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Family Experiences of Vegetative and Minimally Conscious States

Friendship and support for the family

Friends as well as family can be deeply affected by what has happened. Although we use the term ‘family’ in this module it is important to recognise that the impact we describe can be relevant to anyone close to the injured individual.

Friends can be invaluable to those most directly affected – both during the initial crisis of the accident, and in the long haul in the face of on-going trauma. Some existing friendships were strengthened– ‘I couldn’t have survived without my best friend, she has been my rock’. Other friendships were put under severe stress. 

Those we spoke to often felt distanced from other people and sometimes let down by friends they had thought they could rely upon. But they had also made new friends, established close bonds with other families, and encountered acts of great kindness from colleagues, healthcare professionals and strangers.
 

Angela describes how worn down she feels after her husband’s injury, but has been very lucky with the support she receives

Angela describes how worn down she feels after her husband’s injury, but has been very lucky with the support she receives

Age at interview: 50
Sex: Female
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It renews itself. And, I mean, at the beginning you’re not getting proper sleep, you’re not eating properly, because you don’t want to, you can't. It’s – sleeping was [sighs] not being able to sleep was just dreadful. Not dreaming when you do sleep, no dreams. Falling asleep listening to the sound in your ears of the trachy machine, his, his respirator, you – I could hear it when he was in the first hospital, every time I closed my eyes and tried to sleep I could hear that sound. Because I was listening to it for hours every day, you know. …It just changes your whole life, everything changes. Suddenly you have to decide what is to be done with everything. With your home, with your work, and this person that you’re responsible for. And everything is down to you. And shouldering it is what keeps you going in lots of ways, but it also wears you down. …I’ve been very fortunate, I’ve been very fortunate with my friends and family and colleagues. Who all supported me in one way or another, even if it’s just the drivers will give me a hug, “Come here.” And he’ll give me a hug, a bear hug. And they let me play darts even though my darts go into the wall [laughs]. 

And, you know, all those things, they’re all like strands in a net that are holding you up. And, if they do keep in touch with you those strands stay intact and keep you held up, you know. Just phoning to say, “How are things going? How’s [husband] doing? Is he comfortable? Is he...” you know. 

A lot of people who are ignorant about this will think, oh, he’s going to wake up some day. Oh, he’s going to suddenly react or he’s suddenly going to do this. You know, and when a friend said to me, “Oh, what happened when you went in after three weeks?” I said, “Nothing.” “Oh, I was hoping he’d have missed you and would have reacted to your voice.” I thought, fuck sake, you know, Jeez. And it hurts, you know, it hurts. Because I wasn’t expecting that. And her saying it is like – but that’s all counter balanced by all those brilliant people, brilliant people, who have helped. And I’ve made so many friends. I’m not a person who makes lots of friends, you know, I wouldn’t hang around with a group of people I’m quite gregarious but they’d be more acquaintances than anything. But I actually have made friends since this happened. Because I’ve needed them I suppose and I’ve reached out to people.
 

Talking to other families ‘in the same boat’ has been invaluable to Phil. He feels under a great deal of emotional stress (and has now got a puppy which cheers him up, but adds its own challenges!).

Talking to other families ‘in the same boat’ has been invaluable to Phil. He feels under a great deal of emotional stress (and has now got a puppy which cheers him up, but adds its own challenges!).

Age at interview: 43
Sex: Male
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I spend a lot of time shutting everything out. I’m emotionally exhausted from the stress of dealing with [partner] and helping him. Not deal – well, it is dealing with it because there’s a lot to deal with as well, and trying to help him. And it’s sad every single day. And then I’ve just added a heap of stress with madam [the puppy]. But in a few weeks she’ll get more settled and house trained and everything. So that’ll be a bit less stressful. 

But that – for me that’s how it seems to have manifested itself. And I think everyone that I’ve – the sessions that – where we just sat outside at [London Specialist Centre] – because the gardens are gorgeous, we had a wonderful summer, so every day we just sat outside, and we just chatted. And we’d laugh and cry and flip flop about stupid things and serious things. But it was all just… oh, what’s the word I’m looking for – it just happened as it needed to happen. There was nothing forced about it.

It wasn’t ten o’clock on a Tuesday and you were sitting—

Exactly. And so that was, that was great. And it sort of gave you all that emotional support. And the level of understanding that they have versus anyone that cares for you but isn’t going through it is completely different. There’s real empathy there. So everyone else tries to be helpful and loving and supportive, but it’s not the same, because they’re just not on the – organic, that’s the word I was looking for. It’s just not the same. 

I made some very good friends. One at [Hospital] initially and some others at [Specialist Centre] and very happily their loved ones have moved to [the care home] as well. So our family is back together. We’re in slightly different parts but we’re there now for each other, even if it means going to have a coffee in their loved one’s room rather than having a nice plenary area that we can all move to – which [Specialist Centre] had in spades but [the care home] doesn’t really. It needs a carer’s annex really, but it doesn’t have that space sadly.

And do you find you’re able to talk completely openly with the other family members?

Yeah. It’s been the therapy that therapists couldn’t give me. And I think they feel the same. I’ve had some counselling. I had some that work provided early on. And it – actually it just pissed me off, I didn’t like being told to sit down at ten o’clock on a Wednesday morning and reveal my feelings, that didn’t work. So I stopped after a few. And then I got some more through the GP that was – the process began in February but finally in June, July time the counselling was available. And he was very good actually. But actually what it turned into, or what I found helpful was not to sit and cry – because I – it’s just not – I don’t know why it’s not my way but it’s not. But actually just to sit and talk through the worries and problems that I’ve got, so it was a different sort of counselling. And he was very good. And he taught me something about mindfulness.
While some people felt close to other families in the same situation, others avoided contact with them – or even felt badly bruised from particular encounters. Some kept a distance from others because they did not want to think too much about the future and see how things had panned out for other patients – seeing other patients was a threat to hope. Others were worried that other families would disapprove of them – fearing, for example, being criticised for not visiting enough or for having lost faith in their relative’s recovery.

Pre-existing friendships also came under stress. People had less time for their friends and sometimes felt very angry. Tensions arose, for example, around insensitive language and prejudice against disability.
 

Angela feels she has become less forgiving, and describes how some people can be very thoughtless about the language they use.

Angela feels she has become less forgiving, and describes how some people can be very thoughtless about the language they use.

Age at interview: 50
Sex: Female
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So the last time I saw him standing upright was on his way down to surgery. And I don’t know if he’s ever heard or seen me since in two and a half years. And it’s changed, it’s changed me because I’m not as forgiving as I would be. There’s not one person in this world I hate, I’m not that kind of person. If I fall out with somebody the way we fall out is, “oh, all right then. Will you give me a call? Nah.” And that’s it. I don’t like fighting, I don’t like confrontation. I don’t take any shit from people, now that’s a different thing. But it’s changed me now. And I would stand up, I would stand up to people who… there’s – people are thoughtless about what they say. I think we were talking about this before. For instance, now if someone says, “Oh, I’m just going to go home and veg out.” You know, I really wish you wouldn’t use that word, you know. Or, “It’s a no brainer.” Or one of the guys I work with has frequently said, “Oh, I’m brain dead today, I’m brain dead,” you know. 
Family members could also feel alienated by the tendency of some friends to:
  • offer (often ill-informed) opinions about the injured person’s recovery or treatment 
  • insist that there was still hope, long after the family had come to feel that any hope for meaningful recovery was unrealistic
  • offer simple solutions or judgments without appreciating the complexity of the situation

At the same time they acknowledge that it was hard for friends to know ‘how to get it right’. Family members knew that they had become reclusive or difficult to be around, and sometimes they felt they pushed friends away. 
 

Sometimes friends ask questions of Nik that are unhelpful.

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Sometimes friends ask questions of Nik that are unhelpful.

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What would your message be to friends and acquaintances who sometimes might get up your nose with things they say? What are the things that people say that can be a bit annoying?

They ask me questions all the time, like, "Oh, can't he do this then? Can't he do this then? Oh, have you tried this? Have you tried that?" "Yes, I've tried that. Yes." And, "No, you can't do that." [Laughs].

What kind of things do they want you to do?

Like the whole squeeze my hand. "Can he squeeze your hand then? Can't he look at you then? Does he know you're there then? Can he hear you? Can he see you? Do you think he knows who you are?" I don't know. I don't know some of those things myself.

Have you tried taking him garlic and waving it under his nose? 

Yes, yes, I've tried the whole photos thing, there's been photos of him held to his face, yes. I've tried it all. No, people don't, – people don't understand, but I don't expect them to understand. Don't get me wrong, you know, I'm not one of these people that gets easily offended, although I – you know, inside you think, "Oh." But, but no, I don't know. Yeah, like I say, there's not a lot of positive things that you can say about this situation. 

 

Miggy found it tiring pretending to be positive for the sake of people who came to visit her son

Miggy found it tiring pretending to be positive for the sake of people who came to visit her son

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Miggy: I think one of the hardest things in it all is how to deal with other people, because Matthew had his twenty-first birthday while he was at home and people came in, and how on earth do you celebrate a birthday? But you have to pretend something for all those people who’ve been kind enough to give presents or their time. So you, as his main carer, as his mother or father or sister, have to go through this charade, “Oh thanks, he’ll love that. Thank you very much. That’s wonderful. Matthew, look what they’ve brought you.” And you are actually play-acting, really, and that, unless you like acting, that becomes so wearing. Absolutely drip, drip, drip, wears you down. 
 
Friends who focus on hope for recovery can be helpful at some times, but families also felt that this could become alienating and destructive. Joyous messages on her Facebook page that ‘Schumacher has done it [come out of a coma] – now it is John’s turn’ were not helpful to a wife who is expecting (and even hoping) that her husband will now die – and knows that the headlines about a racing car driver’s ‘recovery’ are probably a bit misleading. The annual arrival of a birthday card declaring ‘Miracles come to those who Believe’ distressed one brother. Claims from a casual visitor that ‘I can see he is definitely in there’ – were upsetting to the mother who was terrified that her son might indeed be experiencing his fate, but hoping he was safely ‘out of it’. Josie described her friends as ‘clueless’ – partly because they were misled by media images: 

“I remember someone saying to me “what you've got to remember, Josie, is while there is life, there is hope.” And you just watch the person you love retching and heaving and absolutely tormented when the tube goes into their lung for the third time. Yeah. And literally you have to sort of think “no, I'm keeping my hands off your windpipe but –”. 

Rose said she withdrew from many friends: 

“You know, people don't really know what to say. You know like somebody's died and, "Oh, no, we're sorry." But when you're talking about something like this, it's, "Well, you know, at least they're alive," when you don't want them to be alive… I just found that I just switched off from so many people because I just couldn't deal with ... you know. And I felt a burning need for them to really understand. But you know they're not going to. And really, you're consumed by it. And I had nothing else to say to anybody (laughs). That's how I felt.” 

Ann and Bea (mother and sister of Fiona) say they avoid going into detail about Fiona’s condition, especially as they now believe it would be better for Fiona if she never regained consciousness – something other people may find hard to understand.

Ann: “We never go into detail, even with close friends, about Fiona's state, her present state. 
Bea: We don't want to appear too negative.
Ann: It's really hard. Yes, it's really hard because—
Bea: You can't talk to anyone, is what you're saying?
Ann: Yes. Other people are so positive for you and so optimistic for you and you can't – and they want to support you and, you know – and they do support you in lots of ways. But you can't sort of say, well, of course, you know, “we don't think that's going to happen”, which is what is really deep down … 
Bea: You can't throw it back in their faces.
Ann: No.
Bea: When they're trying to be positive for you.
Ann: Yeah, and the other thing my friends say is, "Well, you know, you don't know what medical science is going to come up with."
Bea: And I would say to my friends, "To be honest, I'd rather medical science didn't come up with anything."
Ann: Well, I do say- I do say that, you know, well, you know, she could sort of- even with help, could be worse off than she is now … because, you know, it would be a miracle for Fiona to come back as the Fiona we knew. So anything that would happen would be in between, and that could be a lot worse than what we have to live with now.”

Friends and acquaintances offering ill-informed ‘solutions’ or judgments could also be very difficult. It was not uncommon for friends to assume there were simple solutions in a situation where the solution (if there was one) was anything but simple. Both Morag’s father and Cathy’s brother are now dead – but both still sometimes encounter insensitive comments and intrusive questioning.
 

Morag was challenged by an acquaintance who took it upon herself to tell Morag that she had been ‘cruel’ to keep her father alive.

Morag was challenged by an acquaintance who took it upon herself to tell Morag that she had been ‘cruel’ to keep her father alive.

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Oh somebody I went to school with, we were out on a hen do, I hadn’t seen her for probably ten years and she got drunk or whatever she was, I’m not quite sure, and she locked me in a toilet cubicle in a pub [laughs] and A, started telling me she my shoulder and “what are you doing in the ladies’ toilets, he’s been dead a few years now [laughs]. What’s he doing in the ladies’ toilets?” But basically saying that, you know, we as a family were so cruel and we were so wrong and we should have just let him go and we should have let him die, and she didn’t grasp, I don’t know if it was ‘cause she was too drunk or because she didn’t want ‘cause she had a, you know, preconceived ideas, she didn’t want to believe, for whatever reason, that there was nothing we could do. You know, he – the ventilator was turned off, he continued breathing and he continued breathing by himself for, you know, nearly ten years. But she was just, you know, you’re so cruel and as a family, we should have let him go and we shouldn’t have kept him alive and I don't know how many times "we didn’t keep him alive, do you not understand?" We didn’t keep him alive, he was alive. We didn’t keep him alive, just in the same as you are and I am, we’re just alive. 
 

Cathy thinks people label her a ‘bitch’ for enabling her brother to die.

Cathy thinks people label her a ‘bitch’ for enabling her brother to die.

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They ask horrible questions. And the one that I fear is the one – the one now, after I’ve choked it all out, after I’ve explained about the accident and the eight years and [speaks tearfully] going to court and having to write an affidavit that I thought he should die, which is a horrible thing to have to do. And then if I can bring myself to explain what withdrawal of nutrition and hydration is, which is a horrible thing to have to do, all of the time which I’m terrified that the person listening to me is actually thinking like, what a bitch. 

And then the question I sort of dread is they’ll say something like, “Oh, but people do wake up though, don't they? Because I read about this guy in Canada and he woke up after twenty years and he was fine.” [Laughs] And then it’s kind of like – it’s not the person’s fault but they’ve just kind of said to you, “Oh, maybe you just murdered your brother for no reason.” And then again, I just don't know what to do. So that’s kind of one of the reasons why talking about it is so difficult and I try to avoid it. But then if you – there’s that other thing about what you say, isn't it, because if you – one of the good things actually I think about getting older is people ask less about siblings. Whereas at the time – because what I found quite – so basically like within our village I definitely – I mean, I became, you know, the sister of coma boy, and the girl from the [pub] and my parents’ daughter. People would ask me in the street, they’d say, “How’s your kid?” they’d say. “I don't like to ask your mum and dad.” I never quite knew what that meant. Like why is it okay to ask me then, I don't know. I still don't really get that [laughs].
Friends who wish to be informed and supportive can help by taking the lead from the person closest to the injured relative and perhaps learning a bit about the realities of ‘coma’ themselves – including exploring other pages on this website.

Last reviewed December 2017.
Last updated December 2017.
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