Family Experiences of Vegetative and Minimally Conscious States

Determination and pride

Family members we spoke to were often absolutely determined that their relative would improve or get the best quality of life possible. There was sometimes a feeling that the family had united to defy the pessimism of clinicians who doubted that the patient would regain any quality of life. Sometimes doctors were seen to have made judgments about quality of life that were alien to the family’s cultural point of view (including their religious faith, or views of family life).

The message about serious brain injury generally in the media is that it may be a long road to recovery, but that love, determination and patience can get you there. This was a message that many families had taken to heart, and worked hard to make reality. Helen says “I was absolutely convinced that there was hope … if sufficient love, sufficient determination, sufficient faith, were thrown at it” and Cathy comments: “I think my mother possibly was a doctor in another life - she read up on everything”, she described the family’s dedication to home caring and added “I just had this great effort of will. I just believed that by doing all this stuff that it would all be okay in the end.”

Some of those we spoke to saw their determination as, in retrospect, misguided in a hopeless situation, but still felt they had had to do everything they could to fight for the possibility of recovery.

Others, however, felt their determination had born fruit, and if the person had recovered some consciousness, they celebrated any ability to smile or take pleasure in the smallest things in the most extraordinary of challenging circumstances.

The progress of the injured person, in defiance of expectation, was sometimes talked about as a source of pride. For example, although Verity talked at length about grieving the loss of her son (see ‘Grief, mourning and being ‘in limbo’), she also takes pride in his ability to survive and make progress long after he had been “written off”.

Verity has learnt to take pride in her son.

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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.

Similarly although Peter, Olga and Andrew are devastated to see how much their brother/brother-in-law has lost, they take pride in everything that he can do (see ‘Recovery’). Peter explains that although caring for Theo at home is very hard (“it is like a prison sentence”) – he and his wife gain great satisfaction from the task they have taken on: “when you see how much progress he’s done, it makes it all worth it.”

Last reviewed December 2017.