Morag
Brief Outline: Morag’s father had a brain haemorrhage on her 16th birthday, in 1991. This came completely out of the blue: he was 45, apparently fit and healthy and a serving police officer. He was then in a vegetative state, and later (probably) a minimally conscious state until he died of pneumonia nine years later.
Background: works in media
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On her 16th birthday, Morag’s father (aged 45) collapsed with a brain haemorrhage and was rushed to hospital. After a series of interventions, including operations on his brain, the clinical team judged further treatment futile and decided to turn off the ventilator expecting him to die. However he continued to breathe on his own.
Her father eventually showed intermittent awareness and there was a period where his family could spoon-feed him tastes of pureed food. However, he was dependent on artificial nutrition and hydration and never spoke or gestured. He would sometimes turn his head and show agitation or relaxation. Morag says: “from about a year, he absolutely knew what was going on”. Over the years he developed muscle wastage and spasticity and underwent a series of operations: “it was awful to see, from him being such a physically strong man, to withering away”. Morag’s father eventually died on pneumonia nine years after the original injury.
Morag feels that after the initial interventions in intensive care “Daddy was kind of left there to rot …The staff would shrug their shoulders and say ‘it is what it is’.” Morag and her mother fought to ensure that her father would be properly assessed and fund-raised to get him to a specialised assessment centre. She was also determined that he should be recognised as a person by the staff caring for him. She remembers her father as a very dignified individual who would have been mortified to be totally dependent on others for everything. An important message to staff was: “don’t talk over him like he’s a piece of meat or like he’s not even there or like he’s already dead - because he’s not.”
Morag describes moments of hope, influenced by media images of ‘waking up’. She recalls the first time his finger moved: “I remember us getting really excited and pressing the buzzers and calling the nurses … thinking something big was about to happen and, of course, it didn’t”. Although such moments proved to be ‘false hope’ she also says the family “just kept saying over and over and over again, ‘where there’s life, there’s hope’, and we never gave up hope really, ever”.
In some ways Morag feels she lost both her parents on the day of her father’s injury and what happened changed her attitude to life and relationships. However she also appreciates how her father was involved in family life right up until he died. For example, after a cousin’s wedding they took their bouquets into the hospital and took photographs: “so he was still part of what was going on…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”. Although what happened to her father was devastating, Morag says: “I believe that experiences in life, you have to just use them to make you stronger … because otherwise you just sit there and it ruins the rest of your life”. Her message to other teenagers facing this challenge is: “You absolutely will get through it … and just think that your parents are proud of you and always will be proud of you and don’t go throwing your life away because something bad has happened to you”.
Her father eventually showed intermittent awareness and there was a period where his family could spoon-feed him tastes of pureed food. However, he was dependent on artificial nutrition and hydration and never spoke or gestured. He would sometimes turn his head and show agitation or relaxation. Morag says: “from about a year, he absolutely knew what was going on”. Over the years he developed muscle wastage and spasticity and underwent a series of operations: “it was awful to see, from him being such a physically strong man, to withering away”. Morag’s father eventually died on pneumonia nine years after the original injury.
Morag feels that after the initial interventions in intensive care “Daddy was kind of left there to rot …The staff would shrug their shoulders and say ‘it is what it is’.” Morag and her mother fought to ensure that her father would be properly assessed and fund-raised to get him to a specialised assessment centre. She was also determined that he should be recognised as a person by the staff caring for him. She remembers her father as a very dignified individual who would have been mortified to be totally dependent on others for everything. An important message to staff was: “don’t talk over him like he’s a piece of meat or like he’s not even there or like he’s already dead - because he’s not.”
Morag describes moments of hope, influenced by media images of ‘waking up’. She recalls the first time his finger moved: “I remember us getting really excited and pressing the buzzers and calling the nurses … thinking something big was about to happen and, of course, it didn’t”. Although such moments proved to be ‘false hope’ she also says the family “just kept saying over and over and over again, ‘where there’s life, there’s hope’, and we never gave up hope really, ever”.
In some ways Morag feels she lost both her parents on the day of her father’s injury and what happened changed her attitude to life and relationships. However she also appreciates how her father was involved in family life right up until he died. For example, after a cousin’s wedding they took their bouquets into the hospital and took photographs: “so he was still part of what was going on…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”. Although what happened to her father was devastating, Morag says: “I believe that experiences in life, you have to just use them to make you stronger … because otherwise you just sit there and it ruins the rest of your life”. Her message to other teenagers facing this challenge is: “You absolutely will get through it … and just think that your parents are proud of you and always will be proud of you and don’t go throwing your life away because something bad has happened to you”.
Morag remembers being told her father was ‘brain dead’. The doctors decided to turn off life support, but her father started breathing on his own.
Morag remembers being told her father was ‘brain dead’. The doctors decided to turn off life support, but her father started breathing on his own.
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And then hope comes back then, that the main thing, is that hope comes back because it’s like well, “he’s fighting, he is alive and he’s breathing by himself,” so it’s that hope that he might just open his eyes ‘cause we’ve 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.
Morag was unhappy with the care her father received because there was no interest in being proactive with him.
Morag was unhappy with the care her father received because there was no interest in being proactive with him.
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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 he’s a piece of meat or like he’s not even there; or like he’s already dead because he’s not.” You know, “and take care when you’re washing him and shaving him and, you know, he’s 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, we’re going to stop this now and we’re 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.
Morag found it very painful to leave her father in a care home. She and her mother would have loved to be able to look after him themselves.
Morag found it very painful to leave her father in a care home. She and her mother would have loved to be able to look after him themselves.
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Where there’s life, there’s 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 he’d 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.
Some people dismissed her father as completely unaware – but Morag and her mother and sister could see that he responded to them. They fought hard to get a proper assessment for him.
Some people dismissed her father as completely unaware – but Morag and her mother and sister could see that he responded to them. They fought hard to get a proper assessment for him.
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And so that was kind of hope that somebody had recognise what we’d 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 he’s 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 there’s life, there’s hope, was something that we just kept saying over and over and over again, “where there’s life, there’s 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, we’d have to tell him at least 20 minutes before visiting ended that we were leaving because he’d get so agitated and anxious. And you know, his whole body would kind of twist and contort and he’d be really, kind of you know, anxious and worked up as sort on as we’d say we were leaving, you know. So you tell me if he doesn’t understand, why he’d have that reaction all the time? You know, and some days he’d 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 we’d say “no don’t blow those bubbles at me” and he’d 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 he’d turn his head back again. Now are those the signs of somebody that doesn’t understand? Absolutely not.
Eventually Morag’s family were able to have her father taken to a specialist assessment centre in England. But Morag believes being away from his familiar environment in Wales did not help him to display his potential level of awareness.
Eventually Morag’s family were able to have her father taken to a specialist assessment centre in England. But Morag believes being away from his familiar environment in Wales did not help him to display his potential level of awareness.
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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.
On hearing about the term, ‘minimally conscious state’, Morag was not impressed by the progress of medical science in helping people like her father.
On hearing about the term, ‘minimally conscious state’, Morag was not impressed by the progress of medical science in helping people like her father.
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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.
In some ways she lost both her parents the day her father collapsed – but Morag learned to be very independent.
In some ways she lost both her parents the day her father collapsed – but Morag learned to be very independent.
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She never felt she came from a single parent family, and wishes her father were there to be a granddad to her own child.
She never felt she came from a single parent family, and wishes her father were there to be a granddad to her own child.
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Oh. They weren’t your choice, I take it?
At the time, they were fine, but we’re 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 there’s 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.
Morag is determined not to be a ‘victim’.
Morag is determined not to be a ‘victim’.
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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].
Morag was challenged by an acquaintance who took it upon herself to tell Morag that she had been ‘cruel’ to keep her father alive.
Morag was challenged by an acquaintance who took it upon herself to tell Morag that she had been ‘cruel’ to keep her father alive.
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Morag found her father’s death from pneumonia very traumatic.
Morag found her father’s death from pneumonia very traumatic.
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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, he’s gone.” And then it could be thirty seconds, you know, and oh, then there’d be a gasp and then he’d kind of breathe again and then he’d 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 he’d stop again and we’d all go “that’s it, he’s gone now” and we’d cry and then another gasp. And for days of that, it was just, you know.
When Morag’s father died, her mother – who had devoted nine years to caring for him - lost her whole ‘reason for being’.
When Morag’s father died, her mother – who had devoted nine years to caring for him - lost her whole ‘reason for being’.
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Morag describes being part of a tightly-knit local community and the support at the funeral from the police force her father had been part of.
Morag describes being part of a tightly-knit local community and the support at the funeral from the police force her father had been part of.
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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 he’d played a trick on him or something or other. Apparently, I think that’s where I get my wickedness from.
Morag says it is important to listen to people with relevant experience. She also has a message for other young people confronting what she had to face as a teenager.
Morag says it is important to listen to people with relevant experience. She also has a message for other young people confronting what she had to face as a teenager.
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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. There’s 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 she’d 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.