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Mental health: ethnic minority carers’ experiences

Getting the balance right

Being a carer is not always easy and people had different ways of coping with the stresses and strains involved (see section 'How caring affects carers'). Some people coped with caring better than others.

People said it was vital to get the balance right between your own needs and the needs of the person who is unwell. Carers said they needed breaks, rest and activities that 'make life enjoyable'. Many said that carers should not neglect their own physical and mental health.

 

She says you need to look after yourself first to look after others.

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She says you need to look after yourself first to look after others.

Age at interview: 65
Sex: Female
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Yeah, do you go to support group meetings and things like that?

I do go. I do go, because I do feel it's necessary, because I've understood that it is important I keep my mind and my wellbeing is also important. But I will not make it absolute, because absolute is her. But I do understand that if I want to be doing a good job, I must first see to myself. And I do see to myself. Once she's asleep at night, I do go for a movie now and then, a Hindi movie, because I'm so homesick, and I do enjoy seeing scenes of India and all that, hearing my own Hindi language spoken. So all that, you do find, -you must look after yourself. I think that's another message to the carers, look after yourselves, because your wellbeing is vital to your job. Without your wellbeing, where is you and where is the person you are caring for, so that is there.

Keeping active
It is important to have a social life and to keep active, for instance by meeting friends, going to the cinema or library, going for walks, travelling, doing yoga or meditation or taking exercise. Getting 'out and about' or finding time for hobbies can be difficult for some carers. 

 

It can be difficult to find the time, but doing crosswords and learning Spanish helps Marcie deal...

It can be difficult to find the time, but doing crosswords and learning Spanish helps Marcie deal...

Age at interview: 72
Sex: Female
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But it's, it adds on, so if, although I would like to, because I don't have company I would like to read some of the books that I've had there and I haven't read. But, reading time is a very difficult to find because of all these interruptions and then the carers come to change him, I mean, there is always something that is sort of breaking to the, into what you want to do. And therefore, to find that time is quite, -but I give myself, I teach myself, I'm teaching myself Spanish. And I'm doing Sudoku sometimes which has become a little bit of an escape when I feel really stressed. I do a Sudoku or crosswords, or something like that. So I try to, what can I do? I try to do what I can to keep me, sort of, going.

One woman said she needed to carefully plan the time she has to herself.

 

Marcie makes plans to meet friends while others look after her husband.

Marcie makes plans to meet friends while others look after her husband.

Age at interview: 72
Sex: Female
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I'm going to a friend tomorrow, she has a garden. But because she has got a bit of emphysema certain jobs she can't do. And I said I would like to help her because it would be good physically for me. 

So I said I would go and she is cooking lunch for me. So we'll do that and then I will scuttle off and come back. And that's fine. I try to arrange, you know, something that will fill a big chunk of the time and I will be with somebody. I won't be in the shops, I will be talking to somebody or doing something. I went to see an exhibition of Hogart work at the Tate two weeks ago. I met my old friend and we went together and we did it very quickly. There were ten rooms, we did it really quickly. But I saw, -I saw, surprisingly I saw quite a lot and I absorbed quite a bit, and I enjoyed it. It was very rushed but there you are, that's it. You have to try otherwise you never do anything.

Many used the services of local community or voluntary organisations (see 'Support from carers services') where they met others, often from the same ethnic background as themselves. Some focused on their own personal development and learning. Activities were diverse and included learning to swim or a new language, improving English skills, taking part in religious activities, doing computer courses, or learning about mental wellbeing at meetings or conferences.

Many carers found it helpful and worthwhile to take part in voluntary work. Some helped at their community centre or carers group, and others were active in organisations that try to improve mental health services.

 

Doing voluntary work rather than other activities means Aiko can use her job skills.

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Doing voluntary work rather than other activities means Aiko can use her job skills.

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And since I started taking antidepressant, I'm a bit more me, I feel me, -being reasonably confident, although I am not very confident to deal with mental health issues. I found one place I can actually enjoy doing things is the working with the support worker, with this service, the amount of help I got, I received, I'm trying to feed it back to this service, and to share with other carers. And especially I do some voluntary work for BME community, that makes me feel worth for myself, and I can see me, what I'm doing, that environment, so semi formal. But it links to my previous career working with, as a team, and lots of different people come to sit at the table, and making a discussion, and having brainstorms, and trying to improve the situation by team. I found I really do enjoy it. Although it's not something you can say hobby, or fun thing to do, but I would rather do it instead of going to gym, or swimming pool, or having social time, because again another problem is about friendship, it's a bit difficult if you are in the situation.

Getting a break
People said being active can give you more energy and a much needed break from caring. At home, people found that reading, listening to music, doing crosswords or Sudoku were good ways of getting a short break. 

While it was difficult for some to 'switch off', some took more formal opportunities for getting respite, such as when their loved one was looked after by someone else, or in a hospital or care home (see 'Support from carers' services'). Others didn't have this option.

 

Others may not understand that she can't take breaks if it puts her husband at risk.

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Others may not understand that she can't take breaks if it puts her husband at risk.

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People often said to me “You should have your own time, don't neglect yourself, why don't you have a bit, time away from him”. But that is only possible to do if he is stable, but because I'm only one carer in the household, if he is not well I can't leave him alone. This point is not very well taken into account, still some people say, just leave him, and if anything happens after you leave home, that's it you have to, from that point you have to take the situation. But I can't really do that, because simply, -OK I went out for a day out with other carers, I had a good enjoyment, but then coming back home, -if he ended up killing himself, that's not something you can say. You had time off, and coming to see something, -the worse situation, I don't think that's the case at all. That's why I'm saying about the family support is also very important. Those circumstances should be taken into account by professionals, if the carer is living with mentally ill people, and if the household is a very small number of people, then that should be taken into account. And you can't just keep suggesting to carers, taking time off. Offering is one thing, but also understanding the circumstances is important I think.

Talking and letting off steam
Talking to others helped many carers, but not everyone had someone they could talk to. Some found the sharing of experiences with other carers in a carers' support group really useful. Others preferred talking to support workers or their own friends and family. Others felt they could use a 'talking therapy'. 

Having someone who really listened without interruption - and who understood - was seen as great support. This was true even if the listener couldn't 'tell me what to do'. People said talking 'helps you see things clearly' and that it 'makes it feel worthwhile.'

 

It can be difficult to find someone to talk to but her colleague provided a safe place to talk...

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It can be difficult to find someone to talk to but her colleague provided a safe place to talk...

Age at interview: 56
Sex: Female
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And a colleague at the mental health services used to be tremendously helpful because again, although working within the services, it's surprising how infrequent the opportunity there is to open your heart to whatever is going on. And, you know, I just try to work in normal hours and then, -although I, as I said, I'm very fortunate. I have flexibility in my job so I can work my own hours in the way, you know, as long as they're reasonable. This colleague of mine used to.

She used to ask me, because we were quite close, she used to ask me all the time how my brother was. And I could cry to her, I could talk to her about incidences and it used to be very helpful. And so for a period of three or four years it was, that was extra support, you know, from this colleague. She left unfortunately, but just as well because sometimes I just want to be normal really. I just want to, not be wanting to talk about him all the time anyway, but I do. I think parents always talk about their children, and I always talk about my brother.

Talking to someone you trust can be a way of 'letting off steam' when things are frustrating or frightening. Many said they also 'have a good cry' or that they 'scream' to get things out of their system. Two women even said -with a smile- that they had taken up swearing in old age because it helped release the frustration. Laughter as well as tears can help let off steam and some carers said that keeping a sense of humour -even when things are difficult- can help lighten the load.

Using your inner strength
Even though most said they needed the support of others, many carers found they had an inner strength helping them 'just to get on with it'. Even if it was hard going, some people 'learned to live with it' or even 'put up with' difficult behaviour because they were committed to looking after their loved one.

 

Ramanbhai relies on his inner strength and doesn't talk to others.

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Ramanbhai relies on his inner strength and doesn't talk to others.

Age at interview: 62
Sex: Male
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So if there are problems, when they occur, how do you get solutions to them?

In terms of solutions I have to help her understand.

For yourself? How do you do it for yourself?

For myself, it does feel, if I say anything with my heart that's it. After that what ever happens. Its in my luck (naseeb).

Who do you talk to with your heart? Yourself or someone else?

Myself, I do not talk to anyone else. Myself. I talk to myself and listen to myself. If I say it to someone else. You know what it's like in our community that word gets out wrong?

So you would not be able to talk about it?

No, not able to even if I wanted to because in every family, people think differently. Families don't have the same thinking. Your thinking will be different to mine. Her sister, father or mother or anyone else within it, their thinking will be different. It's not the same, you can talk to one and then another one. What is the benefit of it, nothing is there? Benefit of talking? Because I can handle it so why not? 'In myself I have the strength to keep going.

Where has that strength come from?

It has to be taken. The strength comes from my mind- I am speaking according to my mind- I am saying- my thinking is- that in our life if we cannot do something good for someone- why do something bad? To make my life good why should I spoil someone else's life by bringing unhappiness into it? As a human being we have no right to do that. If you have got married, then it's a part of your family. Then you have to have the strength of character -any circumstances you have to bear (address the challenges) it. If you can do this- it is better. That's it.

For others, trying to be 'rational', 'objective', taking a step back to think or diffuse difficult situations had helped manage anger and frustration and keeping 'your mind under control'. Others said that seeing the situation from the view point of the person they cared for helped them to be more patient. Learning how to get information and support had helped others slowly but surely to cope better (see 'Advice to other carers').

Knowing your limits
Some had learnt to accept that their loved one would perhaps never totally recover, or that they themselves were unable to help as much as they wanted. So people said it is important to accept what you can and can't do.

Some thought they perhaps have taken on too much responsibility for caring, and that it would be best both for themselves and for the person they cared for if they let go of some responsibility (see also 'Giving emotional and practical support').

 

Emily wants her husband to be less dependent and for herself to get more education. She feels God...

Emily wants her husband to be less dependent and for herself to get more education. She feels God...

Age at interview: 36
Sex: Female
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And because as a carer I prompt him to, -because he gets addicted to me, I'm the carer, so I am starting to prompt him so that he can be on his own, he don't have to depend on me even though I am a carer for him. So, because I went and I did a course in English and I went there for, it says three hours, and by time the three hours up, my husband is there! So I couldn't focus on getting my English -but I pass the English when the Lord help me because even though you're walking with the Lord he helps you, even you're not baptised and committed to him, he helps you and when I finished that course and passed, I was so grateful because at this time I'm even looking into doing some home study, yes. So the Lord will take me through anything and I'm not looking at the future being, -I didn't reach that spot because you can't change your past, you just have to keep your eye on God. And thank God that at least I've got bread because many people out there is in some situation that they felt as if they don't have, -they are finished, there's no hope, but for me I just got a bright future because God is in my life. Sometimes, sometime -it's not about money, it's not about this big education, it's just about love and once you have got that love God provides, -caring for others, looking after people, your loved ones. If people would make that commitment about their family, -no matter how rough the situation might look, and no matter which culture you're from or where you're from, just that genuine love from God can take you through.

 

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

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

Age at interview: 28
Sex: Female
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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.

To let go of responsibilities means carers sometimes need to set boundaries. Learning to say 'no' when the person who is unwell (or a service) wants help can be very difficult at first, especially when it is the carer (and not the services) who knows the situation best.

 

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

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

Age at interview: 28
Sex: Female
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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.

One woman had thought about no longer being the next of kin to her relative, because she felt at 'breaking point' and had to choose between letting go of some responsibilities or 'going under' herself. Other carers talked about how they stopped caring for periods of time, so as to return with renewed energy or a more balanced approach. Some had moved away to work or to get married, within the UK or abroad, while others just 'stayed away' for a while.

Negative ways of trying to cope
Some really struggled to cope with caring and had no clear coping strategy. Others had negative coping strategies that they felt made the situation worse. One woman said that moving to the UK had meant she had given up her old hobbies, which could have given her breaks now. She also said she was used to 'putting myself to one side' and that this was part of Japanese culture but she thought in some situations 'it is not a good thing to do'.

Others talked about taking up smoking, overeating, or 'being a martyr.' One woman said she would 'withdraw from the world' when things were difficult, but this only depressed her more.

More information about coping can be found in 'Advice to other carers'.


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Last reviewed September 2018.

Last updated February 2013.

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