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Liz - Interview 17

Age at interview: 46
Brief Outline: Liz's husband, Rick, sadly died of a brain haemorrhage in 2000, aged 38. They had four young children. Liz advised being open and honest with children, answering their questions as fully as possible and involving them in decisions about the funeral.
Background: Liz is a supermarket admin assistant and has four children. Ethnic background / nationality' White British.

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Rick

 

Liz’s husband, Rick, sadly died of a brain haemorrhage in 2000, aged 38. A few weeks before he died, he and Liz had a conversation about organ donation because of a programme they’d been watching on television. The conversation became particularly relevant a few weeks later when Rick was admitted to hospital, out of the blue, after collapsing while playing football.

Liz assumed that Rick had broken his leg but, at the hospital, was told that he’d had a seizure when he arrived and needed support with his breathing. He was later transferred to another hospital, with a neurological unit, where doctors hoped he could be helped.

Doctors told Liz that Rick had had a brain haemorrhage, and he was admitted to intensive care. This was shocking, traumatic news that Liz felt could have been given more sensitively and explained more carefully. She said, “Nobody said, ‘He’s going to die.’ Or ‘there’s a possibility he was going to die.’  Nobody had actually said that to me. So all you do, or all I did was, you hang onto the doctors and the nurses words, but only the positive ones. Because you don’t want to think of anything else.”

Sadly, when Rick’s condition deteriorated and Liz knew he was unlikely to survive, their four young children were encouraged to visit hospital to see their Dad. Remembering the conversation she’d had with Rick some weeks earlier, Liz asked the nurse about organ donation, knowing this and being cremated were Rick’s wishes.

Liz said she was unprepared for seeing Rick just before the donation took place and would have liked more information about this. She said, “I had this vision in my head that that you’d go in and they’d turn the machine off. And his chest would stop going up and down and obviously he’d die… With organ donation, that doesn’t happen because they have to keep your blood flow going and they have to keep your chest pumping up and down. And they have to keep you warm and your organs alive to harvest them. But I didn’t realise that… It’s haunted me for the last ten years. I couldn’t believe that I had to do that. You turn around and you walk away but, to me, he was still warm and his chest was still going up and down, so therefore he was still alive.”

Liz praised the support she got from the specialist nurse [donor co-ordinator] at the time and afterwards. The recipient of Rick’s liver wrote to them about six months after Rick’s death. He continues to write to Liz’s youngest daughter who has liver problems herself and may, one day, need a transplant. About two years after Rick’s death, Liz met this recipient with their specialist nurses present. 

Liz had a lot of support from her family, and gained support from bereavement counselling. An important concern was how her children would cope with the death of their father. She advised being open and honest with children, answering their questions as fully as possible and involving them in decisions about the funeral. She is proud of her children and how they have all coped.
 

 

Liz went to the local hospital with her brother-in-law. They both assumed that Rick would have a...

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Rick went off to play football on a Sunday morning, like he normally does. It was the week before we were due on holiday. The kids were excited because Auntie [name] and Uncle [name] were moving in over the road, so they were helping. I had put Sunday dinner on as normal. Rick went off to play football. So normal Sunday routine really.                               

And then I put dinner on, went over to [sister’s name] to help there because they were coming for dinner, and we were helping them move in. And I just nipped back because she needed some window cleaner. And I just nipped back and that was, as I went in the front door, the telephone was going. So I ran and picked the telephone up and it was Rick’s manager, football manager. And he just said, “Liz, Rick’s not very well. He’s collapsed on the football pitch. We’ve tried to pick him up. We don’t know what’s going on, but can you get yourself to [name of] hospital.”    

So I wasn’t really worried. I thought he’d broke his leg or something because he was on a football pitch. And that’s the only information I had.

So my brother in law came with me and [name] looked after the kids, that’s my sister. And off I went to [name of] hospital.

Got to [name of] Hospital, just went up to the counter and said, “My name’s Liz [surname]. I have been informed my husband has been brought here, can you tell me anything.” And the lady said, “What’s your husband’s name?” So I said, “It’s Rick [surname].” And she said, “If you’ll just bear with me one minute, I’ll get someone to come and see you.”                                    
                              
So at the time, ‘Casualty’ [TV hospital drama] was quite big, and I did say to my brother in law, “If they come back and say you’ve got to go to the relative’s room, I’m just going to do one.” And he just said, “You’re alright. He’s probably broke his leg or he’s done something like that.” And, you know, it was exactly what I was thinking.
 

 

Liz and Rick had a casual conversation about organ donation and cremation after watching a TV...

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First thing I remember was a couple of weeks before Rick actually died. We’d had a conversation. There was an interview done on local television with this couple’s daughter and she’d not been very well. And they were appealing for organ donation. And I’d said to Rick at the time, “Oh would you donate your organs?” And he said yeah he would because there’d be no point in keeping hold of them. But he wanted cremating, not burying. So he felt that your body’s burnt, so the best thing you can do is maybe donate them.

So it was just an observation on the television and that. I didn’t give it five, ten minutes thought. We’d just had this conversation, but when I look back after a couple of weeks later, that gave me the knowledge really to make the decisions that I made.
 

 

Liz wanted to carry out Rick’s wishes to donate but was worried his family might misunderstand....

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The only other thing that I was worried about was the rest of his [husband’s] family. I’m talking about this to the co-ordinator [specialist nurse] about giving his, letting them take his organs, and he’s not dead as yet, or official. And so you’re always thinking you’re one step ahead and then you’re also thinking well his Mum’s there, his brothers are there, his sister’s there. Everybody who loves him. When all of a sudden they’re going to be confronted with this information that, you know, that Liz has given permission for Rick’s organs to be donated.

So I got [the specialist nurse], I asked her to talk to them because I wanted it to come from a professional point of view instead of just, you have these visions of barging into his room and saying, “Well, you know, he’s got to have these brain stem tests, and if he’s dead then he’s donating his organs.” It would be too abrupt. It would be too much information because all you want to do is, for this machine to be turned off and somebody to start breathing again. That’s all you want.

So she helped me with that. We all sat in the room together with the doctors. They explained the brain tests and they also explained that they didn’t expect Rick to live. And then they explained about organ co-ordination, and that he’d expressed before he died that’s what one of his wishes would be and they’d discussed it with me.

And it gave the rest of the family an opportunity to ask questions, which was a big thing. It was a big thing for me because I didn’t want his family to think that I was making all these decisions because it’s like, that’s his mother. I’m his wife, okay I am his next of kin but that’s still his mother. And everybody knows how mothers feel about their children.
 

 

Liz wishes she’d been told beforehand that, with organ donation, a patient continues to breathe...

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They did the brain tests on the Wednesday. And then obviously they came back that he was brain dead. And they also said with the machine, I remember them saying to the kids on the Tuesday, that the only reason your Dad’s chest is going up and down at the same time as the machine is because the machine is pumping it in for him. And so if the machine weren’t pumping up and down, Dad’s chest wouldn’t be pumping up and down. So you kind of grasp some knowledge from that, from listening to the nurses with the kids.

So all of his family and his friends, they all went and they were given a chance to say ta ra to him and say what they wanted to say and do or whatever. And then it came to my turn. Well obviously I was the last one in, and it was like I had this vision in my head that that you’d go in and they’d turn the machine off and his chest would stop going up and down and obviously he’d die. So that’s it, you know he died, you can hold his hand, you can say goodbye. And he’d die.

But obviously with organ co-ordination, organ donation, that doesn’t happen because they have to keep your blood flow going and they have to keep your chest pumping up and down. And they have to keep you warm and your organs alive to harvest them. But I didn’t realise that. And it was a bit of a shock to go into the room and the nurses said, “Well we can’t, you don’t turn the machine off because if you turn the machine off, then Rick’s body and his organs will die. And then we wouldn’t be able to harvest them.”

And I think that if any co-ordinators [specialist nurses] or doctors are listening to this, that’s something that they ought to, I don’t know whether it’s changed in the last ten years already, but I think that that’s something that they need to, with family, close family, and when you’re discussing these things, you need to tell them. Because that haunted me. It’s haunted me for the last ten years. I couldn’t believe that I had to do that. You turn around and you walk away but to me he was still warm and his chest was still going up and down, so therefore he was still alive.

So you’re asking questions like, “Well is this decision too early, even though you’ve had the information from the doctors and they’ve done the tests, and you know they’ve gone through their procedure, which is a legal and proper procedure. You still, as that man’s wife, I still thought that I was sending my husband into an operating theatre and they were going to take his organs out and he was alive. And that’s a hard thing to live with.
 

 

Liz only knew that her husband had had an injury playing football. She compared the abrupt way...

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Went over to the [name of] hospital, bearing in mind that we were like, ‘oh well, he’ll be fine’ because they said that they’ll take him if they can do something for him. And we still didn’t, nobody had mentioned anything about head injuries, or still didn’t really, we walked in blind because we didn’t know what was going on.

Walked into [name of] hospital, and it was a Sunday. There wasn’t many people around. Walked into [name of] hospital and there was this doctor rushing around, like quite quickly, walking quite quickly in white. So we just said, “Oh, my name’s Liz, Liz [surname], and my husband has been brought here. Can you tell me anything or can you point me in the right direction?”

And he just said, “Well, I don’t know what you want us to do. He’s got a massive bleed on his brain and I don’t think there’s much we can do about it.”

So I looked at my sister and obviously I burst into tears. But there was nobody else around. And my sister looked at me and we were like, “Oh no.” So we just stood there for a minute and then this nurse appeared from, I can’t remember where, but she just appeared and she just got hold of us and said, “Look, just come in this room and I’ll try and explain it to you.”

So she just sat us down and said that they’d took him into the operating theatre. He’d had a scan on arrival and they’d found a massive bleed in his head. They didn’t quite know what was going on, but they’d took him into the operating theatre to see if they could sort it out.

So they took us to this other room and just made us tea and everything and the nurse did apologise and she said that some doctors are busy, abrupt or whatever, not really got much, you know, patience. And she was really, really kind and caring. She gave us as much information as she had.

The doctors were kind of quick and quite abrupt. I know that you don’t want people to give you false information but when Rick died, it was, you knew that they had a job to do and you were trying to reason with it, that that was their job, they were giving you that information. But to me they could have done it in maybe a bit of a gentler way for want of a better word.
 

 

Liz felt she was given very little information. She clung only to the positive news but, with...

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The nurses came in again when the doctors had finished. And they just said that we could sit with him [Rick] and they would be waiting for any signs. They’d be giving him medication. They’d be observing him and that he would have a nurse at his bed at all time.

So we went to see him when he was ready and he was just bandaged again with blood on it. Machines, he had stockings on, which he would have hated. But obviously because he was laid still and they would explain that, you know, to stop clots and…..

And I don’t really remember a lot after that. It was friends and relatives coming and going. They asked me how he was, but I didn’t have any information. I didn’t know. The nurses were like, “Well, we’ll give him this and if this machine goes up or,” but you didn’t really, because you had no knowledge of what was happening. And not really a great deal of information, it was like you were pretty lost.

And then of course your minds at, you’ve got four children at home. Your brother in law’s looking after them and your sister’s doing this and, you know, you’re constantly at the hospital.

But Rick, he never regained consciousness. He laid there from the Sunday to the Wednesday. On the Monday his older brother, [name], he came up and he made a comment to my sister in the waiting room, and said, “I’ve spoken to the doctors and the nurses. Does Liz know how grave this is?” And [my sister] said, “Well no, I don’t think she does. I think she’s just watching these machines and she’s just waiting for him to open his eyes. Because she hasn’t really got any more information. She doesn’t understand what’s going on.”

And nobody said, “He’s going to die.” Or, “there’s a possibility he was going to die.” Nobody had actually said that to me. So you just, all you do, or all I did was you hang on to the doctors and the nurses words, but only the positive ones. Because you don’t want to think of anything else.

So it was [my husband’s older brother] really who kind of figured it out that, you know, he wasn’t going to live. And I suppose in hindsight I think, because of our experiences, I think he was probably dead anyway. You know, when he had the massive fit [seizure]. I think he probably died there and then in his brain. And obviously they keep your body going and give you the medication because that’s what they do as medical professionals, when you look back at it. It’s like they were giving Rick every chance of life, which is what you’d expect them to do. And you hope, I suppose that there’s just something there that’ll kick in again.
 

 

Two years after her husband’s death, Liz met his liver recipient. She was worried she’d get very...

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We’ve met him [liver recipient] once. Yeah, we have. We met, I think it’s about two years after Rick died. And we’d written regular and talked and I’d wrote about Rick’s children and what [my younger daughter] had been going through as well.

And then I just got a letter asking if it would be a possibility of, he’d be quite willing to meet and say hello, and see how he’s doing and vice versa. And so we did that, again through our co-ordinators [specialist nurses]. He came along with his, and I went along with mine.

Co-ordinator?

Yeah, with our co-ordinators. And so it wasn’t just you in the room, it was the co-ordinators as well. And you could ask questions. I asked silly questions like, you know, did he like a certain type of food, or did he notice things after he got Rick’s liver because it was kind of, like you’re wondering if there’s any traits, because you’ve got somebody’s organ. You know, have they passed on, oh you hear lots of stories about people taking on the other people’s mannerisms and maybe likes and dislikes.

Yeah. So then had you seen any pictures of him and,

Yeah, he’d sent photographs in the letters of him and his family. His Mum and sister and his nephews and I’d done the same. And I’d sent him a photograph of Rick. I’ve still got them.

How did you feel about the first meeting?

I was kind of, it was a bit you know, because you’re like, and then it’s like you have, you want to do it. But then you’re worried of how emotional you’ll get. And you had visions of him looking like him. I know it sounds a bit crazy, but it’s because they’ve got a piece of someone and you’re looking for kind of traits in them. And oh you know if they say, “Oh well I like so and so,” “Oh well Rick used to like that.” And things like that, so it gives you a great comfort.
 

 

Liz’s children dealt with their dad’s death in different ways. One daughter became quite clingy....

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We’ve got four children and obviously it was a big shock when Rick died that I weren’t expecting, they certainly weren’t expecting it because Dad’s always here forever, same as Mum.

At the beginning it was, I shared everything with them. From the start it’s be honest with them. If they ask a question, if you don’t know the answer find the information out and give them the information. Because, as an adult, you know that information helps heal, so therefore you know, I mean kids have got so many questions.

I remember [my middle daughter] dealt with it by walking away. And she was for at least three years after, “Where are you going? Who are you going with? How long are you going to be?” If you were five minutes late, or you weren’t where you were supposed to be, she’d be on the phone.

I mean that was one of the things I did do, even though they were young, because they had that many questions and they kind of stuck to you like glue, because they obviously figured that Dad had gone, are you going to go next? I bought them mobile phones because it was a practical thing to do. I went down to the schools and obviously they were sympathetic.

I mean [name], my eldest daughter, she still won’t go to the cemetery, but I’ve never forced her to do that. But if that’s the way that she feels that she needs to deal with it, then that’s fine. Christmas Day I go up; if they want to come they come with me. We’ve done things like got a memorial bench, and they’ve just put “Daddy” on it. And so they’ll go and sit there if they want to. They take flowers up if they want to. They ask about him. His things are still around the house.

[My eldest daughter] asked me, he used to collect bottles, and I hated them because they’re on the top and all they do is collect dust. But [my eldest daughter] said to me, “Well can I have them? And when I get my own place I’m going to put them up.” So we’ve kept them. There’s no reason to throw them away.

His shirts are still hanging in the wardrobe. His things are still around, photographs, you know. They don’t mention them, they don’t, they’re just part and parcel of the house. And it’s like if they don’t mention things, I’ve found that they’re coping with it.
 

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