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Family Experiences of Vegetative and Minimally Conscious States

Impact on children and young people

We have not used film of any children or teenagers for this resource. However, some of the young adults we spoke to reflected on what it had been like growing up with a member of their family in a vegetative or minimally conscious state. Parents and grandparents also spoke to us about how their children and grandchildren reacted to having a brother, sister or mother in such a condition. Rhiannon describes how her granddaughter, Janey behaves:

“She's six now. She's a little monkey, she is. She gets into bed with her [mother, in a vegetative state] and she sings ‘My Beautiful Mummy’ and ... you know. Janey has got no inhibitions– and I think she'll grow up a nicer person for it. Because there is no taboo with it for her. She sees everybody as ... you know. And she understands more, like I let her feed Amy, putting the feeding tubes on…. She used to get frightened when Amy had her trachy in, but bearing in mind she was only two years old….” 

Nik, too, says that her daughter is fairly relaxed around her grandfather who has been in a vegetative state since she was small.

 
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Her daughter has grown used to visiting her grandfather in a vegetative state, and Nik hopes she understands that ‘he is still a person’.

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Do you think your daughter will grow up – I mean it's very interesting what your daughter must be seeing and responding to. Do you think she'll grow up with different attitudes towards—?

I hope she does.

What would you hope for there?

Just that she's more aware, more aware of people and their feelings in – in this kind of thing. I so think with her falling, oh my god, and she plays on the stairs with my niece. I'm like, "Get off the stairs." [Laughs]. And she says then, "Oh my grand – my grandpa hit his head, see. He's in hospital." So no, but yeah, like when I first started taking her up there, I still think now when I – when I take her up there, they look at me as if, "Oh god, she's bringing her up here." But I think it's important that she's there. I do. He was there before. He hasn't died. He's still there now. And I think it's important that she knows that this – this – you know, this happens to people and it's happened to us and we still care and we still see him. He's still a person. We still bring him Christmas cards. We still bring him birthday cards. I think it's really important that she knows that. But, on the other hand, I can understand people who don't, because it's upsetting. It's really upsetting. And some children might be frightened by it. She probably is sometimes. 

Older children could seem to be less accepting, and more disturbed by what they witnessed. Emma’s teenagers questioned her about why ‘granny’ was being kept alive in a vegetative state, and teenagers in other families could be quite challenging on this subject. Parents also told us about teenage children who developed problems such as obsessive washing of hands, eating disorders, panic attacks and depression which they thought were connected with the situation. (Such issues could also affect other adults in the family – including the parents themselves).

Some parents or grandparents were also challenged by other members of the family about their intense focus on the injured relative at the expense of time, energy and caring provided to other members of the family, or at the expense of their own health. 

Those who had grown up in a family with a severely brain injured individual emphasised their huge respect for the love and courage displayed by their parent or grandparent. At the same time they described the impact on them. 
 

Cathy has been left feeling guilty for ‘trying to have a life’ herself.

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I spent ages thinking – years thinking that it would have been better if it was me. I somehow managed to – I don't know how I got this, something to do – something somebody said on the night of the accident, miracle mindsetting again, somebody said something about how the only reason he’d survived was because he was so fit and strong. And which he was, you know, he was a fine physical specimen, all – did all sorts of sport, you know. 

And from that I managed to extrapolate the idea that if I had the same accident, if the accident happened to me, I wouldn’t have survived because I wasn’t as fit and strong. Because I smoked and didn’t play football every weekend. Which – I mean, I don't know now, but that to me, at a distance, that sounds like a bit bonkers to me, that surely in kind of percentage terms I wasn’t very much less fit than him at all. But somehow I managed to get this idea that if it had happened to me, I wouldn’t have survived at all, so therefore it would have been much better if it had happened to me. But I also felt that if it had happened to me, I just felt Matthew would have been much more robust at being able to cope with it. I feel guilty at trying to have a life at all, but I also can see that it would have been much better if I’d been better at having a life of my own [sobs]. Which I think is what he’d have done. I think he would have been much quicker to say, “Come on, mum and dad, you know, we all loved her but this is fucking mental.”
Morag, whose father collapsed on her 16th birthday talked about its influence on her.
 

In some ways she lost both her parents the day her father collapsed – but Morag learned to be very independent.

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Absolutely, it just – yeah, absolutely, everything just changed like that because my mum and my dad, I lost both my parents the same day because my mum then went into the hospital. And because there was this uncertainty of, you know, he might just stop breathing at any second, you don’t want to leave somebody in a room by themselves. And you know, if they woke up and there was nobody there, so my mum was there constantly and I bought my first car while I was sixteen. I went half shares with my sister and we – because, you know, my independence was so important to me because, you know, we’d go down to the hospital in the morning, then we’d go to school and then the school bus would drop us back off at the hospital and we’d eat tea in the hospital canteen; and then we would do revision in the hospital day room and we would sit there ‘til eleven o’clock at night and then we’d go home and we’d sleep. And we’d get up and wash and go to the hospital, go to school and, you know, we – and on weekends, we’d spend all day every day there. And that was life, really. 
 

She never felt she came from a single parent family, and wishes her father were there to be a granddad to her own child.

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I think that’s the main thing, is showing them that they’re still a part of your life. You know, that’s the key and that’s – you know, that’s why, you know, he would have been in the family photos for my cousin’s wedding, so he was in the family photos. You know, he couldn’t come to us, so we went to him in our hideous big poof shouldered green dresses. 

Oh. They weren’t your choice, I take it? 

At the time, they were fine, but we’re talking, you know, over 20 years ago. 

Things date, don’t they? 

They do. But it was not even – yeah, I got my GCSE results, the first place I went, straight to the hospital, from the school straight to the hospital. You know, for anybody, any sort of youngsters going through the same thing with a parent, I think the one thing that I found tough is that my grades, academic grades don’t reflect my ability because, you know, I did my GCSEs, sat in a communal hospital day room, did all my revision, living in the hospital, and there’s only so much you can take in. 

And I remember my cousin got married and we were bridesmaids and we went between the church and the reception, we went to the hospital and we left our bouquets in the hospital and had photos taken with him. You know, so he was still part of what was going on, but on the other hand, our lives stopped for nearly a decade, particularly my mum’s. You know, my mum did not have a life for ten years, basically. He was her life for ten years, you know, and it’s weird. It’s really weird and I can’t explain it. I’ve never ever felt like a single parent family, even though I’ve spent more than half my life without my dad in it, never felt like a single parent family, ever, ever, ever.
 

Morag is determined not to be a ‘victim’.

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I’ve cried for so many years of my life, but not – you know, my husband says that, you know, the one thing – the worst thing anybody in the world could call me is a victim, you know, ‘cause I believe that experiences in life, you have to just use them to make you stronger, you know, ‘cause otherwise you just sit there and it ruins the rest of your life, you know; and that would just devastate. The person’s lying there, your family wants the best for you, you know, and for you to let this situation just ruin your life. And for course it does ruin your life in one way but on the other hand, you can hit the self-destruct button and start to feel sorry for yourself and keep going why me? And why us and why is just such a pointless question to ask because, you know, there’s no answer why, you know. The only question, I think, is how would you deal with it. You know, and there’s no lessons in dealing with it either.

You just kind of don’t like putting anybody else out. You just kind of roll your sleeves up and get on with it, which has, you know – when you’re so young, it has such an impact on the rest of your life. It has an impact on, you know, your career, your life choices, your relationships, your attitude to money, all these things which you might not think are relevant, they’re absolutely pivotal to what happened, you know, and I know that one of my biggest flaws is that I’m too independent, I’m really bad with money. But I also know exactly where it comes from, so I should really do something about it [laughs].
Parents and grandparents often feel very torn. It can be almost impossible to balance the care given to an injured person against that provided to others. Those whose partners had been injured sometimes felt catapulted into being suddenly simultaneously a carer for their partner and caring for children as single parents.

We asked people we interviewed to write a message on a postcard to a person of their choice. One chose to write a message to the rest of the family. It sums up her feelings about balancing her different roles as a mother and grandmother now she is caring for her severely brain injured daughter. She apologises for not being there for the rest of the family but ‘your sister needs me … I have to be her eyes and her voice’.


 



Last reviewed December 2017.
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