The Adur Carers Project
The Adur Carers Project

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The Adur Carers Project

3 Audio and activity

3.1 Caring relationships

Activity 1

Listen to the two audio clips. While you are listening, make notes on the different kinds of caring relationships being described. For each person, note down:

  • how they feel about being a carer;
  • what their main concerns are.
Download this audio clip.
Skip transcript: Clip 1: Part 1

Transcript: Clip 1: Part 1

Jonathan Smith
Well I think the stereotypical image of a carer is of a middle aged woman looking after an elderly mother.
Carole
I find the term carer now acceptable, but initially I didn't.
Pat
Well carers are all different, aren't they? Because they're all caring for different … some with physical disabilities and some with mental disabilities.
Julie
People perceive carers as just somebody being at home and looking after the person that they care for. They don't actually recognise that they have other roles in their life.
Helen Robinson
Many people providing support for relatives, neighbours or friends, do not recognise themselves as carers. Jonathan Smith runs a mobile information project in West Sussex. He raises awareness of carers' rights and services, by taking a specially adapted minibus out to local communities.
Jonathan Smith
Okay, right well we're of to Lancing today, and we'll be parking outside the Co-Op. We see up to about thirty people there, but … see how it goes.
We've got a set of stands for outside the bus, which have eight faces of young old people - male female - and the caption is, “Which one is the carer?” … which is supposed to be a challenge to people who are walking past to ask themselves, “Am I a carer?” And it can be anyone - from a young carer to an elderly carer, men, women, black, white - the whole spectrum.
Now these stands go out, just to let people know that we're here, and a list of the sort of information that we can provide to people.
Hello can we help at all?
Man
I just saw the sign saying ‘Carers,’ and I wondered whether it applied to me at all. I mean, I don't live with my father. He's much older than I am, and he's almost completely blind now, and I have to keep popping in to see him.
Jonathan Smith
Do you want to step on the bus for a minute, and we'll have a chat?
Man
Well, that would be nice thank you.
Jonathan Smith
Yeah okydoke.
A lot of people don't like walking into social services offices, or making a fuss at GP's surgeries, about the fact that they're a carer. A lot of people are very shy of statutory services, and we're very informal. We park in town High Streets and we're just there, and we're a couple of perfectly ordinary people who people can come up and chat to.
Helen Robinson
Carers are often referred on to the Carers' Liaison Project, managed by Jane Western. It's able to offer longer term advice and support.
Jane Western
Well certainly, for some carers, it can mean giving up paid employment. And I think that's one of the things that people often struggle with for a long time, because it's a really big decision to make. And, that obviously has effects in terms of relationships, status and certainly financially. And, I think, that has a huge impact on people's lifestyles, generally.
Helen Robinson
Julie is one of the people supported by the project. She describes herself as a ‘parent carer,’ looking after her eleven year old son, who has severe learning and physical disabilities.
Julie
He can't sit up. He can't stand. He can't walk. He's registered blind. He has got some speech, but you have to know him to be able to understand his speech. He's fed through a tube in his stomach. So, basically, everything that he needs doing - his toilet needs, his hygiene needs - everything that I do for him … and also stimulation, playing with him … and he has to have someone with him all of the time because of his epilepsy.
Helen Robinson
Julie had held a nursing post before she began caring for her son.
Julie
Even though I was qualified, and had actually worked on occasions with children with special needs, it doesn't prepare you at all for it. Because it is twenty four hours ongoing, you can't just put your coat on and go home at the end of the shift. Unless people are actually involved in the situation, they don't realise the extent of the care that is needed, and the physical and emotional drains on you.
Helen Robinson
Les and his wife care for an adult son with severe mental health problems, who still lives at home. Since retiring, Les has become much more involved in providing emotional and practical support for his son.
Les
We manage quite well, even though I say it myself. Considering there's all the stress we're under, we do cope quite well. We're fortunate, in one respect, that we've got a decent sized house. So, if we want to, we will go in another room, just the two of us, and sit together, and that's it. But, if we were in a small house, and he was in with us all the time … it would … if he gets one of his periods where he's talking to himself continuously, it would drive you barmy.
Helen Robinson
Les and his wife are aware that their son is often anxious about the future.
Les
His biggest fear is what's going to happen when we're no long around. That's his problem, and he gets depressed about that. My wife, who's sixty five, and I'm sixty eight … if we can survive say another ten years, then by that time he'll be forty three. He'll be middle aged himself, and perhaps he might find it easier to cope.
Jonathan Smith
I think the most difficult thing is actually the entry points for people, into the structure, which are quite problematic for people. How do they actually ask for help, and where do they ask for help?
Helen Robinson
The ambiguous nature of the caring role can make it harder to secure the right information. Carole, who cares for both her mother and aunt, explains.
Carole
You have to fight your way through the red tape to have any care from the health authority, or social services, even the GP's. They don't always see you as a carer. The receptionists don't see you as a carer. They see you as somebody who's a relative.
Helen Robinson
Julie has had similar experiences.
Julie
It's the disbelief. Recently, I had to meet up with various members of health and social work professionals, and discuss Luke's medical needs, as they stand. And everything that I said was questioned. And I came away thinking, “Well, have I got it right, or have I over reacted? They didn't believe what I was saying … because, if you look at Luke, he looks pretty good. And he just looks like a child in a wheelchair. You actually have to live with him to understand the extent of his problems. People are very disbelieving.
End transcript: Clip 1: Part 1
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Transcript: Clip 2: Part 2

Helen Robinson
It can be frustrating, if professionals do not share important information with close relatives.
Les
One thing we did find in the early days, when he was attending the hospital as an out patient - after he'd had his eight weeks in there, he attended for some months as an outpatient - the psychiatrist would never talk to us. They'll have the user, or patient, or whatever you like to call them, up there and they'll chat to them. And you're elsewhere in another room. And they can tell them, “They're reading, they're doing this, they're doing that,” - all sorts of things they're doing with their lives. They just tell them, naturally, what they want to hear. And they don't call the carers in. The carer is ignored, as though you're not involved. They don't see it as your problem. It's the patient's problem. There's so much more psychiatrists could learn from talking, in the early days, to the carers. They seem to regard it as it's not your business.
Helen Robinson
Carers often say that can find it difficult to get their own needs acknowledged. These can be substantial, as Jane and Jonathan discovered in a survey.
Jane
The carers themselves had very, very significant health needs, and that included things like Parkinson's disease, Multiple Sclerosis, strokes, diabetes depression. And that was the carers, not the person being cared for.
Jonathan Smith
There are health needs which are specifically to do with the caring responsibility. So, back problems are quite common amongst carers. Stress and tiredness and depression are quite common amongst carers.
Jane
When we're contacted by older couples, it's often hard to know actually who's the carer, and who's the cared for. Often people are mutually dependent. But, equally, we do have disabled carers who we are in contact with, who are still providing huge amounts of care.
Helen Robinson
Emotional support is an important factor in maintaining a sense of well being. And the Carers Liaison Project has established a telephone support line. Volunteers like Pat Ampsell, who've had first hand experience of caring, answer calls and give carers an opportunity to talk freely, and in confidence.
Pat Ampsell
Carers Line can I help you? Are you getting any help at all?
Having been a carer myself I knew how important getting the right information is at the right time … and how nice it is to have somebody that you can offload onto, who is completely anonymous. And you can talk to somebody that you're never going to meet, and you don't really know, better than you can talk to somebody that you do know. Our carers phone line is different from a lot of the phone lines. Once somebody has rung us, we ask them if they'd like a call back. And then, most of them say, “Yes,” so we ring them once a fortnight. Often it's just to talk about the garden, or the cats, or the dogs … just somebody different to talk to … to just have a normal conversation. If you're looking after somebody with Alzheimer's, it's nice to know somebody's going to ring you.
Jane
Some carers have been supported for over two years after they've stopped being a carer. Whilst someone is a carer, and particularly providing a great deal of care, their life is completely structured around the care for that person. There might be a number of people coming into the house, to support them in that but, when the person they're caring for dies or they go into residential care, those services all disappear.
Helen Robinson
For those who don't feel they can talk about their problems openly, the phone line can be a valuable resource.
Les
Very few people outside the family know its schizophrenia. They just think he's got an illness. But some of them, I suppose, think it could be a physical illness, because they see him walking around … he doesn't go to work. But there is that stigma attached to it. And, even he will say, “I haven't got this illness … you say I have, but I haven't”. You never mention the fact to people - that he's got schizophrenia. You just cover it up.
Helen Robinson
The caring role is a challenging one, but it also brings rewards.
Les
Well, I think the satisfaction comes from the fact that he says, “She thinks of us”. The fact that he's still got a good relationship with us, and we get on so well together, gives me the satisfaction of thinking we're doing the job properly.
Julie
If he learns to say a new word, you think, ”Oh wow, it’s happening”. He came home from school this week with a tattoo - just a temporary one - and he was so chuffed. And I thought, “Well, this is the same as a child who didn't have any problems of eleven,” and it was really nice to think that he was doing something that his peers were doing. And it's like, wow, there is something going on in there after all. And you do actually feel quite rewarded that you've put in so much, and you're now getting something back.
Helen Robinson
Carole's relationship with her aunt is particularly important to her. Carole
I'm quite happy to continue. I don't feel that I would be happy placing my aunt in permanent care, because she still has so much to give. And I would be lost without her.
Helen Robinson
But after her aunt came to live with her, Carole had to decide whether or not to care for her mother as well.
Carole
If my mother had become ill first, I would have thought twice about caring. No problem with caring for my aunt, because we've always had this closeness as ‘friend’. And I did live with her for a while. I think probably I would have avoided becoming a carer, for a much longer period. I would have probably arranged for my mother to go into sheltered accommodation, or hoped she would have gone into sheltered accommodation. It was suggested to me, by a professional, when my mother became ill, that as I'd been looking after my aunt for so long, it was time I booted her out and looked after my mother instead … which I took strong objection to. So, as I'm looking after one sister, I think I feel I have to look after the other. It's both or none really.
Helen Robinson
Most carers carry on providing support, in spite of the difficulties and frustrations that they experience.
Jonathan Smith
Nearly a hundred percent of carers are carers because they want to be, because they love the person who they're caring for. So, very few people are forced into it. I think some people find themselves in situations that they're finding very difficult. The fact that they have a relationship with that person, and a relationship they want to keep, makes them continue caring.
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Discussion

The people talking on the audio clips identified a range of different reactions to their experiences as carers. At the beginning of the first clip, you heard a woman say, ‘I find the term “carer” acceptable now, but initially I didn't’. However, other people had had experiences which had left them more ambivalent.

These matters are discussed in greater detail in Sections 3.2 and 3.3.

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