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….”
Mikaela, too, says that her daughter is fairly relaxed around her grandfather who has been in a vegetative state since she was small.
Her daughter has grown used to visiting her grandfather in a vegetative state, and Mikaela hopes she understands that ‘he is still a person’.
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.
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.
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.”
In some ways she lost both her parents the day her father collapsed – but Morag learned to be very independent.
She never felt she came from a single parent family, and wishes her father were there to be a granddad to her own child.
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’.
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].
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.