Family Experiences of Vegetative and Minimally Conscious States
Grief, mourning and being ‘in limbo’
People we interviewed often said they felt their grief remained raw and that they were unable to grieve the person they had ‘lost’ to the brain injury. They found it difficult to recall any happy memories of the person, or to move on and mourn as you might after a death.
I don't think you'll ever get over it for as long as they're alive. You don't – you'll never because you have to go and see them. You have to – you have to see them. You want to see them. 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.
So how would it have been different for you if he had died with a morphine drip in the early weeks?
I could have let go then. 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. 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'm guilty that I'm even thinking these things. But I know what he wanted and I knew my father and I knew that this isn't what he would have wanted.
So I think when you're – because you feel different now because it's a reminder. You're going up to see them. You see them there. When you're there you don't even know if they can hear you. 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. 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. It's so awkward. It's really awkward. 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. 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 with this it's like he has died and you have to still go back and forth and see him.
What to feel? I mean, we’re just living life. What to feel about it? It seems like he is – he is not my dad. My dad’s memory is gone. It was the last day I talked with him, that is it. It’s just someone lying there. 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. He is just – I mean, I’ll be going back home and if he is still alive I’ll be struggling to recognise him.
So your dad died?
Yeah, he is gone. It’s just someone we have to look after or whatever it is, it’s just that. For me, I – it’s gone. Because I left and obviously I was not expecting him to be surviving. 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. But—
What will change when he actually dies? I mean, there will be a funeral presumably?
My dad, one of his friends, he died in a second when he was praying. And my dad told us so many times, “This is the death I want.” And my mum cannot come into – I mean, with everybody, with nature, with God, my mum is quarrelling with everybody, why he needs to suffer like that. And obviously in religion there are lots of things, and we all say to ourselves, to my mum that everybody needs to suffer, even the best of the people in our religion, our prophet had to suffer, because suffering is a way of cleansing. So this is how people get cleansed. Dad will have wonderful life once he is not here. And we do believe all these things in a religious perspective. But then the why will always be there. And obviously it’s for everybody, nobody will say that “I want to have a death full of suffering, I want to have a death in life support”. These are all practical things. The ideal thing, everybody thinks that “I’ll be dying like that” (clicks fingers) “in a minute!” “I will have my family sitting…” You know, these are all ideal things.
And I just want to remember him as he was, not this thing [crying]. I’m sorry. But this thing he became and I wanted to remember him laughing, joking, running and walking. Now, when he dies, there’s going to be two sides of [son’s name], isn’t there? You’re not… you can’t still bury the old [son’s name] because he’s supposed to be in this body that you—and the worse thing is he remembers.
I haven’t buried him yet, he’s not buried, he’s still alive in my head. The day I bury this body, this new [son’s name] body, that’s the day I bury, I realise I, although in my head I say, [son’s name] is dead, he’s not dead his body’s still here. That’s the day then I will have to amalgamate the two together. But at the moment, the only way I can survive is, don’t forget, never forget.
For us to have gone through all that… but if I’d known now - even with what he’s doing now - (you haven’t seen pictures of him), I wish I’d turned that… I wish he’d died. Because he’s got no dignity, there’s no dignity, they take over, they decide what to do with him and they then, the money runs out and that’s it, then they don’t want to spend any more, and that’s exactly where [son] is now. And if you don’t keep pushing and pushing and pushing… like this, the speech therapist is doing what they can best. They keep changing it, one minute do this, for ‘yes’, do that for ‘no’s. You know. I don’t need that anymore. I just look in his eyes, he talks to me, he’ll raise his eyebrows when it’s a yes and if he’s angry he’ll, he just knits his eyebrow. He’s so… in a way you know, you’ve learnt, because you’ve had to, I’ve lived with… you’ve had to learn this new… that’s why I call him my new [son’s name].
But if you want the honest answer, and I don’t care, I don’t care if people condemn me for saying this, I wish he’d died when he was seventeen. Because… it’s not because I didn’t love him, but because of the uphill struggle he’s had to fight and we’re still fighting and the pain that’s caused, not, not just the immediate family, but his friends. They can’t even come to see him anymore. Because they’ve got new lives, they’re married, they’ve got kids.
All I’m saying is please – don’t feel guilty about it because you need that time out. You need time out because you’re fighting between, I’m fighting between, the [son] that I want to remember and the [son] that I see now. And I still remember him [sobs] but not as much, not as much. I see [son] and I remember the… I don’t want to remember him as he is now. I want to remember him as he was. And they took that away from me.
Ann recalls feeling it was the right time for her daughter to die after she had been in a coma-like state for some time. Ann had said her goodbyes and “it was days going into weeks and months... and I was thinking ‘Yes, I would like it to end now because I really want to remember her’.” She added: “now I don’t know if I ever will remember her as she was.”
People often talked about feeling trapped in limbo and being fearful of the future.
You’re in pain all the time you see. There’s not a minute you’re not. Because it’s happened. You can't unbreak your heart, you know. If you lose love through, you know, romantic love through somebody walking away from you or somebody dying, maybe a new love can help mend your heart. But in this case, you see, I’m still in love with him, and there’s no new love for me. [Cries] I just want him, he’s the only one I want. But I can't have him. It’s [sighs] – I started to see a counsellor because I was having a really hard time – at the time I just felt like afraid all the time and it’s not something I am, I’m not a coward. And to be in fear all the time when I was afraid of nothing, except losing him.
I had no problem the last two years fighting for him because he’s worth it, he really is worth it. But I don’t know if it would have been better if he had died on that day. I can't say, I can't say.
How would it have been different?
Well, I guess by now I would have mourned him. Or at least done some mourning. But I’m – it’s kind of what’s called unresolved grief or – I think we were talking about that before. [Sighs] I don’t know. I can't imagine it, you see, I can't imagine.
But – so going – so I had thought that that would have led to me having the next level of my – stage of my grief, but it hasn’t come yet. It tends to come when I’m on my own usually. And it’s been near, but there have been enough things going on I think that have stopped it coming through. And I can't predict it, I can't bring it on. And something stops me doing it with other people, strangely, I don’t really know why. So the, the first was – the first time I did it was the night that the haemorrhage happened. And then the next part was the day that we went to look at [London Specialist Centre] before he went, because then you’re getting a clear glimpse of what life’s really like. Because in hospital you don’t see it really.
And then… the – I thought I’d been – there’s been another one and I’m trying to think what caused it. …I’ll see if that comes back to me, I can't think what the third thing was. And this is like the proper sobbing, uncontrollably grieving. I’ve – there’s definitely been three. And I thought I would sob when I got to [UK care home], because that was the next thing and knowing that that would likely be long term. But I actually locked my keys in my boot as I was loading his meds in. So the ambulance left with [name] to [UK care home], I was stuck there for a couple of hours and that – all of that just kind of meant that by the time I got there they’d set his room up lovely and unpacked everything. I was so grateful I didn’t have that emotion. So it’s actually quite a long time since I’ve had a real sob. But I can feel – I’ve had quite bad cries but it’s not the same. And I don’t know now what the trigger will be that will cause the next thing.
But the hardest thing about this is that you – you’re grieving for someone that you’ve lost but you’ve kind of still got them, you sort of hope that you’re going to get a bit more of them but you don’t know what, when, how or if , and so you’re kind of just fucked really [laughs], you’re in a hideous limbo. Which is emotionally exhausting and stressful, but you want to be part of it, you want to help and love and support and try and make their day as least bad as it can be. And you, you’re just sort of stuck in that now. We worked hard and saved hard, so very luckily I was able to stop work when I tried to go back but couldn’t, it was too – it felt too irrelevant to what life was – what life meant. So I’ve kind of put that on a pause so I can go in every day.
Academic psychological and medical literature has documented the type of feelings families discuss here. The literature describes such feelings as ‘prolonged grief disorder’ as if it is a psychological problem within the individual. The overlapping accounts family members give here, however, suggest their responses should perhaps not be seen as a ‘disorder’, but as an entirely normal reaction to a very abnormal situation.
Last reviewed December 2017.
Mikaela says visiting her father is ‘like he has died and you have to still go back and forth and see him’.
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So how would it have been different for you if he had died with a morphine drip in the early weeks?
I could have let go then. 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. 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'm guilty that I'm even thinking these things. But I know what he wanted and I knew my father and I knew that this isn't what he would have wanted.
So I think when you're – because you feel different now because it's a reminder. You're going up to see them. You see them there. When you're there you don't even know if they can hear you. 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. 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. It's so awkward. It's really awkward. 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. 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 with this it's like he has died and you have to still go back and forth and see him.
Rifat would like to be able to go to her father’s grave and pray – she feels her dad is already dead and wishes he had had the death he wanted.
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So your dad died?
Yeah, he is gone. It’s just someone we have to look after or whatever it is, it’s just that. For me, I – it’s gone. Because I left and obviously I was not expecting him to be surviving. 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. But—
What will change when he actually dies? I mean, there will be a funeral presumably?
My dad, one of his friends, he died in a second when he was praying. And my dad told us so many times, “This is the death I want.” And my mum cannot come into – I mean, with everybody, with nature, with God, my mum is quarrelling with everybody, why he needs to suffer like that. And obviously in religion there are lots of things, and we all say to ourselves, to my mum that everybody needs to suffer, even the best of the people in our religion, our prophet had to suffer, because suffering is a way of cleansing. So this is how people get cleansed. Dad will have wonderful life once he is not here. And we do believe all these things in a religious perspective. But then the why will always be there. And obviously it’s for everybody, nobody will say that “I want to have a death full of suffering, I want to have a death in life support”. These are all practical things. The ideal thing, everybody thinks that “I’ll be dying like that” (clicks fingers) “in a minute!” “I will have my family sitting…” You know, these are all ideal things.
Verity feels very traumatised by what happened and devastated by losing her son, but being unable to grieve for him. She wants to be able to remember him as he was.
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I haven’t buried him yet, he’s not buried, he’s still alive in my head. The day I bury this body, this new [son’s name] body, that’s the day I bury, I realise I, although in my head I say, [son’s name] is dead, he’s not dead his body’s still here. That’s the day then I will have to amalgamate the two together. But at the moment, the only way I can survive is, don’t forget, never forget.
For us to have gone through all that… but if I’d known now - even with what he’s doing now - (you haven’t seen pictures of him), I wish I’d turned that… I wish he’d died. Because he’s got no dignity, there’s no dignity, they take over, they decide what to do with him and they then, the money runs out and that’s it, then they don’t want to spend any more, and that’s exactly where [son] is now. And if you don’t keep pushing and pushing and pushing… like this, the speech therapist is doing what they can best. They keep changing it, one minute do this, for ‘yes’, do that for ‘no’s. You know. I don’t need that anymore. I just look in his eyes, he talks to me, he’ll raise his eyebrows when it’s a yes and if he’s angry he’ll, he just knits his eyebrow. He’s so… in a way you know, you’ve learnt, because you’ve had to, I’ve lived with… you’ve had to learn this new… that’s why I call him my new [son’s name].
But if you want the honest answer, and I don’t care, I don’t care if people condemn me for saying this, I wish he’d died when he was seventeen. Because… it’s not because I didn’t love him, but because of the uphill struggle he’s had to fight and we’re still fighting and the pain that’s caused, not, not just the immediate family, but his friends. They can’t even come to see him anymore. Because they’ve got new lives, they’re married, they’ve got kids.
All I’m saying is please – don’t feel guilty about it because you need that time out. You need time out because you’re fighting between, I’m fighting between, the [son] that I want to remember and the [son] that I see now. And I still remember him [sobs] but not as much, not as much. I see [son] and I remember the… I don’t want to remember him as he is now. I want to remember him as he was. And they took that away from me.
People often talked about feeling trapped in limbo and being fearful of the future.
Angela finds she lives in constant fear of her husband finally dying. She doesn’t know if it would have been better if her husband had died the day he sustained his injury. She says his current state has left her with unresolved grief.
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Age at interview: 50
Sex: Female
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I had no problem the last two years fighting for him because he’s worth it, he really is worth it. But I don’t know if it would have been better if he had died on that day. I can't say, I can't say.
How would it have been different?
Well, I guess by now I would have mourned him. Or at least done some mourning. But I’m – it’s kind of what’s called unresolved grief or – I think we were talking about that before. [Sighs] I don’t know. I can't imagine it, you see, I can't imagine.
‘A hideous limbo’ is how Phil describes his situation, and he feels that he has been unable to fully grieve for his partner since the brain haemorrhage.
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Age at interview: 43
Sex: Male
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And then… the – I thought I’d been – there’s been another one and I’m trying to think what caused it. …I’ll see if that comes back to me, I can't think what the third thing was. And this is like the proper sobbing, uncontrollably grieving. I’ve – there’s definitely been three. And I thought I would sob when I got to [UK care home], because that was the next thing and knowing that that would likely be long term. But I actually locked my keys in my boot as I was loading his meds in. So the ambulance left with [name] to [UK care home], I was stuck there for a couple of hours and that – all of that just kind of meant that by the time I got there they’d set his room up lovely and unpacked everything. I was so grateful I didn’t have that emotion. So it’s actually quite a long time since I’ve had a real sob. But I can feel – I’ve had quite bad cries but it’s not the same. And I don’t know now what the trigger will be that will cause the next thing.
But the hardest thing about this is that you – you’re grieving for someone that you’ve lost but you’ve kind of still got them, you sort of hope that you’re going to get a bit more of them but you don’t know what, when, how or if , and so you’re kind of just fucked really [laughs], you’re in a hideous limbo. Which is emotionally exhausting and stressful, but you want to be part of it, you want to help and love and support and try and make their day as least bad as it can be. And you, you’re just sort of stuck in that now. We worked hard and saved hard, so very luckily I was able to stop work when I tried to go back but couldn’t, it was too – it felt too irrelevant to what life was – what life meant. So I’ve kind of put that on a pause so I can go in every day.
Last reviewed December 2017.
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