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Death and loss

Many people interviewed had lost partners, sons or relatives. They described the cruelty of the illnesses, as well as their own sense of grief and loss.

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Ann Marie and John: Parents of Christopher who died as a young adult.

JOHN: A lot of parents lost their kids, and whether you might call us lucky or not lucky, we still lost our son, but at least we were there with him at the time. Which is more than has happened to a lot of people, who lost kids with HIV. He knew he was there with people who loved him. It was traumatic, I can still see it, at night sometimes waking up. They talk about these things but you remember the past, it gets weaker as, your memories get weaker as time goes on. It doesn't really happen. You still remember it.

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Carole: Sister of John who died as an adult.

I feel very proud that I had a brother that lived with that, [HIV] and that coped with that for so long on his own without telling anybody. But I wouldn't be anybody without my brother, he was my life.

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Cynthia: Partner of Brian who died as an adult.

Gradually you just heave yourself up from the gloom and doom, and try and struggle with day-to-day normal life. But for me it was a minute-by-minute thing to do. And I didn't care really whether I lived or died. But I knew that the sensible thing was to live at the end of the day and try for Brian's sake, for his memory. Because you know at the end of the day if anything happened to yourself, the whole thing would have been even more pointless.

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Diana: Mother of Stuart, who died as a young adult.

Mother's Day last year, Stuart was alive. Mother's Day this year, he's not. It's been a pretty horrible time. Coming to terms with the fact that you initially had two children and now you've only got one. Thankfully I've only been asked that question once since Stuart's died. I have to say, 'I had two, but I have one now'.

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Jan and Mel: Parents of Luke who died as a young adult.

JAN: I think that's how we have to remember him. And we also at the funeral, believe it or not, picked Always Look on the Bright Side of Life, because he adored that film, didn't he?

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Laura: Sister of Stuart who died as a young adult.

It's a horrific thing to watch, it's a very cruel disease as well. He lost his state of mind, his dignity and his physical health. There was nothing that it didn't get from him. And seeing the role reversal, of your older brother becoming like a child, was quite tough to watch, because your older brother's there to protect and support you. Everything about Stuart's disease and illness and death was wrong. That's the one word that I always keep using, everything was wrong. You just don't expect to have to see someone go through it in that way. It was such a horrid, cruel, undignified way to die.

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Mary S: Mother of Colin, who died as an adult.

He'd spent all his life in and out of hospital and he didn't want to die in hospital, he wanted to die with me and I had promised him. And I said, 'It's all right, I'm all right looking after him, I don't mind'. It was a privilege to look after him. He was mine. I gave birth to him but I was there when he died, and it was a privilege. I just miss looking after him, actually. I miss him very much.

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Molly: Mother of Oliver who died as a young adult.

I miss hearing his voice. I miss seeing his face. I can look at his face in the picture, but I miss talking to him, and I miss seeing him. What would he be doing now? What would he look like? How is he changing? I just miss him so much.

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Norma: Mother of Catherine, Caroline, John and James. John and James died as young adults.

We had home treatment. And that was the most appalling bit of this saga, is that, I was injecting him with infected blood. Guilt is the big thing. Also I gave him the disease, I was a carrier. So, yes, guilt is a very heavy load I think.