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Interview 19

Age at interview: 52
Brief Outline: Her brother had an accident while cleaning his motorbike. He had severe head injuries and spent almost four weeks in ICU, where she visited him daily.
Background: Housewife, married with two adult children. Ethnic background/nationality: White British.

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In 2006, when she was on holiday in Spain, her brother had an accident while he was cleaning his motorbike. He had severe head injuries and spent almost four weeks in ICU and about two weeks in a High Dependency Unit. He then transferred to a local hospital until a bed became available in a rehabilitation hospital, where he was a day-patient at the time of interview.

She visited her brother daily while he was in ICU where, for some time, doctors were unsure what kind of recovery he would make. She found waiting for this news the most difficult time but felt that doctors and nurses gave the family as much information as they could and always kept them informed.

She wished she had written more in her brother's ICU diary about his condition so that it would be easier for him to believe just how seriously ill he had been. She also felt that photographs or a short video recording of his time in ICU might help him to better understand how ill he had been and not to push himself too much while he is still recovering.

She comes from a large family and received a lot of support from other family members. She also supported them, particularly her mother, nephews and niece, and now keeps in touch with them more.
 
 

No one in the family went to work, school or university during the first week because they felt...

No one in the family went to work, school or university during the first week because they felt...

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I think the visiting was from eleven o'clock and I would get there for eleven and just sit with him for a couple of hours, turn around and come home again, see various relatives, catch up with his children, my sister-in-law. My sister-in-law was, whilst they're not together any more, she was an absolute tremendous support because of the children. It's their children and she would run them there. For the first week nobody went to work, it was school time, [my niece] didn't go to school, the children had come back from university, which was all at the worst possible time because that was their exam time, so they had to miss, well they didn't have to miss their exams but there's no way they could, at this state of mind revise or throw themselves into exam mode. [My nephew] is in his second year, [my other niece] in her first, the exams all went to pieces, and yeah it was a case of being in the hospital for as long as you could 'cause we just didn't know what was going to happen. 

That week one was horrendous really, we were all there throughout the day trying to stagger the visiting. Week two, obviously people had to go back to work. My brother had to go back to work and we couldn't do anything anyway, the nurses said, 'Look, it's best that you do get back to some normality. You have got to go back to work, sitting here won't help him. We are doing everything he needs, you can't do anything.' 

 

Her sister came over from the States to visit their brother but, at that time, he couldn't...

Her sister came over from the States to visit their brother but, at that time, he couldn't...

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They started to take him off all the drugs. They did say his collapsed lung and broken ribs would at least have recovered now so he wouldn't be in so much pain, you know, and at least he'd escape the pain barrier because he'd been unconscious the whole event. 

When he started to wake yeah he didn't know us at all, he didn't recognise any of us. My sister had flown over from America with her daughter, and he didn't recognise her either. That was, oh boy that was difficult. And in the early stages it's, should she have come to begin with? Do you tell them to come? No you best come now, but there's so little you can do that we said no wait until perhaps he's on the road to recovery, but of course she only came for the week and had to go back seeing him not recognise her at all so, that was pretty awful too.

Did he recognise any of his children?

No, not in Intensive Care, not at all. In Intensive Care as well it was apparent he, well we weren't sure if he could see, even the neurosurgeon said, 'We don't know whether he can see, we don't know whether he can hear'. Because he wasn't responding to us. It was apparent he had no movement at all, certainly days one to three he didn't move at all, then of course they get the physio team in, and he did start to move his left arm. The right side didn't move at all, his legs didn't move at all and it was a week afterwards we had a meeting with the neurosurgeon who told us that at this stage it was unsure of his recovery. He should have been trying to start to talk to us at this point but he wasn't. Having said that by then he'd got a tracheotomy in so he wouldn't have been able to talk anyway, but he said he should have been trying to lip something to us to respond and we weren't getting any of that either. So at that point it was, oh dear his recovery was, well it was a bit, it was the worst possible news what can I say? 

 

Doctors couldn't say for sure whether her brother would ever be himself again, and she was told...

Doctors couldn't say for sure whether her brother would ever be himself again, and she was told...

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We took great comfort in the fact that the Neurosurgeon that was dealing with him, we were told was one of the best in the country and he did come to the bed very regularly, which was really good in the early stages because at least we could ask him, 'What's his chances of recovery? What impact will this high pressure have on the brain?' The fact that it's all the left side is the think tank and in [my brother's] case it wasn't just one bump. He'd got three lots of bruising on the left side which we were told would affect his speech, would affect his language, possibly his movement because the left side, it really is the side that controls everything. If it was the right side you wouldn't have been so worried but the fact that it was the left side and it's three lots of bruising might affect his memory, oh dear it was really awful. 

But yeah as to the recovery, they don't know because you don't know and until he would start to talk to you or even would he see again, we didn't know anything at that point. So as a family that was really the worst thing to deal with. We had to wait. We sat every day and watched the monitors and the nurses would tell you exactly what they were doing, 'The heart rate's low today because we've done that on purpose to drop the blood pressure. We need to keep the blood pressure low to keep the swelling in the brain down.' The swelling in the brain got so intense at one point there was nowhere else for it to go and at that point they did talk about operating and opening the skull, oh God to allow the brain to swell. But we were told that if they did that the chances of recovery would be very poor because, that's not good the left side of the brain for that to happen. So we really didn't want to do that and agreed that the best course was to keep him under for another week, flushing him with this drug that we were told as well is a poison, is not good but at that point of the game it was probably the best course of action rather than operating and risking a low recovery rate. So we just had to sit it out and wait another week for him to go down and have a scan.

I spoke once to a lady in the hospital, I can't remember her name now, just to find out how people recover, what did she think his chances of recovery were, to try and get a second opinion I suppose. But with head injuries they don't know, they just don't know. It could go either way. She did say, 'I've seen people with less visual impact than your brother and they've never recovered. I've seen people worse that have made a full recovery. There is no rule of thumb, it just depends what damage was done? Was it permanent? We don't know and you won't know until eighteen months from the date of the accident, at eighteen months that'll be as good as it gets.'

 

At the hospital she focussed on her brother's illness and on supporting his children. But, at...

At the hospital she focussed on her brother's illness and on supporting his children. But, at...

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For me personally I'm a very strong character and you do run into, dealing with everything mode' supporting the family, ringing people, keeping them informed, running over there every day sitting with him, 'Hello [name], it's [name] here.' Chatting away, can he hear you? Can't he hear you? You don't know, but I would talk away anyway at him, although at one point one nurse did say, 'You know he is so heavily sedated he can't hear you, it's really fruitless.' But I felt I had to anyway. Then a couple of weeks on, it does hit you how ill he was. And I have to say I went through a period of time where I cried non-stop. I cried while I would have a bath. I cried while I made a cup of tea. The tears would just roll down your face. You cry in your sleep, you'd wake up middle of the night and you'd be crying. I must have been crying in my sleep. I can't imagine how the children coped, how his children coped, his daughters were, oh God they were wrecked. They were wrecked, it was awful, especially his youngest who he absolutely adores [laughs]. 
 
 

When her brother had been in ICU for two weeks, she let her two children visit him in case he...

When her brother had been in ICU for two weeks, she let her two children visit him in case he...

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I personally have two children as well, again twenty-one and eighteen and I wouldn't allow them to go and see [my brother] in the ICU for the first two weeks. I personally thought the vision is too much for what I deem as youngsters, even at eighteen and twenty-one, I think when you visually see a member of family like that and the alarms going off and the buzzers going off if the heart rate would drop low and buzzer sounds. And I thought that was not good for youngsters to see. But obviously as the time dragged on and I did have to let them go and see him in the end because it seemed, well it seemed at that point he wasn't going to recover [laughs]. So that's another thing really. I don't know whether that was right or wrong but anyway that was the course I chose. 

 

She didn't want to repeat herself over and over again or talk about her brother's illness with...

She didn't want to repeat herself over and over again or talk about her brother's illness with...

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Did you also have to update or inform friends or any other relatives or it was only the immediate close family? 

It was mainly the close immediate. I personally dealt with the immediate family. My brother, he would keep some of [my brother's] best friends, colleagues updated. My sister-in-law kept everybody informed via a same message on email, so his work colleagues, his work, different friends, you know, people, she would deal with that. I didn't personally tell any of my friends because, one, I didn't want to talk about it all the time, I didn't want to say again, 'Yes this is the situation, here's where we're at.' It's just all too much, too traumatic to talk about all the time to my friends, they can't actually do anything. It wasn't until weeks after that, that actually I told my friends that, 'My brother's, this is where I've been for the last few weeks, I haven't been in touch because'. And they said, 'Oh why on earth didn't you tell us?' 'But what's the point? You couldn't do anything? You couldn't do anything, and it's been so busy, it's been an extremely busy time, you know, running to the hospital every day, running back home, catching up with people at the weekend, catching up with the family, look why don't you come and have a bite to eat'... And it's been crazy. It was crazy.

 

She wishes she had taken photos so her brother could see how ill he'd been and why it was taking...

She wishes she had taken photos so her brother could see how ill he'd been and why it was taking...

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They had also at the hospital provided some books and you could write a note in the book that you were there and how you were feeling. On reflection now I wish I had entered into the book more about his condition because I would even, you would enter a light-hearted note, 'All the things you do to get a day off work [brother's name], this is outrageous', because you hope at one time he'll read them and they'll be enjoyable for him to read. But now that he is recovering obviously he doesn't remember any of it at all, he has no recollection at all of the whole, nearly four weeks in the Intensive Care. 

He doesn't remember at all the first two weeks in the High Dependency, and now that he's recovering and he is doing really well, he has a job to understand that, 'You didn't recognise us, you didn't even know us you, you don't know where you were', if only we had written in the book, 'Today it's touch and go today [brother's name], the pressure on your brain is extremely high, you know, we're waiting to see how that's coming down, to see if we can avoid surgery'. Then he got a chest infection, again which became life threatening, which was another hurdle and I don't think it's mentioned anywhere in the whole of his illness that, 'Not only are we struggling here with your head injuries, severe brain injury, but now you've got a chest infection and you're having a job to even breathe on your own'. 

He reminds us that he's a businessman and, there's nothing wrong with him'. But then he cannot complete some of the tasks that they are setting him and then he gets very aggressive and frustrated. Obviously, he is a successful businessman that now can't complete tasks that they set him and he doesn't understand why not, because he hasn't seen where he's been. If only we'd have got a photograph of him in Intensive Care, or a video, wow, it would've been so, I think to aid his recovery a video of the machines, the pressure on the brain jumping from, up to thirty-six where if it gets to forty, oh that, we can't have that, that's danger level. If he could only see the swelling of the brain, the pressure on the brain, his low heart rate, his low blood pressure, the ventilator, if he could see it all he would understand he has got a head injury.

He still claims, 'My brain is fine, I haven't got a brain injury'. And yet he still can't pull the right words out of the memory bank, still today, and I mean it's August now and this happened at Easter, so we're talking April. He still hasn't got his speech fully back. He's still pulling the wrong words, which we can make light of because now obviously it's not life-threatening any more [laughs]. It's the recovery now, we've passed that life-threatening stage so it's all really on, how is he going to cope in the future? 

 

Her brother made huge progress at the rehabilitation unit and is now independent enough to live...

Her brother made huge progress at the rehabilitation unit and is now independent enough to live...

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They started to get him used to going home at night because they would do all this treatment in the day in the rehabilitation. It was non-stop, a full, in the gym getting his body strength back, walking, arm movements because the right side was extremely weak, albeit that it's all come back now. It was slow but it's all back but they are working on the weaker side. And then in the afternoon he has speech therapy and occupational therapy, and memory control tasks, so the whole day is extremely busy. But at night then, of course it was, you've just got to go to bed, go to your room, try and relax, and he couldn't do that. He just, you know, would get agitated and angry and aggressive again. He wanted to go home, 'I don't need to be here, I want to go home. It's, not helping me recover. I'm going out of my mind lying on my bed'. 

So they, initially somebody had to be with him all the time, somebody had to stay in the house and sleep there and get him up in the morning and take him back to the hospital. Then the hospital, their staff actually met him, would meet him in the morning and walk behind him to walk to the rehabilitation hospital which luckily isn't far from his home. They would follow him and make sure that he was safe to walk back to the hospital and again at night they would follow him home and make sure that he was capable of walking home on his own. And that's where we are at the minute.

Now he is allowed to, they suggested that we start to let him sleep on his own and get up on his own and start to live independently which is what he does, and his daughter as always stays with him at the weekends. So that's where we are at the moment and he still has to go to the rehabilitation hospital every day for, he [laughs] writes but he just writes all the wrong words [laughs] and he'll talk about going down the garden to his Fred, his garden shed, to get his tools and things like that. So he's doing extremely well and the doctors have all said, 'Gosh he's a walking miracle'. Because certainly his scans and if you see his head, the scans isn't it? Oh the bruising is horrendous, the bruising is horrendous, that yeah we are shocked that he is doing so well. So that's where we are today [laughs].

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