Mental health: ethnic minority carers’ experiences
Children, family and social life
Mental health problems can easily affect a person's children and other members of the family. Friendships and social life in general may also be affected. Family dynamics are particularly affected when carers live in the same household as the person who is unwell, whether as a nuclear family (parents and children) or an extended family (where several generations share the same home). Some carers can get on with their social life without too much trouble, but friendships may change and social life can be difficult to combine with the instability, 'crisis and drama' of caring.
Understandably, many carers are particularly concerned about how mental health problems in the family affect children. It can frighten young children to see adults change or behave in unusual ways. Many of the carers with children commented that children in families affected by mental health problems don't get enough support.
Anne's two daughters reacted differently when she explained her husband's mental health problems...
People tried to shield young children from the situation as far as possible, and some felt their children had been protected. Others felt it was impossible to completely protect children when living in a household with mental health problems. Some children were upset and confused by disruptions to family life, and some didn't always get the attention and support they needed when they needed it.
When the children were young, Kiran worried about them and about money (recording in Gujarati).
At that time what did you feel?
At that time, I did not think too deeply otherwise, thinking about the house, thinking (worried) about money. At the time I had bought a house, about two years. There was lot of confusion did not know what to do- no solutions, what can I say, felt stressed.
Is it different now?
The children are older now and the wife's illness has been long now so I know what to do and what not to do, so things are falling into place now slowly.
Being a carer with young children can be very tough. Some parents felt torn between their responsibilities for their children and for the person who was unwell. Some were caring for a son or daughter and said their other children worried they would have to spend their adult life caring for their brother or sister.
Her youngest children worry about their older brother and think they may have to look after him...
How do you feel about that, that they have these thoughts?
I don't know, it is difficult, but no, you don't know. You assume that maybe he will be able to pick himself up at some point, but, it may be difficult for him, it may be difficult for everybody else but, -it's not pleasant to think that he is the eldest isn't he and he's supposed to be looking after them, so, if it's going to be the other way around then, -this is the suspiciousness around, because every time you want to know what's going on, what's happening and it may not be, -maybe it's uncomfortable for him thinking that, people are worried about him, but then he can't help it, so I just hope that maybe he'll be able to help himself to the point that he can move on somehow, so, I don't know, it's difficult.
As they get older, some children take part in the care of a parent or sibling, and some become the main carer. Some talked about how caring responsibilities affected their children's education.
Kiran's daughter came home regularly while at university to help care for his wife (recording in...
For the family?
For the family, for the children. My daughter was older, but if the children are in secondary and primary school, it is very stressful for them. I was at work, my children were at school and had to come home and have to do things.
What other ways did they have difficulties, your family?
In terms of difficulties; eating and drinking, because when they come from school they needed to eat. When my Mrs health was bad, there would be no food made. Her mind was such that she could not do any work only sleep. So when the children came home, their clothes were not organised to go to school. Because of depression from the beginning we had to do things from an early stage. So there were a lot of problems when they were small. As the children got older, slowly we got to know and things fell into place. But in the beginning there were a lot of problems.
Pooja's son decided to get a job instead of studying so he could help his parents.
He told us that about eight to nine years ago. He said that the way my husband was losing memory he might get up one day asking who all the family members were, he said this straight on our face. This had a very bad impact on my son. He was with us at the time of appointment. After finishing college he did not proceed for higher education. He said that he would look after his dad. He felt extremely worried by the fact that his dad could lose his memory completely.
What was his age at that time?
I believe it would be around 15 to 16 years; it was after three to four years of the heart attack.
What he was doing at that meeting, was he there to translate the discussion for his dad?
The doctor called us to share with us the results of various test done earlier. Our son had a day off from the college. We never realised that he would be impacted by that meeting. We just asked him to come along so he accompanied. I felt sorry later on for giving him that shock. But after the meeting, he told his sister and myself that he was not proceeding for higher education rather he would start making a job to help the family. I initially forced him to apply for admission at the university. But he told his sister to tell me about his decision about quitting studies in favour of a job. After that I did not force him. He had learnt computer sciences at the college so he joined as computer engineer somewhere.
Young people can really struggle with caring. One woman described how her teenage daughter felt helpless because she could not help her step-father get better.
Some children don't want to get too closely involved, and carers of adult children described how their other children sometimes pulled away from caring responsibilities once they got their own family. Many continued to support their parents, however.
The effect of mental health caring on children can reach into their adult life. For example, two South Asian carers said that their children and grandchildren had been disappointed when they had been less involved than expected in arranging their marriages.
Other family members
In addition to caring for the unwell person and for children, many carers have other caring responsibilities too, for example for parents, in-laws or others. It can be hard to juggle different relationships and responsibilities. Some also felt they needed to shield parents or other relatives from the mental health problem, and waited years before letting them know, if at all.
Aiko has decided not to tell her parents in Japan just yet about her husband's illness.
I have the feeling, and I am confident, just -I don't want to do it just yet, because I know if I do, then my parents will worry every day to death. And they won't understand how the life, -I was going through in the past, crisis every day happening, Jim just smash things, and start screaming, or go missing, and calling police every second. Those are things, I don't think my parents should know about it, I really don't, especially my mum, she just will get panicked, and if they become unwell because I told them what we got, and then that will reflect me as well, so I tried to avoid those things. Minimise any concerns, but I don't know I'm doing right or not just I feel that is comfortable for myself.
In some cases carers lost touch with relatives and friends, either because they didn't have time to see them, or because family or friends stayed away (see 'Support from family, friends and community'). One man's family had distanced themselves so that they wouldn't have to take on caring responsibilities for his wife. Travelling abroad was impossible for practical or economic reasons for some carers, and keeping in touch with family and friends abroad was challenging. Some still felt supported from afar by phone calls and letters when they were unable to visit.
Several carers had at some point worried that poor family relationships could partly be why there were mental health problems in the family. Some people described their family as 'dysfunctional' and in several cases there were conflicts about how best to care for the person with mental health problems.
Living in extended families when someone is unwell can greatly help carers because more people are around to help. For one carer, however (who lived with her in-laws) having her mother come to stay when she was unwell caused friction in the home, and she had to ask her mother to go home. Another woman, (who grew up in East Africa) had found that living in a polygamous (one man being married to more than one woman) extended family had caused lots of friction between her and her half-siblings.
Living in a polygamous family created tension rather than support.
So it was -so my mother spent money, my mother spent all our resources trying to make sure that boy becomes a better person of society. My father was not do, -he was, he was not too bothered because he had other children to fall back at, he has 14 children, then my mother has just three, you know, so it was a very painful experience. They left us and just my mother, you know, to take care of my brother.
Friendships and social life
Being a carer also affects relationships outside the family. Caring commitments can make it difficult to have friends. People said it was hard to make firm plans, be spontaneous, find the time for friendships, or to involve the person they care for when their behaviour was socially awkward.
Maintaining friendships as a carer requires flexibility.
A few of the people we talked to said their social life had not been affected by caring, but many felt it was more difficult to socialise or that their social circle was now much smaller. A few felt very isolated with little contact with 'the outside world'. Some people discovered that their real friends were those who stayed in touch when they became carers.
Kiran's social life and his relationship to his wife has changed after she got depression ...
I do not have a life, no social life of my own. I bring her to the centre at the moment. I cannot leave her at a daycentre on her own because they will not accept her. I can only leave her at home if there is someone with her. I do not have a social life, it's a 24 hour job. I have come now but my son is at home and will go to work at 1.30 pm then its alright, but if he had gone to work then I would have had to bring her with me.
No, I cannot see anything good for me at all but I cannot say it in front of her. I know it inside. My children know it that dad does not have a life. My children last week, took me to see Liverpool play a match. I had to keep my Mrs at my brother's for one night. They say to me daddy get out, have a holiday, go and do this and that they say, but I do not feel like doing anything.
If I go and if something happens to her, then I will have to do the running around. Its better then to keep things as they are instead of having to run around if I keep her at someone's else house. If something happens to her health it will be me doing the running around. So from inside I do not feel like going.
In that I had never really sat at home, as a man. And sitting at home, not able to do much in the house. Watching T.V and sitting all day at home talking-the quarrels started to increase between two people. She was in depression and I did not know the reason that she was the way she is because of depression. I used to feel she is not working in the home and she wants (needs) to go out. And having left work, it takes time to settle things financially and so we rowed much during this time.
Marcie lost most of her friends, and thinks women are better than men at staying in touch.
Some people are selective as to who they talk to about caring, and some chose not to talk to anyone at all as 'they won't understand'. Others find that friends lost interest when the same issues about the stresses and strains of caring arose year after year. Feeling hurt by losing friends due to being a carer made others careful when trying to make new friends.
Having been hurt, she wants to take time to form new friendships.
So I, rather do the same way to chose, to take time, and then chose who to be with, it's kind of probably my self protection not to get hurt, but it works with me OK. Instead of having many, many friends, and a superficial relationship around me, I will then have one good friend. And although I don't have real, real friends, or close friends here, the support worker an offer me friendship, if I needed to cry on her shoulder, and she always offer that for me. But I'm not that desperate, I think I, -like the friendship, I would rather take time, instead of rushing to make those things for myself. And I am OK to, -yeah OK, I'm not coping very well, but I would rather take time, even having isolation sometimes, my target is somewhere far down my future, in the future. To reach the point I would rather make, one step forward instead of unstable lifestyle, and bounced around between A to B, or losing a friend, or make the new friends. For a short while I'm happy, but then the next second I'm crying, I don't want to have that kind of lifestyle. But maybe I'm too strict to myself.
After losing many friends, Amar is now selective about who she talks to.
No, people don't really generally want to listen to deep problems. I might have one or two friends, who might give me an ear once a while, but they don't want to be listening to the same saga again and again, you know.
And I suppose for you it is the same issues, because it's, you're in it all the time?
I'm in it all the time, you lose friends, you do lose, I have lost many friends. You make, I'm able to make friends easily, but to keep them… can't, because people don't want to hear some of the things and I'm not that sort of person, I'm not, some people have a tendency just talk about their negative life, or whatever, I try to be very selective.
Carers also described relationships to their local and/or ethnic community. While many felt supported or that being a carer did not affect their relationships, others felt excluded and that people pulled away from them or treated them with suspicion. (See more detail in 'Negative attitudes to mental health problems')
Her sister's mental health problems meant Sophie's family stood out in the crowd when she grew up.
You know, even just every day things like going out and going shopping and stuff like that. Of course her disability wasn't noticeable, you know, physically noticeable or anything but as she got older people were aware that she was either, what's the word they use, like slow or whatever they may see and you notice that people stared and done things differently and behaved differently and, you know, that was difficult as a child growing up and of course as a child you shun that and feel embarrassed about that but as you get older you understand well, this is part of your life, this is your sister and you grow up and you understand a lot of things, you know, about how life is for her. So that was, -that's changed us because at least I can honestly say that as siblings, we've got an understanding of mental health more than the average person. Even now I can see people, and I relate to lots of stuff that's gone on because of my experience and I don't know, maybe that's why I'm in the job that I do because I think it's.
Last reviewed September 2018.