Mental health: ethnic minority carers’ experiences
Reasons for caring and carers' qualities
Growing up with mental health problems in the family
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.
Caring for a son or daughter
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.
I have two sons, both are bi-polar and have a bi-polar disorder. The first one happened when he was about 19 or 20, -then within, then the second one happened, he was only 16 and at first I do not understand what it is all about, because my first son always do something, and I would get annoyed and I would always think that he's lied to me. “You lie to me. You lie to me. Nothing wrong with him”. Until, until one day the police pick him up and put him in the hospital. Then I realised it was a psychiatry hospital, you know, for mental patients. So I said, “There's nothing wrong with my son, why is he there”? Then the psychiatrist, -make an appointment to see the psychiatrist. The psychiatrist told me my son has mental problem and, you know, I could not accept it because he was doing well in school. But his problem is the company he mixed up with. My first son, when he was about 16, he start going out with the wrong crowd and they used to have parties and all these things. Actually he was living with his mother. I only see him weekends. And every time I see him, you know, we always do something. Then when his mother threw him out, he came and lived with me. Then I realised all this happening, which was a shock to me. Then they told me he was on drugs, and I couldn't believe it and because I only see him once a week, Saturday, Friday night, Saturday night he goes, -or Sunday night he goes back to his mother. And I have a talk to his mother. His mother says it's common. Everybody in school is doing it. So when he was living with me, I move him from one school to another, he, every time he get suspended or he gets, you know, suspension and all this thing…
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' ...
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.
Caring for a partner, parent or other adult relatives
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...
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.
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.
Reasons why people care
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.
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...
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.
The qualities of carers
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.
Taking on too much
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...
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').
Last reviewed September 2018.
Last updated November 2010.