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Mental health: ethnic minority carers’ experiences

Anton - Interview16

Age at interview: 63
Brief Outline: Anton cares for his 84 year old mother who suffers from dementia. His caring responsibilities together with his own health problems meant he had to take early retirement, but he is very involved in voluntary work.
Background: Anton's family came to the UK from Sri Lanka when he was a child. He is single and an auditor by profession. He became his mother's main carer at age 58.

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Anton (63) has been caring for his mother who has advanced Alzheimer's disease for the last five years. Before that, he lived in the Midlands and his life revolved around his busy job as an auditor.  Around the time when his mother's illness meant she was no longer able to cope on her own, Anton started suffering from depression, which made him reduce his work load. He moved to London, to his mother's home, and took on caring responsibilities for her. 

Professional  home carers come to provide personal care for his mother three times a day. Anton feels that he needs to monitor this care, as he has several times found that his mother is not fed or cleaned properly. He noticed a change in the quality of the service when it was privatised some years back, and he believes the problem stems from the poor pay and working conditions offered to home carers, which de-motivates some of them. He has several times written to the Director of Social Services and to the private contractors with complaints. Given his professional background he is able to assert his views and his mother's rights, but, he says, other carers may not feel able to do this.

Anton still suffers from periods of depression. He says that during these times he is not able to care for his mother as well as he wants to. Yet, he believes the alternative -to place his mother in a care home or hospital- would be worse for her. When she has been in hospital in the past, she hasn't been fed properly and on one occasion she fell and broke her thigh during transportation carried out by private contractors. 

Anton feels that the community spirit in his native Sri Lanka would provide a better situation for carers. In the UK people are much more oriented towards careers and individual lifestyles, and lack of neighbourliness means there is one less source of social support.

Since becoming a carer and now working part time, Anton has become involved in a voluntary capacity in a number of organisations at local and regional level. His professional background means he has valuable skills to offer, and in return he obtains information and contacts that enables him to care better for his mother. 

Both Anton and his mother are involved in the Methodist Church. He says that his experience as a carer has changed his theology. Before he would encourage people to pray for God's intervention during difficult times. Having experienced the situation as a carer, he now has more 'liberal' theological views and believes that prayers will be answered through people helping one another.

 

Anton thinks the current carer's allowance is inadequate considering what they do.

Anton thinks the current carer's allowance is inadequate considering what they do.

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Yeah, now what I'd like to say is that though, when you're, when you're caring for somebody it's not an easy job, it's a 24 hour job, and you never know when the job is going to finish. So the, -what do you call- the authorities or health, social services, they must take this very, very seriously, and they should care for the carers, right. They should organise things, they should care for the carers. Now say, -now I, -because of my mum's condition I've got to spend a bit more time with her, so even this part time job, which I'm doing, I won't be able to do that many assignments, so I applied for the carers allowance. You know a princely sum of 50 quid a week, that's all. And then some caveat built in, that I can't work more than so many number of hours, so what do they think, that sort of a business? So they've got to care for the carers, plus they've got to give some financial incentives, money, because they're saving a lot of money, and that sort of business, who better to care for their, kin than their family, this is it! So yeah they're, unfortunately the carers are neglected, a group of people, and because they take advantage, they know they'll do it anyway, even with the 50 quid or without the 50 quid, yeah.

So more support, financial and otherwise?

For the carers, financial otherwise -carers, and then there are some ways, and then if they want to do some study, like correspondence course or something, something, then they should fund them, because they're at home that sort of a business. Possibly give them free bus rides, if they're under 60, so many things, yeah. Because you know because they're caring they're not doing a full time proper job, so their earning capacity is low, yeah. And then organised holidays, and then, like -nice if carers, a few carers can get together as well, swap, -help one another.
 
 

The home carers are helpful, but he monitors their work and has complained when things are not...

The home carers are helpful, but he monitors their work and has complained when things are not...

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Then the carers from social services come three times a day, in the mornings they come along, wash her and everything, clean her up, they give her the breakfast, but I prepare all the food. Then lunchtime they come along, and they give her the lunch, which -I prepare the lunch and leave it. Night time same thing happens, they wash her, give her the dinner, and put her in bed, and that sort of business. Now when the caring was done by social services it was very good, the carers are paid properly and everything. Then they privatised it. When they privatised it, you don't know who's coming, you get umpteen carers coming and going, you know, and then such low calibre, that although they're given shall we say like one at a lunchtime, they come in, they want to get out in five minutes, right. And I have a lot of problems with them, early days they used to come along, and I leave the food, they try to feed her, then she doesn't eat straightaway, then they quietly throw the food, right. I didn't know about this. So one day when I looked in the bin I saw the food, I said what's this, then I read out the Riot Act, and tell them 'look if you do this, well obviously I'll take it seriously'. Then two carers that come and deal with my mum, because she's frail, this, that and the other, then they tried to, then between the carers they'd have a little agreement, one will come, other won't come. One will come for the first half hour, other will come the next half hour, and also they are, -caring company also tries a bit of tricks. So when I found out, I read out the Riot Act, and I wrote to their head office, saying that look if anything happens to my mum, if she gets hurt or anything I will hold you responsible, so I wrote a letter to their company secretary, and Director of Social Services, and to the caring company. So I had a lot of battles to fight out with them, and then eventually now I got two, -some carers who are OK, so I'm a little bit happy, but still I keep an eye on them, and that sort of a business. So, I feel sorry for people who have nobody to keep care, you know, keep an eye on them, there are people living on their own, and the carers do a bad job, you now, they couldn't be bothered, they may even throw the, what do you call, medicines away and everything, and -nobody to speak up for them. And OK they may have their relatives or somebody, and then they said, oh they said when somebody starts complaining, say, 'ah it's the old people, the usual thing, they're complaining, they don't want to know', and that sort of a business.

 

Anton says that home carers' jobs can be unpleasant and they have poor pay and working conditions.

Anton says that home carers' jobs can be unpleasant and they have poor pay and working conditions.

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Yeah, well I thought when you're caring for somebody, for a start the government is saving thousands of pounds, like if she went into a home it would cost them quite a lot. So I thought that you will get a lot of support, but I, well, but at the same time, although they give support, it is the people whom they employ. Now the carers get paid '6 an hour, they don't get paid for travelling time, and lunch business and everything, so after they've finished they've got to go somewhere. And they are not guaranteed the hours, right, so if you pay them peanuts, you're not going to get a good calibre, right. And then people don't respect, -well not even a lot of the people who are, -ill people, -they don't respect the carers, they say, 'oh they have come to do, -look after me', and also it's not a motivating job, it's a dirty sort of a job, clean and this, that and the other. So they are treated like shit, and at the same time, -and some -obviously when they deal with ill people, old people, they are not best of the people to deal with, right. So they get a lot of hassle, and the carers as far as they consider, oh I'm just doing it for the money, and they want in and out, you know, and they also try their tricks, yeah.

 

Over the years he has developed a good relationship with his GP.

Over the years he has developed a good relationship with his GP.

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And I've got a good GP, she's very, very good, lovely lady, doctor, Mrs. [name], and she has told me if I've got any problem to come and tell her, and she will try to deal with it. Sometimes a carer company will try their luck by trying to cut down on certain services, then, as soon as I notice it, I said, hold on what are you trying to do? Then there's a bit of argument, then I tell them look I don't want to argue, are you going to do it or not? If you're not going to do it, I know how I can make you to do it, and then all that I do is ring the GP, and the GP rings up, that's it problem solved, you know, this is it.

How did you get that good relationship with your GP?

Well firstly when we registered with the GP she was a lovely lady, and also we are from Sri Lanka, we respect the doctors and everybody, we don't throw our weight about, you know, we respect them, and if you respect them and treat somebody kindly they will reciprocate. I remember once I went to the surgery, and there was a new receptionist, so I nicely asked her, she said, 'why are you nice to us, normally people are nasty, we are a bit puzzled', you know, that sort of a business? So we built up over the years a very good relationship, you know, so no problem, and also I read in the newspapers GP's and some of the doctors, their job is quite stressful, people come along and tell them the tale of woe and the problems. And I read some statistics that half of them become alcoholics, drug addicts, suffer from mental illness, so that sort of a business. So you also have to understand, they have problem as well, you know, but she's good. Tomorrow she leaves, and if we get another GP who's not very good, then I go and change it, I'm not going to put up with it, yeah.

 

If you are not satisfied with the home carer service, complaining can make a difference.

If you are not satisfied with the home carer service, complaining can make a difference.

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Well firstly, though there's another secret I found out though. Now, these carers' You can complain. Now, if I complained to the company, which provides a care, they've got to make an entry in their books. So when the auditors, or people who monitor come along, and they look at the complaints book, and if they get too many complaints, then they'll fine them, and that sort of business. So once I said to one of the carers, 'oh, I think, the second one didn't come', I said 'phone up the office and tell them', she said 'no, no, no, if we phone up they don't like it', because, about the complaints procedure, so I've got to ring up. So what should be there though, there must be an independent complaint set up, so if I'm not, if you're not happy ring the independent people, and then they will record it, and they will have to deal, they have to phone up the carers company and tell them. By that way something, something will be done, even the company, which does the caring will get kicked out and all these things. So when I had the problem, when this carer, -the caring company was trying to mess around with it, I wrote a letter to the Director of Social Services, 'Three questions I need answering. When you privatised it, did you set your standard and give the caring company a procedure that these are the things they'll comply with, firstly? Second question, who checks the compliance, right. And thirdly, do you ask, -get information from the clients, or the receiving, -who receive care from them', so I asked those three questions? So if you start writing letters like that to the top, then they know you mean business, yeah. So my being an auditor I know all this, I know the system, I deal with it, but ordinary people they just get fobbed off, they say you can't fight with the big organisation you see, yeah.

 

When his mother's dementia got worse at the same time he had depression, Anton stopped working...

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When his mother's dementia got worse at the same time he had depression, Anton stopped working...

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The company I worked for, I had to travel all over the country, so that it was a central point, I was happily living. Although I got struck down with manic depression, this was in 1988, but at that time I was that much younger, and I was able to fight it through, and ride it through. I still kept my job, and managed to carry on. My mother got struck down with dementia. When she first got dementia, I used to come along twice a week, once on a weekend Saturday or Sunday, once on a week day, come along, do the shopping, make sure everything is OK, she's all right, and all these things. But as time went on her illness progressed, then it got to a stage, it was a bit dangerous to leave her on her own, because she will turn on the gas tap, and then will forget to off it, and various other things. And then she couldn't cook any more, and then we arranged one of our neighbours to come along, and bring some food, and then she found it difficult to cope, she might leave the door open, and that sort of a business, so-. Then I decided I better come and stay here, and look after her, so I had to give up my full time job, and I started doing part time and contract work, because obviously I needed the time for her. Plus with my depression I also couldn't handle nine to five, or travelling 1,000 miles a week and dashing around, so that is how it came about, about five years ago, right, looking after my mum, and that's it, and also now we are just carrying on, yeah.

 

His white British friends advised Anton to put his mother in a care home.

His white British friends advised Anton to put his mother in a care home.

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Well I've got a lot of White British friends in the church and everything. And some of them come and give me a bit of advice, and some of them said, “oh, this is no life for you Anton, why don't you put her in a home, because she'll be happy with people of her own age”, and all these things, “you've got your life to lead”, and all these things. So, knowing they're social starter family life doesn't surprise me, so this is it. And then once again I find in the white British families, that even the children, -well the parents stick them in, like put them in a nursery this, that and the other, then. So when their children grow up home, and their parent's need, they also put them in institutions, yeah it's very sad. 

There was a time I used to go and preach in the old people's home, and then they're there, and after I do the service, a lot of the old ladies will hang on to my hand and squeeze and won't let me go. And then the only time you see a lot of traffic in the old people's home are Mother's Day, Father's Day, Christmas, that's the time you find plenty of cars parked. Other times -dead; they're dead, and then you some time, when I speak to them, well they are, some of them don't even live locally, and that's why they're dead, yeah. And just imagine though, say as a parent, I tend to think, as a parent they bring up the children and spend a lot of time, sacrificing everything, and they expect, -well when the time comes for them they might get, you say in accounting terms, some sort of return, but no. This seems the same old story, as soon as you, -well like -as soon, in their sort of society when their parents can't look after themselves, there goes to the institution, and that's it. So then you can't blame them, because they done the same thing, yeah.

 

Anton feels supported in the Sri Lankan church.

Anton feels supported in the Sri Lankan church.

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The church we go to, we've got some, one of the ministers, now he's retired and gone, they come to see her every week, and they come and give communion, and some of the church members come and keep company, and this sort of business, you know. But once again there are churches and churches, some churches people turn up at 11 o'clock, 5 minutes to 11 before the service starts, 5 minutes past 12 they vanish. And they can go to church for years, they wouldn't know who's who, they're like strangers, you know, so like that. Yeah that's it. But there are some, -like I go to a Sri Lankan church, well if I don't go there one week, the minister or somebody, 'Hey I haven't seen you, what happened', which is nice to feel wanted. Then if I say, 'Oh, no I've got this ruddy depression', 'Is there something we can do for you, come along and spend a day with me', yeah.

 

Maintaining friendships as a carer requires flexibility.

Maintaining friendships as a carer requires flexibility.

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Yeah, oh definitely, because when you're a carer you get tied down, right, with the person you care for, then it's not easy for you to go and visit your friends. Now however much you may speak to people on the telephone, if you want to develop a friendship, a personal presence is necessary, right. So, yeah, this happens, because they can't go and visit their friends and everybody, and afterwards you lose the friendships, and that sort of a business. And they might ring you and say, 'When am I seeing you', they say, 'Oh I don't care for this, -it's not convenient', and then they lose friendship, it is a fact of life. But in my case I make an effort, and I try to, right, I say, -what do you call- change the equation, I tell my friends, 'Look I'm a carer', so I sometimes tell, -all my friends know that I can't make advance arrangements. I have a friend nearby, I phoned him up last week, and then I told him, 'Oh I might come and see you, what sort of a notice do you need', he said, 'Oh tell me the previous evening'. So Friday I went, 'Definitely I'll come' then he said, 'Oh, I'll pick you up from the station', so like that. But if someone said to me, 'Oh, let us know in a, one fortnight in advance' and this, that and the other, then say suddenly the doctor will phone up, and say 'I want to come and see her'. Or that particular day, sometimes you get this sort of a carer, -a morning, a new one will come up, and then she won't know where things are, then I know' Trouble, and that sort of a business. So it's a bit, unless you're a bit flexible, and if you tell people once again this is your situation, they say, 'I'll come and see you'. Then my friend said, 'Why don't you stay tonight,' I said, 'No because of my mum I can't stay'. And I stayed as long as I can, and they said to me, 'Yeah whenever you feel like give us a ring'.

 

Being a carer limits what Anton can do, but he believes in putting his mother first.

Being a carer limits what Anton can do, but he believes in putting his mother first.

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Oh, there are many things I can't do, like for example there are so many seminars, which I like to attend, like what I said to you, Ruskin College Oxford, so many, so many things. I can't go away on a teaching, like, a thing, like going along and spending a few days somewhere residential -making stained glass windows and everything. So those things I can't do, like -because I've got to get back home every, night. And then sometimes one of my friends will say, 'Oh let's do this, let's go up to Inverness', or something like that, 'Let's do some' - what do you call - 'Go on a lifeboat and wander round'. So those I can't do, yeah. So that, I gave up certain things, so I'm afraid, one of these things, but I would tend to think if I was ill my mum would do the same thing, you know, so you always tend to think. But at the same time -well would I really be happy, say if she was suffering and neglected and lonely my, enjoying myself? You know. So now I seem to know the heart of a father and a mother, after doing a bit of caring, otherwise one can easily become selfish, and think about your happiness, you, you, you, you, or me, me, me, you know, one can get away with it, one could get into that sort of a thing. But my being brought up in a Christian faith, I tend to think the grammar, like CS Lewis, 'God first, other, others second, and me third', yeah. So the Christian upbringing, the compassion, caring, God's love, the Christian that was a great help, yeah.

 

The way Anton think about prayers has changed since he became a carer.

The way Anton think about prayers has changed since he became a carer.

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And also even my preaching has changed quite a lot, because now I, -after the going, after my going through stuff, after caring for my mum and everything, now I'm very realistic when it comes to preaching. Because when was it, a few, a year ago one of the churches I went, there was this lady, her husband got a heart attack, and he was in hospital, and she was feeling the strain because she, she was working. And it's not something where she could say like give me a week off, it's going on for some time, then she'd got two little kids to look after. I was planned to preach in the church, and then I was in to the lady, and she said these things. Now a few years ago I would say, “Oh let's have a time off prayer”, I would have said, “Oh let's pray about so and so, husband had a heart attack, and God will give us a wife's strength to look after the husband, she'll run round the house and everything”. What I did was -a novel idea, I said, “Today you're going to see some answers to prayer, how God's going to answer some prayers, you're going to see some miracles happening, are you going to answer a prayer?” Then I said to the, example about this lady, the actual problem, -now I said, “I want a few show of hands, now who is going to man the house while she goes and visits husband in hospital? Who is going to do some shopping for her?” So many hands went up, I said, “There's your prayer answered”, you know, this is it. It's easy to say, “Oh, God do this, do that”, and everything, but according to Christian theology, God is going to use us, through us he's going to help people. So I said to you earlier I used to be on the Evangelical wing, now I made a great leap to the, -what do you call- liberal wing. Now I tend to think the practical way of helping somebody, so my preaching and theology has taken a great leap forward, five or six forward.

 

Anton's siblings leave most of the care to him.

Anton's siblings leave most of the care to him.

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Now although I've got brothers and sisters -you see, as I'm single and not married they think I've got plenty of money, and all the time in the world, you know, they just come and make token visits. Like 'sick visiting' half an hour, one hour, one day a week, that sort of a business. So, obviously it's my mother, -and then if the roles were reversed she wouldn't abandon me, so that's the reason I've decided to look after her as long as I can. 

 

Although professional advice can be good, Anton sometimes finds his own ways of doing things.

Although professional advice can be good, Anton sometimes finds his own ways of doing things.

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Now sometime ago my mum used to have a go at me, then I used to get annoyed, I said, 'Look I'm looking after you, why are you having a go at me?' You know. So then when I spoke to the psychiatrist they sort of said, 'Well that's the nature of the illness, so there's no point getting angry and having a go at her'. Then, -like trying to give her the food, when I try to give her the food, some days she will open her mouth and eat it, other days she just wouldn't, she'll keep the mouth closed. Now early days I used to shout at her, I said, 'Open the mouth', and I said to her, 'Look I can't spend the whole day here, why can't you open the mouth?' Then once again when I spoke to the eminent psychiatrist, and people like that said, 'No it's no point you shouting, because it doesn't go through her head', and this sort of a business. So I get a bit of advice from them, but sometimes I found though, -the professionals when they give advice- it's, it's not good as you, -well obviously they give authoritative advice, but then it doesn't always solve the problem. Now my being an auditor, I used to solve company problems, so then sometimes -then think I ask their advice -psychiatrist's advice-, then I find that it doesn't seem to work, then I said, 'Well I'm going to sort it out my way', and I just solve the problem, right. Now, so when they, -when she doesn't eat, so what I did was, I kept it aside, tried ten minutes later, sometimes she ate. Then another day when I tried ten minutes later she wouldn't, then after about half an hour later then she ate, so like that, so now that's a sort of tactic which I tend to use, then.

 

Over the years he has developed a good relationship with his GP.

Over the years he has developed a good relationship with his GP.

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And I've got a good GP, she's very, very good, lovely lady, doctor, Mrs. [name], and she has told me if I've got any problem to come and tell her, and she will try to deal with it. Sometimes a carers company will try their luck by trying to cut down on certain services, then, then, as soon as I notice it, I said, hold on what are you trying to do? Then there's a bit of argument, then I tell them look I don't want to argue, are you going to do it or not? If you're not going to do it, I know how I can make you to do it, and then all that I do is ring the GP, and the GP rings up, that's it problem solved, you know, this is it.

How did you get to get that good relationship with your GP?

Well firstly when we registered with the GP she was a lovely lady, and also we are from Sri Lanka, we respect the doctors and everybody, we don't throw our weight about, you know, we respect them, and if you respect them and treat somebody kindly they will reciprocate. I remember once I went to the surgery, and there was a new receptionist, so I nicely asked her, she said, 'why are you nice to us, normally people are nasty, we are a bit puzzled', you know, that sort of a business? So we built up over the years a very good relationship, you know, so no problem, and also I read in the newspapers GP's and some of the doctors, their job is quite stressful, people come along and tell them the tale of woe and the problems. And I read some statistics that half of them become alcoholics, drug addicts, suffer from mental illness, so that sort of a business. So you also have to understand, they have problem as well, you know, but she's good. Tomorrow she leaves, and if we get another GP who's not very good, then I go and change it, I'm not going to put up with it, yeah.

 

In some African societies, families can personally care for loved ones in hospital.

In some African societies, families can personally care for loved ones in hospital.

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Now for example I was telling, they laugh at it, I said 'the solution for the health service is the African solution' then they said 'how come?' Now if you go to a place like Nigeria or Kenya, if somebody goes into hospital the family turns up there, pitch a tent on the ground, or stick in the corridor, and then they will wash, clean, do all the things for the patient, feed them and everything. The doctors and nurses will do the clinical bit, you know, people, -all the families come, that sort of a business. Now in England you see, they expect the nurses and doctors to do everything, now of course they can do everything, but then you need money, resources, now no one in England wants to pay any tax. Take the political parties, tax is a taboo subject, so if you don't pay tax then you won't have the money to engage people, so either you pay tax, or the family have to do it, so this is a problem, you know. I tried to explain to them things like that, because there's nothing new under the sun, every problem has been here before, and then instead of trying to reinvent the wheel, you ask other people, well how do you do it, then they will come and tell you. 

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