Nik

Brief Outline:

In 2007, when he was 42, Nik's father fell down some steps and hit his head. He has been apparently completely unconscious ever since and Nik does not believe he would want to live like this. Some years earlier he had suffered a brain haemorrhage and a stroke, following which he had been left with left-side paralysis and memory difficulties, but able to live independently. Nik and her father were extremely close and after that incident he told Nik that if he had another stroke, and lost the ability to be independent, he would not want to be kept alive.

Background:

Single, mother of one child, care worker.

More about me...

After suffering a brain haemorrhage and stroke in 2000, Nik’s father was very grateful that he recovered sufficiently to be able to live independently. But he told his family and friends that if anything similar happened again such that he lost his independence he would want to be allowed to go. Some years later, on New Year’s Eve December 2007, he fell down some steps and was left in a coma. Within a few weeks of the accident Nik was told that her father was in pain and that he could be given morphine although this might shorten his life. The whole family agreed with this course of action, believing her father would have wanted a peaceful death. However, for some reason, she does not think pain relief was provided, and although he was expected to die, he survived. He is now in long-term care, with a chronic disorder of consciousness, and his life is being prolonged with a tracheotomy and the provision of artificial nutrition and hydration. 

Nik finds visiting her father very painful. She doesn’t see him responding to anything she does or says. Although she hopes that he can hear her voice and know that she is there, Nik believes he is probably completely unaware of everything. She usually takes her daughter (now 9 years old) with her when she visits, and she plays his favourite music. She does not know anyone else with a relative in a vegetative state, and wants to find out whether what she feels is normal. She doesn’t understand why her father is being kept alive against his previously stated wishes. He has ‘Do Not Resuscitate’ on his notes; Nik and the whole family agree this is the right thing to do. However, she finds the idea of allowing him to die by withdrawing his feeding tube incomprehensible and ‘crazy’ and could not bear the idea of being responsible for such a decision. She has felt guilty for being unable protect her father from being kept alive against his wishes and feels it’s important that families are not burdened by feeling guilt about decisions that, legally, are not their responsibility.

Nik worries that it might be worse if her father were able to feel, but also hopes he might be able to know when she is with him.

But then if he did blink or he did squeeze my hand, I don't know what I'd feel then because I'd be – I'd probably feel even worse then because, right, he can hear me and he can't get up. He can't talk back to me. So I don't know what's worse. I don't know whether it's worse being – being able to do, you know, like squeeze my hand or blink or – or look up or look down or whether it's just better him being as he is and not being aware of anything. Well I hope – I hope that he's not aware of anything, you know. I don't know what's worse.

So you hope he is completely vegetative?

Part of me does. But it would be lovely to actually sit there and have some kind of communication with him. But then you're left with – you're left there feeling then, right, he can't say what he wants to say and he can't – and he has feelings and he's aware, but he can't express that. Like – like I say, it's a mixed – it's mixed. It's very mixed. You don't know what's – what's better, do you? 

What would you want from him if there was any awareness? What would be the good thing about that for you?

Just being able to have him back a little bit, just a little bit, just to – just to have his – you know, even if it was just, "Yes," or "No," that he could say, but that he could – that he could – that he'd know who I was then. I'd like to know that he still remembers who I am.

I don't know what – I don't know what I'd expect because I'd want it all back. I'd be greedy and I'd want the whole thing back. I wouldn't just want a little bit back. But, no, I don't know. Just – I just hope that he does know who I am when –– if he can hear me. And when I walk in and he can hear me – me talking or hear my daughter talking that he knows who we are, I hope – I hope that there's that at least. 

Seven years on from her father’s injury, Nik asks ‘is it going to get any better?’ and feels she does not have clear answers.

Is this – is this what it's – is this all it's going to go?  Is it going to go any further? Is it going to get any better? 

Have you been given any advice about whether it will get any better at this stage? Have you had meetings with consultants or—?

When he was in hospital, yes, and they – they said that, no, it would – it would probably stay the same. But they – again, but they couldn't say, you know. They don't know much, do they? They – they just say, "Oh, you just see how it goes and maybe he will, maybe he won't." They can't give you a definite, "Yes, he's not. That's it. He's not going to get any better." Or they can't give you a definite, "Yes, in so many months now he might start saying yes or no or—."  They just can't tell you anything. But it's been – it's been six – six – seven years now, sorry, and, he hasn't got any better at all, so this—

And since he left hospital has there been any re-diagnosis or—?

No.

Updated information to you?

No.

So all you're left with is the information you were given when he was in hospital

Yeah.

And have the notes from those who are looking after him, or indeed your own observations, do you see any signs of change?

No, nothing. Nothing.  But they – it –like I say, when I have to sign these six-month assessments – in the home, they – they now call it minimally aware, don't they? They don't like calling it vegetative state. But minimally aware would mean that there's something you – there's a little – that he's a little bit aware. I don't see that. I don't see that at all. So it's – that's confusing a bit. 

Nik says visiting her father is ‘like he has died and you have to still go back and forth and see him’.

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. 

Nik has very happy memories of her father, and can’t imagine him not being able to recognise her now. She dreads going to visit him now, but feels glad once she has been to see him.

[Laughs] it – he was just – he was just proud to have a daughter, yeah. He was just so – so proud. And we told each other everything and we – we didn't have your normal father-daughter relationship. There was things that probably I shouldn't know, probably that I shouldn't tell him and he shouldn't tell me, but we did and that's how we were. That's just how we were. And all my friends used to sort of envy our relationship and think, "Oh, I want a father like yours," and you know, things like that. But yeah, so it was just the two of us. It was – it was – my mother had moved away. He – his sisters had moved away. His mother had passed away. His father had passed away. So it was just us two.

Was that from quite a young age, it was just you two, when you say your mother had moved away?

My – no, my mother moved away the year before. So yeah, so it – even though my father was up to mischief a lot, mind, he wasn't there a lot of the time, but I knew he was there. I knew he was at the end of the phone or – or I'd speak to him or – and I just knew he was there. But yeah, so – so just him knowing who I was now, it would just mean – but I don't – I don't ever imagine him not knowing who I am, if that makes sense. 

That's unimaginable.

Mmm, yeah.

What do the visits mean to you? What does going there feel like and visiting him?

I hate going there, and I feel guilty for feeling like that. I don't even know if that's the – if that's right, how I feel. You don't know what's right or what's wrong, how you feel, but I hate going there. But I feel – I always feel better after I've left there, if that makes sense. It's hard getting me there, but when I'm there, I feel better that I've been to see him and that – just that I've seen him, just – and that maybe he's known that I've been there, you know. Just things like that. But when I go up there, it's – it's hard. I usually take my daughter with me because, like I said to you before, I don't know what to say to him. I don't like saying, "I'm going here, I'm doing this," or – because I just feel like I'm rubbing it in a bit, but – that I can do these things and he can't. So I just tend to sit there, sit in his room with him. My daughter will draw him a picture and me and my daughter will just be talking and we'll – I'll just say, "Show grandpa your picture," or, you know, try and include him in – in the thing. And I think he would just like just hearing me and my daughter being there and being normal. I think that's – that's what he'd like. He likes that anyway. He liked that before, just the normal things. 

And I always kind of put music on for him. He loves his music. I know he can't see, but I buy him loads of comedian DVDs because I think, "Well, if he can hear, then at least he can hear – he can hear them being funny," and maybe have a bit of a laugh in his head. I don't know. Because you don't know what to do. What can you – what can you do? 

Nik works with severely brain injured young people – and enjoys her work - but it is much harder to see her own father in this condition.

Why do you think that is, that it's harder with your own?

Because I – because I know him. Because it – because it's – because I know him. I knew him before. I know him now and it's just hard to come to terms with – with that, whereas the people that I've worked with, I didn't know them before. Not that I don't care. Of course I care. But it – I'm – as a job and I'm going there and I'm doing it the best I can, whereas with my father I know what he was like before and I just can't help but keep thinking that when I'm there, what he was like before and what he would be saying and what he would be talking about and – so then that – that is all that I think about when I'm there rather than thinking, "Right, let's do this," or "What can we do together?" "What can we – where can we go?" Or – I'm dwelling more, not looking forward. 

So I hope that I can get over that, because I – it's only been this year that I've – that I've really spent more time there this year. Talking – I've always gone up to see him, but this year I've gone – spent more time – not this year, last year, 2013 [laughs], I've spent more time there. I've looked into, you know buying more things for him to – if, you know, if he is aware but can't show it that – that can make him a little bit more happier because you don't know what to do. What can you do to make them happy? What can you—?

Nik feels she is not ‘doing enough’ and perhaps she should visit her father every day.

That – just that I – I can't – that I don't feel like I'm doing enough. I know I can't do anything.

And what would you be doing?

I know, but I just don't feel like I'm doing enough… for him. I feel like I should be up there more. I feel like I should be up there every day. I feel like I should be spending more time there. It's just – and I go up there as often as I can. Like maybe that's once a week or maybe once a fortnight. Sometimes I'll have a bad day and think, "Oh, I can't – I can't go up there today," and I feel bad that I haven't gone up there. It – it's just the constant guilt that – I don't know what I – what more I could do, what I could do.

And if somebody came to me in the same situation and said, "Oh, I do this with – with my father or my sister or my whatever," then I'd go, "Oh right," and I'd have ideas then and I'd do them. But it's just like I don't know where – I don't know what I can do. I do –I don't know what to do. And I want to do more. I want to be able to – to feel like I'm doing something, whether that's just taking him out for a walk or whether it's just – well anything. I just want to feel like I'm doing something. 

Yeah, I've had loads of dreams. And I think, "Oh my god, that's his way of coming to me now, in my dreams." Loads of dreams of just like normal stuff. Not – just sitting there having a conversation with him. Loads. And I think, "Well, god, that was so real. That dream was so real," when I wake up, I just want to go back to sleep, go back to your dream.

Do you ever forget for a moment when you wake up that that isn't reality and have to re-remember that—?

Like for half a second, but you think it's true. You think, "Oh," and then you – then you realise, no, it's not. And then you think, "Oh, I'd better go up and see him today," like it's back to normal again [laughs]. Yeah. I should be – I feel like I should appreciate the fact that he's still alive. I feel like I should, but I don't. So then I feel guilty again then. 

Nik feels guilty that her father continues to be kept alive. She wonders ‘is this my fault’ and was interested to learn that it was not her responsibility to make such decisions.

Yeah, the main thing that – there was the – well the biggest thing that's – that was on my mind about this whole thing – has been on my mind about this whole thing since it's happened has been the feeding, the stopping the feeds or not, to continue them or to stop them because that's the only option that you're given to let them die. But obviously I was under the complete wrong impression about that anyway.

In that you—?

- In that the decision isn't really mine anyway, so – so that's – that's new to me [laughs].

But does that mean it's been playing on your mind for a long time, that you thought it was your decision?

Yeah, because it's – yes, yeah, because you – even though it's not for me, I wouldn't – I wouldn't do it, but still it does cross your mind because it's your only way out, you know, that you've – that they don't want to be like that and they didn't want to be like that. And if they said to you before that if they were like that, but to let them go. They didn't specify how, but yeah, so it does – it does cross your mind a lot, even though it's – you can't do it. You do think sometimes, "Oh, should I just do it then?" or, you know, can't help but think it. Can't help it. 

Yeah. And it's – how often has that option been discussed with you?

Only the once, I think, and then when I went to speak to the manager, I think it was a year or two ago about it again, we discussed it then briefly. But no, not –you know, it hasn't been something that's been put on me a lot.

But it does mean that as far as the clinical team are concerned, there's been a conversation. They don't know that you might dream about it or think about it?

Yeah, no, no.

And I think that's another message that's worth – I think clinician's don't understand what this puts families through, and that's one of the things that families often say. "Should I? Shouldn't I? Oh my god, am I – am I keeping him alive like this?"

Yes. Yeah, exactly. Is this my fault? Could this have been solved years ago if I'd have just done it? You do. You do think those things. You do. And they – that – those aren't ever going to go away. …What – what to do? What can you do? Nothing. 

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

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. 

Sometimes friends ask questions of Nik that are unhelpful.

What would your message be to friends and acquaintances who sometimes might get up your nose with things they say? What are the things that people say that can be a bit annoying?

They ask me questions all the time, like, "Oh, can't he do this then? Can't he do this then? Oh, have you tried this? Have you tried that?" "Yes, I've tried that. Yes." And, "No, you can't do that." [Laughs].

What kind of things do they want you to do?

Like the whole squeeze my hand. "Can he squeeze your hand then? Can't he look at you then? Does he know you're there then? Can he hear you? Can he see you? Do you think he knows who you are?" I don't know. I don't know some of those things myself.

Have you tried taking him garlic and waving it under his nose? 

Yes, yes, I've tried the whole photos thing, there's been photos of him held to his face, yes. I've tried it all. No, people don't, – people don't understand, but I don't expect them to understand. Don't get me wrong, you know, I'm not one of these people that gets easily offended, although I – you know, inside you think, "Oh." But, but no, I don't know. Yeah, like I say, there's not a lot of positive things that you can say about this situation. 

Her daughter has grown used to visiting her grandfather in a vegetative state, and Nik hopes she understands that ‘he is still a person’.

Do you think your daughter will grow up – I mean it's very interesting what your daughter must be seeing and responding to. Do you think she'll grow up with different attitudes towards—?

I hope she does.

What would you hope for there?

Just that she's more aware, more aware of people and their feelings in – in this kind of thing. I so think with her falling, oh my god, and she plays on the stairs with my niece. I'm like, "Get off the stairs." [Laughs]. And she says then, "Oh my grand – my grandpa hit his head, see. He's in hospital." So no, but yeah, like when I first started taking her up there, I still think now when I – when I take her up there, they look at me as if, "Oh god, she's bringing her up here." But I think it's important that she's there. I do. He was there before. He hasn't died. He's still there now. And I think it's important that she knows that this – this – you know, this happens to people and it's happened to us and we still care and we still see him. He's still a person. We still bring him Christmas cards. We still bring him birthday cards. I think it's really important that she knows that. But, on the other hand, I can understand people who don't, because it's upsetting. It's really upsetting. And some children might be frightened by it. She probably is sometimes. 

After an earlier injury, Nik’s father had told her not to keep him alive if he lost his independence. But when he was injured again, and unable to make his own decisions, she discovered it was not as simple as ‘letting him go’.

So can I pick up on a couple of things you said? So the one was about his prior expressed wishes. He'd already experienced a stroke and a brain haemorrhage.

Yeah. Yeah.

How far – how much – how long ago?

He had that in the year 2000. And this was 2007 that this happened, going into 2008.

So in 2000 he'd had that. And when he – and he recovered pretty quickly and pretty well.

He took about a year. He was in and out of hospital for a year and he was paralysed on his left side. So he learnt to walk and – again. But he got about and he was very independent and he managed – he made sure that he could do everything without having to ask any help for anything. So after that he was grateful that he could still get about. And then he said, ‘Oh, right, if I – if anything happens to me again and I can't, then just sort of – yeah, let me go, kind of thing.’ But, and I can't, you can't – you can't just say. 

And even afterwards his friends were – were coming up to me in town and saying, 
"You know – you know what his wishes are. You know he said after the last time." You know, "Why are you doing it?" So it's like I can't. I can't. You're not – you're not given that – you're – you're not given that sort of choice. It's not up to you. You can't just say, "Yeah, just – just let him go now," because you can't. It's not legal. It's not – if I could, I would. But I can't. 

Nik’s father had discussed his views with her, and she said it was relatively ‘easy’ to accept the DNAR notice.

That was when he first went into the care home, just that if it ever came to it, you know, where something happened that, would I want him to be resuscitated, to be – you know, to be brought back or – well, no, that – that was quite, – that was quite an easy question not to bring him – if he was ever and they had the chance to, I know it's awful to – to go, I wouldn't want to bring him back to that again. So that was an easy question really, and the – the whole family agreed with that. 

I know there's probably people that feel differently because they can't deal with letting them – their loved ones go. But for me, because I knew how he was – his views on this kind of thing before were so strong after his stroke that he didn't want to be alive if he couldn't do things for himself. So I – but there's other people in different positions and their family members would have said different. So you can understand both. 

Yeah, but you can only speak for your father.

Yeah, yeah. So that was easy for me.

Nik suggests that policy makers should see for themselves what patients and families are going through.

It doesn't. I don't know. I don't understand it. I don't understand it. And before this happened to him, I never thought about it. I didn't even know that you could – you could be like that and still alive. I didn't – I didn't even know that. So why – why would you want to make that even longer? Why? Doesn't make sense to me and it makes me – it just makes me mad that people are – if they came, if these individual people came, the people that made this decision came and saw these people in their situation like this, I'm sure that they'd – they'd be thinking differently about it. This doesn't make sense. 

So as a message, what would your message be to the law, to judges?

Just to go and have a look for themselves. Go and have a look themselves. Go and speak to families and see what they're going through.