Jane - Interview 22

Age at interview: 69

Brief Outline: For the last 20 years Jane and her husband has cared for their daughter Sarah, who has schizophrenia. She worries about what will happen to their daughter when they are not around anymore.

Background: Jane lives with her husband and her daughter Sarah. She also has other grown up children. She became a carer at age 48.

More about me...

Jane (69) and her husband came to the UK more than 40 years ago. They live in the north of England and have three grown up children. Their daughter Sarah was diagnosed with schizophrenia in the late 1980s and she is living with them.

Jane and her husband didn't know much about mental health problems when their daughter became unwell. Although they noticed that she became withdrawn and that her behaviour changed in her late teens, they initially thought it was normal teenage behaviour. It took some time before they realised it was a mental health problem and contacted the doctor. After she was diagnosed, she was in and out of hospital and her medication was changed a number of times. This was a very hard time for the family. Jane says that they were anxious about leaving her at home when they went to work, and that life became full of worry. It was difficult to sleep at night as Sarah was very restless and kept them awake.

Jane says that back then, there was very little information available, and Sarah's condition was never really explained properly to them. She thinks things are much better today, with more information and services for both carers and service users. She recommends that carers take part in what is offered by community mental health centres, such as opportunities to talk or activities that can take your mind off all the problems. She herself has taken active part in different kinds of mental health training over the years, and she has also given talks about her experiences. She believes the general public needs to learn more about mental health and illness to avoid some of the stigma and stereotyping that happens.

In addition to the support from community mental health services, friend and family, Jane gains strength from religion. She has a strong belief in God and says her relationship with him is what has helped her through the hard times.

Over the last few years, Sarah has become better. She is now much more interested in going out and doing things, in buying clothes and looking after herself. This is a great relief to Jane and her husband, and Jane says she and her daughter now have developed a good friendship and enjoy socialising together. Even so, Jane is sad that her daughter is not experiencing the love and relationships that most people her age are experiencing.

A big worry for Jane is what will happen when she and her husband are no longer able to care for Sarah. She says that they try to make sure Sarah becomes more independent, so now that she is better they have started to let her go to the doctor's on her own, and they involve her more in household chores. The most important thing, Jane says, is to show her love and affection, and that she is an important part of their family.

Really careful listening is needed to understand the work carers do (played by an actor).

No, I don't think they were listening, nobody, they weren't listening, they didn't understand what it. Because they don't understand what it's like to be a carer, I don't think they were listening at all, I don't think they were listening, you know. There are a lot of carers out there, there is a lot. Not just with mental illness, both physical illness as well, a lot of carers out there and they weren't taking any notice, you know, they just, they listened, but they weren't hearing. 

I want them to listen more. I would like them to really and truly listen to the voice of the carers. I would like them to help the carers more and do a lot a more as well even the users as well, help them a lot more, God I think they need a lot more help than what they get, I think so.

Encourage them, let their, -oh how can I say it now, -let them, let them feel like they are listened to. Help them in a way that they can feel like this weight, -just take some of the weight from them, you know. For me, as I said, me now I am a pensioner, but thank God I manage, I manage financially, I manage. But there are some carers that need help financially more. There are some that do need financial help and that's one of the things they should help those who really need financial help and support them a lot more. Listen, because when you listen you can understand, you know, if you don't listen to the people, who really experience these things you will never ever understand, you know. And they must listen to carers, help them more, help them, because it's hard work. Somebody might say, oh well it's your own daughter, or your own son, or your own husband, that's true, that is true, but it's, it's still hard work and you need support too you see, you need to be supported as well.

Jane grieves that her daughter will never have friendships, get married and have children (played...

But she missed out on all her teenage, -as I said before, she don't even have a relationship and that really gets to me as well, that really saddens me, because I thought, if she had a, -if she was all right she'd have, maybe have a family, as a matter of fact she was saying it to me yesterday, she was saying this yesterday, I said to her, 'If you were', -because she's still at home, I said, 'If you were all right, you wouldn't be at home', she said, 'No I would have a family by now and a house'. I said, 'That's right, you would', you know. So this really saddens me, it really makes me sad and I think it makes her sad as well, because she talks about it, that means that she's thinking about it, You see and you lose your friends, your friends, not me, her, I mean her.

Sure.

Yeah her, not me, she knew they don't bother about her, don't bother again. So she sees me now as a friend, I am the friend. I am the friend, because everywhere I'm going she's there. I don't work now, I don't work now, I'm retired, but we go together, because she sees me now as the friend you see. And all these things really saddens me, it really does, because -sometimes I do weep a little bit, in a little corner, I weep for her and I thought, you know, this is her life. And then, but sometimes again I don't, I thought, well if this is what is supposed to be well what can I do?

Jane had been a carer for many years before her doctor told her about a centre which had services...

What, the same doctor that introduced us to a carer centre, because I wasn't going to no carer centre, at that time was a doctor attending and she said, 'Oh do you know about', she said, 'Do you know about, what you call it, as a carer centre for carers', so I said and for users as well. So I said, 'No, I don't know anything about it, I've never heard of that place'. It was the doctor attending that mentioned it to me. Anyway I went, I went to see where the place were and then I started going there. She was going as a user and I was going as a carer and that's the first time that we started to get a little bit of information about, you know, different things and. But before we were so much in the dark about this mental illness, I'm not joking, we were so much in the dark about it and you didn't have, you didn't really have anybody to tell you anything in them times. You didn't have no one who could tell you anything, explain to you about much, not really. Not like now.

Jane thought the early signs of her daughter's mental health problem were normal 'teenage stuff' ...

Then when she was about, I think that everything started when she was, I would say about 18, I think it was around that time and she, -we just, you know, noted that she started doing things that we thought, well she shouldn't be doing. So we thought, well 'Oh just a teenage thing', you know, teenagers this day they don't, they get a bit, won't come out of bed and they won't tidy up and we just thought, 'Oh it's teenage, you know, stuff'. And then I thought it seemed to continue and continue, the same, staying in bed, not coming out, you know, stay in the room not coming out and then we thought, 'No, well something is wrong here, this is not just a teenage thing, you know, something else is happening here'. You know. So we thought about, so watch it for a while to make sure before we do anything.

Anyway it continued and then my husband says, 'No this can't be right', so we approached the doctor you see and when we approached the doctor and we explained to him all of what was happening, the symptoms and what was taking the place, what looked unusual to us, then he refer us to like a specialist, you see. And then we went to the specialist and we told him everything about, you know, what was happening and everything like that, he spoke to us and he told us everything about the symptoms and examined her and everything and then he told us that she's got schizophrenia.

Mental health problems can affect anyone so educate yourself, learn about mental health problems,...

Well, learn a lot more. People should learn a lot more what this illness is all about, they want to really understand it's an illness. It is an illness that affects the brain and people must really get into it. They're being ignorant about it, they must learn a lot more about what it is and when they start learning, because I, I still think that there are people out there that are still ignorant about mental illnesses, about schizophrenia and they want to learn a lot more about it. But go and find information about what it's all about and then they'll start to understand and then they won't be so ignorant about what it's about, that's one of the main things people want to do. Learn about what mental illness is. Because mental illness can affect anybody. Anybody. It doesn't matter who you are, it can affect anybody, because even we sometimes, we call ourselves 'normal', but sometimes we do get a touch of mental illness, sometimes we do, and we don't realise it, a bit of depression, a bit of, you know what I mean. Yeah so it can affect anyone. So people should go and learn about it, get information on it and that's so when I do all this training, I get to understand and then I'm not ignorant anymore and I know how to deal with it. I know how to treat her, that's the next thing they want to do too, when they learn about what it's all about, they know how to treat people, you know, that's right. So this is the advice I can give to people, go and learn about it and then you won't be so ignorant, then maybe you won't think it's some kind of a disease you don't want to go near them, do you know what I mean, that they might catch it. So these are the things that I think people should really be aware of and, you know, sympathise, don't criticise, sympathise, because it can happen to anyone, anyone. Don't think you are untouchable, because they didn't go, these people, these young people, because when you see these young people I feel, when I come here sometime on a Friday when I'm going to this place, I come in, I saw these young people and my eyes is full of tears when I see so many young people, I thought, what is wrong, why, what happens to the people, why so many young people is ill, is mentally ill, why? And a lot of ethnic minorities as well and my husband said, why is it, why so many and I cry about it, I cry, I actually, I do weep. So people really want to go and, and learn and get information and know what it's all about and then they will sympathise people have got this problem and not criticise, because it can happen to anyone my dear, anyone. And this is the advice I would give to people.

Jane thinks carers today are speaking up and being listened to more than before (played by an...

Because at one time carers had no voice, they had no voice at all, nobody would listen, nobody was listening, no one was listening. But I think now the carers have got a lot more voice now and a lot more experience is coming out about what happened to people under the medical provision. So I think they've all taken it on board now, you see, because of the voices of the carers, you see, but one time the carer didn't have any voice, we speak but we weren't heard, do you know what I mean? Yeah.

Did you feel you were trying to speak out back then?

I did.

Yeah.

Oh yeah, as I said before, I went to a lot of meetings.

Did you feel that people didn't listen?

No, I don't think they were listening, nobody, they weren't listening, they didn't understand what it. Because they don't understand what it's like to be a carer, I don't think they were listening at all, I don't think they were listening, you know. There are a lot of carers out there, there is a lot. Not just with mental illness, both physical illness as well, a lot of carers out there and they weren't taking any notice, you know, they just, they listened, but they weren't hearing. But now the voices of the carers are being heard more, because they are speaking more. They are speaking more, because I think carers are getting a bit fed up of not being heard, fed up of nothing being done to help them and so now they are coming out and they are talking and they are listening. And I think more should be done for carers, more because it's a hard job. I know the person we care for is our blood, it's our blood, but we need, we need help as well, we need the support too, you know, and it's only now that you find that things are getting done for carers a bit, things are getting done and we hope that it can get better.

It used to be very difficult to communicate with her daughter, but now they are friends (played...

Well, over the years, I must say - When she was ill we couldn't get close to her, because she just kept herself to herself, we couldn't even talk to her. We couldn't even talk to her, we couldn't get close at all, because she kept, lock herself away, she just isolate herself, so there wasn't much relation. It's we had to be sort of trying to get to her all the time, we had to try to get closer all the time, she wouldn't, you know, just kept herself away and not talking, isolate herself, so it wasn't good at that time either, the relationship wasn't good. It's we that tried to get to her, you know. But now it's different, it's a lot different now. It is a lot different now as I explained to you, we go together, we do all sorts together, I'm like her friend you know, not her mother. I'm like a friend, like her friend, oh yeah. And I'll put on anything, I'll call her and say, 'Oh come here', she's called Eileen, 'Come here Eileen, does this look nice?' She says, 'Oh mum, this looks really nice, I like it'. If she has anything I tell her the same thing, I say, 'Eileen, you look really nice today' and I add that too, so 'I like what you're wearing'.

Jane's GP told them about a centre which had services both for her and her daughter. It was a...

What, -the same doctor that introduced us to a carer centre, because I wasn't going to no carer centre, at that time was a doctor attending and she said, 'Oh do you know about', she said, 'Do you know about, what you call it, as a carer centre for carers', so I said -and for users as well. So I said, 'No, I don't know anything about it, I've never heard of that place'. It was the doctor attending that mentioned it to me. Anyway I went, I went to see where the place were and then I started going there. She was going as a user and I was going as a carer and that's the first time that we started to get a little bit of information about, you know, different things and-. But before we were so much in the dark about this mental illness, I'm not joking, we were so much in the dark about it and you didn't have, you didn't really have anybody to tell you anything in them times. You didn't have no one who could tell you anything, explain to you about much, not really. Not like now.

Her community centre provides a space to talk and opportunities for lots of activities, which...

Ah, they do, you know, talking. I come here many times and give talks myself, over the years, over the years I've been a lot of places and give talks, you know, I've done that over the years. They come here, they encourage you, they talk to you, they, they make you, -here is like your home, like a home when you come here, all the carers we get on so well. So well, and they may have different things for you to do, different activities, we go here, we go there and make ourselves. I mean, about two or three years ago I think, about two or three years ago I went on a four day trip to Dublin and I really enjoyed that, I really did, and the first time that I'd been to Dublin and it was lovely. A group of us went -carers- and I really had a good time, so these things it breaks the tension, it breaks the thinking and the worry, so it's good this place, they do a lot of things for the carers. We do all sorts of different activities, going out there, doing this art work, all sorts we do, so it's, I can recommend it to anybody, but as I say, they could do more actually for the carers, I think they could do a lot more, you know.

She worries about who will care for her daughter when she and her husband are gone (played by an...

Because, I mean, the thing that worries her dad and I is, I thought, -what happens when we are not here and that's another big worry, that's a very big worry. A very big worry, because as I say, she sees me as her mother, she sees me as her friend, she sees me as her counsellor, because I counsel her, her dad and I, we counsel her about a lot of things, you see. So when we're not here, what happens, what will happen and that is our big worry now. Because I know for a fact that people that suffer from mental illness they are vulnerable people, they can be taken advantage of and that scares me. That scares me. She's got two brothers, she's got two older brothers and they're quite good with her. Quite good with her but they have their lives, so and that really scares us now, that is our number one worry, you know, what will happen, will somebody look after her like what we do, will they? You know. That's our worry now.

Jane felt distressed and had no knowledge of schizophrenia when her daughter was first diagnosed ...

Now by this time I had no clue, we had no clue what this is all about. We had no idea what it is all about. So we started to get this, you know, so when I thought, 'Schizophrenia, what is it?' So, anyway he says, 'She's got mental illness'. Ooh I'm telling you, I'm not joking, I felt, because in my mind, a mental illness, because we didn't have no experience of what mental-. In those times, in my mind I was thinking, 'Mental illness, oh my God, I'm going to see her pulling her hair out, ripping everything', you know that's the idea I get of something like that, I call it 'mad', put it that way, 'Oh my God I'm going to see all these things happening, she'll be pulling her hair out, doing this, doing that'. Anyway, I'm telling you, when he told me that I felt as if somebody had just ripped my heart out, that's how I felt and when I left the hospital I came home and I went up to my room and I cried and I cried and I cried. And I just couldn't, I couldn't, I couldn't take it. I thought only one daughter, you know, she's only one daughter, I couldn't take it, I couldn't take it all. And by the time I had to go to work, you see, we used to be, me and my husband we both go to work.

Jane wants her daughter to become independent so she can cope when her parents are no longer there.

Do you usually go with her when she goes to the doctor?

Yes, we used to, we used to go, but now what we do now, is now and then let her go on her own, because we want her to be independent you see, we want her to go and talk to the doctor herself, you see. So we do that sometime, let her go on her own. Let her go on her own, and let the doctor ask her questions and she tells the doctor how she feels and things like that, because they need to be independent, because they spend so much time depending on you, they need to be independent. Because, I mean, the thing that worries her dad and I is, I thought, -what happen when we are not here and that's another big worry, that's a very big worry. A very big worry, because as I say, she sees me as her mother, she sees me as her friend, she sees me as her counsellor, because I counsel her, her dad and I, we counsel her about a lot of things, you see. So when we're not here, what happens, what will happen and that is our big worry now. Because I know for a fact that people that suffer from mental illness they are vulnerable people, they can be taken advantage of and that scares me. That scares me. She's got two brothers, she's got two older brothers and they're quite good with her. Quote good with her but they have their lives, so and that really scares us now, that is our number one worry, you know, what will happen, will somebody look after her like what we do, will they? You know. That's our worry now.

Jane thinks different things in a social environment can trigger mental health problems (played...

Oh- I don't know, I'm just wondering if it caused from a- Because my husband and I were going through a little bad patch at the time, we went through a bad patch and, you know, I don't know, I don't know if it's, if it's triggered from that, or what, I'm not sure. Because you see I get to find out now, because I have given a lot of, I've been to a lot of talks, over the years, me. I've been to a lot of talks and I've been to, to training, even about what schizophrenia is and all those things and even sectioning, all those things, I've been trained over the years, me -and talk as well. So anyway and as I said, I don't know if it's triggered off from that, I don't know, because they said, that -I get to find out that schizophrenia is an illness really, it's an illness, it is an illness. And in my training I've learnt a lot of things, a lot of things that schizophrenia can be, -anything can trigger it off, it can be a chemical reaction in the brain, you see it can be a chemical reaction in the brain. It can trigger off from a social environment, from maybe unhappiness in the home, or home not, you know, stable. It can trigger off from other social environment and the chemical in the brain, unbalanced chemical in the brain, you know, and not in a proper environment, social environment, not treated properly in the environment as well can trigger all those things. Because in my mind I think it's there, that's what I think, I think it's dormant, there. But some people say, it can maybe come from like the generation, from like a, the word to use again?

Genetic?

Yes, but I have nobody in my family as far as I can know, that suffered from any mental illness you see, so these are the different reasons that they have about it.

You said, you think it's dormant, do you think it's in her?

Yeah I think, to me I think it's, I think this illness is there, [indicating her chest] I think so. I think it'd be in people who suffer from like schizophrenia, but it just needs something to trigger it, that's what I think, that is my-.

You're born with it and you need something to trigger it?

That's my thinking, that it must be something in there, because if you have a chemical imbalance in, in your body, something has to cause that chemical imbalance and that's what, you know, I gather from listening to talks and going to these. And then any kind of social environment, unpleasant and a social environment can trigger mental illness, so that's what I think.

She believes that negative social pressure directed at Black people can dampen the spirit and...

No, I said, black people in general, we are seen as aggressive all the time and we're not really aggressive, we are people with free spirit, we're a real happy people, but under pressure, under, under social pressure and that so terrible environment, under negativeness we can, -they can become aggressive, because the spirit has dampened, the spirit has become low and sometimes this aggressiveness diagnosed as schizophrenia. That can happen, it can happen. It can happen, you know, because if you are always being victimised and this negativeness against all the time you've been, you know, the social environment is not right, it can kill the spirit you see and this is another thing that they don't, you have to connect the spirit with the physical, because once you damage that physical, that spiritual side of you, the physical side is gone. Because the spiritual side works with the physical side of you and this is what they must, the doctors they must look into again, the spiritual. Don't look at the physical side of the person, the person's spirit has gone low, it's dampened, it's weakened and so if your spirit is weak you become aggressive, you become mental, you become everything, because everything around you is just not balanced, imbalanced, you know. So they must look into this thing, don't look at the physical side of the person, the spiritual side has been damaged.

Her daughter is better after finally finding a medicine that works for her (played by an actor).

So anyway it went on and went on until eventually again -they keep changing the tablets now, they keep changing the medication to find out which one suits her best, that's what they did. And the doctor told us after a while, he said they have to change them, you have to do them until you find the best one that suits her. Anyway they did this and until they come to one that really was not too bad and we continually used that one and then after a while we're back at the doctor again and asked for the medication to be changed again. You see, because we thought, well we want something, better medication so that she can live a really normal life, you see. So we go to the doctor and we explain to him and then eventually they put her on this one and it's been a good one, it's been a good medication, you know, it's been quite good with her, she's a lot better now than what she was then, a lot better.

She does not apply for things she is entitled to because she feels her honesty is doubted (played...

I had one years ago now, years ago I had an assessment, but it didn't, it didn't get to anything, because you see, sometimes. -You see that's the only thing I don't like, sometimes when you have this sort of a problem, you know, and they want to maybe, -I don't know what to say- maybe give you some things, financial help here, I had to go through all this red tape and all this questioning and all these things. I mean, when you have this sort of problem why should you? When you are genuine, if you are a genuine person and they know that you're a genuine person, why do you have to go through all this red tape, this rigmarole of questioning? And I don't, -I just can't do with it. So sometimes they just say, 'Oh you could claim for this, you could claim for that'. I don't bother. I just can't go through with it, many a time I think that there are things out there I could claim for, but I don't, I don't because I cannot be bothered to go through all this when I know that my case is genuine. So I don't really put myself in that position. I'm satisfied what I've got, I can live on it what I've got and I'm all right. I don't bother, because it's too much, I can't do with it, I can't do with that.

Jane says that people with a mental illness feel the same need to be loved as everyone else ...

People with mental illnesses, people, you know, -I think people will think, 'Oh they haven't got no feeling, they've haven't go no emotion', but they are wrong, they have got emotions, they have got feelings, they have got plenty emotions and feelings. They want a family for themselves, they want a relationship, they want all these things, but they just can't, they can't get it, because of their illnesses, so do the things as well. They want to be loved, the family love them, but they want a different sort of a love, you know what I'm saying, you know, so these things as well and in my daughter's case, I think, I think she thinks about all these things, I know she does. I know she does. I know she does, because I told you what she said to me about having a, I said, 'You wouldn't be here if you was', she said, 'No', she said, 'I'd have a family, I would have a house', that's what she said. So that's their thing, they have emotions. They have emotions, they have feelings. They have feelings and they want to be loved, not by the family, but loved by somebody, you know what I mean?