You have to be realistic as well, its information isn’t it, you’re making decision based on information which is tried and tested. That’s why I think research like this is excellent because you get to learn from other people. I think that’s the key thing. When you find another family going through the same thing it’s really important that you keep in touch because nobody else understands.

You either get people who you thought were friends suddenly the phone calls and visits get fewer and few really classed as friends, who become, you know, your saviours, the people who are there for you, who come and sit on a Sunday afternoon in the hospital to keep you company, who are you know, just kind of there for you. And it’s really interesting to see who you thought were friends aren’t, and the people that you never really thought were friends are the ones that come out of the woodwork, really, to help and support you when you need it.

What would your message be to another sixteen year old who faced who’s starting on the journey of facing what you have faced?

You’ll get through it. You absolutely will get through it. Try and stay strong. Your life will change because you’re no longer the baby of the family. Theres another child in the family now, so you’re no longer the child of the family, so the whole dynamics change, and you know, just try and make the best of your life that you possibly can. And try not to it’s nobody’s fault, at the end of the day. You know, stop trying to find somebody to blame because it’s nobody’s fault, these things happen and they happen to families everywhere without us knowing about it. I’m sure every single hospital in the whole of the UK, probably the world, have got somebody in PVS or some sort of coma or whatever they call it these days. It’s amazing, isn’t it, advances in medicine and all they come up with is a new name [laughs]. Brilliant. But you will get through it and, like I said, my mum at the time when shed heard somebody had been six months, you know, broke down and kind of just almost collapsed in a heap, saying I will never cope, and then you do. You know, just take every day as it comes and just think that your parents are proud of you and always will be proud of you and, you know, don’t go throwing your life away because something bad’s happened to you.

Oh somebody I went to school with, we were out on a hen do, I hadn’t seen her for probably ten years and she got drunk or whatever she was, I’m not quite sure, and she locked me in a toilet cubicle in a pub [laughs] and A, started telling me she my shoulder and what are you doing in the ladies’ toilets, hes been dead a few years now [laughs]. What’s he doing in the ladies’ toilets? But basically saying that, you know, we as a family were so cruel and we were so wrong and we should have just let him go and we should have let him die, and she didn’t grasp, I don’t know if it was cause she was too drunk or because she didn’t want cause she had a, you know, preconceived ideas, she didn’t want to believe, for whatever reason, that there was nothing we could do. You know, he the ventilator was turned off, he continued breathing and he continued breathing by himself for, you know, nearly ten years. But she was just, you know, you’re so cruel and as a family, we should have let him go and we shouldn’t have kept him alive and I don’t know how many times “we didn’t keep him alive, do you not understand?” We didn’t keep him alive, he was alive. We didn’t keep him alive, just in the same as you are and I am, were just alive.

At the very, very end, it was be at peace. It was always don’t leave us [cries]. Sorry. It was always don’t leave us but in the end, the last few days, you wouldn’t have let an animal suffer like that and we were just telling him just go, it’s fine to go [cries] cause he had pneumonia in the end and he was just so poorly and for the last two days, he kept stopped breathing. And then hed start again, and then hed stop again, and it went on for about two and a half days, where we thought constantly we just didn’t leave the room for two and a half days, just thinking hed gone [cries]. And then hed breathe again, and then hed stop and then hed start again. And you wouldn’t let an animal suffer like that. Sorry.

Did he get good palliative care? Do you feel they were caring for him in terms of pain relief and -?

In the last few days, yeah. I mean, you always kind of wish that they’d give more sooner basically because when you know, but obviously the law is the law but, you know, at that stage, when somebody is so clearly suffering, you know, and you know this is it, the whole body’s packing in and the organs are packing in and, you know, at that stage I think maybe, you know, just that extra injection or something, just that bit sooner, cause two and a half days is an awfully long time.

An extra injection to sedate them, so that they don’t wake up.

Yeah.

Yeah.

You know, cause it was just horrendous. It was absolutely horrendous.

I think it could have ended sooner, it could have ended sooner. It was a long, painful, slow death. In those last few days, it needn’t have lasted. You know, it was you know, his organs, but there was no coming back from this, this was the end. We knew it was the end, and to watch somebody stopping breathing and then just that, oh, like a gasp then and, you know, we were crying saying that’s it, hes gone. And then it could be thirty seconds, you know, and oh, then thered be a gasp and then hed kind of breathe again and then hed get back into a rhythm and then, you know, it could be half an hour, it could be an hour, it could be, you know and then hed stop again and wed all go that’s it, hes gone now and wed cry and then another gasp. And for days of that, it was just, you know.

You can never prepare yourself because when somebody’s been in PVS for such a long time, your whole life changes, your whole routine changes and for my mum, she didn’t just lose her husband and the father of her children. She also lost her routine and her job and it was like losing a child because she cared for him physically like you would a child. It was physically, you know, washing his hair, combing him, making sure he was shaved, you know, taking his pyjamas, washing them, in the same as you’d look after a baby. So she lost her husband, her job, her reason for being, her child, she lost everything overnight, you know, which was even more difficult than for us.

But I used to thoroughly enjoy going to the police station when I was little. It was a tiny little police station with one cell, and I used to love going and sitting in the police car and putting the sirens on and so just, you know and always just had so many friends, so many friends. And I think, I’m sure well come onto it later, but a testament to the kind of man he was, that hed been in a coma for nearly nine years before he died and he had a full police funeral. And there were traffic cones up the street and there was no room in the crematorium for people, it was standing room only, and people were stood outside. And to think that somebody who’d been out of society for such a long time, that’s

Everyone remembered and knew him and

And everyone had a story to tell about him. And he had a wicked sense of humour as well, a real wicked sense of humour, and everybody had a story about, you know, when they’d got drunk with him or when hed played a trick on him or something or other. Apparently, I think that’s where I get my wickedness from.

Absolutely, it just yeah, absolutely, everything just changed like that because my mum and my dad, I lost both my parents the same day because my mum then went into the hospital. And because there was this uncertainty of, you know, he might just stop breathing at any second, you don’t want to leave somebody in a room by themselves. And you know, if they woke up and there was nobody there, so my mum was there constantly and I bought my first car while I was sixteen. I went half shares with my sister and we because, you know, my independence was so important to me because, you know, wed go down to the hospital in the morning, then wed go to school and then the school bus would drop us back off at the hospital and wed eat tea in the hospital canteen; and then we would do revision in the hospital day room and we would sit there til eleven o’clock at night and then wed go home and wed sleep. And wed get up and wash and go to the hospital, go to school and, you know, we and on weekends, wed spend all day every day there. And that was life, really.

I think that’s the main thing, is showing them that they’re still a part of your life. You know, that’s the key and that’s you know, that’s why, you know, he would have been in the family photos for my cousin’s wedding, so he was in the family photos. You know, he couldn’t come to us, so we went to him in our hideous big poof shouldered green dresses.

Oh. They weren’t your choice, I take it?

At the time, they were fine, but were talking, you know, over 20 years ago.

Things date, don’t they?

They do. But it was not even yeah, I got my GCSE results, the first place I went, straight to the hospital, from the school straight to the hospital. You know, for anybody, any sort of youngsters going through the same thing with a parent, I think the one thing that I found tough is that my grades, academic grades don’t reflect my ability because, you know, I did my GCSEs, sat in a communal hospital day room, did all my revision, living in the hospital, and theres only so much you can take in.

And I remember my cousin got married and we were bridesmaids and we went between the church and the reception, we went to the hospital and we left our bouquets in the hospital and had photos taken with him. You know, so he was still part of what was going on, but on the other hand, our lives stopped for nearly a decade, particularly my mum’s. You know, my mum did not have a life for ten years, basically. He was her life for ten years, you know, and it’s weird. It’s really weird and I can’t explain it. I’ve never ever felt like a single parent family, even though I’ve spent more than half my life without my dad in it, never felt like a single parent family, ever, ever, ever.

I’ve cried for so many years of my life, but not you know, my husband says that, you know, the one thing the worst thing anybody in the world could call me is a victim, you know, cause I believe that experiences in life, you have to just use them to make you stronger, you know, cause otherwise you just sit there and it ruins the rest of your life, you know; and that would just devastate. The person’s lying there, your family wants the best for you, you know, and for you to let this situation just ruin your life. And for course it does ruin your life in one way but on the other hand, you can hit the self-destruct button and start to feel sorry for yourself and keep going why me? And why us and why is just such a pointless question to ask because, you know, theres no answer why, you know. The only question, I think, is how would you deal with it. You know, and theres no lessons in dealing with it either.

You just kind of don’t like putting anybody else out. You just kind of roll your sleeves up and get on with it, which has, you know when you’re so young, it has such an impact on the rest of your life. It has an impact on, you know, your career, your life choices, your relationships, your attitude to money, all these things which you might not think are relevant, they’re absolutely pivotal to what happened, you know, and I know that one of my biggest flaws is that I’m too independent, I’m really bad with money. But I also know exactly where it comes from, so I should really do something about it [laughs].

So even in such a small hospital, there were only kind of two wards, there were three PVS patients in there. And they were basically left there to rot, I think is the you know, they were being tube fed, or PEG fed, so they were getting their feeding. They were getting their bed linen changed, but otherwise, there was no proactive care whatsoever and one day a neurosurgeon from the [London Specialist Centre] came down to give a lecture, a talk to some of the doctors or surgeons in [Hospital] and hed heard about the three of them in [Hospital] and wanted to come over to see them. So he came in and kind of did some tests and my dad, out of the three of them, was the only one that did react. He said it wasn’t consistent, it was intermittent, but he said he wanted him to go to [London Specialist Centre] to do some tests on him, and to see he said even it’s moving his little finger or his chin or blinking an eye or any way of communicating yes, no, then that could be unlocking his contact with the world. So this was just hope, joy, elation, and then the NHS said they wouldn’t pay for him to go. So we started fundraising. So we started raising lots of money cause it cost quite a lot of money, even for us to go and stay for the weekend as a family, you know, you’ve got to pay for families to stay there as well. And by this point, you know, there was nobody working in the family.

And so that was kind of hope that somebody had recognise what wed been saying for such a long time, that he could hear and he could understand, and some of the staff got it and a lot of the staff didn’t get it. And a lot of the staff would go in and speak over him, as if they were changing an empty bed. And I don’t know how many times, as family members, we would firmly but politely take them outside and say please don’t speak over him, he knows, he can understand and they go oh, Vic is Vic. You know, he is where he is and hes not going to come from where he is and I think as staff in a hospital, to say that, you know, nobody knows at the end of the day. You know, and where theres life, theres hope, was something that we just kept saying over and over and over again, where theres life, theres hope, and we never gave up hope really, ever. And it wasn’t a case of us being wrong, it was a case of us having to tell the other people that they were wrong, that, you know, he could hear and he did understand and I know as you explained to me how, you know, wed have to tell him at least 20 minutes before visiting ended that we were leaving because hed get so agitated and anxious. And you know, his whole body would kind of twist and contort and hed be really, kind of you know, anxious and worked up as sort on as wed say we were leaving, you know. So you tell me if he doesn’t understand, why hed have that reaction all the time? You know, and some days hed kind of almost like blow bubbles, sort of dribble sometimes and, you know, my sister and I maybe or my mum and I would be sat either side of the bed and wed say no don’t blow those bubbles at me and hed turn his head the other way and whoever’s on the other side, well don’t you turn to me and think you can do it. And then hed turn his head back again. Now are those the signs of somebody that doesn’t understand? Absolutely not.

We did get him to [specialist centre] and something very strange happened when he got him to Putney. He shut his eyes and didn’t open them for the whole time he was there, until we came back in the ambulance and my mum said oh look, were getting to the Severn Bridge, you know, Croeso i Gymru, Welcome to Wales sign, and he opened his eyes in the ambulance on the way home. So again, he didn’t you know, apparently he didn’t understand but he lost a lot of weight and they doubled his feeding when he was there and the weight dropped off him. And by the time they scanned him, they scanned him for MRSA before they could go there and again before he could be transferred back again, and they found that he had dozens and dozens of little kidney stones which they said had been brought on by stress because the accents were different, the voices were different, his environment was different and we weren’t there all the time because we couldn’t be because he was in London and we had to pay to stay here. And you know, we just couldn’t afford for my mum to move down there for, you know, however many months. And you know, so we would travel down on a Friday evening and sometimes wed travel back really early on a Monday morning in order to get back for work. But during that time, he didn’t have familiar voices, he didn’t have a familiar routine, but the really good thing is that we raised money for a wheelchair for him and they had a beautiful garden, so

Res: So they would get him, you know, in a tracksuit and his head would be all strapped in and everything, and at least you could take him out for a bit of fresh air and just sort of wheel him round the garden, so that was nice for him to have, you know, just a bit of change but I know he used to get so distraught when we were leaving and it’s just, I suppose, if your only contact with the outside world are voices and sounds, when that changes completely and your family aren’t there, you just can’t even begin to imagine and, you know, he had all these kidney stones, so he had operation. He went down to theatre when he came back to Cardiff, to get rid of his Kidney stones because he was in a lot of pain.

Derick Wade is a consultant who does evaluations on people who are in vegetative or what would now be called minimally conscious states, for your father

So right, they’ve got a new name for it now have they?

Yes, minimally conscious.

They’ve haven’t done anything except re-name it?

Yes, minimally conscious is defined by intermittent consciousness, minimal and intermittent.

Well there we are in the last 20 years they’ve found a new name for it, Whooppee.

They said they were switching off the life support machine, that he was brain dead, and they reassured us it was for the best. They said that there was a patient who’d been in the same condition and I think they’d been in the same condition, I can’t remember cause it was such a long time ago, but it was something like three months or six months and I remember my mum breaking down crying, saying I could never cope, I could never cope with this for three months or six months, theres just no way. And they said well, you’re not going to have to make that decision, were making the decision for you, you sit on the bed, were going to switch the machine off, his breathing will go shallow, hell turn blue, you can say your goodbyes and that’s that, so that’s what we did. We braced ourselves, we were around the bed as a family and they switched the machine off and he started breathing. So we were kind of going, you know, hes breathing. Oh no, no, no hes definitely brain dead, hes definitely brain dead, it’s you know, this is just a glitch. You know, well switch the machine back on for half an hour and then well switch it back off again and, you know, same process again. His breathing will go shallow, hell turn blue, you’ll say your goodbyes and that’s that. And he started breathing again. So this saga kind of went on and off and when they did turn the machine off, he continued to breathe for himself, so there was no decision to be made, really. You know, he made the decision himself to kind of stay alive.

And then hope comes back then, that the main thing, is that hope comes back because it’s like well, hes fighting, he is alive and hes breathing by himself, so it’s that hope that he might just open his eyes cause weve all watched the soap operas and of course they just open their eyes and go, oh where am I? And you know, yeah so hope came back, I suppose. There was no kind of anger or frustration I had with the hospital for getting it wrong, we were just so relieved that he was still with us and we hadn’t lost him, basically.

And what happened with other over time, where there other moments of – ?

A few, not many unfortunately.

But for the first year or so, he was in what we could call a deep coma, where you know, if you’d have put pins in him he wouldn’t have reacted at all. So he had a tracheotomy and that was fun, with the cleaning tube going on, just splattering the whole room [laughs]. And you know, the day came where he kind of opened one eye and then he started moving a finger and then, you know, you’re putting the star shaped sponge, which I’m sure lots of families will remember the star shaped sponges to clean the mouth, and he clamped down one day and sort of bit on it and wouldn’t let go, and he swallowed the sponge and we were left with a stick in our hand [laughs]. And you know, so these gradual little stages.

The first moment of when, you know, his finger moved and then when his eyes opened, that was a moment of hope and then when he kind of bit down and chewed, I remember us getting really excited and pressing the buzzers and calling the nurses and kind of thinking something big was about to happen and, of course, it didn’t.

Nobody really came to look at him, as far as I can remember. Maybe it’s just maybe it’s false representation on my part, but I can’t remember. He was, as I say, kind of the three of them, [name of a second patient], [name of a third patient] and Daddy were kind of left there to rot as far as I can which, you know, not in a cruel, vindictive way, you know, but in the basic care kind of way, just in a you know, the staff would shrug their shoulders and say it is what it is, he is what he is and, you know, hes never going to come from here. And that was it. So it was the bare minimum of changing the catheter, changing the bed sheets and making sure that his feed was changed, you know, when it should be. But otherwise, there was nothing, there was nothing proactive, there was nothing innovative.

He was such a proud man, he would have hated it. He was a really proud man and he was very much, you know, the man of the family, you know, he was in a caring profession, he always looked out for other people and he was always doing favours for other people and, you know, doing stuff, and he had so many friends, he was a very giving person, and I can’t you know, he would, just to be there, just lying there anyway and having, you know, everybody put themselves out for him, he would have been mortified and that’s why sometimes the attitude of the staff was he was very dignified, so don’t talk over him like hes a piece of meat or like hes not even there; or like hes already dead because hes not. You know, and take care when you’re washing him and shaving him and, you know, hes a living, breathing human being. And you might not believe that he can’t hear, but he can. You know, they say the hearing’s the last thing to go and the first thing to come back. And that’s certainly our experience, definitely our experience.

And so looking back, who he had been before, you think he would have hated it and been mortified?

Yeah.

But once he was in that state, did you feel any sense of what?

I mean, to start with, there was just no reaction at all for the first kind of year or so and then afterwards, you know, I’m sure there were days where, you know, we would have thought, you know, this is just too cruel and he shouldn’t suffer like well I know there were days when we thought, you know, nobody should suffer like this, but it was his decision. It wasn’t our decision. You know, he decided the machine was switched off, that decision was taken away from us and he carried on breathing and we just gave him the basic human right of food. You know, we didn’t do anything else, there was we didn’t there was nothing we did to kind of, you know, keep him alive for our own selfish reasons or anything like that. We let nature take its course and we didn’t steer it one way or the other. We didn’t say okay, were going to stop this now and were going to stop his feeding and also we didn’t say okay, we now are going to do all this kind of, I don’t know snazzy research, you know, use him as a guinea pig. We just kind of let him do what his body let his body do what his body did, basically. And he was a strong man and he was a fighter and he had a strong body. And it was awful to see, from him being such a physically strong man, to withering away, you know, and his whole body, his hands and his feet and his legs and everything was all sort of twisted and contorted and he was he had a round face, I get my fat face from my dad, you know.

And things like putting him in a chair and then, you know, eight hours later hed still be in the chair, well of course hes going to get bed sores then isn’t he? So you know, and they did do really well. He had a Pegasus mattress and stuff, so for a long time, you know, it was only right at the very end he had bed sores, but they’d started so then it was well they stopped putting him out at all because they didn’t have the time to put him out and then put him back into bed again. But as far as, you know, medicine-wise, and you know, caring for him with the objective of getting him better, I don’t ever remember anything happening. It was just us waiting and hoping and trying, you know, to kind of talk him round, I suppose [laughs]. But anybody who knows us, me and my mum, not so much my sister, but no we could talk a glass eye to sleep so probably we did more harm than good [laughs].

Where theres life, theres hope and you were hoping to kind of talk him round’? What was your vision of what recovery might be for him?

We just wanted him home, you know, and we just didn’t have my mum didn’t have the physical strength or we didn’t have the physical space to have him home and we just wanted him home. You know, we wanted him home with us where we could look after him, where we knew hed get the care that he deserved and we just didn’t like leaving him. You know, it’s hard to go and leave somebody that you want to look after and [cries]. Sorry.