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.
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.
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...
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.
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.
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.
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...
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.
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...
Being a 'super hero' isn't good for Raye or those she cares for.
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...
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'.
Last reviewed September 2018.
Last updated February 2013.