

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.

Age at interview: 58
Sex: Female
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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.
Several people talked about other people they knew, including their own parents, siblings or children, who had separated from a partner with MS. Carole and Anita both described how family life was affected for them as teenagers by the separation of their parents – in both cases it was their mother who had MS. Alice had made a decision to leave a partner with MS. Although she stopped being what she called his ‘romantic partner,’ she has sustained a long, loving friendship with him:
 

Alice split up with her partner over ten years ago but he is still her best friend and she visits him nearly every day.

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Alice split up with her partner over ten years ago but he is still her best friend and she visits him nearly every day.

Age at interview: 35
Sex: Female
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We had an amazing relationship but ultimately, I did leave him although I never left him as a best friend. You know, our relationship has been consistently amazing but I left him as a romantic partner, which obviously didn’t help on top of everything else.

So I think he, I think our talks really support him, which is why, that even though I split up with him 2000, we have spoken and seen each other almost every day since. So...

Can you say a bit more about that? This is sounding very unique in my experience and my reading of literature there is, I want to say obviously...

[mm]

...I don’t know why it should be obvious, but there is a reference to relationships dissolving through MS. Everybody I’ve interviewed so far, whether it’s relapsing-remitting over many years, secondary progressive, primary progressive, all those relationships remain intact as living arrangements and romantic attachments, not always easy but…

[mm]

So would you mind just sort of talking a bit about that dissolution of the romantic partnership but the continuation of your friendship?

Yeah. We always had just the most beautiful friendship in our relationship anyway. When he was diagnosed I was twenty four or something and I was so young. He was twelve years older than me and he was seeing the relationship as being marriage and children. I was not there yet, regardless of the illness. I was not there yet, although looking back now, I think if I’d realised what, how special he is compared to the general populace, possibly might have changed my mind [laughs]. And I’ll come to that later because we talked about getting married some time ago when he was very ill.

Ah, it was so difficult. At that point, he was very unsteady so he was falling over a lot. He was asleep by nine o’clock most nights. I was, you know, in my twenties. I was wanting to kind of go out a lot. I was just starting my career. I was socialising quite a lot, so often I would stay out in the evening, kind of come back at say for nine o’clock, when he’d be asleep. And I, it felt like I was going out with a pensioner. It felt like I was going out with a very old man. I felt like our relationship had fast forwarded a couple of decades and this is what my life is going to be like as a pensioner, in my head, but I was living it in my twenties and I was so conflicted by it. I absolutely wrestled with what to do and I remember he was talking about marriage and I was very reluctant to go ahead and, obviously, the more ill he got my role changed. Of course it does. You become much more of an administrator, of a practical person changing light bulbs, just doing, being a handyman, just doing things.

And then, eventually, I kind of met someone else and I was tortured about what to do. I loved him then and I love him now and my leaving, I think I was more devastated than he was because he’d been my rock for seven years and my introduction to kind of adult life, post student life. I met him when I was a student.

You know, massive, massive pivotal changes in my life he kind of oversaw, I suppose, it’s like a kind of paternal role, which is interesting now I’ve become the kind of maternal role now. Our roles have just swapped entirely so, yes, that was a horrible conversation but, I mean he didn’t really speak to me for the next six months, but after that point we kind of knew that we just had this bond, regardless of the illness but the illness certainly brought us together. It was like the glue in keeping us united. I suppose that’s the one good thing from his side that you could say has come out of it that, even though he lost me as a partner, his illness and his general loveliness meant that he was never going to lose me because in a way he has kind of got me, not in the way that he wanted, but until the day he dies, I’m going to be with him forever, unconditionally, without discussion. I have power of attorney. He has me, you know.

You visit him every day?

I used to visit every day until I moved and now it’s probably every other day, sometimes two days in between and that’s more from practical circumstances.
Morris described a similar situation between his parents. His mother continued to come round and help his dad but they had not lived together for some years. 

Sexual life had changed for some couples, but not for all, and people had different reactions when sex became difficult or impossible. Karl said his sexual relationship with his partner was quite good and that you just have to ‘work around things.’ Ian also said that his wife’s MS hadn’t affected their sex life, which was probably even better now that their children had left home.
 

Anthony’s wife loses some feeling in her body during a relapse, but feeling always returns and, he says, they are lucky to still enjoy a full sexual relationship.

Anthony’s wife loses some feeling in her body during a relapse, but feeling always returns and, he says, they are lucky to still enjoy a full sexual relationship.

Age at interview: 43
Sex: Male
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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 there’s 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 we’re lucky in that respect.
Sex had ‘dwindled’ for some, as a result of physical incapacity or the presence of urinary catheters and sometimes it was ‘virtually non-existent.’ Eric and his wife both felt deprived by the lack of sex in their relationship. For some couples, one partner felt the loss more than the other. For Louise it was a ‘tragedy.’ But, losing sex did not always mean the end of physical intimacy. As Chez said, ‘We still kiss, we still cuddle, we still have the love that we had 25 years ago.’
 

Dave and his wife, who are both trained relationship counsellors, contributed to a television film about ‘Sex over 70.’ Dave talks about some challenges of continuing to express love for each other physically.

Dave and his wife, who are both trained relationship counsellors, contributed to a television film about ‘Sex over 70.’ Dave talks about some challenges of continuing to express love for each other physically.

Age at interview: 73
Sex: Male
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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 one’s 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].’
 

Christine accepts that the sexual part of their relationship is probably over, but she appreciates that her boyfriend misses it.

Christine accepts that the sexual part of their relationship is probably over, but she appreciates that her boyfriend misses it.

Age at interview: 50
Sex: Female
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He’s 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. 

He’s 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 he’s 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 we’d would be more affectionate with each other, I just make him comfortable and I’m quite happy to do that. The fact that he’s 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.
MS also had an impact on other important relationships. Kay’s involvement in her brother’s life has affected her own partnership. Morris’s relationship with his dad has improved as a result of caring for him. He said it was almost a role reversal.
 

Morris learned more about his dad’s life through caring for him and their relationship has, ‘improved dramatically.’

Morris learned more about his dad’s life through caring for him and their relationship has, ‘improved dramatically.’

Age at interview: 35
Sex: Male
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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 we’re 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.
 

Having to meet her brother’s needs is a strain in the background of Kay’s relationship with her partner.

Having to meet her brother’s needs is a strain in the background of Kay’s relationship with her partner.

Age at interview: 38
Sex: Female
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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. We’ve 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 we’ve been together he’s been involved in, you know, my family. Obviously he was at my brother’s wedding. And he’s obviously, he’s seen, he’s seen my mum decline. He’s 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. He’s 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 we’d 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, we’ve got another person to consider. I mean my partner’s got two siblings and a mother. He’s 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 we’ve 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.


Last reviewed March 2020.

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