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Multiple Sclerosis: friends & family experiences

MS: support from family, friends and neighbours

Family and friends can be an important source of emotional and practical support, both for the person with Multiple Sclerosis (MS) and for the people caring for them. People talked about the many different ways they were helped by children, parents, siblings and other members of their extended family, as well as by friends and neighbours. They also talked about some of the difficulties they had in getting a good support network in place and maintaining it. 

Paul’s adult children visited regularly and were able to help him see changes in his wife’s condition which might need medical attention:

 

Paul said his children ‘live it like we live it,’ even though he and his wife have encouraged them to live their own lives and not be affected by her MS.

Paul said his children ‘live it like we live it,’ even though he and his wife have encouraged them to live their own lives and not be affected by her MS.

Age at interview: 56
Sex: Male
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Our children live it as much as we live it and they see it and it took me a while to sort of say, not when they were younger but as they got older, to say, ‘Do you think your mum’s alright?’ because I’m too close to it. And they’ll say, ‘No, I don’t think she is.’ And they’ll say, ‘Have you done this test, have you done that test?’ And I’ll say, ‘No, I haven’t.’ ‘Well, do it.’ And that’s the way we bat it on. We’re really proud of our kids because… we try not to let the MS…we’ve said to them, ‘We don’t want it to affect what you do. You go and live your own lives.’ And they’ve all left home, got their own families and they’re enjoying life.
Robin said his children were ‘absolutely wonderful,’ travelling long distances to visit their mother and helping to find treatments for her. John described how his children (aged 8, 11 and 14) ‘all pulled together’ in the early years after their mother’s diagnosis, though it was ‘difficult for them to come to terms with the fact that their mother was no longer absolutely brilliant’. Paul Z is really pleased to see his grandchildren treat his wife as though she were no different from anybody else in the family. 

Not everyone looked for support from their family members. Norma said that she tended to work through problems by herself, and she felt that it was her responsibility to care for her son. But she was reassured when her adult children told her that they would look after their brother if she should die. Children within the same family could respond differently as they got older, and differently from each other. Chez explained that her daughters dealt with their father’s MS better when they were younger. Now, as young adults, one of them has found it harder to cope and rarely visits her father while the other visits weekly.
 

Chez tries not to push her children in particular directions when it comes to their relationship with their father, but to let them ‘do their own thing in their own way’.

Chez tries not to push her children in particular directions when it comes to their relationship with their father, but to let them ‘do their own thing in their own way’.

Age at interview: 42
Sex: Female
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My eldest daughter left home and went to live with her boyfriend when she was about 14. She also went through a stage of drinking, smoking cannabis and basically being a wild child. She came out of that. We got the help that we needed at the time from social services and I can’t thank them enough for that time. My other daughter went into her shell. She didn’t want to know about her dad getting any worse and it was at the time when his condition was changing quite dramatically and he was going in and out of hospital. And these were little things that you were going in for but they were concerning his MS. I tried to keep both children up to date When they were younger they dealt with it a lot better than when they got older. When they were younger there was one incident that my husband had where it was near Christmas, we had the community alarm system, my husband fell between the bath and the toilet and I couldn’t pick him up. So I got two pillows, got a duvet, put it over him and said, “Stay there, I’ll go down and get the community alarm system”. Sang Christmas carols with the woman there because she had to stay on the phone until the paramedics got to the house. The paramedics got to the house with my husband shouting, “I’m still here, I’m still here.”[laughs] And basically he, my daughter, one of my daughters came out of the room and basically turned around and looked at the paramedic and said, “Oh, you’re here, oh right, OK, dad’s fallen again, I’m going back to bed”. And turned round and went back to bed. Now, that same daughter doesn’t want to have anything to do with her father. She’ll see her father possibly once every two months if I’m lucky. She doesn’t want him to get any worse than he is and I think it’s her blanking the condition out. My other daughter, the youngest one, has now accepted the relationship that my husband is slowly getting worse and goes and visits him at the home once a week. So the, the two children have sort of gone their own way with my husband. It’s very difficult on my husband with my eldest daughter because he does want to see his daughter, he does want to know about her life because she’s left home, she’s living in her own home but doesn’t want to go and see her father because she’s afraid of what she’ll see each time she goes down. Whereas the other one is quite happy at the moment to go and see her father on a weekly basis, and actually comes home from Uni specially to go and see him. So it’s, it works in different ways with the children. I can’t even call them children now. Young adults. I don’t know whether my eldest daughter will change over a period of time and start to go and see her father but I’m not going to push it. I feel that they’ve got to do their own thing in their own way. I think if you start pushing children all the time in one particular direction you’re going to end up fighting with them and you’re not going to get what you want to achieve out of that relationship. Whereas my husband and I have agreed if she wants to come and visit and we’re going at the time, fine, she can come along. If she doesn’t want to visit that’s up to her. Whereas my other daughter is quite happy, she’ll go and see him. She’ll go and take things for him. And she’s quite happy at moment. Whether that will change, I don’t know.
Parents and in-laws were another possible source of support. Sarah Z’s mum was the ‘top of the list’ in her support network. Emma’s mother was one of the few people that she could tell about her fears when her husband was being tested for MS. At the same time, parents might face their own difficulties, particularly if they themselves were getting older and less physically able to help. John X’s mother-in-law, gave practical help when she could, but had to explain to the social worker that her ability to help was limited because she was 84 years old. Alice thinks that her friend’s parents don’t visit much because they find it quite hard to see their son’s condition get worse.
 

John’s 84 year old mother-in-law ‘did what she could’ to help, but resisted a social worker’s suggestion that she could do more housework.

John’s 84 year old mother-in-law ‘did what she could’ to help, but resisted a social worker’s suggestion that she could do more housework.

Age at interview: 63
Sex: Male
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I was working full time teaching which sort of meant also in the evenings as well. I had my Mother-in-law lived nearby and she came down. She had my wife at sort of quite an old, an older age, so she was well into her eighties at the time. We had a social worker come round to assess us, to see if there was anything they could do to help, and that was one of those amusing and interesting moments, when she started saying things like, she thought that everybody else could perhaps do a bit more. And why couldn’t Mother-in-law come and spend the entire day there at home when I’m not there, sort of doing the housework and cleaning up. My Mother-in-law, a lovely lady, Irish, with a temper that went with it, told the lady, told the social worker exactly what she could do with suggesting an 84 year old work full time, doing the housework. My Mother-in-law at the time was in sheltered housing, very nearby to where we were living and obviously came down and did what she could.
People talked about different kinds of help and support from brothers and sisters. Kate enjoys occasional shopping expeditions with her sister as a way of getting out of the house. 

Carole’s twin helped her get through very difficult teenage years caring for their mother. They didn’t talk about it much, but her twin helped her take her mind off it (see below). But another sister ‘didn’t really want to know anything about it at all, because that was her way of coping’. As well as directly supporting a person caring for someone with MS, siblings might offer indirect support too. Louise, for example, was able to have a break from caring for her husband when he went away with his brothers and sisters.
 

Kate includes her husband in family outings but occasionally goes shopping just with her sister.

Kate includes her husband in family outings but occasionally goes shopping just with her sister.

Age at interview: 75
Sex: Female
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You mentioned that, while we were talking earlier, that your sister lives nearby, and you referred to her once as we were talking just now. Could you say a bit more about how much time you get to spend with your sister, what your relationship has been like there over the years?

Well, we’re very close as sisters. Although there’s a big age gap we are very close. I have a brother, but he lives, he lives in [place name]. Yes, we do, we make a point, we all meet, she, she lives the other side of the river from us, which is only about five minutes away, but it’s the other side of the river. And we always meet on a Saturday morning in [place name] for coffee, all of us, my sister, and Bernard comes as well. 

I don’t go anywhere, I don’t, the other thing I don’t, I try not to do is to say to Bernard, “You can’t, no, I’m going on my own, you can’t come” or like when we’re going shopping, you know, “Just sit here.” I will say, “Come.” I, you know, I have to get the buggy. We have a motorised buggy which fits in to the boot of our car quite well, and I have to get that out and put it together and sometimes I think, “Oh, a bit of a drag, this is.” But I, it sounds awful, I hope, I hope he never sees this. But I don’t ever want to be in that position where I say, “No, don’t bother” because it’s making me, it’s inconvenient for me. I don’t make him an inconvenience. 

And I like him to come, I like him to mix with the family. It would be easier to say to him on Saturday, “Well, look, I’m just going to go and have coffee with my sister.” And but we don’t, we all go, her husband comes and my niece actually as well, she often pops in. And, and occasionally we, my sister and I meet up and go to [place name] for a shopping expedition. And then I do feel I can leave Bernard for half an hour, well, more than that, for half an afternoon. I say to him, “Have a rest” and he’ll sit and just listen to music. He’s quite happy to do that.
 

Louise is sometimes able to relax by going out with her friends, or when her husband is away with his brothers and sisters.

Louise is sometimes able to relax by going out with her friends, or when her husband is away with his brothers and sisters.

Age at interview: 49
Sex: Female
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So I do have a very good network of friends and will go off and definitely have evenings out with them or, yeah, or a couple of days away if my husband can go off and stay with his family and I think that’s very important, so you’re not just a carer.

And that works okay does it? You’ve got that kind of in control..

For the

Sufficiently.

For the last couple of years, definitely, but his family have been aware that, you know, there are have been crisis points when coping has been more difficult when he’s been unwell and so, yeah, they have been much, they’ve been good and he’s lucky. He’s got quite a few brothers and sisters and so, as I said, they have been good in recent years, last year or so, in terms of him going off and staying with them, which allows me to relax. 
 

Kay talks about the importance of getting support and praise from her friends.

Kay talks about the importance of getting support and praise from her friends.

Age at interview: 49
Sex: Female
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Also, we have a huge, well, I have anyway, a, a network of friends that I can rely on and just ask for help from. And that is a valuable asset. It really is. There, there are, you know, a handful of friends that are just always there for me. They, they, they praise me, they tell me I’m doing a brilliant job all the time. And, and that actually does matter. Because there are some times when you think, “What’s this all about?” and it’s a very hidden role and all the rest of it. But to have places that you can just go to for a weekend and they’ll just fuss over you and spoil you is, is very important. Yes, and people who are actually concerned about, “How am I?” rather than asking, “How is he?” Because everybody wants to know how he’s doing and, and send their love and all the rest of it. Which is great and, you know, it’s important. But there are those times when you just think, “Well, actually he’s fine. What about me?” Because, you know, you’re doing all the cooking, shopping, driving, parenting, gardening, finances, the lot, and, and that’s hard work. So it, it, identifying those people who will be your biggest fan, quite apart from your mother, who’s obliged to be your biggest fan, is, is really very important.
People did not always live near to their families, but often kept in contact with them by phone, email or Skype.
 

Tony’s two sons are both supportive. One of them lives in Australia so they keep in regular contact on Skype.

Tony’s two sons are both supportive. One of them lives in Australia so they keep in regular contact on Skype.

Age at interview: 72
Sex: Male
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You said your son is, is seemingly beginning to think rather as you did of your parents, that it’s his turn to do the looking after. Is, is he part of your support network as well?

Oh, yes, of course he is. You know, he’s, both the sons are. The son in Australia, he comes back. Did I say I’ve got a son working for, I’ve got a son working for [company name] in Australia? Because of my wife’s Australian citizenship, both of them have Australian citizenship. So they can go and work in Aus-, both of them have, I mean both of them have been over there and worked. The elder one is back here now and married. But the other one is now still working for [name] there. So he comes back once a year and we do the old Skype stuff, you know, and, and talking. So I’ve recently started a Skype group so we can all be on together, you see. So another little thing that helps with... And she comes in to the little office with me and sits in front of the computer and sees people.
 

Family visits take some organising for Karl and his partner. They keep contact with their relatives by email and telephone.

Family visits take some organising for Karl and his partner. They keep contact with their relatives by email and telephone.

Age at interview: 40
Sex: Male
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Have either of you got any family nearby, or..?

My partner’s family’s in Australia, because she’s Australian and I’m Welsh and all my family are in Wales. So, we’re basically sort of quite cut off here from all our families. My father is still alive and I’ve got two sisters. 

Do you, are you able to be in touch with them, you know, electronically, or..?

Yeah, we’re always on the phone to each other. They come to visit us, we go down to visit them. It’s a bit of a mission for us to visit them because we’ve got to get the wheel chair, got to book the trains and everything. I don’t drive. [Partner’s name] my partner doesn’t drive either. 

My two sisters live in, one still lives in Wales the other one lives in [place name] we do see each other from time to time but it’s mainly email, telephone contact that we have.
For some, friends were a ‘lifeline’ who helped ‘get you through’. Both Kay Z and Louise said that regular evenings out or weekends away recharged them. At first Stella lost contact with her friends because she didn’t know when her partner would be well enough for her to see them. But later their friends supported her by sitting with her partner when she couldn’t be there and he was having panic attacks. Some people’s friends helped with practical things like picking children up from school or moving house. One of John Z’s friends insisted on vacuuming the house even when he’d done it himself. Others helped with emotions and relationships. When Christine’s friends commented on her boyfriend’s behaviour, it made her think very hard about whether to stay in a relationship with him.
 

In the early days of his wife’s MS Jeff time was fully occupied with work and with looking after his family. He was grateful for the support of colleagues and friends.

In the early days of his wife’s MS Jeff time was fully occupied with work and with looking after his family. He was grateful for the support of colleagues and friends.

Age at interview: 62
Sex: Male
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Well, unfortunately my wife was very ill all that summer, extremely weak, bedridden. And had these drugs, like ACTH steroids, and of course with their side effects, whatever, but they didn’t help that much really. And various other drugs, baclofen I think was mentioned, was one of them. And gradually it was like a survival. Again it was summertime, so I was very fortunate being a teacher. But having happened in May, I’d still got at least half a term to go, and I must say my colleagues in school and my head teacher in particular [were] extremely supportive and understanding. As were also all, all the support we had from friends around, and particularly friends in our local church. In that respect very, very fortunate. 

So obviously I was there at home. I suppose I could cook to some extent, this, that, other. I’d learnt in fact how to cook basically, so I took over that, that role. And the odd things, you know, getting the house sorted out, ironing, getting the children ready for, for school. I was determined obviously to look after my wife as best as I could. I had a commitment to school and the children I’m responsible for. So what was I going to do? I didn’t want anything to come in the way of harming my children or making them upset. So in a sense I suppose I sacrificed my time entirely. So if I was invited to anything out in the evenings with my colleagues or friends, I would make my apologies, so I could give my, my time really to my wife and my children. But it became a planning exercise really, because time, there was great pressures on my time. 

I used to have a lot of homework to bring home to mark. Whereas previously I might have stayed in school to mark it, I would now leave school as soon as I could. My wife was unable to pick up the children from school when they started back after the summer, but local friends did. But I did my best to get there as soon as possible, pick the children up and so on and so on. Meals for school? Well, a planning exercise. I think I used to make sandwiches for the week and cut them and wrap them and freeze them. So that saved time in the morning. Exhausting. Certainly I felt very, very exhausted. But at least I was supported.
Sometimes people talked about not having as much support as they would want from their family members. Although his brothers and sisters had all moved back to their home town, Morris felt that he still took on most of the caring for their dad. Patience, with no family members in the UK, felt that her husband’s parents didn’t give them as much help as they could have. Anita felt isolated within her family as a teenage carer.
 

Paul has become friends with his neighbour over the years and values the reassurance of knowing that she is there and willing to help.

Paul has become friends with his neighbour over the years and values the reassurance of knowing that she is there and willing to help.

Age at interview: 56
Sex: Male
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We’re fortunate in that we have lived here a long time and we’ve got a neighbour, one in particular, who is brilliant. If for… if for any reason I’m out and I get stuck in traffic, it happens, I know I can ring and say, ‘Can you just pop in and see if she’s alright for me?’ and she will. She’s brill. And, I say, ‘neighbour,’ we’ve become friends over the years. And I know that that’s there, and I may only use it once every ten years, but it’s just reassurance and, you know it’s there… because you live your life with your carers and carers are all over and carers are human beings and they can go ill. And so it’s nice to know there’s somebody there.
 

Paul and his wife have mutually supportive relationships with their close neighbours.

Paul and his wife have mutually supportive relationships with their close neighbours.

Age at interview: 76
Sex: Male
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So between us we’ve found a way of coping with the MS that she’s got. If it develops to other areas of the body then, you know, it may be more difficult but the one great fear I’ve got is that if I’m not around I don’t think she would be able to cope but, fortunately, we have got some very, very good neighbours either side and across the road and we all help each other. The next door neighbour, whose husband is very poorly, they ring each other every single morning just to see how each of them are and whether there’s anything we can do for each other, bit of shopping or getting pills from the pharmacy or whatever it happens to be. 


Last reviewed March 2020.
Last updated July 2018.

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