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Multiple Sclerosis: friends & family experiences

Being a ‘carer’

When we talk about ‘caring’ for somebody in everyday language we can mean many things; feeling affection or love for a person, wanting to spend time with them, behaving protectively towards them, and so on. When we talk about caring for somebody whose health is impaired we often mean different, or additional, things. This might be about supporting people to do things they want, or need to do because the impact of the illness is such that they are unable to do so on their own. For some this will mean providing total care because their condition has deteriorated.

The term ‘carer’ does not always sit comfortably with people who give this type of support because it is often an extension of their relationship with that person. In North America this tends to be called, ‘care giving,’ which helps to distinguish it from ordinary, everyday caring. Many of the people we spoke to talked about caring, in both senses of the word, for their relative, partner or friend with Multiple Sclerosis (MS). Living alongside someone with MS, even if you are not in the same house, could mean supporting them with everyday things like cooking, shopping, cleaning and with personal care like getting in and out of bed, washing, getting dressed, using the toilet. 

The condition of MS affects people differently, and according to the type of MS diagnosed the condition can fluctuate. There may be times when people need a lot of support because they are experiencing a relapse and at other times they will be in remission and want to be as independent as possible. For some who have a more progressive form of MS, their support needs will increase more quickly. This can make caring for someone with MS challenging because of changing needs and no recognised pattern of disease progression. 

Sometimes the role of carer was seen as giving emotional support. Although Christine talked with her friend about helping with practical things like shopping, when he lost bladder control in a public place and was embarrassed she helped him most by ‘comforting’ him to ease his embarrassment and sense of humiliation. On top of the extra domestic chores that he does, David sees himself as a ‘cheerleader’ to keep his wife’s spirits up. For Anthony, too, it is important to support his wife emotionally as well as physically. As a teenager, Nicola felt responsible for supporting her mum when she got upset that her MS was getting worse. 

 

David does nearly all of the household work now and is ‘constantly trying to juggle things to keep us all going, but also to keep us cheerful.’

David does nearly all of the household work now and is ‘constantly trying to juggle things to keep us all going, but also to keep us cheerful.’

Age at interview: 49
Sex: Male
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So not only were we changing the patterns of, we had to change the pattern of what we do at home, like I do correspondingly, well I do virtually everything now, but I mean before it was always 50/50. We’ve always been fairly democratic about these things, and it’s now more 90/10 sort of thing; indeed at the moment, Sandra’s not very well, it’s a hundred per cent. So I’m doing most of the things. But that’s, the domestic thing is just to take the burden off Sandra and also reassure me that she’s not going to fall over, fall into the fire or into the oven, or scald herself or something like that. I would hate that to happen.

Our son is 17, once he finishes his A levels next year, I’m hoping that he can wheee… fly away like his sister has, which will be brilliant so that the time I have to spend on him can then be transferred to Sandra which will be brilliant, because that means I’ve got more time for Sandra and more things, time to do my own sort of stuff. So it always feels like we try, you know we’re constantly trying to juggle things to keep us all going, but also to sort of keep us cheerful. That’s not always easy when you’ve got an illness like MS, because it can lay you flat, it can just all of a sudden knock you for six. And I have to be the cheer leader in a way for the household, which I have no problem with and I don’t need alcohol for that, I can just be myself. Whereas Sandra, I know sometimes it’ll get her down and that’s when I’ve got to try and pull her out of that sort of thing, get her motivated. Got to get her motivated for work which you know, getting up half past five in the morning is an early start for most people and doing that at least three days a week, it’s a lot of effort. So you’ve got to keep cheerful. You’ve got to try to see that things have got to work, and you’ve got to just try to get on, get on with things. So that in many ways is I think where I am at, at the moment. 
 

Because his wife’s self-confidence has been knocked by her MS, Anthony wants to ‘bring her up when she’s down,’ as well as giving her physical help.

Because his wife’s self-confidence has been knocked by her MS, Anthony wants to ‘bring her up when she’s down,’ as well as giving her physical help.

Age at interview: 43
Sex: Male
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Her self-confidence is certainly nothing like it used to be and that has implications for so many things. She’s finding it difficult at work particularly, at the moment. She’s had to stop doing what she normally does for a job and has ended up being put on admin roles, light roles, if you like, because she can’t manage her normal job anymore. 

And that, on top of everything else, has done her self-confidence no end of harm and... It’s just so difficult for her and I have to, obviously, support her as much as I can and be there, physical support, mental support. I’ve got to bring her up when she’s down. I’ve got to gee her up. I’ve got to take her mind off things. I’ve got to give her something else to think about.
 

MS Specialist Nurse talks about the role of the family and about providing family members with the level of support that they need or want to help care for their relative.

MS Specialist Nurse talks about the role of the family and about providing family members with the level of support that they need or want to help care for their relative.

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In relation to the carer it’s very much about what role do they want to have. Do they want to have a hands-on role? Because that, I don’t think we should expect that just because somebody is a husband, a wife or, you know, children. They might not necessarily want to perform that role with the other significant person. So it’s about identifying that first and not having preconceived conceptions that they should be there and available. You know, we’ll look at what the individual’s needs are. So that’s again about exploring the options that are available and about explaining that we do have to refer through Social Services. They will look at, assess what are the care needs, not just what they need but what do they want as well, because it’s very much about individual choices. So it might be that we decide that someone needs a certain level of support but that person might not want that level of support. So we’ve got to balance quality of life as well as safety, if you like. So it’s, it’ll be depending on the role that individual has. You know, there can be extensive packages of care available if that’s what they want. Which means that that person remains a wife, a husband, not necessarily a conventional carer. So that they are able to go and do their job, come home, and be a wife and husband to that other person. So there are extensive packages of care going from one visit a day to, to 24-hour care if necessary.

And that sort of support comes through the Social Services department, does it?

Yes it does. I mean that, that’s changing all the time. So it is, it can be difficult to keep up with what is available, what is means tested, what isn’t means tested. Because obviously financial issues practically are very important. Even if somebody is on benefits, quite often those benefits are being used for everyday practical things that are required.
For some people the role of carer was seen more broadly as looking out for the best interests of the person you support, when their physical care needs were being met by paid carers. Alice’s former partner, still her best friend, has 24 hour care at home and Kay’s brother lives in a care home. But they both see themselves as carers because of their active contributions to the well-being of the person with MS.
 

Kay has done some physical caring for her brother, but the most important thing at the moment is that staff in his care home know that she is responsible for him and that they need to keep her informed about his care.

Kay has done some physical caring for her brother, but the most important thing at the moment is that staff in his care home know that she is responsible for him and that they need to keep her informed about his care.

Age at interview: 38
Sex: Female
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Do you think of yourself as his carer?

I suppose there’s two kinds of carer, isn’t there. Sort of there’s, you know, you can have the carer who’s obviously doing the practical feeding, washing, wiping of things and then the carer who’s looking out for their interests. I mean I’ve certainly done some parts of personal care for my brother and obviously when I go and see him I’m wiping, wiping up dribble or changing something or looking after, looking after something for him probably on most visits. And I used to feed him when I could feed him. But, yes, I mean I care, I’m caring for his well-being. I’m making sure that the people that are being paid to look after him are doing that to their best of their abilities. And the only, you know, the only way you can tell that is if you’re paying attention. Because if I didn’t see my brother from one year to the next then anything could be happening to him, you know. 

I mean I’m quite confident that he’s in a good home and obviously I researched that and I went to visit that and I met the staff. It was the only home that I actually visited but it seemed to tick so many of the boxes. And also I went to see the home a couple of years before my brother actually had to move into the home because I’d read about it in an advert in my father’s paper, like a charity thing. And I’d looked into it as a possibility and thought, “Well, you never know.” And because of all the problems we had with, with sorting my brother’s care out after my father died, and obviously grieving for my father, I didn’t feel like I had the strength to go round to lots and lots of different care homes when there seemed to be one right on the doorstep that did everything that we needed it to. And I kind of thought, “Well, we’ll try it out for six months to a year and see how it goes.” 

But I, you know, I attend resident and family meetings. I speak to the nurses and other staff all the time and they know, you know, that I want to be kept informed about everything that happens to my brother, and they do that. We’ve had a few times over when things have got missed, but, you know, on the whole they know that I’m the person responsible for my brother and they need to keep me informed. And so, yes, I do feel like I am my brother’s carer because I’m looking out for his best interests.
 

For Alice, being a carer means ‘being there because I want to be there. Because I love him and want him to be as happy as he can possibly be.’

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For Alice, being a carer means ‘being there because I want to be there. Because I love him and want him to be as happy as he can possibly be.’

Age at interview: 35
Sex: Female
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I’m just wondering how much you think of yourself as his carer?

I do very much. I say I have a day job and I have an evening job. I say, ‘carer’ almost as a short hand because I think our relationship is quite complicated. Ex-partner, best friend…It is a short hand. I do, no, I do see myself as his carer. I think I’m very proud to be that more proud of that than my day job, to be honest. I think it defines more, it tells more about me than my paid work. I think his carers would probably have an issue with that because they’re paid carers and I think sometimes they resent me being there. I think there are lots of issues between me and them which are complicated, very complicated, but they are paid to be there and I’m not and that is the fundamental difference between us. I’m there because I want to be there. I’m there because, you know, I love him and I want him to be as happy as he possibly can be… So I don’t use the carer word in front of him but to anyone else, that’s definitely how I would describe myself as a short hand but obviously, it goes a lot, it’s a lot more profound than that but yeah, I’m very proud.
Where physical help was needed some people were able to share household jobs, dividing them up on the basis of what the person with MS still wanted to do. Bernard and Paul Y did all the cooking and shopping; their wives were still able to do washing, ironing and some cleaning. For Ian, the responsibility for doing ‘day-to-day stuff’ had grown over time, but he didn’t see it as a burden.

Some people talked about having to ‘do everything,’ but this could mean different things. Kate and Robin do all the domestic jobs, but their partners don’t need help with washing and dressing; Louise’s husband needs help with fastening buttons but otherwise can dress himself. Mike calls himself a ‘full-time carer’ because he feels that his partner needs him to be with her all the time, but they do have paid carers to help her get up, washed and dressed. For many people in this situation of having to do pretty much everything, planning became a really important part of daily life. Kay Z, Dave and Kate all tried to be one step ahead. Karl said that he can no longer go out spontaneously for a drink after work.

For some people, though, MS had led to profound disability and the need for much more help with everyday living. Eric and Tony both talked about their partners now being fully dependent on them and Anita remembers that, as a teenager looking after her mother, she was ‘always conscious that I was my mum’s life, really.’ Eric said, ‘You don’t think it’s going to, but it affects your whole life.’ Tony thinks that a ‘carer’s life develops over the years’ and that now they have got to a stage where his wife ‘lives her life through me.’
 

Tony thinks about caring as a job, always looking out for the best ways to help his wife.

Tony thinks about caring as a job, always looking out for the best ways to help his wife.

Age at interview: 72
Sex: Male
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Well, I, my approach to caring is now, after many years, it’s a job. It a job which has to be done. We know it’s a job that has to be done, because I write to Social Services each year and I say, “I want four weeks’ respite each year. These are the dates I’m going to take.” I don’t ask them, I tell them that this is what I’m going to do. And they have never yet come back and said, “No, that’s not a good idea.” They accept, because of course now in these days I have also had a carer’s assessment. So I think you have to take control of these things and tell them what you need. And so there is always something perhaps that needs to be considered, to be worked on, to work... I mean just recently I know now that when we go away on a holiday I’ve got a, because we have a, nursing beds here, when we go on holiday we need some means of lifting her in bed. So I’ve got a pillow lifter, a bed lifter sort of thing, which is very good. Now I’m contemplating that she may want to go to bed earlier than normal. But then she likes watching television, so I need to get a sort of some means of getting her the television which she can watch when we’re on holiday. These are recent things that I’ve been working on. So it’s not something which you just have to let other people give you a sort of an idea. You actually have to deal with it, think about it as a job. And if you were in a job you would, you would be assessing things that go along, changes, improvements and that sort of thing as you go along. And if you take this approach, if you like, to caring, as a job, then it becomes much easier. And when things happen that she coughs her food all over the floor, she has an accident in bed, it becomes routine. You’re, you’re, you, you’ve done it before, you know what’s going to happen, you have a routine to deal with it. And you don’t get annoyed, and so she doesn’t get embarrassed, so to speak. Do you, do you understand what I’m getting at? And it’s very important I think to make sure that she doesn’t feel that she is giving more trouble, more work than she’s doing anyway, you know. That’s what I mean by it being a job. Now I know I can’t go out in the evening, so I do other things, you know.
 

Recalling her teenage years, Anita talks about some long term impacts on her of being her mum’s main carer.

Recalling her teenage years, Anita talks about some long term impacts on her of being her mum’s main carer.

Age at interview: 37
Sex: Female
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And I think that, for me, is don’t realise about the impact of caring for someone. Because it really isn’t just that time, you know, when you’ve got that person that you’re caring for. It’s the long term effect of what that means afterwards. And for me it, like I say it, it impacted my confidence because I thought I was no good academically, I didn’t get a very good job It impacted my relationship which didn’t last, which should have lasted and it’s probably worked out better for us both now but, you know, I think that MS destroyed that and I think it destroyed a part of me really, a part of my childhood, a part of my adult life. I think it has had a, you know, a really lasting effect on me. And I think it has, even things like when we were talking about presenting earlier for the board. Now that’s a big deal to me because growing up I’ve not had anybody that’s made me feel OK. You know, the whole I’m OK, not OK kind of, you know, I’d really thought that, you know, I’ve just not been in a very good place. So naturally not a very confident person and paranoid that that sort of comes out and, you know, that people will pick up on that and that I’m not good enough and all of those things that well probably everybody experiences but I think that because of some of the impact MS had on my life have meant that I have grown up entirely believing that, you know, I just don’t have that confidence.

And I’ve gone on to do two degrees since and I’ve got a good job and, and I own my own house myself. Well actually I’ve a got a few houses, so I’ve actually turned it around and none of that means anything to me because it’s all material. But I guess what my point is that even though I’ve got all the evidence that suggests that I’ve done well and I am capable my fundamental belief I think which is a direct result of caring for somebody and, and just early experiences of I’m no good at school, I keep being told I’m no good at school, nobody really cares, actually impacting on me. So even though in my adult life you can rationalise it for whatever and on whatever level and I don’t really understand it I can sit there and go, “Well, you know, I am good enough”, but actually I think that it’s such a profound thing, it’s so deep inside me I’ll never change that. 

And maybe that’s just a part of who I am and would have always been but genuinely I do think that, you know, if you’re not in a family where you’ve got people that are looking after you and putting their arm round you and giving you that hug and saying, “Well done today, that was really good, really proud of you”, if you’re not hearing those words and all you’re doing is constantly clearing up after somebody, constantly giving them that hug actually and telling them everything’s going to be OK, when you’re 11, you know, you’re 15, you know, you, you don’t know that it’s going to be OK and it really doesn’t feel OK. You, you’re, playing the parent so you just grow up really yeah, completely vulnerable and you know, unconfident I think is, is what I’ve said. And yeah, I think that is how it made me feel.
Not everybody we spoke to thought of themselves as a ‘carer’, even when they talked about caring, but some peoples’ idea of themselves had changed from, say, being a husband or wife, to being a carer. Nearly everybody took on this role of caring very willingly, even when it was hard, seeing it as part of their relationship. For Betty the role of carer was something that she felt had been forced on her by circumstances; and it’s a role that she ‘hates’. Some people were defined as carers because of the welfare benefits which they received, such as Carer’s Allowance.
 

Chez’s husband had MS before she married him. She has always seen herself as his carer as well as his wife.

Chez’s husband had MS before she married him. She has always seen herself as his carer as well as his wife.

Age at interview: 42
Sex: Female
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Yes. I have always been my husband’s carer. I will always be my husband’s carer. I may not care for him in the sense of now being the absolute carer for his day to day needs but I care for him in the sense that I give him the emotional support We talk, we, we support each other and I think the caring mode is still there but it’s in a different context. So the care mode will always be there, it’s just changed from the day to day caring side to being the supportive caring side. And that will always continue until he passes on.
 

Kate rejects the idea of herself as her husband’s carer. She says they’ve had a long, loving life together as husband and wife and she doesn’t consider what she does to be ‘caring.’

Kate rejects the idea of herself as her husband’s carer. She says they’ve had a long, loving life together as husband and wife and she doesn’t consider what she does to be ‘caring.’

Age at interview: 75
Sex: Female
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And I’ve never really considered it caring. I still, I actually still object to the word, to the word carer, very much so. And when people say to me, “You’re his carer” I say, “No, I’m not actually. I’m his wife. I’ve been his wife for a long time.” So we don’t look at this as caring at all.

I didn’t marry my husband to care for him. We married each other because we loved each other, not to care for each, and we married each other, and I know it sounds old fashioned, but for richer or poorer, and better or worse, and in sickness and in health. We got the one bit of it. But we’ve had a, we’ve had a long loving life. So I’m not, I don’t consider it caring. And I get really offended actually if people say to me, “You’re his carer.” I’m not actually. I always say to them, “I’m his wife. I‘m not his carer.” I suppose I get offended about this partner business as well. I know it’s all politically correct. But I, if they, they say to me, “Your” you know, “Have you got your partner?” I say, “Well, actually I haven’t got one. I’ve got a husband.” I suppose I’m a bit bolshy like that. Well, I just object to it. I didn’t marry somebody to care for them. I don’t, I actually don’t consider I care for him. I probably do. I mean, he would do a lot more for me if he could, I know he would. And he does what he can for me. So you just do what you can for each other. You know, you don’t, you don’t, you just, that’s life, isn’t it? You just, it’s how the cookie falls, isn’t it, really?
 

Louise definitely sees herself as her husband’s carer, now, though she resisted the label of ‘carer’ for quite a while because she didn’t want to admit that their relationship had changed.

Louise definitely sees herself as her husband’s carer, now, though she resisted the label of ‘carer’ for quite a while because she didn’t want to admit that their relationship had changed.

Age at interview: 49
Sex: Female
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Well, I am a carer, definitely but I suppose for a long time I kind of resisted. I do still resist it. I mean, you know, I don’t tell a lot of people, particularly in my workplace, that I am a carer. I’ve kept that private. You know, that’s been my choice. My friends know and obviously, my family know and increasingly I, just because of the nature of the disease as Chris has got worse, obviously, my input has increased of what I’ve had to do. Initially, it was fine but now I, from the beginning of the day to the end of the day, although I work I am, you know, responsible for Chris. I have to make his breakfast before I go to work. 

I make sure his clothes are out, that there’s food for his lunch and then, obviously, come home in the evening and around to cook in the evening because what he can do for himself is very limited. But, you know, there is an aspect of being a carer and I’m sure people resist that sort of come a bit of a, kind of miserable term I think and I don’t want to be like that I suppose. So...

Can you say a bit more about why it has that connotation for you, being miserable?

Well, because, I mean, it is a tough call doing it and, you know, your relationship totally changes. You know, I, you know, whereas I was a wife, I do feel much more, you know, our relationship obviously, has changed and I am a carer and I suppose it’s not something that you, well, you want to admit to yourself or to other people or but it’s a fact. It’s it is a different, yeah, you’re giving up one aspect of your you know, your life, your personality or whatever to be something that you haven’t chosen to be and, yeah, you are suddenly having to worry, you know, or do things that you’d never have thought you would have to do and it, you know, it is difficult. So first of all you think you won’t do it. Well, certainly for me, I thought, “I won’t be able to do that. I won’t be able to care.” And, you know, but, but actually, I’ve, you know, you actually you actually do manage to. So but you need to have breaks. I would say that, definitely. That’s the kind of thing that you need to and have time for yourself. 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.
 

Kay talks about the tension between being a ‘wife’ and a ‘carer’.

Kay talks about the tension between being a ‘wife’ and a ‘carer’.

Age at interview: 49
Sex: Female
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Being a carer does have an impact on your family relationship, definitely. I have found it very difficult to function as a wife at the same time as being a carer. And with a chronic condition and particularly with a progressively debilitating condition, your role as carer comes more and more to the fore as time goes on. And I would say that I am less of a wife. I see myself less in an emotional role, supporting as a normal wife would, and more of a carer. I’m a very practical person and so possibly that has driven me in that direction. 

So, you know, I don’t have any problem with clearing up after an incontinence issue or something like that. I go into practical, carer mode. It’s a struggle. I think there was a transition time when I was trying to do both equally well, but I realised I couldn’t keep it up. And so I sort of accepted in my own heart that actually he needed a carer and it was more important for me to be that carer than anybody else. And so I accepted that role. 

But love’s a funny thing. You know, it goes through different chapters anyway the longer a relationship goes on. But I see my demonstration of love as being commitment at this point that, you know, we’ve been married twenty-three years, eighteen of which he’s had MS, and I’m still there, hanging on in sort of thing. And so, you know, that’s my way of commitment to my marriage. But it looks very different from an ordinary marriage.
Mike said he was ‘caring, but not a carer’; Ian and John X described themselves as husbands rather than carers. Like Kate, Patience called herself a ‘wife,’ not a carer. Eric said he is now ‘75% a carer, 25% a husband.’ For Karl, it varied depending on how much he was doing to help his partner at any one time. Betty had become, reluctantly, a carer.
 

Betty had made a conscious decision to become her partner’s carer. But she felt unprepared for the role and is angry that there isn’t more support for carers.

Betty had made a conscious decision to become her partner’s carer. But she felt unprepared for the role and is angry that there isn’t more support for carers.

Age at interview: 58
Sex: Female
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So I thought, ‘Right, that’s it. I’ve got to become a carer.’ But I didn’t know what it involved, I really didn’t, because nobody tells you. And that’s when it all sort of kicks in, the enormity of it. You’re not given training at all. I think with something like MS you should be given training. I mean I didn’t know the correct way to pick him up if he fell over. There ought to be guidelines set down, you know, maybe a course , I don’t know, I’d go on a damn course. I’ve only found out through asking other carers, you know, well what happens........ and it’s, ‘Don’t worry about it. The best thing to do is leave them on the floor, you know, cover them up make sure they’re okay, right, maybe after a few minutes, maybe half an hour they might have enough strength to actually try and get up.’ But nobody told me this. It was another carer and I just think it’s wrong, you know, we are human beings here. I don’t know what else to say about caring. I absolutely hate it. I loathe it. And if I had lots of money I’d be more than happy to say, ‘Right,’ pay somebody, ‘come in, you do it,’ but unfortunately I can’t and I’m like the majority of other carers.
Sometimes people’s health was affected by caring for a person with MS, and sometimes people’s health problems could have an impact on their ability to care. Some people worried about what would happen to their relative if they could no longer look after them.

A lot of people suffered, to varying degrees, from back or knee pain caused by lifting the person with MS, in some cases over many years. This has led to so much pain for Chez, that she is now prescribed morphine, and has had to ‘step back’ from doing the physical care for her husband.
 

Chez has pain in her back and knees from 20 years of physically caring for her husband. She accepts that she is going to need help with that side of things now, but feels that she is letting him down.

Chez has pain in her back and knees from 20 years of physically caring for her husband. She accepts that she is going to need help with that side of things now, but feels that she is letting him down.

Age at interview: 42
Sex: Female
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I have a lot of conditions myself medical conditions that have been caused through my husband but not by my husband if you like. Through looking after him on my own for 20-odd years I’ve got a lot of back problems. I have a lot of knee problems caused by lifting him off the ground. And when you’re lifting a dead weight it is very hard And that has caused me an awful lot of pain And now because of that I’m on a lot of medication and I’ve basically been told by my GP that I’ve got to start looking after myself more now rather than looking after [name] or feel as if I’m looking after [name] all the time. It’s very, very hard when you’ve been looking after a person for so long to actually take that backwards step and actually let somebody else look after him. And I’m going to have to do that, I don’t have the option of whether I can or cannot, I am going to have to do that because I’m on drugs like morphine now. So it does make the situation more difficult and realistically I can’t look after him all the time. So it’s come to a stage now where I have to let others in and that is difficult. And it makes me feel that I’m letting him down. Or that, that’s how I feel, is I feel as if I’m letting him down. Do you think he feels that you’re letting him down? No. No. We’ve actually talked about it. He understands that I have to take a backward step He does have short-term memory loss so we do have to talk about it quite often but it is one of those things that he doesn’t have a choice in and I think he’s accepted that now. It took a long time for him to accept that and he knows that if he does come home that he would have 24 hour care because I couldn’t do the turning, I couldn’t do the lifting, I basically can’t do anything for him now. Apart from doing basic things like cooking and making dinner and stuff. But the lifting side and the turning and the showering, those intimate things that I would have done for 20-odd years I cannot do that now. And that is through looking after him.
Louise, Kay, Mike, Eric and Tony were all active in trying to keep healthy by exercising regularly (yoga, Zumba, walking, swimming, golf). Several people talked about the lack of ‘me time’. For others, having a break occasionally and doing something for themselves were vital to being able to keep doing their “caring” role. Kay points out the need to look after your own emotional and psychological health, too.
 

Kay’s health is good, apart from a strained back. She exercises regularly and also looks after herself emotionally to avoid, ‘burn out.’

Kay’s health is good, apart from a strained back. She exercises regularly and also looks after herself emotionally to avoid, ‘burn out.’

Age at interview: 49
Sex: Female
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There was one time, I, I strained my back because I’d been nursing [name] and I’d been nursing my husband and I’d overdone it. And so I needed somebody to do the driving for me for a few weeks because I was in too much pain to drive. And the person I asked to do the driving was delighted to be able to help and would have felt dreadful if I hadn’t. So, you know, they really do appreciate you being honest and open, as well as giving yourself time to recover from whatever it was that you needed help with.

Reference to a strained back reminds me to ask about your own general health and how you keep healthy and fit?

My own health is actually very good. I’m very blessed. Apart from having strained my back from trying to lift in a way that was probably not a sensible idea, my general health is good. I’ve borrowed my husband’s physio from time to time to have treatment on my back. He is again very supportive and appreciates the different roles that he plays in treating my husband for his MS and keeping his body mobile and treating me in a more holistic way as a carer. 

I think it’s more to do with emotional health and psychological health that I need to be really careful about looking after myself. Because the routine would tend towards burnout. The longer you care, the more your role increases as a carer, the more likely it is that you will burn out. So I do have a weekly Zumba class, which I’m passionate about. I think Zumba is fantastic. It, it really works you out hard and it’s actually quite therapeutic, I think, to do that. There’s a real good feel-good factor afterwards. 

And just time away from your living environment is important. I try and go away two or three times a year maybe, just for the weekend, to leave it behind. I think that’s important. Mums don’t get sick, so, you know, to a large extent you just battle on through. I think another thing though is just learning to accept a different standard for yourself if you are going through a period of, of strain. You know, the world will not come to an end if the kitchen floor doesn’t get cleaned for a month. Whereas I would aim to have my house looking clean and tidy and, you know, all the laundry up to date and all the rest of it. 

But you just have to prioritise. And sometimes you go through phases when you’re just surviving and, but to just let yourself, don’t beat yourself up about that. That’s fine. Other people don’t know what you’re going through. You know, whatever it looks like on the outside doesn’t necessarily reflect the reality of your day-by-day situation. So, yes, give yourself a break, on all sorts of levels.
Some people talked about having stress, low mood and taking antidepressants. Other people are living with long term health problems such as bipolar disorder, hypertension, arthritis, spinal injury and multiple myeloma (cancer of the bone marrow). 

Some people talked about their experiences of having support when they became ill unexpectedly. Robin has a long term health problem, but he also accidentally punctured his lung and had to go into hospital. He was able to get help from social services to look after his wife. Kate wasn’t as fortunate in getting help when she was recovering from treatment for breast cancer. In Betty’s experience, too, ‘You can’t become ill, nobody takes over.’
 

Because Robin had already had a carer’s assessment, the social services department were ready to step in when he had to go into hospital.

Because Robin had already had a carer’s assessment, the social services department were ready to step in when he had to go into hospital.

Age at interview: 72
Sex: Male
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Find out if you know where your social services department are and ring them up and explain what your problem is, ask them to come along and have a look at your wife and they’ll even do an assessment on all your wife’s needs or your husband’s needs or whoever. which can be very useful because then they know if for instance the carer falls ill, carers do fall ill that they’ve got somebody on their books that’s going to need emergency looking after, so one phone call will bring them round hot foot. I had a bad accident last year where I fell downstairs and punctured my lung, I had to spend a week in hospital and they came in and were very helpful then. So never despair, there’s always a way out, apart from the final analysis of course where there is no way out for any of us.
 

Kate is quite critical about the lack of backup for when carers are ill.

Kate is quite critical about the lack of backup for when carers are ill.

Age at interview: 75
Sex: Female
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I have one or two gripes really about what goes on. He had a terrible fall off a wall here, let me think, three years ago, and it all came at a terribly bad time. I’d just been, I’d actually been diagnosed with breast cancer and I’d been out of hospital after losing half my breast for just over a day, and he fell off the wall. I now realise of course it was stress. He was worried about me. But I somehow did pick him up. And I thought he’d broken his neck because he’d fallen between two... And because I was ill myself I wasn’t really thinking straight, otherwise I’d have got an ambulance out. But I didn’t. So I managed to get him in to the house. And we had no co-operation off the doctors whatsoever. I was appalled actually. They just sent round some, well, I did actually phone them and say he’d had this fall and they said, “Oh, just let him go to bed” you see. 

And they didn’t seem to associate the fact that I was they didn’t re-, I don’t think they ever read anybody’s notes actually, I’ve come to the conclusion. That I actually wasn’t supposed to be really doing much at all because I’d only just had quite a serious operation, and I was trying to look after him, sort myself out. And they sent some, some locum doctor round. He said, “Oh, I should just take a couple of paracetamol if I were you and you’ll be all right.” 

Now we have now discovered that, that fall, he has just recovered from. And all through the time I was going for chemotherapy and radiotherapy we were, I was having to drive. I shouldn’t have been driving, but I couldn’t leave him behind because I can’t leave him in the house on his own. So it all became, and at the same time my sister wasn’t here who, she was away for quite a long time, so I’d got no one I could call on at all to help. 

And that’s where I think a lot of the systems fall down. There is no, my biggest worry is always being ill. And I think most carers have the same problem. Our biggest worry is what happens if we are ill. And there is no backup from the medical profession whatsoever for this. And I think there should, I actually think there should be. I think the medical profession are at great fault here, that they don’t realise that the person looking after that person can be ill and need some help. And I, and this is really a serious worry. I mean we’re old, we’re well into our 70s now, and it is becoming quite a serious worry. 

And the really nice people actually were the cancer people. When I told them that I had a husband with MS, they fast-forwarded my operation straight away. They said, “Right, we’ll get you done straight away. And would you like us to make arrangements for your husband to go into care?” And I couldn’t do that actually because I knew, I just knew it, I just knew it might finish him off actually, the shock of me being ill. Because he was shocked. And because I’m quite healthy. I don’t get ill very often. And I just think it, it wouldn’t have done him any good. So I said, “No, we’ll manage.” Now somebody surely could have sent someone round to see. Surely somebody in our own medical practice, because the cancer specialist must have told them, could have organised something. But they didn’t bother. And I think they’re at great fault.
Caring roles were temporarily reversed between Ann and her young daughter, recently diagnosed with MS, when Ann got breast cancer a few months later.
 

Ann’s daughter, recently diagnosed with MS, was worried when Ann got breast cancer. They had a ‘horrendous’ year, but they have both got through it and are looking forward to the future.

Ann’s daughter, recently diagnosed with MS, was worried when Ann got breast cancer. They had a ‘horrendous’ year, but they have both got through it and are looking forward to the future.

Age at interview: 55
Sex: Female
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I’ve coped with it I think in terms of mums cope with everything for their children in that you want to be there for them, you want to be strong it’s been quite hard sometimes to watch [name] go through things that I would have rather I had to go through then she’d gone through. But the twist in this tale is that her diagnosis was in October and that was, so we were all focussed around her, and then in the following February/March I got diagnosed with breast cancer, which then was like being put on a speed train, you know, four weeks later I was in having surgery then radiotherapy then chemotherapy, you name it you get it. 

And so, of course, that was devastating to have to tell [name] my daughter and my son because I wanted to protect them both. He was doing his final, his masters, she had this diagnosis so that, that was very, very hard but there’s no way you can’t do it. But then what happened was, was she became the parent, she totally stepped in and wanted to come with me for treatment and made sure I was okay, carried on working and then was being my support at night. And so we have a very, very changed relationship because I suppose I’d always been the one that was the nurturer, the carer and then all of a sudden she was looking after me, worrying about me and saying well what’s the doctor told you today, are you okay and why are you doing that? And so, and she has said in retrospect that it did take her mind off her but it did make her worry even more about what would happen if I wasn’t here because obviously people talk about cancer and immediately think doom and gloom whereas if you’re going to get any cancer, get breast cancer because it’s highly funded, all the research and the treatment you get is, well the treatment I got was absolutely top class.

So, in terms of that it was a huge thing to have to tell a young, you know, a young girl that her mum’s suddenly got breast cancer. But we’ve both got through it, we had a horrendous year but we came through that year, went on holiday, she got engaged, she’s moved out, she’s living independently, I’m through my treatment, everything’s fine and so we’ve got an awful lot to look forward to and I think really that’s about, that’s how we’ve got through it, helping one another.
(For more see ‘Dealing with emotions’).

Last reviewed March 2020.
Last updated July 2018.

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