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Family Experiences of Vegetative and Minimally Conscious States

Message from families to families

The people who spoke with us often wished that they had known others in the same situation and could have benefitted from their experience. But they often didn’t feel in any position to offer advice to others themselves. This was because most felt they were still on a journey that wasn't over yet and they were also aware of how their own views had changed over time. Several people we spoke to commented that the message they would have wished so send to another family in the first few years after their relative’s injury would be different from what they would say now. 

Common themes in the messages people did feel able to give were focused on the importance of gathering information and being there for the patient, alongside the need to be compassionate to yourself. People also often spoke about the need to try to keep their own lives going and not sideline other important people in their lives (e.g. their children). 
 

Cathy says be gentle with yourself and keep channels of communication open within the family.

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So what advice would you give to other families? What's important for them to know?

God, do you know what I'd really like to do is just be able to give them just like the biggest cuddle ever. It's just such a dreadful thing, isn't it, to think of someone at the start of that. [Sighs] It's very difficult to think of one thing actually, except I suppose I like, I'd really like people to think of ways in which they can be kind to themselves as the, because it's just going to be, like whatever happens, it's just going to be awful, isn't it? So any way that they can think of to try to be kind to themselves during it, and to each other. And to not forget the living people, you know, because I think that can be – that can sometimes be, I think you can sometimes forget the living people.

I said I had an interesting conversation with my mother because I said, because we'd been talking about this so much because I've been writing about it. And I said about how I felt. We didn't talk about it and our conspiracy of silence is that we just don't like distressing each other, so that's why we don't talk about it. And she said, oh, this is so moving, she said that one of the reasons she didn't talk about it is she never wanted me to think that I wasn't enough. [Crying] So she didn't want to like talk about her grief for Matty because she didn’t' want me to feel that…which I think shows that even within very good communicative, communicating families, misunderstandings do really flourish, because I sort of felt I shouldn’t talk about Matthew because I'm always talking about it and it just makes everybody sad, so we're all not talking about it for slightly different reasons.

So yes. So probably what I would say to people, be kind and forgiving of yourself and everyone else. It's not very practical. You can give them practical links and things [laughs].
 

Morag says it is important to listen to people with relevant experience. She also has a message for other young people confronting what she had to face as a teenager.

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You have to be realistic as well, its information isn’t it, you’re making decision based on information which is tried and tested. That’s why I think research like this is excellent because you get to learn from other people. I think that’s the key thing. When you find another family going through the same thing it’s really important that you keep in touch – because nobody else understands.

You either get people who you thought were friends suddenly the phone calls and visits get fewer and few really classed as friends, who become, you know, your saviours, the people who are there for you, who come and sit on a Sunday afternoon in the hospital to keep you company, who are you know, just kind of there for you. And it’s really interesting to see who you thought were friends aren’t, and the people that you never really thought were friends are the ones that come out of the woodwork, really, to help and support you when you need it. 

What would your message be to another sixteen year old who faced – who’s starting on the journey of facing what you have faced? 

You’ll get through it. You absolutely will get through it. Try and stay strong. Your life will change because you’re no longer the baby of the family. There’s another child in the family now, so you’re no longer the child of the family, so the whole dynamics change, and you know, just try and make the best of your life that you possibly can. And try not to – it’s nobody’s fault, at the end of the day. You know, stop trying to find somebody to blame because it’s nobody’s fault, these things happen and they happen to families everywhere without us knowing about it. I’m sure every single hospital in the whole of the UK, probably the world, have got somebody in PVS or some sort of coma or whatever they call it these days. It’s amazing, isn’t it, advances in medicine and all they come up with is a new name [laughs]. Brilliant. But you will get through it and, like I said, my mum at the time when she’d heard somebody had been six months, you know, broke down and kind of just almost collapsed in a heap, saying “I will never cope,” and then you do. You know, just take every day as it comes and just think that your parents are proud of you and always will be proud of you and, you know, don’t go throwing your life away because something bad’s happened to you. 
Others emphasised the importance of the quality of information about health care and medical issues.
 

Angela says get all the information you can and never give up, stand by for your injured relative.

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Age at interview: 50
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Find out as much as you can about how you can help the person you love. And then don’t stop, don’t give up and persistence is the only thing – education – what’s sad is that an awful lot of people might not have the education to – or the ability – or the resources to source some of the information that we got. And that’s when they kind of need someone to help them. But do persevere with whatever it is, because money is not going to do it unless you’re absolutely loaded and can pay for everything that you need. And just don’t give up on them. Because you might be the only one they have really, underneath it all, you might be the only one to look out for them. And that’s, that’s about the size of it.
 

Mark and Helen talk about the need to gather ‘balanced’ information from different sources.

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This is going to be information for other families in this sort of situation. What would you like them to hear from you about what they’re facing? And how would you like – what sort of information do you want to give them? Or what message would you want to give them about their situation?
 
Oh, that’s a responsibility, isn’t it? [Sighs]…I… it’s trying to keep a balanced view I think. Which sounds – what I’m going to say is don’t believe the first thing everybody tells you. And I don’t mean that in a, you know, you can't trust anybody sense. Because I think everybody is telling you what they’re telling you for the soundest of reasons and with the best of intentions. But in fact, the thing that surprised me right from the get go was that you could have two, you know, well respected consultants in similar fields who could come up with two completely different opinions of, of somebody’s lifespan, their prognosis, their, their – the potential for improvement. Whether it’s worth doing anything or not almost. …And it’s all – if there’s any way you have of getting a second opinion or a second, second perspective on it then, then do it.
 

David and Olivia emphasise the importance of getting specialist advice.

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What would you like to say to people who are in the position you were in five years ago? What do you think would be helpful for them to know?

Olivia: I’d say to ask to speak to a specialist.

David: Hmm.

Olivia: To be able to sit down and have a meeting and to be able to ask questions with somebody who knows about, you know, somebody who is likely to go into a persistent vegetative state after having, you know, what – a stroke in this case, a massive stroke, you know, what are the consequences of that? You know, to say for, you know, a junior-ish doctor to say to us, “She’s going to be severely disabled,” was not helpful at all.

David: Yeah.

Olivia: To us severely disabled doesn’t vegetative state, it means something completely different to what he was thinking and what he possibly knew.

David: Yeah, like you say, early on to have a proper communication and make sure you get it as well. Don't take no for an answer or second best, you want the best immediately really. And that can't always happen in the world we live in, but you’ve got to, you know, strive for the best I think. To get the best for that person that you’ve got left. And for the people that are around you as well, you know, for the family. Just to get through it [laughs] somehow, you know.

Olivia: We were never offered any formal counselling or support or anything like that. And, you know, we’re lucky in that we’ve got a close knit family and we all get on and we all supported each other. 
Many families talked about the importance of combining survival strategies day-to-day, and coping with each day as it comes, with also being clear sighted about possible futures.
 

Fern says realise that the future may not be what you hope for, and don’t assume your family will be the miracle. She also says she does not think ‘myself back then’ would listen to what she now knows.

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But I don’t think – I still don’t think it would be heard. I think – I think if we went to those families now and said, “This is what happened to us,” they wouldn’t stop fighting. Do you know, they wouldn’t, I don’t think the families would make that choice. I think the medical teams could, but I think the families they can’t and who would expect them to in that situation. 

You – they are not in a place where they will ever – they will always be the one family that’s different and who can take that away from them, because I’ve not found a family yet that’s seen otherwise. Do you know, we all think we’re the one family that’s going to change the world. That our story’s going to change neurology forever and we’re not and I think it’s almost – whilst I think it’s really important that families have an input, I almost think it’s a dangerous input that they have because they are not in an emotional state to appreciate where this journey’s about to go. And I think that we have a lot of intervention, which is amazing and it does give some people the chance to go home to their families. But you often see when it’s going that way and when it’s not. And we were told that it wasn’t, and of course, we believed we were the family that’s different, because we all do. 

But I don’t think if we – even worthy information that we have now, even with the experience I have now in my own situation I think if – if future me went back to myself and said, “No, this is what’s going to happen, don’t do it.” That person there, my old self would say, “I’m not hearing it, I don’t believe it.” I don’t think any family will ever hear what we have to say because it is the human condition to instate desperation to have hope rather than despair and who can blame them. 
 

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.

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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.
Many families felt they had not looked after themselves in the situation – and a key message to other families was to take care of themselves and each other in this desperate situation.

Last reviewed December 2017.
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