Imogen

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Imogen talks about ‘that horrible expression - the permanently vegetative state’ which was her husband’s diagnosis.

And that horrible expression, “the permanently vegetative state” is… I’m pleased it’s just… A coma is kind of a nice word and you envisage something - a bubble around someone. But a “permanent vegetative state” reminds me of something like a cauliflower - that you've become something moldy, a moldy vegetable for some reason.

So you think it fits?

Yes, it does.

Because some people hate that, they don’t want their loved ones described as vegetables. 

No, I don’t like it. (It’s thundering now!) I didn’t like it. No, I'm not saying- It fits. But once you accept that that's what it is, then you know how horrific it is. But you don’t want the whole world to think of your - the person they knew as vibrant and energetic as a vegetable.

Imogen’s husband was hit by a car as he helped friends reverse out of their driveway while Imogen stood watching.

The accident took place on - well, he was hit by a car basically. And the accident took place in a quiet country lane in where we have a cottage we'd renovated 20 years earlier, a family cottage. And we'd had some guests to stay- No, we'd had some guests for lunch. He waved the car out of- He walked across the road to wave the car out from the- where the guests were, and I was waiting in the drive. And they backed their car out and then moved it forward and stopped. While he walked towards the car, three more cars came along the road - I was standing in the drive- and then a car came from the other direction, and before he reached me the car hit him and he landed on the floor. And I just ran up to him and I just thought he'd fallen down. And he didn’t move, he just rocked his head. It turned out one of the other cars was a police car so they quickly backed their car up and rang for an ambulance, which I didn’t even know was going on. And I was just saying, “just automatically saying, “squeeze my hand, squeeze my hand” … His eyes were open and he squeezed my hand. And then one of the policemen said, “You'd better go and get him something to put under his head”. So I went into the house and started running- And they said, “We've rung for an ambulance.” And I was now just in shock I suppose. I was running around getting the clothes, ran indoors, switched off the lights. It was a summer's evening, a beautiful evening, so I just quickly grabbed a load of stuff and came running out. At that point an ambulance had arrived and they put him in the ambulance. So I got in the ambulance as well and rushed off, we rushed off to Hospital. 

Imogen was asked whether she wanted doctors to treat her husband (as if they needed her permission, which they did not). Although they explained the possible negative outcomes she just believed that he would be OK.

And the doctor said to me, “Okay, he's very seriously hurt. We don’t know what we can do. Do you want us to treat him?” I think they asked my- They needed my permission, I think, to treat him. They said, but when he – “He's in a coma”, that's right, they said “he's in a coma”, which I didn’t know the meaning of anyway “and if we treat him, we have to warn you the spectrum is like this: he could come out as he was, or he could come out like that, if we treat him, we don’t know until”

Did they say what they meant by “like that”?

The implicat- I understood what they meant. I understood but I didn’t. You don’t believe. You know, I just thought, “He's just fallen over”. You know, “He's going to be fine”. And I understood it like that. Is that what they've told other people, just “like this” and “this”?

People find it very hard to understand what the bad end of the spectrum could mean.

Imo: Well, I didn’t understand it but I knew there was a risk, but I didn’t believe the risk. So really I knew- I did understand they were saying it could be awful, but because I had such belief in my husband's strength and health, I didn’t believe it was possible.

And they asked you do you want us to treat him, and you said?

Yes.

Because?

I'm pretty sure they did say “do you want us to?” I don’t- I think they were asking my permission. But, you know, in those moments, you couldn’t say no, could you? You couldn’t- If someone's- You know, one minute they were saying “If they could treat him” and then, and then now they're saying, “We’ll treat him,” so I said yes. … The next time I saw him he was linked to a hundred machines beeping, you know, It was a- He was- It was a cold room. He was in a room on his own with a heart monitor, his brain being scanned, his heart being scanned, his – it was like a beeping lab. So he was on a ventilator, plus all sorts of things attached to his head. And they did say “The sooner” it was to try and bring him out of the coma as quickly as possible. And they said, “As soon as he- If you come out of the coma within 24 hours or 12 hours, the sooner you come out the better your chances are”. And that was what all this equipment, it was to bring him out of the coma.

And did you have a role in that, were you to talk to him or-

No, no, none of that. It was just all machinery then. Doctors and machinery, and a sense of having entered another universe. You're just standing there, not believing what's going on. 

Michael had been moved out of the nursing home back into hospital while Imogen was away for the weekend. She had specifically asked that he should not be moved while she was away.

I was furious. And I just said, why is he there? Nobody knew where he was at first and then I found him. I said, “Why can't he go back? What's happening?” And they said, “He can't go back because he needs a special ventilator”. And I said, “Why does he need a special ventilator?” They said, “Because his breathing isn’t good, he's getting pneumonia”. And I was just thinking, what does it matter, you know. But they insisted. So they kept him there a whole week and I just said, “I really want him back at the other place, I don’t want him here”. And eventually they sent him back with this huge machine and a big thing on his face which he couldn’t breathe, he used to choke with it. I hated it, I used to go in and take it off. I just said, “What good is it? Why, you know, it's just horrendous”. Anyway, that – 

So they were saving his life.

Yeah. And what for? They said- I said to one of the doctors, “What if I don’t want this anymore? What if we don’t want this, what do I do?” And that's when he said, “You'll go to prison if you do that”. Nobody said I had the chance to. 

Imogen spoke to us after her husband had died. Looking back she feels her life was ‘in limbo’ until she could bury him.

Oh, I still loved him. I mean, I still couldn’t let- I couldn’t live my life as long as he was in that situation. I couldn’t – you know, some people I know have said, or I've heard of, who say, “that's not the person therefore I get on with my life and that person is there and that's not him”. No, he was still- I still went- I went there every day, it was my life to go and see him. I mean, I felt ill every time, I felt sick nearly every time I went. I would sit – 

Why did you go every day? He didn’t know you were there, he wasn’t responding to you, what was it that took you there?

Because I couldn’t leave him there. I couldn’t let go. I didn’t think he was there waiting for me, I didn’t think that. But I couldn’t let go and say, I've got a life without a husband as long as he was there. Because on some level, he was still part of my life. My life had gone into a complete limbo and I was floating. I don’t know how I did some of the things I did, but every single day I went there. And if I didn’t go, I arranged for my sister to go or my children to go, or one or two very close friends, every day he was visited. People went there and read to him. We tried everything. We played him music, people made tapes to see if we could get him out of it. Everybody did everything possible. Even though I didn’t think he was there. Even though I no longer thought it was him, I did everything you could possibly do to try and fulfil those demands I suppose of trying to see if he was still there.

Imogen felt the Court of Protection ‘owned’ her husband and she felt under scrutiny.

The Court of Protection were stopping me from doing practically everything. And there was something – oh yeah, then they sent the Health Representative, a very nervous nice lady whose job it was to check that I wasn’t trying to murder him I suppose. She came in to see that he was being properly looked after and the Court sent this person. The Court of Protection's role was to check that I was not – that he was being – because he now belonged – he was theirs. You know, not only had the nurse taken him, the court had taken him. So this woman is sent to make sure he's being properly looked after.

And this is when he was in the care home?

Yes. It wasn’t to do with the care home. They wrote to me from the Court of Protection. She was a representative of the Court of Protection. And –

And what happened, she came and interviewed you? 

Yeah, she sat in the room with me, asked me questions, looked at him, made sure he was okay. But, you know, I was so nervous before she came, because I didn’t know what- if they thought I wasn’t doing a good enough- Every- The point about the Court of Protection is that they have the right to withdraw – to take you out of the equation and put someone else there. If they do not feel you're fulfilling your duties. And they don’t treat someone like a relative any better than if you were the next door neighbour who wanted all his money, or a stranger who wanted all his money. So I felt quite sorry for her. She was a decent person, but she had to ask very horrible questions. 

What sorts of things?

I can't remember. I wonder if I've got a copy of it, I don’t know, I did keep it all at the time, but I just– 

But you felt you were on trial?

All the time, yeah. That I was being– not necessarily – yeah, I was being questioned about my ability to act as the person responsible for his care. And that if I didn’t fulfil whatever was supposed- It was a bit Kafkaesque, you know, you didn’t know what the rules were actually. But if you didn’t fulfil them, you'd lose that role, and your life would be not only awful in the part anyway, but the last bit would be taken away as well.

So did you think they could like ban you from seeing him, or – 

Well, you don’t- Yeah. Even though, I mean, I know that in reality if anyone- If I'd said to them they'd have said, “Don’t be daft Imogen, you couldn’t do more than what you're doing”. Because everyone used to say to me, “I don’t know how you go in there every day, I don’t know how you're doing what you're doing”. But I still had that fear that they could take the money away, they could take the house away, they could take him away. Because I didn’t have control. 

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

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.

Imogen asked for the feeding tube to be reinserted. He eventually died some time later with untreated gangrene.

And we just knew he was going to die, we were just waiting for him to die. And that's when I was in these movies. And I'd have my mobile or my phone and I'd be thinking it's going to ring while I'm watching the film and I'll have to go back, to tell me he's dying. And it didn’t. It went on and on and on and on. And he got – they gave him morphine and they stopped feeding him, and it was only then that I realised when people say you're going to die that what they mean is they're going to starve you. And I hadn’t realised that. And he got thinner and thinner and thinner, and given that he loved food and was a real gourmet and a gourmand, I just couldn’t bear that he was starving. And so I didn’t realise- At some point I just said, “You can't starve him to death”. And I didn’t realise that at that moment I'd opened the door to a completely different scenario which meant that, if they fed him then he was no longer going to die. Which is what I really wanted to happen.

Had you – if you had realised, would you have been willing to have starved him to death?

That's a good question, I don’t know. I don’t know. You see, I'd have rather- I had hoped that once you make those agreements and you all agree this is not right for somebody that there was a better way of dying. I didn’t know what it meant - that the only way was starvation.

They didn’t explain that?

No. They just said, we'll give- well, if they did I didn’t understand it, because everyone said, “he'll die quickly”. They said, “He’s 72 years old, he's had a heart attack, he's had a stroke, and he's brain damaged. He'll die”. Everyone. But they didn’t know what a strong physical person they were dealing with. That his heart may have been a bit weak, although he wasn’t aware, you know, we weren't aware that he had anything wrong with his heart, if it had have been there. But his lungs and everything else were so strong, that I don’t think they thought a 72 year old man would live on. So I don’t know whether- you know, if you ask how they told me, you know, “we'll now-“, yeah, they must have said, “we'll withdraw food” but they wouldn’t have- The implication was that it would happen so quickly it wouldn’t matter. So when it went on and on and on and on I just – I couldn’t bear it.

And it dawned on you as he got thinner that that's what they were doing - that it was starving him to death.

I must have realised it at some moment in that scenario. Now they'd moved him up. Because he was… He'd just been put in a little side ward, near to where all the emergency- you know, where all this machinery had been for people coming in with accidents that were real emergencies, they'd just put him in a little room, but then when he didn’t die they didn’t know where to put him I think. So eventually they put him upstairs in another ward and they gave him a beautiful little private single room overlooking the gardens a bit, really nice, with the sun streaming in, where he continued to not be fed and nothing to happen. And then I think I got- I got the feel… As the weeks went on, I got a feeling that somebody wanted the room or something, that it wasn’t right that he was there all the time. But I didn’t know- Nobody really explained what the options were. And then there was this one doctor said, “What is happening?” I remember him saying to another- two doctors saying to each other, “What is the programme here, or what's –“ Because I think they must have started feeding him. I must have said something and suddenly he was being fed. But nobody knew quite why he was there. Because he had been put there to die, and now he wasn’t dying.

And then when he got the gangrene, they said, “Your choice is that you have the leg amputated, but that runs the risk that it'll go from one leg but it'll go into the other leg. Or leave it”.

And… ?

And he'll die. … And by then I just said, “I don’t know”, I think I- Yeah, I said- I mean, the gangrene was horrible. Have you ever seen gangrene? It's so horrific. It's like two years earlier he could be starved to death, and now he was going to have to die of gangrene. I mean, what a horrible thing to die of. And he just looked at me and said, “Would Michael want that?” And I just said, “Michael wouldn’t want any of this”. And then he said, “Well, there's your answer”. 

On the birthday, they did the big birthday at the [sighs] hospital – in the care home, with all the balloons and this horrible mushy cake and we all sat round the bed and I was so worried that someone would sit on or move where I knew he had the gangrene. And then we had this horrible meal again where we pretended – the number of meals in two and a half years where you pretend things – you know, so called celebratory meals that are full of – I suppose they're full of something lacking all the time. Like they're full of the opposite, but you're all pretending that you're still celebrating. And the next day I had promised my daughter to go for a six o'clock film. So I said, “I'll pop into see Dad beforehand”. And I went in and I was reading – I took with me the film guide. And as I was looking at it – we were going to go for a six o'clock film and it was about five o'clock and I rang – and I suddenly realised the film wasn’t on at six, it wasn’t on until eight thirty. So I rang her and I said, “Oh we can't see the film, it's not on till eight thirty. So we'll go to the late one or we'll go and see it another day”. So I sat there and suddenly he just gave a big sigh and died. And I was sitting with him, and nobody had called me or anything. And I wouldn’t have been there if the film had been on at the right time.

Did you know he'd died?

It was the way- Yeah, it was just the way he sighed. So I just cried. And I held him. And I sat with him for about an hour before I told anyone. I didn’t want the bloody nurses coming in and I didn’t want to phone anyone. And it was really special. Yeah, that I was there. And it was all right, yeah. So then I just rang them all up. And in fact, he died the day after his birthday. And we buried him on my birthday [laughs]. Because it was – that was the way it fell out, the number of birthdays in this sorry saga. 

Imogen says that she can’t give any advice to other families – but she sometimes regrets saying “you can’t starve him to death” and she wishes there had been other options.

What would you say to families just starting this journey?

Good luck [laughs]. I don’t have any advice. Just good luck. But I don’t know, I don’t know what I would have done differently. I suppose, you know, if I go back to that moment where I said, “You can't starve him to death”, I did regret it sometimes. But I obviously felt it at the time. I just couldn’t bear to let him starve to death. I guess I would have preferred them to have said to me, “You've made that decision, now on Tuesday we'll give him- or Wednesday or whatever day you want, you can all come round and we'll give him an injection”. You've made that decision. Why wait and wait and wait for it to happen. If when you withdraw – for all the reasons that you've agreed it, why then prolong it happening? And then it would have been over.