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Family Experiences of Vegetative and Minimally Conscious States

Friends and visiting the patient

Sometimes it is friends, rather than family, who may have the closest relationship with the patient, and know them best. If this is the case then it is important that friends are involved not only in visiting the patient, but also in contributing to best interests meetings. If you are a friend who has this role in someone’s life, you will find it useful to look at the section on ‘On-going Decisions’. Although we use the term ‘family’ throughout this section we do not mean just biological family or someone with a formal family relationship with the patient (such as a spouse) – if you are very close to the patient then please read the term ‘family’ as meaning you.

Visiting the patient is another important thing that friends can do. However, friends, just like any family member, can find visiting someone in a vegetative or minimally conscious state very challenging (See ‘the Impact of visiting’) – they do not know how to be around the patient, or what to say, and find it very distressing to see them.

The role of friends in visiting the patient (or not) was sometimes a source of conflict for those we interviewed - especially after the situation had gone on for a long time 

Kate feels their old family friends find it hard to understand, but feels very supported by a friend who goes in to the care home once a month to cut her husband’s hair:
 
“Yeah, they don’t really know, they’ll say ‘how is Keith?’ and I’ve explained about vegetative states and that kind of thing but I don’t know if they really know what it means. My other close friend goes to see Keith once a month and cuts his hair for him, so she knows what he’s like. Keith’s friends I think should really hang their heads in shame, really do. That’s a sore point. I think a couple of them have been to see him once or twice. One of them said, you know, ‘it’s so hard’. I just lose my temper when them really and say ‘it’s not about you, it’s about doing something for Keith, and if you can’t bring yourself to do that...’ …So yeah, his friends have let him down I think”.

It often seemed as if individual friends drifted away – whereas groups of friends sometimes found effective ways of offering on-going support. One man felt very supported by the fact that members of his wife’s choir took turns to sit with her for a couple of hours on a Thursday night. Another was delighted by regular visits from members of his son’s football team - the young men came in pairs to visit his minimally conscious son, creating a playful atmosphere and joking with one another in front of him – conveying a sense of normality. Such on-going support was very much valued.

Sometimes family members felt that friends had visited when it was ‘exciting’ and they wanted to try ways of ‘waking up’ the person, but then drifted away when the situation dragged on.

‘Everyone thinks there is a magic answer – and they want to be the magician. One of his friends bought in an electronic key-board determined that would be the way of communicating with him, another tried with a guitar – but after a couple of attempts gave up. They don’t visit anymore. Who wants to visit someone like this? Who wants the hard grind of what ever rehabilitation means in this situation?’

Although some people felt their relative had now been ‘abandoned’ by their old friends, others did not think their relative would want anyone outside the family to see them in their current condition, so discouraged visitors. They were also sometimes upset by the sort of things friends would say after visiting the patient.
 

Nik feels unsure whether her father would want friends to see him in his current state.

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Nik feels unsure whether her father would want friends to see him in his current state.

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I always say – well, if it's something that I think he would, then yes, I would say, "Yes." But I can't help but think that would he want to be seen like that because I knew what he was like before. Not that he judged other people, not that he would ever. He was so, you know, so not that person, but just for him, he's quite a – he was quite a proud man. And would he want people that he knew before, because I'm the only person that goes up there now and his two sisters when they come down, which isn't very often, would – would he want his friends to go, "Oh my god, look at [name] now. Look what he's like now." Because I – because I know him – knew – knew him, you know I— 

How does he look now?

Not – nothing – not like my father. He looks completely different. His head is a different shape. His eyes are not there. His face is different. His skin is oily. His – he's not – not the same at all. Not the same at all. Completely different. 

 

Imogen did not want anyone outside the immediate family to see her husband after his accident and felt they did not understand.

Imogen did not want anyone outside the immediate family to see her husband after his accident and felt they did not understand.

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My feeling was, I didn’t – there were lots of people I didn’t encourage to come and see him, it was only close friends. I didn’t want any of his colleagues or anyone to see him. I felt I was almost like protecting the image of him as he'd been, rather than inviting people to see. I mean, as you said, as many people must have said, people used to ring me up all the time, every day, saying, “How is he? How is he?” And I'd say- you know, “Is he getting better?” And I'd say, “No, he's the same”. And they'd say, “Oh well, at least he's the same, that's hopeful”. And I'd be thinking, “Oh, little do you know”. I mean, it was like you were living a double life, like it was all a lie in a way. Because I couldn’t say to people it’- I didn’t say to them, “it's dreadful”. I just took on the role of “It's as it is”. And it let everybody think what they wanted to think about the word coma.

One of the friends who I wouldn’t let him see him for yea- for months and months and months kept nagging me and nagging me, saying, “I really would like to see him”. And when he eventually did come in to see him, he was almost physically sick. He just gagged and really- Suddenly the realisation hit him. I think as long as he just heard the word coma, as many people, you hear the word coma, then you don’t realise. 

So then one friend came in and said, “Oh, I can see he's there, Michael's there, Michael's definitely there”. And then your heart kind of sinks and you think, if he's there then it's a most horrible thing for him to be, if he’s- I'd rather he wasn’t there, given that this is what it is. 

I know what [daughter] said as well. She said, “You go to a party and you just want…” And it's what I said. You go out and you want to forget, and people keep coming up saying, “How's your dad? How's your…” and then you feel a bit like you're a leper. You're- that everyone is feeling sorry for you. And you don’t want them to. You just want to go out and have a good time, but you can't, because you can't. Other people don’t let you, do they? Their own need to express their concern brings you down.
It can be very difficult to find a way of continuing to be in someone’s life if they are totally (or mainly) unresponsive, and difficult to know what to say to that person’s family. Friends can, however, play a key role - and, if the person does regain some consciousness, on-going friendships may be very important to them.

Last reviewed December 2017.
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