Verity

Brief Outline:

In 2005, at the age of 17, Verity’s son was involved in a near fatal car accident that caused him severe traumatic head injuries. After a long period of unconsciousness he eventually showed signs of awareness but his prognosis was not good. Nine years after the accident her son is still alive, “living a life without dignity”.

Background:

mother of 3 sons, worked as a successful business woman, now unemployed due to ill health.

More about me...

In 2005, Verity’s seventeen-year old son was severely brain injured after the car accident. At that time, he was given emergency medical intervention and given his youth, the fight for his survival seemed forever...There were more than 5 occasions when the consultants approached Verity and said her son was dying and heart failure would finally be the outcome of his imminent death. The consultants put her son in a therapeutic hypothermia state (therapeutic hypothermia is a treatment used on many brain injured patients) and she vividly remembers touching her son and how he felt like a cold dead body. Verity's son survived against all odds but left him in a Vegetative State for a long time. After one year, the consultant wrote to Verity suggesting that on her approval, he would like to "withdraw nutrition and hydration" which would assist her son in dying as there was “no future for him”. She declined. Three years later, a similar request was made by another consultant despite her son showing minimal consciousness. A second opinion was appointed by the Courts of Protection resulting in her son's feeding being reinstated. 

Now, Verity's son is at the top end of Minimal Conscience State living in beautiful care home next to a lake. He is trying to communicate and is slowly improving. She says: “His ability to eat or taste proper food will probably never materialise but who knows with his determination.” 

Since 2005, the tragic accident of Verity's son has left the whole family “living a nightmare”, as she described it, “an out of control roller coaster ride that never stops”. Verity is still grieving although her son is still alive. It's like living in a state of limbo, she explains, never knowing how she may feel when her son finally dies. Would the grief be worse?

Although Verity is extremely proud of her son’s battle for survival, she knows that he would not have wanted to choose to live like this. She feels that the son she knew in her heart is dead. She says: “It was medical intervention that kept him alive. … He would have died, given his choice but they fought and fought and fought and fought to keep him.” Although at that time all she wanted was for him to live, with hindsight, “I would let him die with dignity".

When Verity’s teenage son was in intensive care all she wanted was for him to survive, but with hindsight, knowing what she now knows, she would have allowed him to die.

When it happens to your – especially your children – you know, your children aren’t supposed to die before you. And, all you want, all you want is for them to stay alive. You know, you sort of listen to a lot of things and you’ve been warned and even sort of advised, they do it very delicately, they could switch the machine off. But you don’t - you just don’t - even despite that conversation I had with him, but then I had his parents, you know, the other side of the family would not have done that. They’ve always been against that. And I didn’t want it either. I mean, no one – you can understand. You see them in pain and you see them virtually dead, you know, morgue state, you know, cold to touch, no movement, nothing. And bells keep going and you’re kicked out, being kicked out all the time [crying] and watching his heartbeat going mental. You know, all these monitors – I became really good at learning them. And you don’t think at the time. All you want is, “I don’t want him to die.” But if I had - In hindsight I’d be honest, I would, I would have let him go.

I mean, you were touching a dead body. He went blue, it was like seeing a dead body. It was these blankets over him and, and - that’s the stage, I think, then, if they couldn’t kept him alive and they had to freeze him, they should have said… they shouldn’t have done that. They should have just let him, and then he would have died of a heart attack. That’s what - He would finally have died of a heart attack because his - I mean, and it would have been so much easier in the long run. I mean, of course, then you want him to live; but boy, if I could change that time. This is like – this is –I call it… it’s not punishment because – but it’s changed though, it’s changed me. I was a successful woman; it’s changed a lot of things. My children, it’s – the effect it’s had on the whole – everyone including, you know, the [name] side. It’s devastating, absolutely devastating. And his friends. We could have all, you know - Let’s get - At the time I would have been… yes – but I’m still heartbroken. So this is, like, eight years of suffering [crying]. It’s now going to be the ninth year next April.

Verity feels very traumatised by what happened and devastated by losing her son, but being unable to grieve for him. She wants to be able to remember him as he was.

And I just want to remember him as he was, not this thing [crying]. I’m sorry. But this thing he became and I wanted to remember him laughing, joking, running and walking. Now, when he dies, there’s going to be two sides of [son’s name], isn’t there? You’re not… you can’t still bury the old [son’s name] because he’s supposed to be in this body that you—and the worse thing is he remembers.

I haven’t buried him yet, he’s not buried, he’s still alive in my head. The day I bury this body, this new [son’s name] body, that’s the day I bury, I realise I, although in my head I say, [son’s name] is dead, he’s not dead his body’s still here. That’s the day then I will have to amalgamate the two together. But at the moment, the only way I can survive is, don’t forget, never forget. 

For us to have gone through all that… but if I’d known now - even with what he’s doing now - (you haven’t seen pictures of him), I wish I’d turned that… I wish he’d died. Because he’s got no dignity, there’s no dignity, they take over, they decide what to do with him and they then, the money runs out and that’s it, then they don’t want to spend any more, and that’s exactly where [son] is now. And if you don’t keep pushing and pushing and pushing… like this, the speech therapist is doing what they can best. They keep changing it, one minute do this, for ‘yes’, do that for ‘no’s. You know. I don’t need that anymore. I just look in his eyes, he talks to me, he’ll raise his eyebrows when it’s a yes and if he’s angry he’ll, he just knits his eyebrow. He’s so… in a way you know, you’ve learnt, because you’ve had to, I’ve lived with… you’ve had to learn this new… that’s why I call him my new [son’s name]. 

But if you want the honest answer, and I don’t care, I don’t care if people condemn me for saying this, I wish he’d died when he was seventeen. Because… it’s not because I didn’t love him, but because of the uphill struggle he’s had to fight and we’re still fighting and the pain that’s caused, not, not just the immediate family, but his friends. They can’t even come to see him anymore. Because they’ve got new lives, they’re married, they’ve got kids. 

All I’m saying is please – don’t feel guilty about it because you need that time out. You need time out because you’re fighting between, I’m fighting between, the [son] that I want to remember and the [son] that I see now. And I still remember him [sobs] but not as much, not as much. I see [son] and I remember the… I don’t want to remember him as he is now. I want to remember him as he was. And they took that away from me.

Verity has learnt to take pride in her son.

Because it is, how I look at it. I, for me to survive that’s how I look at it. I refused to accept the new [son’s name] and after a while I realised it, oh why am I, I did some soul searching myself and I realised that you’ve got to respect this body, this person who, who, out of all he’s been through, he’s turning out… he smiles the same, he remembers things from the past. He’s not so much good with short-term memory, but you mention, like his favourite food or a favourite time, or an animal even, the cats or you know the dogs we used to have, or his favourite colour or a friend in the past I bumped into. “Oh, I bumped into so and so”, or, you know like, you know his eyes just perk up and he does turn to look to see if they’re there. 

And to me, yeah I can’t, this is not… My old [son] is gone, but his personality’s there but it’s not. The image I have like now, I sit, I still see him running around laughing and saying, “Yeah, whatever Mum” and going in his room, and how many clothes, and I’m saying, “How many changes of clothes every day.” You know, “You only wore that for half an hour yesterday.” “Oh, I can’t wear that” so you’re constantly washing, the machine’s on and you’re thinking of all these things and I remember him like that and I like to remember him. But when I go and see him as he is now, I have a sense of pride, that I lost. I didn’t want to find this new [son], I didn’t want to be part of his life. I find this… sorry, I’m shaking. But it’s such a… it’s taken me seven years, so don’t expect it to happen overnight. 

But to accept him as he is and to get that pride again, that I’m proud, I’m so proud. I can, I am so proud that he has proven the NHS wrong, he has survived. He, against all odds, this child deserves a - you know, he should’ve been in the army - award.

I will achieve something that he would love so much is to eat again. To taste food, to taste tastes, to have… because I buy special… I carry it in my bag and it’s usually mint, no, he likes mint, he’s always loved mint, but it’ll be cherries, you know he doesn’t like strawberries, not to taste, but he’ll eat strawberries, he’s a funny guy. I mean he’s still not, he’s still the same thing so, and as soon as you put something tasty on his [lips] like, he’s licking his lips. 

So in my heart I’m not, I’m not giving up on that. I don’t care whether… I’m going to fight for that, even if I have to raise money and get specialist care for him to have it. He will swallow, one day, that’s my achievement now he will be, he does swallow sorry, but he will eat, he will taste food. The ability, whether it’s mushed up into baby food that he will be able to enjoy. But he also, he loves food, I’m a cook, he had, you know he was always… his food was always one of his passions and I’m not going to give up on that one. They keep saying, alright speech wise and that, but you don’t need speech when you’ve got telepathy with your son, you don’t need words, you don’t need anything. You just look at their face, they say your eyes are the mirror of your soul and I can look at my son’s eyes and I always know what he’s… a bad day, a good day, a confusing day, or like, or anything. I just look at his eyes, he talks to me. 

But the one pleasure I want to get back to him, he might not have a lot at the moment, he doesn’t have anything, but just the ability to taste food. Just simple things whether it, like tomato soup, something that’s so, that he can, because he smells the food, his mouth goes when the, you know, that’s why they hide him in a room, they close the curtains, they leave him in a room, because as soon as you, like when I eat mint, because I smoke, obviously I always donate mint. He can, he knows I’ve eaten, you know I always say, “Ah” because he used to be a smoker, I say, “You’re so lucky, you’ve given up so quickly.” You know I make a joke of everything, I dance in front of him, I sing in front of him, I can’t be miserable in front of him and that’s why I’ve always advised if you’re not in the mood, do not go and see, because they sense it. And they are so innocent, it’s like they think they’ve done something wrong. 

It’s not their fault, it’s your… so I never go when I’m not in a… I cannot be me. I’d rather sacrifice maybe a week not going, because I don’t have, I have stuff sometimes and when I’m ready he knows I’ve been and that’s all it takes. 

And I did that once when I was not myself and he was so sad and I thought I’m never going to do this again. He sensed, because he just looked in my eyes, I always, eye contact and he doesn’t recognise me because when he, I’ll not say he died, but when he went away from me I never wore glasses so he’s fascinated every time I have to get my reading glasses out and he likes looks at me. And I’m trying to get him to play peek-a-boo. He’s getting there, but he, I’ve got him now to kiss me, I always say, “Come on, pout your lip” and he pouts his lip and you can hear that [kiss sound] that’s an achievement, little achievements. It’s, but I’m not giving up from the, whether it’s just tomato soup, anything, he will taste.