Some of the carers we spoke to had grown up with mental health problems in the family and had gradually become the main carer. Some of these carers said they 'didn't know too much about what was going on' until they approached their teens and started to suspect 'something was wrong'. Others had always known about the mental health issue even if 'no one talked about it'. While some had been given a lot of responsibilities for cooking, cleaning and looking after brothers and sisters from an early age, for others, the caring duties only kicked in when their mother or other relative died or became ill themselves.
Of those who cared for their child, many had started noticing signs of something being wrong when their son or daughter was in their late teens.
Gou was unprepared when his two sons developed bi-polar disorder partly related to drug use.
Then the problem is always go back to the same group of friends. Yes but then again that's not uncertain that- But then again, when they told me he's mentally ill and the psychiatrist say to me, “Partly due to drugs”. So at the beginning I can't believe it, you know. Then before you know, the second one was thrown out too, and they came to me, the second one came to me too. And he was no better, he was even worse, because he start to, he hear voices and he was saying things which I don't, I can't see. He was talking me about the spirit, the ghost, you know, somebody is following him and all these things. Before you know, he'll end up in the same, the same hospital. Then they told me it's very unusual for two brothers to be there. Then there's no answer.
Some said their son or daughter became very withdrawn, unable to work or study, that they were talking to themselves, restless or that they didn't express emotions in the ways other young people did. Many of these carers said their son or daughter had been using drugs in the period before they got ill.
Looking back, some said they hadn't picked up on the signs of mental health problems because they hadn't known what to look out for.
Jane thought the early signs of her daughter's mental health problem were normal 'teenage stuff' (played by an actor).
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.
Some parents had struggled to get their son or daughter to see a doctor. For some, a diagnosis was made quickly, but others had to wait a long time before they knew what was wrong.
Nick was worried about his son's behaviour, but was told by doctors it was normal.
Oh yeah, definitely, his behaviour was completely odd, because he's a very nice docile chap, he used to be. So I went to the psychiatrist -he was a consultant, privately, gave him a written sheet of paper with everything I noticed as unusual. I saw him reading it and he saw my son for about 10 or 15 minutes, or about 20 minutes, I suppose. And then he called me and my wife and we just repeated what was there on the paper and I also showed a newspaper article. It was a critique of a play. My son said, 'Look it's all about me', and that is unusual behaviour, -for me as a lay man, but the consultant didn't take any notice of it, or rather he just dismissed it and he said, 'Send your son back to university, he's all right'. He never gave us any warning, never told us what to watch out for, nothing at all. Then things got worse and then, going into detail and the one that struck me most was, one night he was working in a video shop, part-time. Then he rang at about 10 o'clock in the night and said, 'Dad, there's a China man waiting outside with a baseball bat going to hit me'. And then, and I thought things were no good. I went, or I wrote to the consultant and he says I notice that you're worried about your son, I'll see him but will be '60 for half an hour. He wasn't worried about why my son got bad etc after seeing him, or nothing. I thought it's useless at getting on with this man, so I brought him home and after the holidays we signed him up at another university nearer London. There too he used to say I can't stay in this room, people are plotting against me, and this and that. There he used to move from room to room to room to room. Finally we got so fed up of it we bought a place for him, just two, three minutes walk from the campus. There too he was very concerned about security and all that. He wanted the back door locked and wanted new locks put in the house. Once when I went around he locked himself up in his own room and wouldn't let me in for about two hours. So I said OK, I will change the locks, then he opened up the door and we were all right after that. Then one day he was supposed to come home during summer holidays, he says I'll catch the tube Dad, from [name of station] and ten minutes later he rang and says 'I can't make it, I'm too scared to travel'. So I went and picked him up, came home, one week later he tried to kill himself. That's how from that day onwards I'm a carer.
For some of the carers, especially those caring for a parent or a husband or wife, their caring role had emerged gradually over many years.
When his mother's dementia got worse at the same time he had depression, Anton stopped working and moved in with her.
The company I worked for, I had to travel all over the country, so that it was a central point, I was happily living. Although I got struck down with manic depression, this was in 1988, but at that time I was that much younger, and I was able to fight it through, and ride it through. I still kept my job, and managed to carry on. My mother got struck down with dementia. When she first got dementia, I used to come along twice a week, once on a weekend Saturday or Sunday, once on a week day, come along, do the shopping, make sure everything is OK, she's all right, and all these things. But as time went on her illness progressed, then it got to a stage, it was a bit dangerous to leave her on her own, because she will turn on the gas tap, and then will forget to off it, and various other things. And then she couldn't cook any more, and then we arranged one of our neighbours to come along, and bring some food, and then she found it difficult to cope, she might leave the door open, and that sort of a business, so-. Then I decided I better come and stay here, and look after her, so I had to give up my full time job, and I started doing part time and contract work, because obviously I needed the time for her. Plus with my depression I also couldn't handle nine to five, or travelling 1,000 miles a week and dashing around, so that is how it came about, about five years ago, right, looking after my mum, and that's it, and also now we are just carrying on, yeah.
Others talked about how they had worked very hard when they first arrived in the UK, and had assumed that the first signs of mental health problems were really just tiredness or 'wear and tear'.
For some, the person they cared for had other health issues in addition to a mental health problem, such as epilepsy or diabetes. This had made it harder to get a diagnosis and proper treatment. One carer said it had taken 23 years before his wife was diagnosed with depression.
For others, their caring role came about more suddenly.
Nita's mother's manic depression came as a shock to her.
Aiko only learnt about her new husband's mental health problems after she moved to the UK.
Initially I didn't know that I was a carer, and I didn't know about what caring was. My story is that in 1984 when I was 24 years old, I was married at the time, and I had a phone call from somebody in our family saying that my mum was poorly. And when we went to see her, I mean, obviously my first reaction was like panic, 'What's the matter with her?' When we went to her house, I hadn't realised that she had been packing things up upstairs, and she had been sort of finishing things off, and what she said to me was, I'm going to die on a certain day, and, you know, like this is a particular significant day in the calendar. And I can't remember whether she said, -she says, 'Oh you're coming with me, and your brother's coming with me'. And you know when somebody talks to you, and it's not, it's in those kind of terms, I mean, I just, -I didn't at that time know that she had mental health problems, I just, thought -because she's my mum- I thought maybe there's some truth in it. You know, like, -and my brain was, my mind as engaged in thinking, 'What, what is the truth around this, is there some truth in what she's saying?' Because, you know, what your mum says to you is real, -it's really, -like, well you're really secure in what a mother is and that. But I think the whole experience knocked me sideways, it really, -like the whole foundation for my life was sort of completely shaken.
Before I became a carer I was living in Japan. I had a career, really enjoyable career. I met Jim in Japan while he was working in Japan and we decided to be together, but that was followed by two years of separation. We had to sort out our, -well life, to get together. But at the time I didn't realise, or I didn't notice any signs of Jim's mental health issues. But when I moved to UK in 2000, it didn't take very long me to realise some signs of his depression and rage, and difficulties to deal with other people. I thought it could have been just to happen to anybody and I didn't realise that it could be named as mental health problems. I just thought it's just his personality and, maybe he's very sensitive to stress. We married a year later. And then shortly after that he had a nervous breakdown, really bad one. That happened in where we used to live. And since then Jim had to take quite a long off sick period and in the end he was redundant. And things got really worse and our life was almost like -in a jet coaster, and we were just carrying on to going down, down, down the slope. And then we eventually decided to move away from because when Jim had a nervous breakdown that was triggered by his work stress, having me around, and also we had to deal with a lot of racial harassment by local youths. So we decided to come down to live here. But still we, -I wasn't identified as a carer at the time. Jim as a bit refusal to see doctor but then things didn't stop to escalate. And about year later from the point Jim finally sought some support from GP, and still from the point it took a further one year, me to be identified as a carer. But I had no idea what carers means at the time, and then what I can do to support Jim, just, but I was so determined to take our life back together because that was almost like a, how can I say? Crisis all over the world, and then we didn't have settlement life in marriage, all started all together. So it's just about -before, around the time when I became a carer.
Many of the carers we talked to said the reason they cared was simple: they needed to look after their child, mother, husband or other relative. Some said they had never thought about why because 'blood is thicker than water' or 'he is my husband, who would care for him if I didn't?'. Many of the parents made comments such as 'I am his mother, I should take responsibility and care for him'. One mother joked that 'I have told him that if I was his wife, I would have left him'. Some said that 'giving up 'on a relative would be 'like I disowned him'. People also said it was part of their culture to feel responsibility for others (see 'Relationship to the person who is cared for').
Some carers saw it as a moral or religious duty to care, or they believed in the values of giving care and love to those who are ill or vulnerable.
Indira and her cousin decided to stick by their aunt when others gave up.
So the next day, we had a meeting at the hospital, where the bank and one of her sisters came. The sister insisted that she is mentally unfit to live on her own and no way she should be taken home. But my cousin said, 'No, I will not leave her, this is not the place for her. She will come home'. And then they fought for almost two hours, while I just sat there taking notes. It was the Bank Manager, her sister and the doctor at the hospital against my cousin on his own. He said, 'In no way I will leave her. She is my family and even if I see a stray dog on the road, I will protect that dog, because that's the way I am. And I will not go home without her'. And they fought and fought. I could not believe that her own sister would fight for her not to go home. Not even give her a second chance to find life in a better way. But anyway, at the end of it, when they knew that this man would not give up, they said, 'OK', the doctor said, 'OK, take her home, but I can guarantee, I can assure you that she will not live for more than three months. And within the next three days, if you bring her back, I can also assure you that there will be no bed for her'. So with all this and my own, I was determined at that moment I said, 'Come what may, I will not abandon her'. I came to know she is my aunt and I said, 'Whether she's my aunt or not, she is an old lady. She is a fellow human being, there's no way I will leave her. I will fight to the end. I will fight with her' and we brought her home.
People said they needed to know they had 'done their best' to help their loved one. Some felt helping others was rewarding and said they also took part in other types of voluntary work to help and to 'give something back'. Many of the carers we spoke to had other caring responsibilities too, and some were active in voluntary work saying 'it is in my personality to try to help others'.
Leah likes to help other Chinese people with translations when they go to the doctor (recording in Chinese).
Since 1969 until now, if I knew friends or some people, if there is general illness like high blood pressure, diabetes, cholesterol, heart disease or moodiness, I will provide interpreting for them when they go to see their GP. From 1969 until now, -I have always been doing this. My English is not very good, but I am not shy to speak English. This isn't said by myself but other people, 'Your English is not very good but you are brave enough.' Although I don't know the exact medical term, I will try to give examples to explain by telling them the symptom and feeling of the patient. I would tell the doctor some examples and then the doctor would understand. I was lucky those doctors were nice. Once I went with my friend, at that time, 20ish years ago, my friend's daughter is now in her twenties, at the time my friend's daughter was 3. I bought them, I bought the mother and the daughter and I interpret for them. The GP said why the girl didn't speak English. I said to the doctor, “She is only 3 years old, she hasn't gone to school yet” Then the doctor lost his word.
When people described themselves and other carers, many talked about how carers are able to cope because they are strong people. Many described themselves as having 'a strong will,' as determined, or not being a 'giving up kind of person'. Several commented that caring 'comes from the heart' and requires passion and a wish to help others. Carers were also seen as people who wanted to tackle problems instead of ignoring them, and 'fight for the person you care for' to 'keep people alive'. Others said carers had personal qualities that were lacking in many professionals.
Ramila says carers have an understanding and hope that professionals don't necessarily have.
And also there is obviously the individual person's own difficulties and sometimes, you know, but it's just that our motivation should never be lessened when we work with public because, a little kindness, a little more understanding, a little kind of listening, means so much more to other people really. Of, all the carers that I come across, they are very understanding people, they, -I think they also understand the restrictions of life. They don't expect the earth but they, you know, I think they just wish that, they're hopeful, I think, I was thinking over it and I think each carer in the mental health who's looking after somebody with mental illness, is always hopeful that the person will get better. And sometimes I think the professionals don't have that hope. Because the professionals know how bad the illness is, what the restrictions are from medication side, and the therapy side. So, and also perhaps they're a bit more detached. They don't have that close relationship, but I think carers are right. I think the professionals are wrong. Because we, I, you know, was recently thinking of the situation with, if somebody is on a life machine, the medical professionals will do anything and everything to keep that life machine going, why can't everybody in mental health service do equally the same, of doing anything and everything to get the person back on their feet?
Other qualities people said carers need to have included 'understand[ing] the restrictions of life', to not 'expect the earth' and to be able to put up with a lot of uncertainty and responsibility.
Ramila thinks carers sometimes put up with 'being blamed' because they feel so responsible.
But, -caring because, -they just feel responsible. Maybe the person who suffers from mental illness blames them quite often, very often. And the professionals blame them. And quite often in the acute services, if the staff don't understand or if the carer's been nagging them for something, then the staff are, you know, always going on about us because they've been angry with the staff. So the carers at the end feel responsible, that they are the cause of all this, you know, so. I don't know, -so reason works I suppose. And I would suggest that to all carers. That we may in the first instance feel that we're to blame but it is only human sometimes to feel frustrated and angry and things, which don't, -we expect things to work out perfectly, people to understand us all the time, when, you know, maybe they're not able to, really.
However, some carers really struggled with their responsibilities. Some said although they were 'reasonably confident', caring for someone with a mental health problem had really 'stretched' their personal resources. One or two said it was 'standing up for someone against the NHS' that had been the hardest battle.
Other carers said that it was in their personality to take on too much responsibility and to put others before themselves, and some found this really difficult (see 'Getting the balance right'). One carer even said she was so 'enmeshed in it that it is hard to talk about myself as a separate person'.
Raye felt she had to take on responsibility for her father, brother and sister but she says she took on too much.
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.
Some said carers need to think about their level of responsibilities because taking on too much 'is not healthy for any of us'.
Others, who struggled with their caring responsibilities said they had needed to take a 'healing journey' or that they thought it was important to have support services in place to avoid 'young carers ending [up] like me' (see 'Stress and carers' health' and 'Advice to other carers').