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 (and only family members volunteered to speak to us) 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, health care professionals and strangers.
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.
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. 
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.
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.

Feedback

Please use the form below to tell us what you think of the site. We’d love to hear about how we’ve helped you, how we could improve or if you have found something that’s broken on the site.

Make a Donation to healthtalk.org





Find out more about how you can help us.

Send to a friend

Simply fill out this form and we'll send them an email