Sarah - Interview 25

Age at interview: 59

Brief Outline: Sarah cares for her son who has schizophrenia. She is active in several carer's oganisations.

Background: Originally from France, Sarah is a retired teacher. She is divorced and lives with her son. She also has two daughters in their twenties. She became a carer at age 52.

More about me...

Sarah is originally from France and in her late 50s. She lives in the South West of England with her son Max who was diagnosed with schizophrenia in 2000.

At the time, Sarah was in the middle of a divorce, and life was therefore very stressful for the whole family. Max went to university and eventually completed his degree. After finishing he moved home and Sarah noticed that his behaviour was becoming increasingly anti-social, and he spent most of the time alone in his room. He was, however, able to work in a local restaurant. When Sarah returned from a week's stay abroad the following summer she found Max unable to cope. He was clearly unwell and had stopped working. Despite Sarah's encouragement, he didn't accept that he needed help and tried to live away from home for some time, but had to return after a few months as he couldn't cope on his own. He eventually agreed to see a counsellor, who immediately understood that he had a serious mental health problem. It took another year before he was diagnosed. Although gradually accepting that he has some difficulties, Max has never accepted that he has schizophrenia and he doesn't like taking medicines. He has never been sectioned or hospitalised. Despite really wanting to return to work or study, he hasn't been able to. Recently, he has started doing some voluntary work but he suffers a lot from negative symptoms.

The impact on Sarah's life of caring for her son has been huge. After being extremely exhausted and depressed for a long time, two years ago she stopped working. Since then, she has been very actively involved in several carers' and service users' organisations. Using the internet and going to conferences and seminars, she has learnt a lot about mental health and about schizophrenia in particular.

Sarah doesn't think the health professionals helped her much when her son was first diagnosed. She received a tape with John Cleese talking about schizophrenia, and that was initially about it. Looking back she says the professionals must have known what she was in for, yet she received very little information and support. She believes it is necessary with public awareness campaigns on mental health, like the ones that exist for other issues such as cancers. Sarah and her husband had been unaware of mental health issues and when their son was showing the first symptoms they had not recognised them. This reduced the opportunities for early intervention.

Sarah is concerned that when a mental health patient is relatively stable, the psychiatrist often refer him or her back to the GP and move on to the next person in crisis. Sarah believes that instead we should focus on achieving remission (when the symptoms of illness stop but could return) She says it is important that carers get the information they need and that they are able to assert themselves when they meet health professionals. It is also important that the health professionals with the most expertise - that is psychiatrists- and not GPs, are involved in this as they will be the ones with cutting edge expertise.

Although Sarah feels she can't keep talking about the situation to her all her friends and that she has to be careful about who she talks about it with, she says she gets support from her two daughters, from some close friends, and, importantly, from other carers.

If the person who is unwell doesn't want to go to the doctor, talk to your own doctor or ask for...

Well I talked about. I mean, the first thing, obviously if you have a problem, is to go and see the GP, because a GP is the first person who can put you in touch with professionals, the psychiatrist and so on, so it's to go and see your GP, and if you're, the person you are caring for doesn't want to see anyone you can go to your own GP. Because often people say well he doesn't want to, but you can go to your own GP and explain the situation, and, you know, the GP, even if it's not the same surgery as the other -person you care for, they can, I don't know, suggest things and so on. And ask for, I think, a home visit if the person doesn't want, -that's the one thing I regret, really, not to have done. And not to be, not to think that it's going to get any better, because it's not going to get any better. And to contact MIND, Rethink, those are the two main charities who help people with mental health problems. Because then you are going to be put in touch with other carers and you are going to get information as well, and you can see people on a one to one basis as well, you know, so you don't have to, if you don't want to expose your problems in front of everybody.

She hopes for a breakthrough in medicine which can help her son live a better life (played by an...

So I think, because in a way there's this thing I just think, it's hope, you need hope, you have to hope. And I am very, even though sometimes it makes me quite depressed because I think probably it won't be for him, for his generation, but in a way I am hopeful, and that's what keeps me going, that things are going to get better, or they are going to discover a tablet or.

A cure?

Well not even a cure, just something that people can function well with, whatever medication they take. Just to be able to function. And really even work, I don't care now, if, -all I would like for him is to have a social life, a few friends, he can have a laugh and that's all, and really that's a basic for people really, you can do without work. So, in a way, at the moment I am feeling OK, but let's say if in the next week or two he is not well, we are back to square one, and I am going down with him.

Sarah wishes the psychiatrist would be more involved in her son's case (played by an actor).

And that's really what you've got to remind yourself. And because obviously the ideal situation is to be able to work in a team with, -but to be more involved, I think I would, you know, and probably they would think I have been very involved, because I involve myself, but I would have liked more, much more. I mean you only see the psychiatrist once every six months. I know you can see him if you feel there is a problem, but we don't. And, you know, I think, 'I wish they had more time'. Which is something obviously they can't do much about that, but I wish they had more time, really. So. Because I know that the next stage will be to -probably when he sees next the psychiatrist, he's going to say 'you are stable now, so now, next stage, you are going to be on to the GP', I'm not terribly happy with that, because I feel, -it's not that I feel, you know, that he sees the psychiatrist once every six months, he gets his tablets, but so it's not, but I feel if there is anything new that could happen, it's not going to be through the GP, it's going to be through the psychiatrist. And I feel, -because at the moment I go and collect his tablets, because otherwise he would not go, but so I feel really I am not too happy about that, but we'll see how it goes.

Sarah says the professionals must have known how hard it was to look after her son, but offered...

On top of that, because I was at work most of the time she came, so I felt it was quite slow, I mean I expected much more, much more help, you know, And I really, I was never, even though Max was with me at home and they must have known, I know they are overworked and so on, but they must have known it's quite hard to have somebody who is not well at home. I was never asked, you know, how I felt and if I was OK, it was a matter of course that I was going to be OK. And you don't feel like saying, you know, it's difficult to cope with, because you feel, well, you've got to, and you feel if you are not coping it means you are not adequate, because people are not offering anything, so it means that you should cope, really, so you get into that state of mind. And so anyway, I'd got to know about Rethink, and I don't know who told me and I can only imagine it must have been either the psychiatrist or the CPN otherwise I would never have known about them. So I contacted someone and I used to go to a monthly meeting in the evening, which was quite useful, and. But then I still didn't know much about schizophrenia, and really where I learnt everything I know now is on the internet. There is a very good website, schizophrenia.com, and I just went, and then when you go to different websites and I just learnt, you know, I didn't know there were several types of schizophrenias, I thought everybody with schizophrenia was, you know, the same, had the symptoms, so it was really time to, I mean, to understand what was happening to him, because obviously he had no insight of his illness at that time. So it was trying to make sense of, and what to do to move forward, basically.

So I got involved with Rethink and then somehow I must have heard, been told I was entitled to a carers assessment, and which I had, and I didn't find it very useful because what he suggested was for Max to go somewhere, like for people with mental health problems for a week, to give me a break, and I had said, had told him Max was not going to go anywhere because he didn't want to have anything to do with people with mental health problems, as he was adamant that he was not mentally ill. So basically that was it. Either my son had to fit in what was offered, or there was nothing.

She felt hope when a professor said that getting people with schizophrenia stable is not enough;...

And I told you I went to that conference on schizophrenia, and that was extremely interesting, there was an American professor giving a, a talk about remission and what I came out with, of his lecture, was 'if you are told the person you care for is stable, that's not enough, that's what he said, you've got to work towards remission'. He said as well, obviously, that not everybody will achieve remission, but that's where you have to work towards and you've got sort of their criteria for the psychiatrist to follow, and I've got the impression it's something quite new, that not, -at the moment my impression is stable- that's it. He is stable, he's not in a crisis, we move on to the next one who is in a crisis.

I understand that they are overworked in the services, and when I say that, I don't want to blame them, because I understand that they are overworked, but at the same time, what they need to know is that the person who is not well has got expectations, I mean higher expectations, and so has the carer. And so it made me feel better about it really, even though I don't know how it, -because I know with my son, given the fact it's negative symptoms mostly, what he suffers from, and there is no pill for that yet, so I don't know how it's going to help him.

Sarah says carers recognise signs missed by professionals who don't really know the person ...

So another thing, I feel they don't know them, maybe that's my feeling. They don't know them, they see, they've got an idea and they don't take enough notice of what the carer says. Because I feel I could have told him that he was, you know, muttering to himself, that he was holding, you know, his face in his hands and the suffering on his face, it was awful to watch. And that he was, -he couldn't, -he was not seeing anyone, he was, he was not communicating, he found it difficult to have a conversation because that -his main problem is communication, he found it very difficult to communicate. I mean now it's better but it's still not what it was before he fell ill. And yeah. So I think, I think it could be, because I know they are going to try to, at the moment -. I have seen papers that they will sort of involve carers a bit more, so, I mean, to listen to what the carer says, because, I mean the carer lives, has to do with that person, -if not 24 hours a day but a lot of the day. And, you know there are lots of signs that she can, the carer can recognise that the professionals might not, or you know they might, I don't know, -because my son was, he was, it was never very spectacular. So I don't know what, you know because he's never been to hospital, he's never been sectioned, he's never been hospitalised, so he's always managed to stay at home, but he was all the same ill, and not functioning. Perhaps he was not a danger to other people or to himself, but he was still not well, and as far as I am concerned if you are not, -if you can't socialise, if you can't have even a part time job or if, you know, you can't have fun with people, you are not well, -that's the way I see it. Because sometimes I think that the professionals think, you know, he's quiet in his corner, he's not causing any trouble, he is stable as they say, 'fine, he's not in a crisis and'.

Other carers understand her son's condition in a way her non-carer friends don't (played by an...

And carers, -other carers, because there is no need for many explanations, they understand really where you are, and while, you know, with some people for instance, they would say well what's wrong with Max? Whenever I phone him, he answers the phone, because he's very articulate, I don't know whether they expect him to be screaming over the phone, but he doesn't always answer the phone, but when he does, -and it's one thing that has always surprised me, the way he can hold a, I mean it's a short conversation, but he appears very together, that's really quite amazing. And so that sometimes gets on my nerves really, with everybody expecting him to be climbing on walls or-.

Sarah's son has little initiative so she organises trips to stimulate him (played by an actor).

Yes, so the impact that it has is that I've got, -because he's got, -he has no initiative really, so I have got to organise everything for him. I have got to, -if I do anything I've got to make sure it's not going to have a negative impact on his life, you know. So he came with me to see my parents, one of my daughters were there as well for a few days with her boyfriend, and so that went well, I mean, -and it was good for him to be with people of his own age. But if I was not, if I didn't take him places he would not go anywhere, that's the thing, and we stopped in Paris on the way back, and he was quite anxious, because he hates, you know, crowds. But we still went, and we didn't, -it was the first day I woke him about 10.00 am because we had to catch a train at 12.00, arrived in Paris at 5.00 pm, by 8.00 pm he wanted to be back at the hotel, because he could not, he was too tired, he gets extremely tired, that's the thing. And the day after I had to plan activities which were not stressful, which were not too tiring, so in fact we went, in the morning we went to visit Le P're Lachaise, which is a cemetery with famous people, -but it's very peaceful, so he enjoyed that, going looking at and we saw Chopin's grave and so on, so he was quite happy with that. It's just trying to find, you know I always feel nobody's going to do for him, so I have got to do something to stimulate his mind and for him to have something approaching a normal life, otherwise, if I was not around he would go nowhere, because he can't, you know, do it himself.

When builders came to fix damage her son had done to the wall, she pretended it had always been...

Again, I am being careful with the people I am telling the situation, and I am not always telling everything, because for instance, that's years ago he made a hole in the wall, in his bedroom wall because he could not sleep, so he just punched a wall, I mean I know it's a partition, it's not a bearing, it's a partition wall, but still it was, -and he didn't hurt his hand, it was quite amazing. So he made that hole, and so I would not say that because people, they might think it's a bit odd, sort of very odd behaviour and he might be violent or whatever, so, -and I remember I had some builders after to redo the wall, and they could not understand about that hole. They were looking for a leak somewhere. And I said that, 'Oh, it was here before', but yeah.

Sarah's daughters gives practical help, and their strong relationships are a source of strength...

So I mean, -so they live in London, I don't see them every day but they phone very regularly and they've got a happy lives, she gets on with things, she is happy, and it gives me a boost really. And for instance when I went to that conference I asked her if they would not mind coming here to stay for the weekend with their brother, and they said yes, and they went to see friends, school friends and so on, but they was there and, so they had, you know, meals together and so on, so that's given me, at least I don't have to, -I mean I've got to be careful because they're young, they're fragile as well, but at least I know they are OK, so that gives me a boost, and we talk and so on. And in fact I used to talk a lot about Max to them, and once they told me, “You're always talking about him, and I would like to talk a bit about us”. So I said, “Yes.” 

Sarah found out most of what she knows about schizophrenia on the internet (played by an actor).

And so anyway, I'd got to know about Rethink, and I don't know who told me and I can only imagine it must have been either the psychiatrist or the CPN otherwise I would never have known about them. So I contacted someone and I used to go to a monthly meeting in the evening, which was quite useful, and. But then I still didn't know much about schizophrenia, and really where -I learnt everything I know now is on the internet. There is a very good website, schizophrenia.com, and I just went, and then when you go to different websites and I just learnt, you know, I didn't know there were several types of schizophrenias, I thought everybody with schizophrenia was, you know the same, had the symptoms, so it was really time to, I mean, to understand what was happening to him, because obviously he had no insight of his illness at that time. So it was trying to make sense of, you know, and what to do to move forward, basically.

Her first carer's assessment offered unsuitable respite, but the second assessment was better ...

So I got involved with Rethink and then somehow I must have heard, been told I was entitled to a carers assessment, and which I had, and I didn't find it very useful because what he suggested was for Max to go somewhere, like for people with mental health problems for a week, to give me a break, and I had said, - had told him Max was not going to go anywhere because he didn't want to have anything to do with people with mental health problems, as he was adamant that he was not mentally ill. So basically that was it. Either my son had to fit in what was offered, or there was nothing. And then I was told another thing, that somebody was going to contact me about support, carer support, -nobody did. So I just thought that was it, I just left it at that really, but I felt it was not useful then. I had another one since, which was better, obviously, you know, things are improving.