Family Experiences of Vegetative and Minimally Conscious States

Impact of visiting

Seeing your mother, partner, brother, daughter, or close friend unconscious, surrounded by machines in intensive care is profoundly shocking. Visiting them over months and years in a severely brain injured state can be even more challenging.

A few people who spoke to us described positive things about visiting - at least at first. Some valued having time to ‘say goodbye’.

Emma’s relationship with her mother before her injury had been difficult. Although, seeing her mother in a vegetative state was distressing, Emma valued being able to visit her mother and talk to her.

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Well, I wonder, I wonder – I mean, is it true that [laughs] – is it true that hearing is the last sense to go, I don’t know. Sometimes there was a flicker, sometimes there was a movement. I don’t know, I don’t know. But I did feel that perhaps for my own self that she heard what I said, and I did – I was able to say, “I love you.” I don’t like you, but I love you [laughs]. Which I still can say, you know, that it was – yes, it was – but it’s, it’s – yes, it was a – I think – oh, it’s a real difficult one actually, yeah, yeah, yes. Don't know. It – you carry a lot I think with this sort of process. And in terms of, you know, guilt, how, how – why, you know, how has this happened? Should I have done something? And certainly for me being an on – the only child, oh I should, I should have stopped being so pig headed and picked up the phone and it was too late. But those three years, although it was difficult, I sometimes absolutely dreaded going down to [the care home], opening the door and seeing this person in this bed. You know, it was – you know, sitting down there and talking through about, you know, nice things as well, not just my anger [laughs]. It was it was a process, and the process was good. You know, the difficulty of walking in and the huge amount of angst and then it was sort of washed over, and I would leave thinking, [sighs] “it’s okay, it’s okay, it’s okay.” Until the next time, you know, but...

So tell me about that – what’s the source of angst? Tell me about …

It’s [sighs] it leaves you feeling very helpless I think. Because, I mean, [intake of breath] initially you want – you just want a solution. “Yes, of course you can fix it,” you know, that’s the thing, “of course you can. You can sort this out.” And I just thought, “No, of course it can be fixed, there’s amazing things you can do.” You know, “sit somebody up, it can, it can happen, you can sort it.” And I think – it’s the sort of helplessness when you see somebody that you think, oh, you know, ah, [sighs] sort of, “I want to shake you, you will – you know, do something,” you know. And it’s – it took quite a long time I think to realise actually that this was not going to – you know, mum was not going to get better, she was actually going to get progressively worse, or stabilise. And [sighs] it’s – I think there’s just nothing, absolutely nothing you can do.

And also because of the – I suppose the invasive amount of, you know, pipes, you know, that kept – were keeping her alive, you know, it was difficult to [sighs] – you know, there was a sort of fear of touching somebody or, you know, it’s such an alien situation really. But you get used to it. It took time, but that was – you know, the awful thing, you just get used to it, okay, well, that’s fine, you know. Or, you know, you just walk into the room and, you know, there’s bags and, you know, and you just get used to that body being there and touching that person. Yeah, it’s the first, the first months are very difficult I think. Very difficult, you know. That can't – you can't go on. That person has got to do something.

There’s – you know, they’re going to sit up in a minute and say, “Oh, it’s fine,” you know, or there’s going to be a miracle drug and, you know, that severe bleed is, you know, the blood will be, you know – I don’t know, sucked out of the head, some sort of crazy notions that you have. And yes, yeah. It’s a process. It was, it was – yeah, it wasn’t very nice actually to be honest, it was not very nice. Because it’s, yeah, you have no authority or control or say I think, which you can't, you know, as a person, and you have professionals, and you’re not, you’re just dealing with that person really. It’s – yeah, I yeah, it’s difficult. It was – yeah, it was difficult.

Her mother always appeared calm and did not develop physical complications. Emma felt her mother looked ‘serene’ and liked visiting, although she was always left feeling ‘unfulfilled’.

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And she looked very serene and peaceful, I think that was the great thing. Through – all through that, I mean, absolutely flawless skin. And act – the other, the other sort of – it was sort of distressing in a way, but I mean, it was just watching a person grow old, but albeit gracefully. But when my mother went – had the stroke, she had dark hair, she was seventy, so it was grey I’m thinking ish. But she was very much a person that liked – you know, was not going to get grey. [Sighs], but that process of course, she became grey.

Simply because her hair grew.

Yes. And she was completely grey. And obviously because she had – you know, the food I suppose was minerals, her skin was absolutely flawless and no lines, but there was, there was this sort of aging process and nothing was done so, you know, her I suppose hormones or something, you know, she had this sort of facial hair. And yet sort of quite youthful, but this sort of very strange sort of aging. Very odd. It isn’t odd, but it’s odd watching it because you’re watching it in – as an onlooker. I think it was quite – but there was no – I didn’t see – I didn’t think – I mean, it was just peaceful, it was very strange, you know, and you think, “oh gosh, you can't – can't you do something to, you know” – but I used to buy clothes that she could wear. I don’t know whether that was ever – because I think she’s normally in a shift for sort of ease. But I felt it sort of almost cathartic to go and buy clothes that she would like.

And I suspect – I never found them when she died actually, so [laughs] I think they were – probably thought her silly daughter. And I felt that was, you know, even if – can you, you know, put a bed jacket on or something, it was – that’s a bit of her rather than this person lying in a gown as it were. But I suppose that was – that’s quite distressing in a way, you sort of psyche yourself up when you go [sighs] – I mean, you sort of get used to it and you sort of don’t. But each time the expectation is not fulfilled really. You never fulfil that, because you never get out what you want to achieve at each meeting. Because you want, you want, you want, you want something and you never, you never achieve it. Although for me it was very, it was very – you know, I liked talking to her and telling her off and telling her how I felt. And I could do that because she didn’t say anything back to me. So that [laughs] – in that respect – but I always left, you know, wanting. You never – you go, psyche yourself up, do it, you know, chat, chat, chat.

And there’s always a – you know, you never – that sense of fulfilment is never – you never get that. And it lessens and lessens and lessens. You still want it, because you still have that yearning hope, you know. And you never get it. And as the years go by it diminishes and diminishes. But you still – there is still something that makes you go back to visit that person. And for me, for my mother, there was still some pull, you know, still every single time there was something. I thought, yes, there will – there’ll always be – there never was really.

A yearning hope for...?

I don’t know what it was. Something. I don’t know whether – you know, I don’t know. I don’t know what it was, but I always felt [sighs] I don’t know, I just – maybe next time something. And you know realistically it won't happen, but it’s what – I think it’s almost what pulls you to see that person as I don’t know what, but there is going – there is – I don’t know, I don’t know. I can't really explain it. It’s what pulled me back, this – whether it’s this sort – well, it’s unconditional love, as I said. But, you know, psyche yourself up, sit and chat and stroke, and there’s got to be something. Is she listening? Can she hear? You know, can she feel my, you know, my hands on her face, or is that – and you always feel unfulfilled. I always felt unfulfilled. And that is just because it can never be fulfilled. You can never have that little bit of something that you want. It is not possible.

And if I asked you to imagine it or fantasise about it, what would it be?

Some – something, some recognition I think. I think that’s all you want is something that that person would – just a lift of the finger. Or, you know, something that, yes, I know you’re there. That I think is – but I mean, that’s a great romantic notion. And you know that it simply can't happen. But you want that storybook. I wanted that storybook, I wanted that recognition that I – Kate knew I was there. I never got it because it pract – it just wasn’t ever going to happen. But I looked for that and that, that I think is very difficult, because you never, you never know. Oh, hearing is the last sense to go, is it? Or can you assimilate what you’re hearing, or is it just bluuuuu. You know, how does one know? So that’s great, you know, nurses – the nurses said, you know, “Hearing’s the last...” well, is it? How do you know? How do you know? And what is it? Are they hearing – you know, is Kate hearing Emma speaking? Realistically? You know, of course.

Most people we interviewed spoke at length about how upsetting they found visits – especially as time went on. They made comments such as: ‘Seeing him like this breaks my heart’, ‘It seems so cruel and undignified – I dread every visit’, ‘I put on a brave face and smile and smile, but it is killing me slowly inside’.

Angela feels redundant visiting her husband because she gets no response. She describes how she, and other visitors try to act cheerful when they go into the care home.

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Age at interview: 50

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I just chat to him, tell him I love him. … [Cries] He knows that but I tell him anyway. I sometimes read to him. Mostly I would sing and play the guitar. Because I do stuff that we used to do together and I do the easy stuff like the Presley stuff with three cord things. Because I’m not really a guitar player, I’m, I [play the piano] primarily, but – yeah, I took up the guitar again, I actually bought a guitar, because he’s got, he’s got about a hundred guitars, but I didn’t want – they were all good ones, you know. I didn’t want to be bringing into the – in and out of the hospital, you know. And we’ve left a little – there’s a wee guitar in there as well. And in the – you know, when the weather’s good we go outside. And he had a tan when he was in the general hospital because he was outside twice a day and we’d feed the birds and I’d make sure he got some air and sunscreen and his shades, and we would sit there. You know.

In the rehab hospital the social worker there said if Oscars were given out for acting in here the place would be littered with them. Because people come in with their hearts broken and they’re trying to cope with situations, and they try and act as if everything is okay, you know. And it’s not, and your world is collapsing around you and you’re losing everything that’s important to you, but you have to keep going.

One of his friends said to me one day, “Oh, [Aaron] wouldn’t want to live like that.” I said, “So what do you want me to do, go up and smother him with the pillow? You big eejit. Don't phone here again.” And I won't take it, I won't have people speaking like that about him. “Can I come and visit him?” “No, you can't.” People who were kind of ghoulish about it, you know, just wanted to see him. You know, some of his other musician friends did go in and see him, they didn’t tell me they were going in, but there was three of them and I think they were nearly holding hands going in, they were so terrified. But he phoned me later and he said, “He looks fantastic and we talked to him. We were going, do you remember that gig we did, and we reminisced.” And I was glad, I was really glad they did go in. Though it can be hard for people to see, because they don’t know what to expect and they don’t know how, how difficult it is to look into someone’s eyes and not see any recognition or any awareness -especially someone you love, you know.

And you’re surrounded by people who are injured. So every day of your life that you’re going in and out of these places, you’re not just seeing your loved one, you’re seeing other people’s loved ones. And all the little tragedies and big tragedies that happen. …If I ever get sick I am not going to hospital. …Like hanging onto the door frame like this.

Helen does not know how to speak to her brother-in-law, and Mark feels the same.

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Helen: But – and I struggle with a man that I don’t know intimately, I found myself talking to him like a naughty two year old. And sometimes I think, if you can hear me [laughs] I’m so sorry, but I can't, I can't actually do it any other way. I can't, I can't have a conversation with him, and I can't hit the right tone, apart from this naughty boy thing. Which I think if he can hear me he’s going to hate [laughs] it, he must be hating it. But – so I kind of would like confirmation that that doesn’t matter to him, that he can't hear [All laugh]. Or confirmation that it does matter, in which case I will really struggle to try and talk to him like an adult instead of a child.

Mark: It is different – talking to somebody in that situation is, is, is surprisingly difficult really. And I, I thought originally that that was because he was in the condition he’s in. [Um], but then again, when you think about it, we wouldn’t have had inane conversations about the weather and the price of beans for the time of year or whatever before this happened. And, and the kind of things we would have talked about before this happened you just can't talk about with him now really.

Because, because there’s things that will point – or they’re about things that you don’t want to remind him about. I don’t want to have discussions in front of him about what’s happening with this house and what’s happening with his car and what’s happening with his business and all of that kind of thing. Because I think if he is aware then he’s just going to worry about that and, and – because aware and worry are the same thing to me, isn’t it, and you kind of think, well, he may be thinking, oh, I wonder what – but I wonder what is marginally better than, oh, the buggar’s selling my house now, you know, or whatever it might be.

We’re not at the minute but we will probably get to the point where that will happen. So, so conversations are difficult. And you end up saying, “Oh, it’s sunny today, isn’t it?” And as soon as it’s out of your mouth you’re thinking, what are you saying? [Laughs].

Nik has very happy memories of her father, and can’t imagine him not being able to recognise her now. She dreads going to visit him now, but feels glad once she has been to see him.

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Nik has very happy memories of her father, and can’t imagine him not being able to recognise her now. She dreads going to visit him now, but feels glad once she has been to see him.

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[Laughs] it – he was just – he was just proud to have a daughter, yeah. He was just so – so proud. And we told each other everything and we – we didn't have your normal father-daughter relationship. There was things that probably I shouldn't know, probably that I shouldn't tell him and he shouldn't tell me, but we did and that's how we were. That's just how we were. And all my friends used to sort of envy our relationship and think, "Oh, I want a father like yours," and you know, things like that. But yeah, so it was just the two of us. It was – it was – my mother had moved away. He – his sisters had moved away. His mother had passed away. His father had passed away. So it was just us two.

Was that from quite a young age, it was just you two, when you say your mother had moved away?

My – no, my mother moved away the year before. So yeah, so it – even though my father was up to mischief a lot, mind, he wasn't there a lot of the time, but I knew he was there. I knew he was at the end of the phone or – or I'd speak to him or – and I just knew he was there. But yeah, so – so just him knowing who I was now, it would just mean – but I don't – I don't ever imagine him not knowing who I am, if that makes sense.

That's unimaginable.

Mmm, yeah.

What do the visits mean to you? What does going there feel like and visiting him?

I hate going there, and I feel guilty for feeling like that. I don't even know if that's the – if that's right, how I feel. You don't know what's right or what's wrong, how you feel, but I hate going there. But I feel – I always feel better after I've left there, if that makes sense. It's hard getting me there, but when I'm there, I feel better that I've been to see him and that – just that I've seen him, just – and that maybe he's known that I've been there, you know. Just things like that. But when I go up there, it's – it's hard. I usually take my daughter with me because, like I said to you before, I don't know what to say to him. I don't like saying, "I'm going here, I'm doing this," or – because I just feel like I'm rubbing it in a bit, but – that I can do these things and he can't. So I just tend to sit there, sit in his room with him. My daughter will draw him a picture and me and my daughter will just be talking and we'll – I'll just say, "Show grandpa your picture," or, you know, try and include him in – in the thing. And I think he would just like just hearing me and my daughter being there and being normal. I think that's – that's what he'd like. He likes that anyway. He liked that before, just the normal things.

And I always kind of put music on for him. He loves his music. I know he can't see, but I buy him loads of comedian DVDs because I think, "Well, if he can hear, then at least he can hear – he can hear them being funny," and maybe have a bit of a laugh in his head. I don't know. Because you don't know what to do. What can you – what can you do?

People described how devastating it was to see someone wither away and lose everything they had once enjoyed and valued. The comparison between who someone had been, and what they had become since their catastrophic brain injury could make visiting very disturbing, and people worried that their relative, if they had any awareness at all, might have insight into what had been lost. It was also upsetting if their relative seems to be in pain or distress, and it was difficult to know how to mark special family occasions or traditional times of celebration.

Nik works with severely brain injured young people – and enjoys her work - but it is much harder to see her own father in this condition.

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Nik works with severely brain injured young people – and enjoys her work - but it is much harder to see her own father in this condition.

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Why do you think that is, that it's harder with your own?

Because I – because I know him. Because it – because it's – because I know him. I knew him before. I know him now and it's just hard to come to terms with – with that, whereas the people that I've worked with, I didn't know them before. Not that I don't care. Of course I care. But it – I'm – as a job and I'm going there and I'm doing it the best I can, whereas with my father I know what he was like before and I just can't help but keep thinking that when I'm there, what he was like before and what he would be saying and what he would be talking about and – so then that – that is all that I think about when I'm there rather than thinking, "Right, let's do this," or "What can we do together?" "What can we – where can we go?" Or – I'm dwelling more, not looking forward.

So I hope that I can get over that, because I – it's only been this year that I've – that I've really spent more time there this year. Talking – I've always gone up to see him, but this year I've gone – spent more time – not this year, last year, 2013 [laughs], I've spent more time there. I've looked into, you know buying more things for him to – if, you know, if he is aware but can't show it that – that can make him a little bit more happier because you don't know what to do. What can you do to make them happy? What can you—?

Gunars and Margaret find the contrast between who Gunar’s sister had been, and what she became, very painful to observe.

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So can you describe what she was like when she was in a vegetative state?

Gunars: When she was in a vegetative state occasionally there’d be muscle spasms. Occasionally, as the whole thing became prolonged, contorted, twisted. Her face swelled up a little bit because of the steroids. She had to have Botox treatment to her lips because she kept biting her lip. On a good day she might just open her big blue eyes and you could look into them. But most of the time she was asleep fundamentally. But being cared for in a very good environment, by people who got to know her in a different sort of way from what I’d known her. She was an active sort of person – a mother, a sister, a grandmother, all those sorts of things.

Margaret: She was a person used to being in control. She was someone who was the centre of the family. She was the centre of the family, she pulled everybody together, and I knew her only briefly before she became ill but even for me, going in and seeing her being increasingly contorted and increasingly… We didn’t know whether she suffered or not because she was heavily drugged, but she certainly wasn’t in the state that she – as I knew her - would have been happy with. Because she was one of these people who liked to be in control of her own destiny. And suddenly there was this woman with no control whatsoever. And we could do very, very little about it, initially.

Angela’s husband – although usually unresponsive - wept on his birthday and on their anniversary. It was heart-breaking to see him weep, but at least it was a reaction.

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Age at interview: 50

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The first time it happened, he actually was really sobbing. And it frightened the crap out of me. But it also made me feel, well, he’s feeling something. He’s feeling something. It’s not a nice feeling, but he’s feeling something. This is good, it has to be good. And it continued – it was when he was off his medication, and it continued – a few times – he did it again on our anniversary and I was reading an anniversary card to him, and he did it again on his birthday, when we were singing happy birthday to him, he started to sob. And it was unbearable because he was, he was crying like a child, not like an adult. He was uninhibitedly sobbing. And it rips your heart out. You, you really do feel like you’ve gotten punched in the stomach and someone has reached into your chest and pulled out your heart and stomped on it.

[Speaks tearfully] To see the person that you’re trying to protect so unhappy and crying. And I’m very protective of him, I always have been. I mean, that’s funny, because he’s six foot tall and I’m four foot ten. But I used to look out for him all the time. Because he was really soft [cries] underneath, he was really sensitive and soft underneath his cutting kind of humour, his assertiveness, you know. He was never – never seemed to be in any doubt about what was right and wrong in – like everyday day, you know, he was a man of integrity. And – but very easy to wound. And I always – because I’m tougher, you know, I’m [sighs] I am tougher than he is, so I just kind of protect his feelings. I wouldn’t – I would jump to his defence if anyone said anything about him and say, “What?” [Laughs].

And one of the guys in work said to me, “You’re the only woman I’ve ever met who never complains about her husband.” I said, “What’s to complain about? He’s great.” [Laughs] You know. People are like, “My fellow does this, my fellow does that.” No, not my fellow. Even if he was the worst in the world I wouldn’t say to anybody. Desperately loyal, very loyal, both of us to each other and to our families, you know. But watching him cry...

Did you feel at those moments he understood his situation? Or what kind of interpret—

I don’t know. I don’t know.

See, if someone’s – when someone’s brain is injured this like, it’s everything of them. It’s their hard drive. It’s the bit that controls their personality and their physicality and everything. And when you can't communicate with them, it’s just heart-breaking. His brain was what made him what he was, you know, his brain was him, as it is it for all of us. And, you know, I’ve heard about personality changes and all the things that can happen, and I was willing to accept any of those things. Even just to get him back a little bit. And of course, I would have accepted it like a shot. But that’s all I got, was crying. And not even like looking at us and crying, or looking at me and crying, just crying, as if he was on his own. It’s like he’s on his own. So now when I go into him, I’ll just put my arm around him, and put my head on his shoulder and talk to him and hug him and kiss him, because that’s the thing I can do. That’s all I can really do now. And hope he feels it.

When the patient is in a minimally conscious state, their reactions on any particular day can be very variable. This unpredictability can be confusing. It can take friends and family on a roller coaster ride of hope and despair. If the person has become fully conscious that, too, comes with its own challenges

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.

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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.

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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.

Family members are often advised to try to ‘get on with your life’. But this can be almost impossible to do if the patient has some consciousness, especially if they are being cared for at home, like Theo. It can also be hard to do even if people think that the patient is unaware, or barely aware, of their presence.

When Fern visits her partner she now feels: ‘he’s not there. A body is there. That is it’. But she still finds it hard to detach.

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“Go and make your life,” and it’s like, but you know, that’s not as simple. You know I spend a – I go to the hospital, I come back, I spend half an hour on the bus sobbing my heart out and in front of people. Do you know what I mean it’s not [laughs]. And I’ve done that a number of times, walked round the town and something’s just triggered it [cry noise]. Do you like I walked round town because there’s no controlling it and they just – I think they think that I’m just getting on with life. They have no idea how much of the – you spend all that time trying to create a new life, but you also spend a good amount of time in the foetus position [laughs], do you know? A good amount of time. And for me, that’s me coping with it. That’s me acknowledging what I’ve been through and releasing what I’ve been through, instead of denying it and bottling it up. Suppressing it and then getting ill, you know. So, yes, I spend a good amount of time in the foetus position, but not as much as I used to. Not as much as I used to, but it has been a hard week, with all that stuff over there and I did cry a lot on the bus.

Imogen spoke to us after her husband had died. Looking back she feels her life was ‘in limbo’ until she could bury him.

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Sex: Female

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Oh, I still loved him. I mean, I still couldn’t let- I couldn’t live my life as long as he was in that situation. I couldn’t – you know, some people I know have said, or I've heard of, who say, “that's not the person therefore I get on with my life and that person is there and that's not him”. No, he was still- I still went- I went there every day, it was my life to go and see him. I mean, I felt ill every time, I felt sick nearly every time I went. I would sit –

Why did you go every day? He didn’t know you were there, he wasn’t responding to you, what was it that took you there?

Because I couldn’t leave him there. I couldn’t let go. I didn’t think he was there waiting for me, I didn’t think that. But I couldn’t let go and say, I've got a life without a husband as long as he was there. Because on some level, he was still part of my life. My life had gone into a complete limbo and I was floating. I don’t know how I did some of the things I did, but every single day I went there. And if I didn’t go, I arranged for my sister to go or my children to go, or one or two very close friends, every day he was visited. People went there and read to him. We tried everything. We played him music, people made tapes to see if we could get him out of it. Everybody did everything possible. Even though I didn’t think he was there. Even though I no longer thought it was him, I did everything you could possibly do to try and fulfil those demands I suppose of trying to see if he was still there.

Angela thinks that she ought to take some time for herself – and try to recover from the exhaustion and stress that have defined the last few years.

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Age at interview: 50

Sex: Female

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But now that he’s been assessed and –it occurred to me when we were talking before that I have to take a step back. I think it’s this survival thing, I have to take a step back. Because I’m not his – I was kind of his primary carer, even though he was in a general hospital, but I did all his laundry – I still do things like I shave him and I do all his manicure, pedicure – I won't let anyone near his nails, I won't let anybody near them. One guy cut his nails off, a bit tall guy, and he hacked them off, you know. And I said, “Here, you.” He’s a big huge guy, he’s about six foot four. “Come here. Never touch his nails again.” So he was – so – they were just trying to help, because he’s a guitar player, he has long nails and his nails grow really fast so I have to keep an eye on them.

So I do his shaving and – but when he was in the general hospital he wasn’t able to have – he wasn’t in the showers or anything, so all the stuff had to be done – like I’d actually soak one foot at a time and [laughs] clip his nails and give him a foot massage and that kind of thing. And so you would be there for hours, you’d be there for hours trying to get him sorted, you know. But they’re the only things I can do for him now, and play some music for him. I talk to him, I tell him what I’ve been up to and what’s going on, who’s doing what. And I get – I normally get a waking up when I talk to him. He will move his head and maybe open his eyes and that kind of thing. And then he’ll probably – most likely go back to sleep again, most often that’s what happens.

But I’ve had to take a step back because it’s either that or have no life at all. And [sighs] and of course like for two years I didn’t get sick. I couldn’t afford to get sick. And then I got sick this Christmas and I was flattened, absolutely flattened. And other people that I was working with all got this cold but they – and they were all older than me and they all improved within a week, and I was still sitting like a bag of shite on the couch feeling awful, you know. And I couldn’t go in and see him for three weeks. And it was only then I realised how hard it is to go in every day.

Some people said they eventually became ‘numb’ - so used to seeing their relative in a vegetative or minimally conscious state that, over time, it became ‘almost normal’. They did not notice how it was affecting them – nor did they think about how the situation might be changed. Seeing their relative after being away could be particularly distressing and sometimes prompted a change of perspective. Sometimes people chose to stop visiting, deciding that visiting is ‘pointless’ if the person has no awareness, or just too painful. Not visiting, however, can be a source of guilt and conflict.

It was only after she’d been away for a while that Cathy realised how difficult the situation at home was with her brother, Matty. Later she found it hard to visit at all – not wanting to look into his ‘unseeing eyes’.

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I went to France for a year as part of my degree. And that definitely changed – definitely that distance – it was when I came back from France, I remember, I remember coming home at Christmas and walking into our bungalow – we’d had this extension built on the back of our pub to house Matty and my parents had a physio room and, you know, all sorts of stuff. And I remember walking in and he was kind of propped up on the sofa and someone – I can't remember who it was, but it was one of the people that looked after him, was sort of massaging his feet. Which I think is a bit biblical, isn't it, again, I think somebody in the bible like massaged Jesus’ feet or something. And I just remember thinking – just looking at this poor thing, you know, this poor body, and just thinking, – I remember the actual words I thought – it’s swearing if you don't mind – I just remember thinking, I just thought, he’s fucked. He’s fucked and this is fucked up. And that’s what I thought. And I don't think I’d have seen it if I hadn’t been away for three months and come back. I think it enabled me to see it. But I thought it, but I didn’t say that out loud, and then I sat next to him and told immense amounts of lies of all the interesting things I was doing in France. Whereas actually what I was doing in France was getting really drunk on my own in my little flat. And walking round war cemeteries and sitting in the library of the Holocaust museum.

But obviously when – I think that’s what people also don't understand about – it’s really difficult to explain that it’s the eyes open that’s actually much more distressing really. Unseeing eyes. I found that really…I found that really difficult. And when it got to the point where – when he eventually went into a nursing home and we – when we decided to apply to the court he then went to a nursing home. And I didn’t really visit after that. I couldn’t face it anymore, [speaking tearfully] which I still feel so guilty about. But it was his open eyes I didn’t want to see. … And I remember once trying to explain to someone, and maybe I just did a bad job, but I couldn’t explain why…why it was so terrible. But I think it’s something to do with the idea that we have this idea, don't we, that the eyes are the window to the soul. And probably in the early years I spent so much time kind of like looking into his eyes, trying to divine awareness and hope for awareness. …And then later, you know, coming to the time where I really thought that – well, I absolutely thought there was nothing there but still felt terrified that there might be. I still feel terrified now at the prospect that he had any awareness at all. So for all those early years of desperately hoping there would be some awareness that we could find and build on, whereas now I just hope there was never anything, I hope he never knew anything.

For discussion of the significance of different responses from the patient from the clinical perspective see the section on ‘Definitions’.

See also ‘Messages for friends and colleagues ’.

Last reviewed December 2017.