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Louise

Age at interview: 49
Brief Outline: Louise’s husband was diagnosed with primary progressive MS in 1997. They have learned to live with the illness and to adapt, though Louise emphasises that MS has totally changed her life.
Background: Louise, age 49, works as a conference manager in higher education. She is white British, married, with two children in their late teens.

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Louise’s husband was diagnosed with primary progressive MS in 1997. Before that, he had noticed that he got more tired when exercising than he would expect, and would occasionally lose his footing on the running machine. Louise noticed that he would be tired and would tend to withdraw from family activities. It was after a family holiday when he spent long periods in bed that he sought medical advice, had a lumbar puncture and was given the diagnosis. They were both devastated at first by the diagnosis but over the years have learned to live with it and to cope. Louise emphasises though, how much her life has changed as a result of living with somebody who has this form of MS. 

There was little support available for them at first but in the last few years this has changed, with very good support, for example, from a local MS Specialist Nurse. In fact, Louise speaks highly of local services and the integration between their GP, the specialist hospital and the local authority. They have a very good GP, who has known the whole family for 20 years, and is very supportive, for example, in making home visits and with giving longer appointments than usual for Louise if she needs to talk.

Louise has adapted her working life to fit round her children and her husband’s needs. She gave up managing her own small business in the early years of her husband’s illness in favour of working in a larger organisation which would reduce the stress of having sole responsibility. She works locally and has the reassurance of the organisation’s policies on carer’s leave if she should need it. 

In the last few years her husband’s mobility has declined and he has increasing problems with, for example, bladder symptoms. The only medications he takes regularly are Baclofen, to help relieve muscle spasm, and paracetamol for frequent headaches. Encouraged by Louise and by their GP he did take part in a trial of a cannabinoid drug but withdrew because of the side effects. He increasingly experiences weakness and fatigue, so much that he doesn’t like to go out now. He continues to enjoy the company of friends at home and to make visits to his large family.

Louise sees herself very much in the role of ‘carer’ now, as her input has gradually increased, though she has resisted thinking of her life in those terms. Because her husband can now only do a very limited number of things for himself she is responsible for helping him from the beginning to the end of every day. Louise describes this as a ‘tough call’ which she wasn’t sure she would be able to do. She describes the importance of her good network of friends, and of having time to herself, so that she is not just a ‘carer’.
 

Louise’s husband has primary progressive MS with a very gradual decline and over the last five years his mobility and other symptoms have got a lot worse.

Louise’s husband has primary progressive MS with a very gradual decline and over the last five years his mobility and other symptoms have got a lot worse.

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And he was diagnosed, at the time, obviously, had a lumbar puncture and we got the diagnosis. At the time, obviously, he was still working but he was diagnosed with progressive MS. He hasn’t had the relapsing and remitting type. He has always just had a very gradual decline. He has sometimes when he is particularly bad, and has episodes when he is, you know, pretty disabled and then other times, he manages to get around a little bit more. But, realistically, over the last say four or five years he has got a lot worse in terms of mobility and yeah, just in terms of symptoms.

Like I said at the beginning of learning to live with MS, you know, like I said, like living with cancer or living, but it is that you think that you’re not going to, as you say, from the outset, yes, go home and you’ve got progressive MS and that’s it. But you do learn that there will be bad times but there are other times where things aren’t so aren’t so bad but you do have to accept that, you know, your life will be, as a, I think from my point of view, as a wife, partner, just does change completely, yeah. You know, you, I can’t pretend otherwise. From my point of view, that’s how it’s panned out. So initially, maybe for the first few years, you know, but once you’re at the role becomes much more of a carer it is different yeah, yeah.
 

At the time, Louise thought the diagnosis of MS was worse than cancer because there was no cure. But that was many years ago and they have learnt to live with it.

At the time, Louise thought the diagnosis of MS was worse than cancer because there was no cure. But that was many years ago and they have learnt to live with it.

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And I remember, actually, the evening he was in there, he stayed overnight, that the nurse had given him a book about MS, so it was kind of fairly obvious that’s what he had but none of us, I didn’t know anything about it at all. Our children were very young at the time. I remember just going to visit him overnight and thinking, “Oh, well, it’ll be fine. It’ll be some.” You know, but then obviously, he had, was given the diagnosis the next day and came back and I remember being absolutely devastated. So because it’s the kind of very well, like a final, there’s nothing that you can do about MS. 

Cancer, I always have thought and always said to people, cancer, you think oh, well, you can kind of fight it and you can have treatment and with MS, really there isn’t, there are treatments available but there is certainly not a cure and I think, you know, I remember just being extremely, both of us being, you know, devastated when we first got the diagnosis. But, of course, since then, so that was ninety seven, that’s really, you know, however many years ago that is, we have managed to learn to live with MS or Chris has learnt to live and I’ve learnt to cope to, you know, look after him, to some extent.
 

Louise has told friends about the diagnosis but she thinks there is no need for her employer to know.

Louise has told friends about the diagnosis but she thinks there is no need for her employer to know.

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Are there any particular reasons, other than what you’ve talked about in terms of wanting to have a normal life? Why you don’t want people that you work with to know?

Yeah, because I don’t, I suppose I don’t want them to feel sorry for me. And I don’t want them, I just have my professional life and it, you know, at work I’ve got a few friends and I have told one or two, I’ve, I’ve told one person actually, at work, and they’re aware of the situation. But, you know, I go to work, have my working day and that’s kind of a separate life from my home life and, at some point, you know, I might obviously, if when things get worse and I might need time off more or but then of course, I will, you know, have to tell them but, for the moment, I sort of think it’s my business and I certainly don’t want people to think, you know, I can’t do my job properly because I’m worrying and needing to run home. You know, there is that aspect, definitely, that, you know, I just like to go and do what I need to do and, yeah, yeah, so, yeah. That’s the only reason really. I mean all my friends know, all my sort of long term friends and it’s not kind of a secret but it’s just, yes, from the work from the work front I think it’s easier just to, you know, let it, let things carry on as they are for the moment. There’s no need for people to know. 
 

Louise decided to give up the stress of running her own business to work in a bigger organisation where she could get more support if she needed it.

Louise decided to give up the stress of running her own business to work in a bigger organisation where she could get more support if she needed it.

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When Chris was first diagnosed I had sort of run my own business, small business but that was quite stressful because it was just a small business. I was the one that had to be on hand, in charge, around all the time and I just decided, after a little while, obviously, had two young children and then he stopped work and was at home that I needed kind of to be back in a big company with all that support and so that’s what I chose to do. 

So now I’m working locally so that I can come home quickly if I need to and there’s a good policy of, you know, I know there’s a good policy of if I need to take time off to look after somebody, if there was a crisis or whatever that that is definitely, it’s an it’s an organisation that is good about that. But I don’t have to worry so much about, you know, it’s a job that I’ve chosen to do, that a job that I can go, do it and not worry about it. Whereas my other job, when I was doing my own thing, I worried about it and I can’t worry about everything. So I can’t worry about family and Chris and work and, yeah, so that was and that was a good choice for me to do that. So although I like it, I mean sometimes we’re busy but there are times when I can just switch off when I come home and I don’t worry 
 

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.

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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.
 

Louise wanted to carry on a normal family life. Neither she nor her husband wanted to mix with other people who had MS.

Louise wanted to carry on a normal family life. Neither she nor her husband wanted to mix with other people who had MS.

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I don’t think for me I would I would want to go to, I mean go and talk to people in a sort of an MS group or something like that. That just wouldn’t be what I’d want to do and that’s partly also because of Chris’, of my husband, he definitely, at one point ages ago the GP sent someone to collect him, who arrived with a bus, to say they were taking him to the MS local group and he just flatly refused to go and he definitely, would never, I know he wouldn’t and I suppose just because that’s the way he wants to be, I’ve just been the same really. 

Yeah and when we and when you go to hospital, for instance, on various medical appointments throughout, say, two or three times a year and then you are with a lot of people who, you know, at the MS clinic or whatever, I know he always comes up and says, “Oh, wasn’t that depressing.” I don’t mind. I talk to people and, you know, but I know he finds it, he just he also doesn’t want to be, I suppose, someone with MS. He’d rather he’d rather just be him and at home with his family and, yeah, and try and carry on pretty much. I mean all of us have tried to carry on as much as we have been able to as we would have done, you know. We haven’t wanted to move. You know, my parents spend the whole time saying we should go and buy a bungalow somewhere but our children have gone to the local schools, we’ve got loads of local friends, we’ve got a good GP, near where I work. So why would we want to move? So instead we’ve got to, you know, try and sort out our house to sort of fit, you know, Chris’ needs more and make it more accessible.
 

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.

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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. 
 

Louise has a very good relationship with her GP, who gives continuing support to the whole family.

Louise has a very good relationship with her GP, who gives continuing support to the whole family.

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Can you say a bit more about what makes a good GP, for you?

Yep, I mean our GP has known the whole of our family for probably twenty years. So my daughter’s twenty now, yeah, so for since I was pregnant, but she, so she definitely knows us. She will spend a lot of time in appointments. I mean sometimes I’ve been and seen her and I’ve realised I’ve been there for forty minutes. I mean I don’t go often but when I do go I get my forty minutes, whereas it says very clearly, ten minutes maximum. 

So she’s great. She’ll talk. She comes, does home visits, which is, I think, quite rare these days, not often but if there’s been like a crisis, there have been crises over the years of, you know, falls, broken shoulder, you know, bladder issues. When there has been a crisis and I’ve phoned, I can phone her. I have phoned her sometimes in her surgery and she’s come round just to sort of check up on how things are here and to, actually, probably give him a bit of a talking to. So because he has always been quite resistant to say the drug trial, she encouraged him to take, to participate in that 

But I think she’s just good because she she’s aware of our whole family. She knows the children as well and also, you know, both the hospitals that we go to are nearby as well. So I suppose there’s a good link between them all and, yeah, and I think she’s quite open minded. She’s encouraged, there was some kind of, as I said, a drugs trial, she’d encouraged that and has certainly phoned up and arranged for physiotherapy and that kind of issue if required. 
 

Louise would rather not think about a future in which her husband becomes more disabled.

Louise would rather not think about a future in which her husband becomes more disabled.

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How far ahead into the future do you look?

Well, I don’t think you can look very far ahead because the whole thing with MS it is such a kind of erratic disease and so, for instance, when we’ve been thinking we’ve been thinking, what are we going to do about living conditions, you know, and bathroom and toilet and all that, actually, probably for about four years and worrying about it and thinking, “Well, we can’t really afford it and we’ll manage without.” And then every summer, when it gets hot, my husband falls over and has spent a few nights on the floor because I can’t lift him up and my son and I have tried to lift him and we can’t and so, or the ambulance has had to come and lift him up. 

So we I mean we were talking about planning, yes, sorry and so we’ve thought about it and worried about it and thought, “What can we do?” And then, actually, you know, it was my GP, I went and saw her and she just said, “Well, don’t worry about it and, you know, don’t worry what’s going to happen in two years, three years. Just work out what you need to do now and get on with it and things will work out.” And, in actual fact, that’s what, I came back and said, “Right. Well, that’s what we’re going to do.” So yeah, I don’t think you can, you can’t worry. 

If you allow yourself to worry and think things are going to get worse and, you know, Chris will become more disabled and we’ll need carers or, yeah. You know, I’d rather not think about it. I’ve kind of had to, I’m making myself aware in the short term that there are things we need to do quite soon to make things easier for him and obviously, easier for me. But again, I think it’d be too depressing to really think, you know.

I mean sometimes he has problems eating and swallowing, you know, and I, obviously, can cut his food up or whatever but he does sometimes, you know, have problems with that and, you know, he’s said jokingly, “Oh, well, one day I won’t be able to talk or I’ll choke or.” You know, so but anyway, I would rather not worry about it at the moment. I mean when we have crises and things like that happen, then of course, it is very shocking and stressful. I don’t sleep and I’m worried and the crisis kind of calms again and we carry on kind of as normal again for a little bit, you know.
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