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Anne: Interview 04

Age at interview: 54
Brief Outline: Anne's brother is fifty-one. He was diagnosed with Asperger syndrome thirteen years ago. She has been his carer since his diagnosis.
Background: Anne lives at home with her husband. She has three children, one of whom has been diagnosed with a learning disability. Ethnic background: White British.

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Anne became aware that her younger brother was “different” when she was about six or seven. She noticed that he did not laugh or smile frequently and did not share many of her interests. She describes him as a “reasonable playmate” and recalled how they would have played board games and gone off on adventures in the countryside as children. She felt that when they played together he never really got into make-believe roles and she often had to compensate and play both parts. 
 
According to Anne, her father could not “work out” her brother and, consequently, spent more time with her than he did with her brother. He took her to watch cricket and to do things that a father might normally do with his son. As a result, she felt that she “was almost like a stand-in son”. Anne said this later changed when she moved away from home to get married, as her mother began to encourage the relationship between her father and brother.
 
Anne became her brother’s carer after their parents died in 1996. She organised the purchase of a flat for him in his home town. A year later, he was diagnosed with Asperger syndrome by his care manager. She described getting the diagnosis as like a “light bulb” coming on. However, she says that it is sometimes difficult to ascertain what behaviours are attributable to his condition or personality. 
 
Anne’s brother is getting increasingly more anxious as he gets older and that he says he would like to be more “sociable”. However, she explained that he refuses to get involved in pre-organised social activities if he has already got “stuck into something” else. Anne’s brother never criticises her and sends her flowers on Mother’s Day.
 
Anne described her experience of being a carer as frustrating. She feels that she has to provide the experts with information when it should be the other way round. She believes her experience could be improved if she only had to deal with one person who could coordinate her brother’s needs, rather than having to speak to many people from different agencies.
 
 

Anne is currently her brother’s guardian. She worried about who would care for him when she was...

Anne is currently her brother’s guardian. She worried about who would care for him when she was...

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But I can see if I get, as I get more elderly, I’m probably in slight denial now, but as I get towards, God willing, mid sixties that’ll be, I’ve spoken to other carers of that age and then that is their nightmare of who will care as much as we do when we’ve gone? And my brother I... if there’s some talk about everybody, all people having like a passport* so it’s acknowledged, it’s all over country, they can, it travels with them. So maybe I will move him nearer to me with this piece of [talking about passport] you know. And we can get something a bit more supportive in place.
*A passport is an individualised document for people with learning disabilities. It lists important information about the person’s health, likes and dislikes and medications.
 
 

Anne thinks that there should be more support for siblings who are carers.

Anne thinks that there should be more support for siblings who are carers.

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And what support would you like…. In an ideal world what would you like to have for you in terms of support?
 
For me as a carer?
 
Yes.
 
Like so many carers say, “If you sorted out care for the person that I’m caring for, my life would be so much easier”. I do get good support locally from, with my son, I mean I get, there’s a very good carer’s project here. I go swimming, I go, I can go walking with the group.
 
Just like sort of social support?
 
Social with other carers, yeah. And there’s people I can talk to if I want to. And I’ve got a fairly good relationship with people who care for my son. You know, so …we work very well together. But I would like the care managers to be more involved. Their role is always changing, it’s case managing I understand now. 
 

 

 

Anne is her brother’s guardian. She wants to be able to speak to one person who knows her brother...

Anne is her brother’s guardian. She wants to be able to speak to one person who knows her brother...

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I’d just say I just want to talk to one person. I want to have some, a lot, a good chunk of time and to be able to go into as much detail as I want. And I think currently I know him the best, so listen, you know, listen to me, and open up your wallets really [laughs].

 

Anne said she had to play both roles when playing adventures with her brother.

Anne said she had to play both roles when playing adventures with her brother.

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He didn’t have much, so much, sort of much temper. So he was quite affable, quite easy going. He was good for playing board games with, and we’d go off on little adventures around the countryside. He was quite biddable and, but you didn’t, you had to sort of play both roles almost. You had to... You didn’t get much back really, which is, you know. So it was quite an exercise in me almost having to make something work really and find a game that he could play. We had sort of toy cars and bricks and things. I wasn’t a girly girl anyway, so … When we were very little I think we just, we had sort of pedal cars and a swing and things like that.
 

Anne talks to her brother regularly on the telephone and he sometimes sends her flowers on Mother...

Anne talks to her brother regularly on the telephone and he sometimes sends her flowers on Mother...

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Perhaps every two or three days I’ll phone him up and we’ll go over the same things every time. He’s always anxious. I’ve learnt that is a part of the condition, so I don’t get a, “Hi! How are you?” He never, never asks about me at all, which hurts. Like, even though I know how it is, it still rankles.
 
It still hurts?
 
Yeah. Yeah. As he is my only sibling as well it does hurt. But, I guess I sort of picked up the mantle that my mother left. And she was just not a goddess, but I mean, she’d have just... if you want something to live up to, it’s a hell of a role, a hell of a thing to live up to. 
 
I’ve got incredible patience with him. I can sit and listen. I can talk, explain things. I think he’s very fond of me. He tells the workers or you know, ‘my sister said this’, or ‘I must check with her’. And he sends me ... on Mother’s Day I might get some flowers, I wish he wouldn’t because they’re so expensive, which is really nice and he’s really pleased, I can tell he’s really pleased when I’m there. You can just hear it, he just calms down. It’s sort of like well this is, I know this person, this is…. And of course I know all his interests. I can like anybody you know them so well you know what to say and keep things going. But then just as quickly he’ll go into his close down and he’ll be working on something and then if I sort of mention something I get quite an unpleasant look back because I’m breaking into that zone. 
 
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