Peter, Olga & Andrew

Brief Outline:

Theo’s life was going well, and he had just set up his own hair-dressing business when, in 2005, at the age of 34, he was severely injured in a car accident. He emerged from a coma after a few weeks and appeared minimally aware, he has gone on to make some significant recovery in spite of doctors’ grim predictions. Nine years after the accident he is now looked after at home, by his family and a team of professional carers.

Background:

Peter and Andrew are the older brothers of Theo. Olga is Theo's sister-in-law (Peter’s wife). Peter previously worked as a DJ, but now both he and Olga concentrate on looking after Peter’s younger brother, Theo. Andrew also visits regularly to give support.

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Theo was involved in a car accident and left in a coma. He emerged from his coma after a few week, and for a long time appeared to be in a vegetative or possibly minimally conscious state. However, from very early on his family noticed the Theo would look towards things that interested him and cry appropriately. They felt he wanted to live and were confident that he would recover.

His family are critical of problems with his early care but eventually Theo was in a very good care home and received skilled nursing and therapies. However they still felt he was unhappy being away from his family and believed he would benefit from being in a home environment, participating in familiar religious and cultural events and being able to experience simple pleasures such as being be able to smell traditional Greek food cooking in the kitchen.

Theo continues to need ventilator support and artificial nutrition and hydration and requires 24/7 care. However, he is now fully conscious and can now communicate sources of discomfort and has some ability to swallow. He demonstrates emotion and understanding. P describes how his brother is able to read short sentences and can point directions. He also seems to have some long term memories and can get pleasure from looking at photographs and watching television. Theo appears frustrated by his inability to walk and talk but his family reassure him that there is still hope of further recovery and they can calming him down. It is heart-breaking for the family to see Theo in his current state but they celebrate every little step forward and hope he will prove the doctors wrong in future.

These interviewees are unusual in caring for their severely brain injured relative at home – and they describe the challenges of attempting to do this. P and O describe how for Theo at home means that they have lost privacy, intimacy, and the ability ever to detach a little from caring for Theo. They feel isolated and describe lack of support for families in this position. In some ways caring for Theo has become like ‘a prison sentence’, but they do it because they are desperate to help him.

The family feel that doctors in intensive care were too ready to give up on Theo and were dismissive of his potential for recovery. O, says ‘If God wanted him to go, he would have died then [in intensive care]’. She is also critical of clinicians presuming to predict life expectance: ‘It’s only up to God. If God wants you to go when you’re a baby then you go when you’re a baby, …he gives people different years to live. So who are doctors’ to tell us’. Theo’s family hope that one day he might be able to talk. P’s advice to doctors is: ‘they should always give you a little hope and add that word God, that’ll make people happier. …, [doctors should say], ‘we don’t know, only God knows’.

Doctors were ready to switch off the machines but his family resisted, believing that if God had wanted Theo to die, he would have. He has now recovered full consciousness and is cared for at home.

Andrew: They gave him no hope, right. And at the hospital when they wanted to switch the machines off and we said no, they looked at us as though – I said, “What, you want to kill him?” In other words, like they were sort of acknowledging, wasn’t it, that they wanted—

Peter: They wanted – yeah.

Andrew: And we said, “No, we don’t want it.” And we—

Olga: Nobody knows how—

Peter: In fact we – to give him a chance to survive—

Andrew: He survived all them—

Peter: When he was in a coma, he was biting, he was biting the thing, you know, and the – actually the doctor said to me, “Do you want – the best thing is to put a trachy to give him – in case someone doesn’t see it and he breaks it and he chokes, he’ll die.” So that’s when I signed and I got them to put a trachy in, to give him that more of a chance to survive. I don’t know whether it was right or wrong, but at the end of the day we didn’t want him to go. If God wanted him to go, he would have died then, innit? It was meant to be. Everything happens for a reason, right, I always believe that in life.

Olga: No, we’re not going to, you know.

Peter: And one day he’ll – I’m hoping one day he’ll prove everybody wrong and he’ll talk. And there’s a few people that are going to get a few lectures [laughs].

Andrew: No, he’ll, he’ll never, ever fully recover. Put it that way.

Peter: No, but—

Andrew: But everything that he does—

Peter: The best thing, if he could talk, if we could get him to talk.

Andrew: If we could get him to – if he does talk, you know, that would be fantastic, you know.

Olga: A big bonus for us.

Andrew: Who knows? Who knows? Only him upstairs. [Laughs]

I suppose a lot of families I’ve interviewed have said he would have died if it hadn’t been for all the intensive care and everything, and then we could have remembered him, we could have grieved him—

Peter: Yeah.

We could have got on with our lives. Does that have any resonance for you or with your values and stuff is it – do you never think it would have been better if he had died? 

Peter: Sometimes when you’ve been through the hard times you do feel like it, you know.

Olga: But you don’t say it.

Peter: You don’t say it, you don’t want to say it.

Olga: Sometimes you feel like how dare me thinking that. You know. 

Peter: And I, I even heard—

Olga: And, you know, other people, members of the family have said it.

Peter: They’ve said it. We’ve had – I’ve got—

Olga: He’s struggling and all that.

Peter: Yeah.

Olga: Yeah, it’s hard to see him like that, but if God wanted him to go then he would have gone by now. And [Name] is very strong, he’s a fighter. So he will fight. And I keep on telling him, and that gives him strength, that’s what I believe anyway.

His family had a series of concerns about Theo's care, including being unhappy about the infections he developed.

Peter: They weren’t doing physio, they weren’t doing no physio, they weren’t giving any input at the home.

Andrew: And it was always sad.

Peter: Yeah.

Andrew: Very sad, you know.

Olga: You know, every time we used to go he used to be asleep, innit?

Andrew: Yeah.

Olga: It doesn’t matter what time, day or night.

Andrew: And I walked in another time they had him in the room, wasn’t it, with four or five other people. [My brother] was there like that, everything was on the floor, there were two people at the desk, right. And I walked in, I said, “What’s going on here?” [My brother] is like that, he was full of saliva. All the bits are on the floor what he’s pulled off. And they’re like reading newspapers and watching telly. I said, “What’s going on?” Oh, there was murders that day. 

Andrew: The care home was very, very good.

Peter: Very – until they started changing staff.

Andrew: To begin with, right. So one Sunday when I was there, I noticed the nurse was putting water from the sink into his oxygen thing. And I thought, ‘that can't be right’.

Peter: It’s a cold thing and you use water.

Andrew: And I thought that wasn’t right. And it stuck in my head, so when my – when he had to go into hospital, I asked the doctor, and I told him, and he said, “No, it should have been proper boiled water or...” 

Peter: Yeah, yeah.

Peter: The thing was, right—

Andrew: He was getting a lot of infections at that time.

Peter: No, that’s when they started the infection.

Andrew: Yeah.

Olga: Yeah.

Peter: But the thing was, right, up to then he got to size six trachy and he was off the oxygen—

Andrew: He was off the oxygen for a year, wasn’t he?

Peter: For the – during the day, yeah. Because I pushed them, because we took him to my mum’s memorial and I noticed he didn’t need the oxygen. And they did it and, and because they were using tap water he got infection and it set him back a bit.

Andrew: That set him back a lot.

Theo can show emotion and understanding, he sometimes tries to talk and, can communicate discomfort.

And the first question I want to ask is, how is your brother?

Peter: He’s doing really well, he came home on May the twenty-first, nearly two years ago, and he’s come on leaps and bounds. He’s got to the stage now he understands what’s going on. You write things and he reads it off the board. And he’s got his own mind. Like if somebody upsets him – what did [Name] do one day, told him off, and he…

Andrew: Two fingers.

Peter: He went up like that, went up like that.

Andrew: On his own accord, no one told him to do anything.

Peter: Yeah, he showed his emotion. And then afterwards she said to him, “No, [Theo], show me peace instead.” And then he turned his fingers around and went peace [laughs]. So he shows he’s got emotions and he understands it.

And can he talk at all?

Peter: No, he can't talk. That’s the – half the battle, isn't it, Olga?

Olga: That’s the frustration for him.

Peter: My brother, you see deep down he wants to talk.

Peter: You know, he, he gets so frustrated, sometimes he just – 

Andrew: He moves his mouth – when he wants to talk his mouth is going up and down and nothing is coming out and you can see the frustration in his—

Olga: Yeah. 

Andrew: his face, you know. 

Olga: Yeah, and you know the other day – what day was it when he was really agitated —

Peter: A couple of days ago, wasn’t he?

Olga: Yeah.

Peter: Yeah.

Olga: And, you know, how he was – I never seen him like that. It was so bad the other day. And we were asking him, “What’s wrong, [Theo] Are you in pain?” “No.” We write things on the board. “Are you in pain?” “No.” “Have you...” he was sort of pointing his mouth, going like this. And I said, “What, have you got toothache?” “No.” “What about your tongue? Is your tongue hurting you?” “No.” So everything he was saying no but then, you know, what we realised, because he was still going with his mouth like that, and one of the carers that were trying to see in case there’s anything wrong with his mouth, so they were trying to wipe his mouth. And he took the tissue and put it straight in his mouth. And we thought, [Name] what are you doing? We thought he was going to eat the tissue. But instead when he pushed the tissue into his mouth and took it out, inside it was bleeding. 

Peter: So he…

Olga: He was trying to tell us, and he got really, really angry, because he was like, it is this there, you know. It was unbelievable.

Peter: Hmm.

Olga: You know, but, you know, he said – afterwards he said he had a headache, so they gave him paracetamol to calm him down.

Peter: And because of the pain and whatnot I went and got some Bonjela which helped a little bit. But we gave him some diazepam as well, just to calm him down.

Andrew: So he wouldn’t take the Bonjela until I tried it. I had to put some on my, you know, [smacks lips] and I went like that, and then he accepted it off the carers.

Olga: Yeah. And you know sometimes when it’s dripping and, you know, we say to him, “[Theo], try and swallow it.” If you keep on telling him that—

Peter: He tries now.

Olga: He does that and he swallows.

Theo can enjoy playfully arm wrestling with his brothers. He is able to read short sentences, and be helped to choose his own clothing.

Andrew: And he arm wrestles with us. Right.

Olga: Hmm.

Olga: He beat you [laughs].

Andrew: And I said to him, “One day I’m not going to let you win, [Theo],” right, and he was pushing away and all of a sudden this whole shoulder on the side that doesn’t move, it went up in the air like that, his whole arm went up like that, using all his strength. But subconsciously, I don’t think he knew that he’d done that, because it went up so – and normally he can't move that. But the adrenalin—

Peter: Yeah.

Olga: Yeah.

Andrew: Of, you know, because adrenaline is good.

Peter: Yeah.

Olga: Yeah. You really know – even when he sleeps, sometimes he does – he stretches it out like that.

Peter: Or if he’s dreaming.

Olga: He doesn’t even know that he does it. 

Peter: Yeah.

Andrew: And he wakes like – when he’s half asleep and he’s going to wake up you see him stretch both arms like that and he don’t even know he’s doing it with this one.

Olga: Yeah.

Andrew: So like it’s there but it’s got to reconnect.

Peter: Hmm.

Peter: And they didn’t believe us that he could read.

Andrew: Yeah, that was another thing, his reading.

Peter: That’s – yeah, and—

Andrew: And they still didn’t believe it up to last year, did they?

Peter: Yeah.

Andrew: The HFC.

Peter: Nobody believed us, okay. The reason how we discover – we discovered it is when we started taking him home one Christmas, [Name] gave him – because I used to put things in front of him, and I could see his eyes scanning—

Andrew: Yeah, it was a Christmas card.

Peter: Yeah, it was a Christmas, a Christmas card. And that Christmas card, right, told everybody – showed everybody that he’s – he does know how to read. Because he gave him the card, he looked at it – as long as it’s not too many words, big sentences and that, he read it. And once he’d finished he went, [sighs] and then looked at him, like that. And then I knew he could read. And trying to convince even the psychologist, they didn’t believe, they didn’t believe our staff, what they were telling him, that [Theo] does this and [Theo] does – even when we go to physio he can point in the direction to go to where we’re going to go.

Andrew: And he picks his own shoes – like when they dress him in the morning, he picks his own shoes, like they put—

Olga: And clothes.

Peter: Clothes, all—

Andrew: Trainers in front of him, and he’ll look and he’ll, he’ll pick what he wants. T-shirts is the same.

Peter: And he matches the colours.

Andrew: And he tries to – yeah, he tries to match—

Olga: Yeah, most of the time he doesn’t.

Andrew: Last year I bought six shirts, t-shirts. The first four it was a thumbs up, but the ones that he didn’t like it was a thumbs down [laughs].

Peter: [Laughs] and he’s trying to convince him to take them, and he wouldn’t take them.

Andrew: Yeah, and I said, “Well, can I have them?” And he went [laughs] – so [laughs] – but he does—

Peter: But he does, he does get frustrated, because a few weeks ago when we were going to go physio, all of a sudden he just went all angry and he was pulling things off, we thought he was going to pull things off and everything. And what do you think – we worked it out eventually, it took a little while—

Andrew: Didn’t like the t-shirt [laughs].

Peter: The t-shirt he chose, he decided he didn’t like it.

Olga: Yeah.

Peter: And he couldn’t tell us but now after when we—

Olga: he was pulling the t-shirt up

Peter: yeah, yeah. When—

Olga: And we were pulling it down, because you know the—

Peter: The PEG.

Olga: The PEG. 

Peter: Yeah, we thought he was trying to—

Olga: We thought he was going to pull that off. So we were pulling the t-shirt down and he was pulling it up and, and then eventually we worked it out.

Peter: We worked it out, we showed him a couple of t-shirts, he chose the one he wanted, took that one off, put it on, he was calm.

Olga: Yeah. 

Peter: It’s amazing how far he’s got his own mind, you know.

Theo can become frustrated - and seems upset about not being able to walk or talk, but his family have ways of calming him down. For example, Theo enjoys looking at photographs.

Andrew: They do something and he gets angry, he does get over it.

Olga: He, he gets upset as well. Sometimes he might by accident with his hand, he might hit one of the carers—

Peter: Yeah, he doesn’t mean it. I mean, you know—

Olga: He doesn’t mean it, but, you know, he – afterwards he gets upset.

Peter: It’s frustration.

Olga: Then he says sorry to them. 

Andrew: And sometimes he gets angry with us as well.

Peter: Hmm.

Olga: Yeah.

Andrew: But, you know, like I kiss him on the head and I say, “[Theo], cool down,” and he does – eventually we get round to it.

Peter: The other thing he likes is I take videos of things and we got – my niece has just had a little boy. And if I show him clips of that, clips of himself, and he’ll actually sometimes – because it’s on the, on the card as well now, and I can just flick it up and down and I say to him, “Come on then, [Theo] you press.” And he picks some of the old stuff that we – in previous videos we’ve got, and he loves that. And then it calms him down, and he’s happy.

Olga: But you know one of the pictures Peter had on his mobile and he went to show him, as soon as he saw it, [slapping noise]—

Peter: No, no, no, my other – one of our nieces came a few weeks ago and she did a selfie with him. And I went on Facebook and – because he likes me to go on Facebook, and he likes to – when I go, spinning through, seeing things. And he likes to see the crazy videos as well on Facebook, right. And it happened to – the picture came up of her – him and her, and straight away he went [muffled banging noise] like that. He went like that [laughs]. He said, “It’s me.”

Peter: No, it’s the physical that he wants – it’s the physical side that frustrates him. 

Andrew: Yeah.

Peter: He really wants to walk and he wants to talk.

Andrew: Yeah, that’s, that’s number one and number two.

Peter: That’s the one frustration. And sometimes like you said, when he gets angry, he’s trying to get out of the bed, he’s hanging on the edge of the bed sometimes, he’s putting his leg over, trying to get out. And we’re telling him, “You can't get up,” you know.

Olga: But, you know, every day when I go to see him in the morning, I talk to him in our language as well. And I said, [Greek word], that means good morning. And he tries to do with his mouth, he says—

Peter: With his tongue.

Olga: Sometimes he forgets to do the lips. And I says to him—

Peter: [Greek word]

Olga: “[Theo], don’t forget to do it with your lips as well.” And he goes like…you know, he – I see him, he tells me, but it doesn’t come out, the voice, it’s just the voice is not there, that’s all. 

Although Theo is now fully conscious – he requires 24/7 care and cannot be left alone. He has pulled out his tracheostomy tube, and sometimes his brother feels that Theo does not want to live.

But when he’s on his own?

Peter: No, no, no, no, he can't be on his own, there has to be someone there all the time, twenty-four seven. We got a team leader and a double up. The double up helps the team leader. But they’ll always – if one’s having a break the other one has to be sitting with him.

Andrew: He’s never left alone.

Peter: But he’s never left alone.

And why is he never left alone?

Peter: Because—

Olga: Because of the trachy.

Peter: because he might cough up stuff as well, and need to be suctioned. So they have to call the team leader. So he has twenty-four hour care.

And has he ever pulled the trachy out?

Andrew: A couple of times.

Peter: Yes, yes, he has.

Olga: A couple of times? 

Andrew: Yeah, there were.

Peter: Yeah, he has a couple of times. He’s done it at the home two times.

Andrew: When he’s been depressed he’s done it.

Peter: Yeah, yeah. Usually it was at the home that he done it more, pulling out the trachy. But at the—

Do you think it’s deliberate?

Olga: You know—

Peter: Yeah.

Andrew: Yeah.

Olga: You realise with [Theo]—

Peter: Yeah, yeah.

Andrew: You know when he’s, when he’s in a – in one of them moods—

Peter: He– yeah.

Andrew: …don’t want to live.

Peter: Yeah. He wants to end things, you know, he just wasn’t to get – you know. But—

Peter, Olga and Andrew feel that the doctors ‘wrote off’ Theo after his car crash. They emphasise the importance of keeping faith in his recovery, and keeping his spirits up with hope for the future.

So how important in all this is hope?

Peter: How important—

Hope?

Peter: Well, there is hope. You can't – well, you must never give up, there’s always hope.

Olga: Of course there is hope.

Peter: But look, at the end of the day, whatever happens, he’s happy. And that’s the most important.

Andrew: Nine years ago, you talk about Bob Hope, right, nine years ago—

Peter: They gave him no hope.

Andrew: They gave him no hope, right. And at the hospital when they wanted to switch the machines off and we said no, they looked at us as though – I said, “What, you want to kill him?” In other words, like they were sort of acknowledging, wasn’t it, that they wanted—

Peter: They wanted – yeah.

Andrew: And we said, “No, we don’t want it.” And we—

Olga: Nobody knows how—

Peter: In fact we – to give him a chance to survive—

Andrew: He survived all them—

Peter: When he was in a coma, he was biting, he was biting the thing, you know, and the – actually the doctor said to me, “Do you want – the best thing is to put a trachy to give him – in case someone doesn’t see it and he breaks it and he chokes, he’ll die.” So that’s when I signed and I got them to put a trachy in, to give him that more of a chance to survive. I don’t know whether it was right or wrong, but at the end of the day we didn’t want him to go. If God wanted him to go, he would have died then, innit? It was meant to be. Everything happens for a reason, right, I always believe that in life. We bought that land ninety-six and look how – for a reason, you know what I mean? Everything you do in life, something points to a reason. And maybe that’s what the reason was; do you know what I mean? I – we, we don’t give up, you know. 

Olga: No, we’re not going to, you know.

Peter: And one day he’ll – I’m hoping one day he’ll prove everybody wrong and he’ll talk. And there’s a few people that are going to get a few lectures [laughs].

Andrew: No, he’ll, he’ll never, ever fully recover. Put it that way.

Peter: No, but—

Andrew: But everything that he does—

Peter: The best thing, if he could talk, if we could get him to talk.

Andrew: If we could get him to – if he does talk, you know, that would be fantastic, you know.

Olga: A big bonus for us.

Andrew: Who knows? Who knows? Only him upstairs [pointing to sky] [laughs].

Theo regained full consciousness. His family are very proud of the progress he has made. But seeing him unable to talk or do anything for himself is upsetting.

Andrew: Yeah, I know, but I mean, I don’t like to see [Theo] be like that to be truthful, I mean, I’ll tell the truth.

Olga: Who does? Who does?

Peter: Nobody.

Andrew: I hate it. But at the same time, every little bit that he does more—

Olga: At the same time you’re going to help him as much as you can.

Andrew: Yeah, everything he does is like, wow, sort of thing, you know. Like every bit that he does is a wow.

Olga: But when you get the doctors telling you different.

Andrew: Yeah, no, it’s—

Olga: You know, but, you know, I keep on telling [my brother-in-law] - “Theo I want you to be strong, and I want you to prove everybody wrong, even the doctors. We’re going to try and prove, you know, everybody wrong.” He goes like this. So he knows. 

Does he manage to be generally happy or—

Andrew: No, he has sad moments.

Peter: No, the—

Andrew: But you, you recognise when he’s sad.

Peter: Yeah, he starts getting really agitated when he’s not – when he starts – yeah.

Andrew: So you have to try and cheer him up.

Peter: Like I said, if he’s really agitated sometimes it might help if I show him clips, it calms him down. 

Olga: Didn’t we used to put a video as well, the one when he was dancing—

Peter: Yeah, when he was dancing with my daughter, sometimes you put the family videos on, it might calm him down. But it’s to be expected because, you know, he wants to get up, he wants to talk. And that’s frustration. And the only way he can show his frustration is by getting agitated, you know.

Olga describes how her own emotions mirror those of her much loved brother-in-law and Peter talks about how hard it is to see his little brother so frustrated.

Olga: No, I said you, you feel sad every day when you see him like that, and you want to help and then you try and then, you know – when you see him and he’s happy it makes you happy.

Peter: Yeah.

Olga: When he’s low, you feel low. Because, you know—

Peter: It does break your heart when you see him like that and you know there’s, there’s nothing you can do. You know, we know what he wants. We know he – what he really wants. He wants to talk, he wants to walk. But he can't – you know, he can't physically – I keep telling him, “Theo we can’t wave a magic wand, it takes time, you know.” And he gets angry because he doesn’t want that time, he wants it now. You know, you can see it in his face.

Olga: And do you blame him?

Peter: No, you can't blame him, but, you know, it is frustrating. It is frustrating. It’s— 

Andrew: No, it’s sad, I mean—

Peter: We try, we try and—

Andrew: He gets his moods and, you know—

Peter: Yeah, we try encouraging him, you know, we try and tell him, “We’re going to be there for you, whatever happens, you know. But we need to learn to walk before we run. “You know, you have to go through all that – you have to keep repeating yourself to try and boost his confidence, you know.

Olga: And if you need to talk to us, we’re only next door, you just—

Peter: Yeah, yeah.

Olga: call us in.

Peter: Yeah. The girls go – when he, when he wants us – yeah. But it is hard, but people don’t realise it, but it is hard, it is hard to see your little brother like that, you know. You just have to be patient. 

Peter and Olga say go in to it with your eyes open, try to get as much support as possible, and learn from other families’ experiences.

Peter: It’s very hard. I mean, you know, in hindsight would I do it all again? Probably to – if you consider all the strain and stresses that me and my wife have been through, maybe I wouldn’t, I don’t know. I don’t know. It’s very hard. You must go in with your eyes all open. And, you know, it’s not easy. You need, you need not just your immediate family, you need all family support. 

Peter: I mean, at the end of the day, you know, whether we’d done it from the beginning, if we knew in hindsight, it would have been debatable, without the support, written support from family and – but you learn from – the hard way. We learnt the hard way. And we suffered the hard way. And hopefully he’s up there, he’s seen who’s there.

Olga: You know what I say, I say to everybody, yeah, “As long as you got your health, yeah, and love, that’s it, that’s what you need.” The rest of them, they will come.

Peter and Olga would like doctors to recognise that everyone is different and to allow hope.

Do you have any message for the doctors?

Peter: The doctors? Well, the doctors don’t know what they’re talking about basically. Don't paint everybody in the same light, because everybody is different.

Olga: Some, some doctors, okay, they are sympathetic and all that. Because at the end of the day you don’t know, yeah, how the family feels, because it’s not your family. If it’s one of your family and then you see how you’re going to feel. 

So what would a sympathetic doctor do or say?

Peter: To say, “Look...” the doctors say to you whatever you get in the first six months to two years, that’s what they say, don’t they? But that’s not true. Not – everybody’s different. Everybody is different and they should say, “There is hope.”

Olga: Yeah, but you know—

Peter: To give them hope, not doom and gloom.

Olga: Do you remember when—

Because it’s important to give hope?

Peter: Yeah, what, whatever God decides, if you use that term, at least if anything does happen to that person then you could say, “Well, that’s what God deemed.” And that way they don’t have it against you that they say doom and gloom all the time, do you know what I mean?

Olga: But, you know, at the end of the day the doctors are – they try their best.

Peter: Yeah, but they’re all covering each other’s backs, you know, they, they don’t want to give you hope.