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Mental health: ethnic minority carers’ experiences

Advice to other carers

Many carers find that talking with other carers about their experiences really helps. Here we summarise what the carers we spoke to wanted to tell other carers. 

'Look after yourself'
Remember that what carers do is valuable and a 'really important part of society, and you make real differences in people's lives'. To be able to care for others properly, however, carers must look after their own well-being. 

Caring for a family member with mental health problems can be hard emotionally. People said 'it's going to be a roller coaster' and so it is OK to 'acknowledge your feelings'. People said it is good to talk to someone else about your frustrations, hurt, anger and other feelings.

People said carers must find time and space for themselves and do things that make them feel good, because 'you can't keep giving without getting something yourself'. Meeting with friends, joining a gym, or keeping active in other ways were some suggestions (see 'Getting the balance right'). People also stressed the need for regular breaks and respite that suit each carer's circumstances.

 

Carers' health can suffer, so carers must get support, find time to do things for themselves and...

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Carers' health can suffer, so carers must get support, find time to do things for themselves and...

Age at interview: 56
Sex: Female
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Gosh, it's such a huge thing and maybe carers know it already really, basically. But I would say it, because I know that over years and years, carers themselves will become ill, you know. Quite a lot of the carers themselves become ill so. And I personally, -I think I may be a, a bit depressed because some friends have noticed me, and I would hate to confess to it, that I've been depressed. But things have kept me going, like my job, I've been, as I said, I've been very fortunate. My friends have kept me going. Philosophy has kept me going. So if there has been depression I've just accepted it as a part of everybody's life, not just my life. I've felt maybe everybody is, human being goes through these ups and downs. And there's nothing that can be done except just carry on and it goes, passes, unless it's to such a degree that you need, then, help really. But health as well, -because my health has suffered and whether it's that, it's directly as a result over this part of the living, but I know that, you know, it is even much more essential for people caring for people with mental health problems that they look after their health, they find time to do things for themselves. Although, there's probably not a lot of respite available but find some kind of activities, which forms as their respite. Try and empower the service user as much as possible because as carers we want to do everything for them really. And if there is no advice, no help, then I think, -and especially parents who look after their children, they carry on looking after them, providing accommodation for them. But I would suggest that early on, even if it's very painful, to let them go. Let them live independently because that then creates that distance a little bit. Because one of the other worries of carers always is that, when I grow old and die who's going to look after this person? If carers are always going to be worried about it, it's better that they have that difficult experience earlier on, and let their child or sibling, or whoever, parent, live independently. Because then, -I know it's difficult, you know, and I don't know how it works out, but as far as possible. Then if there are services, they will come in. Even when, as in my case where maybe there are no services that come in, but at least you're aware that that person is living independently, and they've got their own home, you've got your own space. Because if I, as I said earlier that, if I had to live 24 hours with my brother, all in the same space, I know I would lose my temper much more quickly. And I would find it harder, much, much harder.

'Think about what you can and can't do'
Some carers said it is important to accept what you can and can't do. Carers who do too much wear themselves out and their own mental health suffers (see 'Getting the balance right' and 'Stress and carers' health').

So people said they had to accept that 'you can't do more than your best,' which 'may never be perfect,' but believe that 'if you don't do it… the sky isn't going to fall on your head'.

People also said carers should let go of some responsibilities so the person they care for becomes as independent as possible. This is good for the person who is unwell, and gives carers more time and space to themselves. It can also help the person prepare for when the carer is no longer around. 'Pulling back' may mean 'learning to say no,' and this can be hard, particularly at first.

 

Don't give up on the person you care for, try to understand them, but don't pamper them.

Don't give up on the person you care for, try to understand them, but don't pamper them.

Age at interview: 42
Sex: Female
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Let them not give up. They must not give up. I never gave up on my brother. I never gave up on my dreams. I never gave up one day that the situation, 'that this one is too much for me, God I cannot handle'. I never gave up. I did not give up. And their approach that they are using, let them take advice from other place, let them see the approach others are using so that theirs would be good. Never pamper them too much. Mental health doesn't need pampering.

You need to be a bit harder on them?

Yeah. He doesn't need pampering at all, because I saw this with my eyes. Even though that it happened to me, you know, I won't have another family would be passing that kind of situation, that is where there's some others who have that.

Yes, what I would advise parents passing through this kind of situation, because my mother went through it. As parents don't ever give up on your children, no matter how bad. No matter how bad the situation is, don't give up on them. If you give up, that means you are telling the devil to just take you away, take away and just let them go and die. You understand? Try and always understand your children, you understand?

 

Treat people with mental illness with sympathy and understanding (played by an actor).

Treat people with mental illness with sympathy and understanding (played by an actor).

Age at interview: 59
Sex: Female
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My advice to them, please be patient, more sympathetic towards them, try to understand them, and they'll need, -the mental people need more love and affection, as much as you give them they come nearer to you and they open up with you that -why they are suffering and how they suffer, and that -if they come to the knowledge that you are more loving [towards] them, more affection, give them affection, they'll open up more and more and they forget their disease and they can tell you how they feel it, and that way you can give the treatment and they come out from that illness.

'Stay strong, don't give up'
People said that caring is hard at times, but 'don't give up, stick with it', 'fight for the person you care for, she or he is precious'.

 

Look after yourself, do your best and don't give up even when you feel down.

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Look after yourself, do your best and don't give up even when you feel down.

Age at interview: 65
Sex: Female
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The advice is, I can't say about, do the best you can, meaning, because I do know the advice that I get when I joined the different courses is, 'you come first'. Now my advice is, you come first, yes, but don't let any situation get you down. Be strong. Firstly, think about it within you that are you, -you have accepted the role as a carer, so go for it. Don't, you know, don't just take a back step and say, 'no, this is too much for me'. If you have accepted it, you must. It might be tough, look out for where you can get help, but don't give up on it. Because if you give up, all is lost. And the whole thing is, you don't want, -not a question of winning a battle, but you don't want to lose the cause, why you're caring. Why do you care for the wellbeing of that person? It could be your husband or wife or anything, that's what it is the cause for it. So don't give up on that, because -keep yourself strong for that. And always think that the other person is in such a bad way that she, he or she needs you. So look at it that way, that you having the strength and the mind, you know, go for it. It's silly, but, -you know, because there are times when you do go down. You do feel, for instance, the last, -with this incident of them doing this on my aunt's bed, I cried till late in the night, for the simple reason that I couldn't believe they could do it. That any human could do it to my aunt. I really cried that night. I cried because, not that they, you know, hated me or anything. It couldn't matter, but could they have really left my aunt like that? I could not believe that somebody would do that to a helpless old lady. So you get into these terrible situations where you feel desperate, because what else can you do?

To care, people said, you need strength and persistence. They also said that 'what doesn't kill you can make you stronger' 'Learn from your experiences; don't let it crush you, but let it help you go forward'. Some said religion or spirituality could be a source of strength. For others, strength came from family and friends and their love for the person they cared for. Most agreed that support from other carers was especially empowering.

'Ask for help'
People said that everyone who cares for a mentally ill person needs help and support. Carers advised others to get help from family and friends as soon as possible. Many found local community and voluntary services especially supportive and better able than statutory services to give culturally appropriate help. These were also places where people met other carers they could learn from.

Remember that supporting carers is part of health professionals' and social workers' jobs (as well as that of other service workers) so people should 'not be afraid to ask,' and should involve services as early as possible.

 

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

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

Age at interview: 59
Sex: Female
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Well I talked about. I mean, the first thing, obviously if you have a problem, is to go and see the GP, because a GP is the first person who can put you in touch with professionals, the psychiatrist and so on, so it's to go and see your GP, and if you're, the person you are caring for doesn't want to see anyone you can go to your own GP. Because often people say well he doesn't want to, but you can go to your own GP and explain the situation, and, you know, the GP, even if it's not the same surgery as the other -person you care for, they can, I don't know, suggest things and so on. And ask for, I think, a home visit if the person doesn't want, -that's the one thing I regret, really, not to have done. And not to be, not to think that it's going to get any better, because it's not going to get any better. And to contact MIND, Rethink, those are the two main charities who help people with mental health problems. Because then you are going to be put in touch with other carers and you are going to get information as well, and you can see people on a one to one basis as well, you know, so you don't have to, if you don't want to expose your problems in front of everybody.

People advised new carers to be assertive: 'find out what you are entitled to. Then fight for it'. 'Don't be ashamed to ask for what you are entitled to. Don't let anyone condemn you because you are getting support'. Even if involving others could be 'a challenge because it is against the culture', carers could contact as many services as possible to get help. While it can be frustrating to deal with health and social services, people said building good and trusting relationships can make things easier (see our section on 'Carers' experiences with mental health services').

 

There is government support in this country, but you have to get out and ask for it (recording in...

There is government support in this country, but you have to get out and ask for it (recording in...

Age at interview: 55
Sex: Male
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If you look back and think back about caring what would you say to someone?

In this country you get a lot of government support there is no need to suffer about what to do or what will happen. For resources, if we sit at home, nobody is going to come and help you. We have to get out and ask someone, but our people are shy (reluctant) to discuss things openly what is happening in our homes. But it's necessary because only when we talk to someone will we get help without that we will not find a solution.

'Empower yourself, ask if you are not sure and become an informed carer'
It is important for carers to inform themselves: 'Take all the information you can, go through it. Find things out for yourself and try to go beyond the surface. One source of information may lead to the next'.

Some said 'don't think professionals are always right, they are human too', and 'don't follow the advice of others uncritically'. With the right information it can be easier to know what questions to ask, and to be more assertive and confident. Several carers said that 'if you don't ask, people don't tell you.'

Some said that looking back, they wished they had acted sooner than they did when they first noticed signs that something was wrong with the person they cared for. Instead, 'if you feel something is not right, speak about it,' and don't waste time 'thinking it will improve by itself'. Carers also advised others to learn about mental health problems and how to deal with it from professionals, other carers, books or the internet. 

 

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

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

Age at interview: 69
Sex: Female
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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.

When caring for someone with a mental health problem, people said you need to try to 'understand how their minds work,' to treat them as individuals, with patience, empathy and love.

Some thought we all need to recognise that mental health problems can 'happen to anyone,' and so there is never any reason to feel ashamed. People should recognise that people affected 'can get better, can get on with their lives,' So it is 'important not to hide it and to ask for help'. 

'Speak out, make others listen'
One woman said 'I can talk to you, and you can feel a little sad for me, but you still don't know what it's like'. Many stressed that because others find it hard to understand, it is really important to speak out. Overwhelmingly, carers said 'tell professionals -and others- about your experiences.' That way, they can give the most useful help. Remember, even if 'you've not gone to college, you're living the experience, so you know more than they know'.

To help carers feel more confident when meeting health professionals or others, some suggested 'take a friend or someone you trust with you for support'. Some prepared for meetings by making notes. People also said carers should not be afraid to ask lots of questions: 'There is nothing wrong with asking until you're satisfied.'

Sometimes it is difficult to get people to listen, and people said you need to 'raise your voice,' 'speak out, learn to stamp your foot,' or complain if things are not done properly. 

 

If you are not satisfied with the home carer service, complaining can make a difference.

If you are not satisfied with the home carer service, complaining can make a difference.

Age at interview: 63
Sex: Male
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Well firstly, though there's another secret I found out though. Now, these carers' You can complain. Now, if I complained to the company, which provides a care, they've got to make an entry in their books. So when the auditors, or people who monitor come along, and they look at the complaints book, and if they get too many complaints, then they'll fine them, and that sort of business. So once I said to one of the carers, 'oh, I think, the second one didn't come', I said 'phone up the office and tell them', she said 'no, no, no, if we phone up they don't like it', because, about the complaints procedure, so I've got to ring up. So what should be there though, there must be an independent complaint set up, so if I'm not, if you're not happy ring the independent people, and then they will record it, and they will have to deal, they have to phone up the carers company and tell them. By that way something, something will be done, even the company, which does the caring will get kicked out and all these things. So when I had the problem, when this carer, -the caring company was trying to mess around with it, I wrote a letter to the Director of Social Services, 'Three questions I need answering. When you privatised it, did you set your standard and give the caring company a procedure that these are the things they'll comply with, firstly? Second question, who checks the compliance, right. And thirdly, do you ask, -get information from the clients, or the receiving, -who receive care from them', so I asked those three questions? So if you start writing letters like that to the top, then they know you mean business, yeah. So my being an auditor I know all this, I know the system, I deal with it, but ordinary people they just get fobbed off, they say you can't fight with the big organisation you see, yeah.

People also advised others to keep in mind that carers are entitled to be informed about the care of their relative. It is possible to ask for meetings to discuss medication or other treatment, or even to change GP if communication is really bad. 

Taking part in carer's forums or other organisations was suggested as a way of joining forces with others to campaign for carers: 'if we all speak loud enough, maybe we'll be heard'.

 

If you feel something isn't right, speak out about it. Ask questions, make notes and contact...

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If you feel something isn't right, speak out about it. Ask questions, make notes and contact...

Age at interview: 42
Sex: Female
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Based on my experiences' Don't give up. If you feel something isn't right, you have to speak out about it and I think it's important. I think for a period of time, specially when she was going through being moved and after what happened with her being on TV and stuff like that, I had to make notes of things that, keep a diary of things that wasn't going right. I'd done stuff like that because sometimes when you're meant to recall lots of stuff, you can't, you can't because your head is so full of so much is going on. I think it's about asking questions, still asking questions about things that you're not sure about, that's one, -that's the main thing that I want to say to people going through the same thing as us. Find somewhere, find, maybe -there needs to be some place that you can contact other carers that are going through things similar to yours and you could offer your phone number or whatever because you will always learn different things from other carers which will be really good. So I think that will be a good thing and just to keep on at, you know, asking the right questions, being very clear about what you want for your, you know, for the person that you're caring for. Just don't give up and don't feel as though just because somebody's sat behind a desk who says that they're a psychiatrist, doctor or psychologist, what they're saying is 100% gospel is how it's supposed to be because they're human being and they get things wrong like anybody else and at the end of the day you have to, it's nothing wrong in questioning things over and over again until you feel fairly sure about what's going on, there's nothing wrong in that, you know. I think it's about carers need to be heard and from being heard, something needs to be done because we're powerless without powerful people behind us.

There is also advice for carers on other trustworthy websites, and links to some of these websites are in the 'Resources' section.


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Last reviewed September 2018.

Last updated February 2013.

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