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...
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.
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).
'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.
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...
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...
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,...
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.
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...
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.
Last reviewed September 2018.
Last updated February 2013.