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. Were 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 hes sad.

Peter: Yeah, he starts getting really agitated when hes not when he starts yeah.

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

Peter: Like I said, if hes 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: 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 hes happy it makes you happy.

Peter: Yeah.

Olga: When hes low, you feel low. Because, you know—

Peter: It does break your heart when you see him like that and you know theres, theres 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, Were 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, were 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: 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 wed 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 hes up there, hes 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.

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.

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

Peter: Hes doing really well, he came home on May the twenty-first, nearly two years ago, and hes come on leaps and bounds. Hes got to the stage now he understands what’s going on. You write things and he reads it off the board. And hes 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 hes 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 theres 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.

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 hed 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 hes dreaming.

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

Peter: Yeah.

Andrew: And he wakes like when hes half asleep and hes going to wake up you see him stretch both arms like that and he don’t even know hes 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 hes 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 hed 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 were 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 hell look and hell, hell 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 hes 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 hes got his own mind, you know.

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 hell 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 weve got, and he loves that. And then it calms him down, and hes 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, hes trying to get out of the bed, hes hanging on the edge of the bed sometimes, hes putting his leg over, trying to get out. And were 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 likeyou 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.

But when hes 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 ones having a break the other one has to be sitting with him.

Andrew: Hes never left alone.

Peter: But hes 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. Hes done it at the home two times.

Andrew: When hes been depressed hes 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 hes, when hes 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—

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, theres always hope.

Olga: Of course there is hope.

Peter: But look, at the end of the day, whatever happens, hes 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, hell 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, were not going to, you know.

Peter: And one day hell I’m hoping one day hell prove everybody wrong and hell talk. And theres a few people that are going to get a few lectures [laughs].

Andrew: No, hell, hell 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].

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, hell 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, were not going to, you know.

Peter: And one day hell I’m hoping one day hell prove everybody wrong and hell talk. And theres a few people that are going to get a few lectures [laughs].

Andrew: No, hell, hell 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. Weve had I’ve got—

Olga: Hes 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, hes a fighter. So he will fight. And I keep on telling him, and that gives him strength, that’s what I believe anyway.

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 hes 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.