Raye - Interview 30

Age at interview: 28

Brief Outline:

Raye grew up with mental health problems in the family. Today, she is the main carer for her father (paranoid schizophrenia), her sister (schizophrenia) and her brother (manic depression). She now feels she needs to let go of some of the responsibilities and focus on her own life.

Background:

Raye has been a carer since she was a teenager. She is single and lives with her mother, but wants to find her own place. She is temping as a PA/secretary. Ethnic background: Black-British.

More about me...

Raye is 28 and lives in London. She describes herself as Black British, and both her parents are from the Caribbean. Raye cares for her father who has paranoid schizophrenia, her older sister who has schizophrenia and her older brother who is manic depressive. She also has a younger brother.

Raye describes home life when she grew up as a little 'dysfunctional'. Her parents split up when she was very young. Her mother belonged to a small, strict Christian church who, unlike other churches worshipped on Saturdays, and Raye felt they were to some extent outsiders. Family life revolved around school and church. Raye was happy at primary school, but says she felt a bit daunted when she started secondary school. This was also around the time she realised something was wrong with her sister. Over the next few years it became apparent that her brother and her father also suffered from mental health problems. From around the age of 15 Raye took on caring responsibilities. Initially it was simply checking up on whether her sister was OK and generally keeping an eye on things. She was also given a lot of responsibility for her younger brother and they spent a lot of time together.

As she grew older, Raye got more and more involved in the care of her family. Both her sister and brother didn't want to interact with their mother or their younger brother when they were unwell. She also became the next of kin to her father. She was therefore involved as all three of them went in and out of hospitals.

Twice, Raye has tried to change the situation. Fist when she moved away to go to university. She ended up coming back quite a lot, and on reflection she says she should have gone further away. Then, a few years later, she went to Japan where she taught for two years. When she was away her younger brother had taken on some responsibilities, but when she returned, she says it was 'like I never left'.

In her experience, the lack of coordination between services adds to the strain on carers. For example, the lack of hand-over notes often means she is the one informing professionals about her father's medical history. She has also been asked by professionals about whether or not he is in hospital at a given time. Recently, she was contacted by her father's housing officer and asked to go to his house to turn off his radio which was disturbing his neighbours. Raye doesn't think these sort of things fall under the duty of 'next of kin'. Being so closely involved and knowing so many intimate details about her father makes it impossible to maintain a normal father and daughter relationship.

Raye is critical to the over representation of people from Black and minority ethnic groups in mental health hospitals. She fears that many of them -like her sister- become institutionalised, perhaps as a result of wrongful sectioning, and then are unable to return to a normal life afterwards. She thinks issues such as poverty and poor housing is partly to blame for the inequalities in mental health.

The constant worry and the many practical and emotional impacts on her life have taken their toll. Over the last year or so, Raye has developed depression and has also been fighting her addiction to food. She says that given her family history she is in some ways glad her problems are not even more serious. At the same time she is very tired and has come to the realisation that for her own sake -and for her family- she needs to step back from some of the responsibilities and focus on rebuilding her own life. She is receiving counselling and she has also found that the 12 steps of Overeaters Anonymous have helped her find a practical and spiritual path towards recovery. She says she can't go on thinking she has to live for everyone else and forget about herself.

Raye felt she had to take on responsibility for her father, brother and sister but she says she...

I will take on everybody else's stuff plus my own and I'm in recovery at the moment, I'm trying to work out what's mine and what's not and hand back what's not mine. But at first it was, no one else is doing it, maybe someone should and then it was no one else is doing it because they don't want to so I have to and then it was no one else is doing it so I have to and it's just become I have to, I have to, I have to. And I don't, -I think it's also that they don't want to see my younger brother when they're not very well, so they'll see him after, you know, when the medication's kicked in and when they're feeling a bit better and they look a bit better but they don't really want to see him when, when they're in it. But at the same time, my brother's got is own life, he does his running around and my dad has four kids and I'm the only one that sees him on a regular basis and my sister lives five minutes down the road from my dad and, and she has done for the past two, three years, she moved there about three years ago but she's never been to see his flat. They talk and stuff and he's been round to see her but she won't go and see him. My older brother will go and see him intermittently. But they had an argument and, because my brother got ill and wouldn't go into hospital and my dad didn't want to know. So I end up doing that as well, like my dad, 'Tell your brother I don't want to see him until he goes to hospital and get himself sorted out', and my brother's, 'OK, I'm not going to see dad', and my sister's like, 'No, I can't help', and my brother's like, 'I'm not talking to dad because this thing, this thing and', or my mum, 'Tell your dad this', or 'Tell your sister' or 'Tell your brother this because', I just run interference is what I do, is what, that's how it feels. Now that I'm trying not to, it's really difficult.

Raye describes how caring for someone with a mental health problem requires time and expertise,...

When you see someone, -when my dad's file rocks up someone's desk and they see that I'm his next of kin and then they're calling me about turning off the radio in his flat and then they're calling to, 'have I seen him lately' and 'we're thinking about sectioning him' and stuff like that. We're people, you know, we're not papers and saying those to the people that work looking after them are people, not paper. The stuff that we do that you don't see, like going to see my dad every week, you know, the things that you buy when they're in hospital because they've been sectioned and taken in and you can't get into their flat or whatever and you've got to pick stuff up and, and buying food and things because the food in hospital is crap, they don't see all those things. It's not just it's not a day for us, or it's not like a few weeks, this is ongoing, it's 24/7 and for me with all the checking of the phone calls and what's been said or how are they doing, it's not, you never put that down, it's 24/7, you never ever put that down. I'm at work and I sit there and I think has my dad called, has he asked me for something and-. We're, you know, we're people and we can't, we know for us that have done it for a while, we know what's going on. It's patronising to have someone who's barely dealt with this person before, sit down and try and explain it all to you, if I know, I don't want to be told. There's so much. You don't think about it, that this is something that we do, we don't get paid for it, we don't get any recognition for it. If I need time off I can hardly say it's because my dad's playing up, you know. I have time off from work and I'm temping so it's unpaid and to go to ward round and things like that, and they're normally held in the morning and you ask us to come along and it's I feel like I need to be there but I can't because I've got other responsibilities. It's hard. I don't see why they can't be held at a time when we can all get there. It's probably good if a person's involved and I don't feel that mental illness is something that can be dealt with on a nine to five basis, I find that hard, you know, 'well it will have to wait till tomorrow now because everyone's gone home', so my dad's on the loose for another night then. I think we can help with a lot more than is asked of us sometimes. I don't know how that would work with confidentiality and then doctor, patient, whatever, but I see my dad more than you do. I know what's going on for him. You see him for ten, twenty minutes once every couple of months or so to make sure he's taking his medication. I see him every week.

Raye thinks there is racism in mental health services and in society generally.

I think wherever you want to look at this and whether you want to look at mental health or not, especially as a black man, you're in trouble from the day you're born, you know, and you get an angry black man show up in your surgery, you know, there could be a myriad of things wrong but I feel the quickest solution is diagnosis and drugs, that's the quickest way to get rid of the problem as you see it and maybe that does stem from, you know, immigration and people not really knowing where to put themselves and not knowing what to do.

And that's not, -I don't think that's just about mental health, I think that's about quite a lot of things. You see a group of black boys standing on the street together you immediately think they're up to no good. Where does that come from, it comes from stereotypes, where do they come from. The majority of what you see is reported about these people on TV. If the world suddenly flipped and on TV for every black person you saw a white person, and for every white person you saw a black person, you know, I don't think people would be able to cope with that. It's just, there's all the little things as well that perhaps other people don't, don't think about. My name sounds English, I show up for job interviews and I see people and they're a bit, 'oh OK', I'm not what they were expecting. I think it's always little things. It's uncomfortable I feel, and so when you add mental illness on top of that, people don't really know where to put themselves.

Raye says her sister, like many other people from minority ethnic communities, has become...

And you go to those hospitals and you go to those wards, it's the same thing over and over again. Black and ethnic minorities are in the majority and everyone's just sitting around smoking and watching TV. In my opinion, this is what I've seen, it doesn't seem to be very constructive, they're just shot full of drugs and, so they come out and they're institutionalised as with my sister, that's just been in and out, in and out, in and out, revolving door. Every time it's almost as if she's lost a little bit more, she'd come out and she couldn't make herself tea or she'd wait till six for her dinner, she'd be really hungry but she wouldn't ask, you know, and, so I'd be there trying to give her, like OK, hospital time's around sixish, she'll have her dinner, so trying to give her, her dinner and stuff like that. My dad and my brother aren't so bad with that but my sister has been and it's hard because she used to be a size 10, 8 and she's even way gone past me, every time she's been here ill she's put on weight. 

This was before she started getting ill and every time she, -it's almost like she loses the will to live, she just, she does the bare minimum now and she doesn't really wash her hair and, and stuff like that, doesn't really look after herself so I've tried those things and then I've tried to do her hair for her and all those sort of things, we've been shopping and all that sort of stuff.

Being a 'super hero' isn't good for Raye or those she cares for.

But I've been trying to move out of home and can't really afford to, and just try and figure out what I want to do with my life and things like that. Sometimes I feel like I have to live for the three of them plus myself, you know, I feel like a big super hero and a lot of my stuff used to centre around, I need to earn enough money so that I can build a hospital or I can build purpose built accommodation for my brother, my sister and my dad so I know they're OK because they all live in crappy council flats which I really don't think help.

I just have to, yeah, accept that I am powerless over their stuff. I can ask my dad about his medication and he can tell me the truth if he wants to. And my sister, she can do her own thing, my brother can do his own thing but I know wherever I go that, that's always going to be there and it would be nice to just be a sister or a daughter and not have to be their, sort of caretaker, it would be nice to not know so much about what's going on in people's lives, you know, but I live at home with my mum at the moment and I don't really see that happening until I move out.

Raye puts everything on hold when she worries about her father.

She was having a party so I went down to London for her birthday party and I just went to check on my dad because I knew he'd been a bit funny, I just went to check on my dad before I went to her party and in the end I didn't go to the party because he wasn't there and I was worried so I ended up waiting outside to see if he'd come home. Outside his flat and I still didn't see him that night but I would take the smallest thing and turn it into a massive, you know, OK, so he's not at home, so he must be out doing the crazy thing and the next day he was like, 'Yeah, I was fine, I was probably just asleep', or something. I don't know, maybe he was or he wasn't but that's, you know, it's always been crisis and it's always been drama, it's always been, Oh, something's odd so everything must be put on hold until I find out what it is.

When she returned after two years abroad, her brother hadn't taken on much of the care for their...

It was like I never left, it was literally like you took two years and you just went like that and it just, and I don't know how much he would've done in those two years. Maybe my mum would've stepped up and done some more. But I think it's hard for her because my brother and my sister push her away and she doesn't really cope with that very well. She doesn't really want to look at that, I think she finds it a relief that she doesn't have to but for the sake of keeping up appearances, she'll do the hospital visit, even if it only lasts 30 seconds, she'll go up and she'll see them and the last time she went to see my brother when he was in, he didn't want to see her and didn't let the nurse let her in so I don't think she feels there's much that she can do really apart from, for me to go. So I don't really, I don't know, I don't think, I don't think he would've done too much but he probably would've gone to visit a bit more than my mum would've done.

While wishing for normal relations, Raye feels she needs to check up on her father and sister to...

I think it would be a lot easier to just even to sit with my dad without having to scan the room and see if I can see his medication and see if I can see the date to see when he picked it up. I wait for him to go out of the room and check the box to see if he's, -all the things that I don't, I don't say those things, how can you, how can you say to someone right, have you had your medication today and have you been taking it consistently because I'm not his parent and that's what I've been trying to be. 

My sister, it would be nice to see her relaxed and it would be nice to not have to go and check to make sure she hasn't done anything silly with the money. It's all the checking and the remembering of conversations and, you know, it would be nice to, - it would be nice to see everyone more as well. Last time we were all together as a family was at my granddad's funeral in February and my mum and my dad, my sister and my brother and my younger brother, we were all there and I haven't, you know, had that, - us all in the same room together at the same time since I was what, I don't know' must have been 10-11 and I think maybe the relationships with my mum would be better and maybe we could do stuff as a family and it would be the way it's supposed to be in a natural order which is I'm my father's daughter, they are my brother and sister, I'm not their caretaker, I'm not their mother. I try with my dad, we go to the cinema every now and then and I try and arrange to do stuff with my sister but for me it's, it feels like such an effort. I think it would just make, it would just be so much easier.

While her father can present well to doctors, she is used to having him sectioned when he needs...

How did that feel to section, to have to section your dad?

It's hard, but now I feel like I do it and I don't really think, I'm detached from it because I know what it's about and back then it wasn't really explained to me, the powers I had as a next of kin, so they would end up staying mostly the full term or near enough. My brother won't really have me as a next of kin. My sister, it's not really been that bad but with my dad, it's more often than not my dad that I end up doing it for. And that time was particularly bad because when he gets ill he goes running round with not many clothes on and things and he's not a danger to anyone but himself but we'll find him in the park at four in the morning doing his exercises naked and all that sort of stuff and, you know, he keeps getting picked up by the police and all that sort of thing. He's on to the game, he knows, they're all very smart and I think when you have an illness like that you know how to play the game. He'll turn up at the doctor's appointments and they'll appear to be, you know, normal and OK.

She thinks a mix of genetic and environmental factors caused the mental health problems her...

Yeah, both my parents were and then they came over and his dad died and he had younger brothers and stuff back home so he was working to support them as well. So from what my mum has said and what my dad has said I think he was just working 24/ 7 and it just got too much and he couldn't cope and that kicked that off and my mum has said that before that, he'd act a bit strange and then with him hitting her and stuff, I don't know what went on around that but it possibly it was his, you know, stuff. With my older brother and sister I think genetics and, and I think environment as well. And I think because of the way they blame my mum, I think they feel it has a lot to do with my mum and I know the term that's used, like schizophrenicgenic mother and I'm not, -at first when I found out I was like, yeah, it has to be that, because I needed to find something for the reason why, then I was like, you know what, you can't put this all on one person. I don't think environment helped and I don't think, I don't think our upbringing helped in the sense of the church that we went to was so different and then you try and assimilate that with being a normal child and trying to fit in with the rest of the family. And the rest of the world and when my sister and my brother started to get ill quite a lot, I feel a lot of it was where they were living as well.

Raye has depression and an eating disorder, but feels luckier than her father, sister and brother.

I don't know how much genetics is involved or how much of this is environment but, you know, from my dad to my brother to my sister, if depression is the least that I get and an eating disorder that I can look after, then I feel pretty lucky to be honest. My brother so far, my younger brother is the most normal of us all in that he just gets on with his life. But I've been trying to move out of home and can't really afford to, and just try and figure out what I want to do with my life and things like that. Sometimes I feel like I have to live for the three of them plus myself, you know, I feel like a big super hero and a lot of my stuff used to centre around, I need to earn enough money so that I can build a hospital or I can build purpose built accommodation for my brother, my sister and my dad so I know they're OK because they all live in crappy council flats which I really don't think help. But it's always been, -it's always been that sort of thing so when I got depressed I just, I couldn't cope with my job, I was finding that stressful. I was finding living at home stressful because I don't get on with mum and I was finding, -I think they'd all just done their hospital thing or I think my dad was about to get ill and I couldn't really cope and just it felt like a bit too much so I was on anti depressants and I had counselling and then I went to OA, this is 2006, I went to OA so I was, 2005.

What is OA, sorry?

Overeaters Anonymous. 12 steps like AA but for food because that's how I cope, I eat, I just binge is what I do. So I don't, -I think maybe it was just loads of things at that point in my life and I just really couldn't cope anymore, I just kind of broke -and I didn't tell anyone until it was over which is what I always do with stuff like that because I don't feel they can handle it and I'm trying not to do that so much at the moment, you know.

Raye feels she needs to set new boundaries both for her father and for the health and social...

So this now, my dad being, this is the first time with my dad being in hospital that I've been trying to say no to things that I can't do. Like with turning off the radio in his flat and I asked the housing officer if he could call the hospital because my dad was out still on day release. And he was, -his thing was no because the hospital staff can't do that because they're not paid to do that and you'd be doing us all a great big favour if you could go up and turn off his radio. I don't really know where the next of kin thing comes into that but I don't really feel that's appropriate, it's my dad's flat and it's his stuff. If they have to break the door down, they have to break the door down. He was, you know, just saying can you, can you and it was old behaviour for me so I went up and I turned it off and almost got into an argument with his neighbour who wanted to have a go about the noise and I met my dad up there and he had a go at me about the noise as well because I was asking him to turn it off for my sake and he's like, no, they can contact my solicitor, he gets really arrogant when he's not well as well. So I'm just tired of that and I'm really tired of being put into situations that don't need to happen like the thing with my dad and his radio, that's not my responsibility. He has a new social worker this time around and my dad's health records go back 40 years and he only had the past year's worth so he didn't know, so I ended up telling him what was going on and I can be very matter of fact about that, it's just what I've come to expect.

As a teenager she was 'freaked out' by her father's irrational thoughts.

I was a teenager, whatever, and he came to, he came to visit and there was no one else in apart from myself and he came over and he was actually quite strange and this is when I worked out the paranoia thing. I'd never been told what he had or what was going on and he came over and he was asking me if I knew anyone called Paul and how I knew them and what they did and all that sort of stuff and he told me, 'You can never marry someone called Paul', and all this sort of thing and I'm still freaked out by that a little bit, I know without a doubt I will never marry anyone called Paul because this thing, -I know that there's nothing it in and I understand that it's my dad's stuff and it's just the way, what happened, what he heard, whatever but I was quite freaked out and he kind of looked a bit wild. 

The next day he came back and I realised afterwards he made a real effort to appear normal and he was asking me, do I prefer him the way he was the day before or the way he is today and I didn't really know what to say and I said, 'Today', because he was a bit, a lot calmer and there was none of this, 'Don't marry people called Paul', type of thing. So I've always, I don't know, always found that hard because after then I realised the little things that my dad has with his paranoia, like he thinks people have been into his flat and they haven't so he leaves notices up like, 'The police are watching you', and, 'The milkmen aren't really milkmen, they're the police and they're watching you', he has all these notices up in his flat and I realised that maybe it wasn't what he thought it was or what I thought it had been.