Family Experiences of Vegetative and Minimally Conscious States

Impact on children and young people

We did not film any children or teenagers for this research. 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 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.
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. 
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Morag, whose father collapsed on her 16th birthday talked about its influence on her.
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’.

[See picture below]
 

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