Mental health: ethnic minority carers’ experiences
Giving emotional and practical support
People with mental health problems can be very vulnerable and many need extra help and support both practically and emotionally.
Some carers commented that our society often "turns away from vulnerable people". Instead, carers agreed that we need to look for "the person underneath the illness", as people with mental health problems have the same talents, intelligence, dreams, expectations, strengths and weaknesses as the rest of us. Only then can we give people the support they need.
Ramila has learnt a lot from her brother and says we need to see the person behind the illness.
And a lot of effort to be made, I mean not anybody giving up on anyone really, because I've, you know, come across people with mental health problems and, underneath their psychosis or whatever it is, I'm talking about schizophrenia mainly, -but there's such a nice person there with love, understanding, wish, desires, wants. And sometimes when professionals only see those sort of people for consultation for five, ten minutes, they, I wonder whether they see this wonderful person and the personality, you know behind it. Or then I think, you know, they're giving up on this person. There should be a hope that this person will get better, and they will be able to visit some, -whatever life they want to, rather than thinking, oh no they'll never get better, which is what I've heard a few times.
The way my life has taken course, I feel extremely fortunate. I feel I've learned so much from my brother really, and I wouldn't have it any differently, except of course, I wouldn't want him, if the choice was given, I wouldn't want him ill really. But I've learnt so much and I have so much respect for him as a person. As someone, -I don't know if I had the same illness, that I could have coped with it in the same way, be such a nice person in spite of it really.
Carers agreed that people with mental health problems need emotional support and encouragement. Like other people, the people they cared for benefited from feeling that they are wanted and 'part of the family'.
Jane says that people with a mental illness feel the same need to be loved as everyone else ...
Instead of offering friendliness and support, Tina says, people sometimes act as if mental health...
Some said it is best to try to understand where the person you care for 'is coming from.' Being optimistic, tolerant, patient, loving and encouraging was also thought helpful. Some said 'just being with them' or having 'someone to talk to' was what people needed. Several carers accompanied their relative to places to support them if they were anxious about social situations.
Angela says people in hospitals don't get the care, support and empathy which they need and which...
Getting annoyed or angry didn't work and Ramanbhai now speaks to his wife in a gentle, comforting...
If they didn't live in the same house as the person they cared for (and also when people were in hospital or residential care), carers kept in regular touch to make sure 'everything is OK'. Some spoke on the phone every day or every week, and many visited regularly.
People said the person they cared for had to know they could count on them. Some always left their phone number with home carers or others who looked after their relative, and others would ring to let people know if they were running late.
Carers said you need to treat people with mental health problems with respect to avoid taking their dignity away or being patronising. Some said having respect means you have to let them know, in a loving way, when they were being unreasonable or irrational.
Anne describes an exercise which helps her deal with her husband's irrational thinking.
'And on there is a lot of stuff written out, like distorted thinking, it could be 15 different ways of distorted thinking. So seeing those kind of things to me was, -really helps a lot. Oh right, so that's called 'catastrophising', so that's why, drop the glass on the floor, the world's going to end. So just reading the sheets that were given to Adam I found helpful. And then, one sheet she did, and it was called Evidence For and Evidence Against, so if he has an irrational thought, he's supposed to write down, what's the evidence for this thinking and this thought, and what's the evidence against? So I thought, 'Oh right that looks good' so. Then sometimes he's panicking about something so I say, 'Right let's try and look at the evidence for and the evidence against'. So that's how I've learnt by, when I've seen these sheets and things, has been helpful.
Tina says when people with mental health problems have wrong perceptions of what is happening,...
Many carers did practical tasks for the person they cared for and people usually did more at the times when their relative was very unwell. Practical tasks included household chores or helping their relative to eat or drink. Some helped out with baths or massages. Others took on new responsibilities for household finances, maintaining the house or making sure children were fine. Many usually came along to meetings with services, some helping with translations, and quite a few looked after medication (see 'Taking control - difficult situations and medication').
When her son is unwell she visits several times a day to make sure he is OK.
Some carers who lived together with the person they cared for said that everyday life was 'regulated by routines' and that 'continuous little jobs' meant they were caring all the time.
If the person who is unwell is not co-operating, it can sometimes be difficult to give practical support. Some carers had asked professionals to find solutions, while others thought finding ways of doing things based on their own experience (and those of other carers) usually worked best.
Her support worker suggested that Anne simply run a nice hot bath for her husband instead of ...
Yeah, so it's frustrating because he won't, he can't think, 'Right I'm absolutely shattered, I need to go to bed early so I'll have a bath, a hot bath. That'll relax my muscles, then I'll take a certain tablet and I'll sleep through the night and I'll feel so much better tomorrow'. So he can't think like that. But sometimes, especially because you're supposed to be wife and husband I think, 'Why don't you have a bath?' And he'll go, 'I don't want a bath', and you think, 'God if he just has a bath he'll, it'll help'. And then it just, -arguments and, or he goes into another panic attack. Whereas once she said to me, 'Well, why don't you just run the bath, put lots of bubbles in it etc and then, to try and encourage him, so you run the bath' And I thought, 'Oh yeah', so just little things like that, are sort of practical ways of helping.
Although professional advice can be good, Anton sometimes finds his own ways of doing things.
Some carers looked after the money for the person they cared for. However, carers can feel uncomfortable about how it looked from the outside that they 'don't have time to keep a separate account' for the person they cared for.
It makes sense to do a joint weekly shop for herself and her brother, but Ramila feels...
And there's something around money. And I really don't want his money. But he gives me his money because he's very conscious that I do, -nowadays I do all his shopping. I don't feel bad about taking his money because I try to make sure that he is looked after in whatever he wants, you know, I try and get it for him. But I, -I suppose it's in my conscience really, and because of the new legislations, or new ways of working, I'm always aware that it would look very bad by agencies that I don't have time to do proper accounts. I don't have time to, -and also if I tried to put his payment, -because it will mean splitting, -I do all my shopping with his shopping. I take him out whenever he would agree to me. He won't come out of the car but at least I feel that he's, -so I think how will I weigh up all the time that I spend on him? Not that I want it weighed up. And I, -I just think, I do it out of love for him and I would have always done it whether I got a penny or not but, -and I don't claim a carers' allowance.
When the person being cared for was in hospital or residential care, many carers spent time visiting them, bringing appropriate food (such as vegetarian or Halal foods), doing their laundry or buying clothes. Some said they needed to be present to follow up on medical care and ward rounds (see 'Dealing with hospitals').
Carers also helped their relative with things that make life more interesting. Many spent a lot of time with the person they cared for, talking or just doing things like watching TV with them. Some supported the interests of their relative by providing books or music. One carer rang his son in hospital every Saturday to let him know about the latest football results. Some went out together for meals, to the cinema or theatre or community events such as weddings or festivals. Others arranged courses, activities, days out and holidays. Some went for walks together or found other types of exercise. Some provided for religious needs, taking people to meetings, praying and singing religious songs together and even arranging Holy Communion at home.
Sarah's son has little initiative so she organises trips to stimulate him (played by an actor).
Kiran help his wife to take part in activities (recording in Gujarati).
When talking about the help and support they gave to those they cared for, many of the carers were concerned about dependency, saying things like 'perhaps I am doing too much?' or 'he gets addicted to me'. Some had tried to do less so their relative could be more independent, make their own choices and look after themselves more.
Jane wants her daughter to become independent so she can cope when her parents are no longer there.
Yes, we used to, we used to go, but now what we do now, is now and then let her go on her own, because we want her to be independent you see, we want her to go and talk to the doctor herself, you see. So we do that sometime, let her go on her own. Let her go on her own, and let the doctor ask her questions and she tells the doctor how she feels and things like that, because they need to be independent, because they spend so much time depending on you, they need to be independent. Because, I mean, the thing that worries her dad and I is, I thought, -what happen when we are not here and that's another big worry, that's a very big worry. A very big worry, because as I say, she sees me as her mother, she sees me as her friend, she sees me as her counsellor, because I counsel her, her dad and I, we counsel her about a lot of things, you see. So when we're not here, what happens, what will happen and that is our big worry now. Because I know for a fact that people that suffer from mental illness they are vulnerable people, they can be taken advantage of and that scares me. That scares me. She's got two brothers, she's got two older brothers and they're quite good with her. Quote good with her but they have their lives, so and that really scares us now, that is our number one worry, you know, what will happen, will somebody look after her like what we do, will they? You know. That's our worry now.
Some said they had realised that helping loved ones too much meant their relative didn't learn from their experiences, including their mistakes. Some said it was good if the person they looked after was the one deciding when they needed help.
Leah has started to tell her son how to do things instead of doing them for him, but she still...
Sometimes, it is like, before I used to do everything he needed for him but now I am not. I tell him how to do and let him do it by himself. I phone him, take care of him less frequently, I phoned him, but, now he is also, I often call to remind him to take medicine. I call him at night to remind him to take medicine. I asked him, sometimes when it is 10 o'clock, he takes medicine at 9 o'clock and sometimes when it is 10ish o'clock I called him and asked if he had medicine, he said no and I asked him to take medicine quickly and he would take. That is, he is like, he, without experiencing he would not believe, let him bump against the wall, bump the nails, from time to time when he learns a lesson he will then have the experience. Everyone is like that, when the thing has happened and he does not have the experience, the feeling is different. That is why people say, “Not feeling the pain until getting needled”.
Others said letting go of some responsibilities, such as 'nagging about medication' was important to keep a good relationship with their loved one. Some said they also needed to 'let go' for their own well-being (see 'Getting the balance right').
Last reviewed September 2018.