Carole

Carole spent her teenage years as the main carer for her mum, who had a rapidly advancing primary progressive MS. They were years of secrecy and isolation in which no one talked about the situation. Carole now has secondary progressive MS herself and is much more open about talking about it with her own teenage son.

Carole’s mum was diagnosed with primary progressive MS when Carole was about 13 or 14 years old. At first she and her two sisters were told that their mum had palsy’ but later their dad told them it was Multiple Sclerosis. After that, nobody in the house talked about the illness at all, despite the illness advancing rapidly to leave Carole’s mum after a few years with no mobility and no speech. Carole soon became her mum’s main caregiver as their dad worked long hours at two jobs, Carole’s twin sister busied herself outside the house with voluntary work (she later became a social worker) and their elder sister simply refused to acknowledge the illness at all. Carole describes living with MS as a secret’ in the family. Her mum rarely went out, except to a day centre and they received no help at home, beyond nurses visits to dress pressure sores. Two social workers (Carole learned who they were later) came one day and asked if she would like to talk about her mum. As they were strangers to her, Carole declined.

As a result of all this, Carole spent her teenage years feeling completely isolated. She became quiet and shy, though still enjoyed spending time with her friends, and tried to be good’ to make life easier for her mum. She studied hard at school and gained enough qualifications to go on to University. By this time, her mum was in a long-stay hospital and one day Carole’s dad phoned her (she was living in the family home; her dad had formed a new relationship and moved away) to tell her that her mum had died. This was a great shock to Carole as she did not even know her mum was ill. She assumes now that her mum died from pneumonia. Her elder sister did not attend their mum’s funeral, which was small and private and, to Carole’s intense annoyance, conducted by a vicar who hadn’t found out anything about her mum and talked about her having had a wonderful life,’ which was untruthful to Carole’s experience.

Carole feels that the experience of looking after her mum has made her more caring and, in reaction to the isolation and secrecy surrounding the illness in her childhood, she is much more open in communicating with her son and her friends about her own MS, which began in 1995, after her twin sister died and just before her pregnancy. Carole was terrified that she would decline as quickly as her mum, but she has relapsing-remitting (now secondary progressive) MS and the progress of the disease has been slower and less debilitating than it was for her mum. Over the years she has been reassured that her own MS will not necessarily mirror her mother’s illness. From consultations with a neuropsychologist (a clinical psychologist with special interest and expertise in neurological conditions) she has been able more fully to acknowledge the great difficulties of her childhood. Carole is proud of what she was able to do for her mum, though she wishes she could have done more, and of how she has learned to live with the emotional and psychological pain of it all.

Carole was told the name of her mother’s condition but nothing about how the illness would develop.

Age at interview 53

Gender Female

Looking back, shed been staying late at work for a lot of the time. She was a secretary and, in those days, it wasn’t computers so I think she must have been like retyping letters again and again because she kept making mistakes because it’s, you know, it’s hard with the hands to do the typing. And so that’s yeah, we sort of, I remember thinking it’s a bit strange her keep staying late at work and nobody said. In those days, people didn’t talk about things quite so much as they do now and our family, in particular, was very, very quiet about things and when she was diagnosed they just said to us, my dad said, Oh, your mum’s got MS, well, Multiple Sclerosis.

And, and that was it really. We didn’t hear, they didn’t talk any more about it and because of the way they were we didn’t really ask questions and I mean I’m completely opposite. I tell everyone about things, about me and I tell, you know, I ask questions and things but, in those days, for some reason, we just didn’t. And I remember thinking all, all that we knew about it was that the, the cellist Jacqueline du Pre had MS and that’s the only thing that I knew. And in those days, there weren’t books or I mean there might have been books but we didn’t have access to them or computers and things for the internet to find out about it. So all we knew was that our mum had Multiple Sclerosis and, and that was it. Didn’t know how it was going to develop or anything or anything.

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Carole felt as though she wasn’t allowed to talk about her mum’s MS and had to keep it all bottled up inside.

Age at interview 53

Gender Female

I remember one time at school, I was in a science lesson and a wasp crawled up my leg, up my trousers and stung me and I just, I started crying.

I mean it hurt but it’s, I just start, I burst into tears and started crying. I think it was all the emotion of everything that was going on and the school rang my dad , rang home and asked if I was okay. They explained what had happened and that and he told them about our mum. But then, still, nobody came and talked to me from school about it, which I think now they would do, well, I hope they would do. But then again it was, no, no one asked. No one asked anything about her and so it was as if we weren’t allowed to talk about it and had to keep, keep it all, you know, all bottled up inside really.

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In Caroles family, when she was a teenager, nobody talked about her mum’s MS. It was like everyone was in their own little world.

Age at interview 53

Gender Female

It stopped all relationship between our parents. They were very separate. They… they didn’t talk to each other. I got the impression that they didn’t love each other anymore. I mean, whether they did before, I don’t know [laughs]. But then I, you know, I got the impression there was no closeness, really. I mean, our dad was a really good carer in that he, when she was in hospital he went to visit her every single day. But he worked long hours, he had to do two jobs because she wasn’t working and so bringing up, you know, three daughters and, him and our mum and he wasn’t well paid. He had a very poorly paid job and so he had, two jobs to help with that.

So, he was shattered when he came in and all, hed come in and hed sit down in the chair and fall asleep [laughs]. And then hed cook the meals and clean and stuff. I mean we helped, I helped but [sighs] yeah, I felt our parents didn’t really talk to each other at all about things and certainly with that. And the house was very, very quiet. You know, there wasn’t sort of laughter going on and there wasn’t chat going on. It was all like everyone in their own little worlds in a way and I never thought of it like that but, yeah, it was. It was like that. So I think it had a huge impact on their relationship.

And did you reflect on that at the time?

I suppose I mean it did strike me that they didn’t talk to each other and that they weren’t close with each other, yeah I, that did affect me at the time and I did think about that I think it was more that I was thinking of myself really probably and how they didn’t react to us and talk to us about things. So at the time, no, I didn’t really think too much about them, together. It was just that it was, it felt like a very unloving, unloving family, which sounds awful I feel guilty saying that now because they did work very hard for us and they did, you know, try hard. But that emotional support wasn’t there or emotional, not support but, you know, it wasn’t support, emotional feeling wasn’t there with any of us. Between ourselves, everyone was very isolated, yeah.

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No-one had ever asked Carole about the horrific time caring for her mum when she was a teenager. When she talked it through with a psychologist she became proud of how shed survived it.

Age at interview 53

Gender Female

I wonder if you could say a bit more about, about the neuro-psychologist. I guess many people won’t know what a neuro-psychologist is or what they do and how they can help somebody in your situation.

Right. My consultant suggested I went to see the neuro-psychologist. Shes a, a clinical psychologist with expertise in neurological things like MS and, and other things as well and I don’t know what else she deals with but, for me, all I’m bothered with, is the MS bit really. And I went and had different, several sessions with her and she did lots of CBT, I’ve forgotten what it stands for.

Cognitive behavioural therapy.

Cognitive behavioural therapy, yes. She did lots of cognitive behavioural therapy with me but also gave me the chance to talk through what I’d been through in, in my life and no one had asked me before about it. That’s the first time I’d really talked about it to her, or to a professional person, certainly and she made me realise that it was a horrific thing to go through, when we were growing up, and, and I felt quite proud of how I’d survived it, in a way really and how I can still laugh and joke about things and, and look, look back at that time and not completely, you know, crease up with things.

It’s so she was great with that. I had many more sessions than perhaps I was meant to be having. She, yeah, she kept renewing my sessions because it had been such a horrific time for me really and because I was going through the MS myself and was terrified that what happened to my mum was going to happen going to happen to me. So I had, poor woman, [laughs] I had a load of sessions with her and no, but shes brilliant and yeah, absolutely brilliant.

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Carole never met another person with MS when she was caring for her mother. She thinks it would have really helped to talk to someone else about how they coped.

Age at interview 53

Gender Female

My own advice would be for people to talk to people if you can or to, you know, to people who’ve got MS or who’ve been through that, finding out how they’re coping, you know, finding out about their experiences I think is absolutely vital. I mean, I never met another person who had MS at the time. I never met anyone else who was caring for someone with, or with any illness but certainly not with MS.

None of our family, none of our family and friends were poorly at the time and so there was not anyone else to talk to about it and I would, yeah, I think being able, being able to have that opportunity to talk to someone or to find out how other people have coped is, would have been so much help for me at the time. It would have been so much help for all of us, I think, and so you don’t feel so on your own. You don’t feel so isolated, don’t feel so scared perhaps and then having the opportunity to talk, you know, to talk through your worries as well, rather than being made just to cope on your own. It was yeah, it’s yeah, it really would have helped so much.

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Although it was a huge blow’ when her mum died, Carole felt a bit relieved because her mum had been suffering so much. But she also felt guilty for feeling relieved.

Age at interview 53

Gender Female

After, because she was in hospital quite a few years and then I’d gone away to college then and so it must have been seven or eight years after that , and just got a call from my dad one day saying, Your mum’s died. And I remember saying, I didn’t know she was ill. And shed had, apparently, some complication. I think it was pneumonia shed had and they didn’t treat it but again our dad hadn’t told [laughs] hadn’t told us anything about this.

So that was another huge blow, really, because, although I knew our mum was ill with MS, I didn’t know anything else was wrong and so, we hadn’t been prepared for it at all and so yeah, just to say, Your mum’s died was quite, quite horrid too. But that was a relief because she didn’t have any quality of life. She couldn’t, we didn’t know if she, when we went to visit her we didn’t know whether she knew us or not. She certainly didn’t do anything. You know, she just lay there all day long, day after day after day. So I tended not to go and see her that often because it was too upsetting to see her and then felt guilty that I didn’t go and see her and so it was, yeah, it was, it was very difficult.

When she did die and, although it was a relief, I then had all these guilt feelings thinking I didn’t do more for her and that I shouldn’t be glad that shes died and all that. So but again, no one talked things over with us and yeah, it was, it was horrible too, then. It was, it was a help that, you know, it was better that she wasn’t there suffering. I mean from what I know now, that’s very unusual the way her progression, you know, was so, so fast but it’s, it’s yeah, it was, it was scary.

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Talking to her friends, and her twin sister, about everyday things helped Carole to get through the isolation of caring for her mum as a teenager.

Age at interview 53

Gender Female

What you’ve told me sounds so terribly, terribly isolating for you as a young teenager and through into late teenage years?

Yeah.

That I wonder how you got through it. Do you wonder how you got through it?

Yeah, sometimes I wonder how we got through it. I’m welling up now thinking about it and.

Do you think it, can you think about things that helped you get through it?

Going out with my friends. Talking to my friends about just every day, everyday life helped me through. I don’t know what else helped me through, Nic, to be honest. It was just like a bit of a nightmare really. My twin helped me through in her way because we were very close. You know, we were, she was such good fun. She was lovely, you know, the loveliest person you could meet, really, and so she helped me, even though we didn’t talk about our mum, just that we were finding other things to do and, and keep busy. I used to babysit a lot and that was to get me out of the house and so looking after little kids and things was lovely. It was, it was, you know, that was good for me. It and, you know, friends. Friends helped and I suppose even though the fact they didn’t talk to us about our mum, the fact that they were just, you know, I was able to do things with them and, you know, just have time away from the house and things helped.

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