What will change when he actually dies? I mean, there will be a funeral presumably? So for me, I mean, if I go back I’ll be seeing – in one way it’s a good thing that still he’s here, still we can see our dad, so that is something that people want to cling to. Because I left and obviously I was not expecting him to be surviving.

It’s just someone we have to look after or whatever it is, it’s just that. He is just – I mean, I’ll be going back home and if he is still alive I’ll be struggling to recognise him.

Day by day you cannot even recognise, he used to be a really unhealthy man, the reason why he had this stroke because his weight never got lower, but now a little person, he is not my dad. It was the last day I talked with him, that is it. What to feel about it? It seems like he is – he is not my dad. What to feel? I mean, we’re just living life. But with this it's like he has died and you have to still go back and forth and see him. It's just prolonged and with – when somebody dies, when somebody dies you can just remember the good times and put it to rest and come to terms with it slowly. But – and I know that he'd probably want to hear what I've been doing but I just feel bad saying it because he's not there to do it with me any more so you don't – you don't know what to say or do. Oh, I'm going here or I've been here.' Or – you don't like saying those things to him because he can't – he can't come or he can't – I can't take him. And if they can hear you don't know what to say to them because I don't want to be saying to him, 'Oh, I'm going on holiday next week. When you're there you don't even know if they can hear you. So I think when you're – because you feel different now because it's a reminder. But I know what he wanted and I knew my father and I knew that this isn't what he would have wanted. I'm guilty that I'm even thinking these things. And now it's, – I should – you know, I should be grateful that he's alive, and that's the way I think sometimes. I could have let go and just got on with remembering the happy times and – and just leaving it – oh, not just forget about it, but moving forward then. So how would it have been different for you if he had died with a morphine drip in the early weeks? So you're reminded of it then every time you go back to see them so you don't – you don't get over it. You don't – you'll never because you have to go and see them. I don't think you'll ever get over it for as long as they're alive. Minimally Conscious or unconfirmed Vegetative diagnosisįamily Experiences of Vegetative and Minimally Conscious States Grief, mourning and being ‘in limbo’.Confirmed Permanent Vegetative diagnosis.Messages for healthcare professionals, service providers & policy makers.Family experiences of applying to court for treatment withdrawal.Applying to the court for withdrawal of artificial nutrition and hydration.Decision-making: the legal situation and clinical practice.Experiences on the hospital ward after ICU.Treatment decisions in the Intensive Care Unit.Taking in information and imagining outcomes.What is a ‘coma’ and ‘what is a ‘vegetative state'?.Family Experiences of Vegetative and Minimally Conscious States

Being in limbo