I think the worst decision that we made was to, was to intervene. But, as a number of close family and friends said, the what-ifs just lead to madness really. Because you can’t answer them. And you can only, you can only make because there isn’t a right or wrong, there isn’t there isn’t a clear cut answer one way or the other, because we don’t know. Had we said, Actually, don’t intervene, given that operation was being offered only sort of three days after shed had an enormous stroke, you haven’t even actually processed the fact that the original, sort of status quo has gone. And so it becomes very difficult I think you’re, you’re given no time, undoubtedly because it’s a medical emergency, you’re given no time to react to the first kind of climactic event before you’re required to make a kind of, life or death decision.

And I do feel that, you know, we could have been, I well, I don’t know enough about it medically, but I do wonder whether there would have been ways of, of kind of delaying I presume not if they had to telephone us on a mobile phone and say, She will die if we don’t intervene. but I do think it would have been in retrospect the better decision.

In effect saying yes was only a choice to delay death, and potentially to, to produce a what must for mum have been a much more protracted and unpleasant experience than it would have been simply to lapse into unconsciousness and die that night. But the speed at which you are required to react, and the kind of the fact you’re suddenly presented with these extreme situations is, I think is would have made it very difficult to say, Don’t intervene. but I think that, that would have been you know, in hindsight that would have been the right decision to make, but it’s not one that we made, so (in the clip)

My dad certainly in his darker moments over the, did say that, you know, weve actually condemned her to a kind of living death, having not been brave enough to take the step. Which I think is, is, yeah, I think that’s athat is the end result of the choice we made, but I think we would have to, you know, in all fairness recognise that we made the decision that we felt was right at the time. And you can’t do anything other than that(no cut clip)

Because given the state in which mum was which I suspect was, physically incapable of any, physically incapable of expressing any response to the situation, but I don’t think that meant that she was not that she wasn’t aware of the situation. I think she was very much aware of the situation and certainly though she didn’t have speech and she had, no movement as far as we could tell, apart from being able to move her head from side to side. She didn’t she had a little, squeeze in one hand, but couldn’t move arms and legs, couldn’t, sit up or kind of move around in the bed at all, that she would have been she was nonetheless kind of very aware of the situation I think. So that was how it went. And, in my own mind I’m not convinced I’m not sure how little speech and, interactive ability mum had. Because my feeling is that some of it was, a choice not to interact, or to appear to be asleep when visitors came at certain points. Because I would imagine that the situation itself was, you know, almost, almost unliveable.
So, yeah. It was kind of curious. I think it I don’t know how one would classify the level of consciousness that mum had, which I think was actually variable, and I think that some of that variability in terms of responsiveness was actually a choice to shut down from time to time because it was easier to do that than to kind of deal with the reality of the situation. But there were a couple of occasions I think one time I was trying to think one time when I went, the a couple of times when for example she responded to one of my children with a huge smile, but then was completely unresponsive when another of us kind of turned up into the room and so forth. So I have no idea whether those were kind of, you know, what one might say is moments of illumination in an otherwise kind of unresponsive state. But my instinct is that those were kind of chosen responses in some senses to a very, very difficult situation.

Is it something that well have to do? Because these are all it’s unbelievable that a person like my father had to suffer so much, and for what reason.

What would you have liked to have happened?

Just the way my father actually gone in the hospital. In a second, in front of my mum and in front of my sister. That was it. And I just don’t know why did they revive okay, they revived the heart, fine, but they knew that his brain is gone, why did they put him in a life support? Why? He went in his own way. And then everything boils down, my mum is like, Why did we take him to the hospital? Why did we take him to that hospital? So this why, why, why, why, is never ending. And why he needs to suffer like that, it’s just everybody’s dad is special to them, but my dad was really special. Because he was very happy, he was very content, very happy, never had any regret over anything. So why should we have to regret on every little decision we are making at the moment?

I oh gosh. In terms of yes, in terms of going through the; yes, you have to keep that person alive at all costs, you must, you must, you must, I would take that decision really, really carefully. I possibly wouldn’t make that decision. It might make me taper my thought into gosh, you know but then [sighs] I’d want that person to die, I would not want to have to make that decision. But I I think knowing what I know I would not want anybody to go through that particular process. I don’t I wouldn’t want that actually. I wouldn’t want that. I don’t know what how you would manifestly prevent that, but I yeah, I would not want that, if it was absolutely known, I would not want that actually.

Because?

I think it’s, I just it’s just not I think well, speaking selfishly, for the relative, it’s unpleasant. It’s just not nice. And I think, you know, would that person really want to be in this situation? No, no. I don’t think anybody would want to have that life force taken from them, you know, in that way. And I you know, that’s a huge decision statement, sorry, to make. But I couldn’t you know, that you have no control, you have no thought, you have no cognitive reason at all in any way, you are there. And I suppose it’s been called in a vegetative state for a reason. And yeah, I would, I would not personally I would not want to do that. I would you know, and I’ve said to all my family, you know, push the button because I do not want to be in that state. And as a life force I just feel that and I don’t know, you know, it’s putting that burden on upon somebody. But and it’s a burden. And, and, and the whole process is a burden which you never, ever let go. You can never however you know, ten years down the line you never, ever lose that burden. It is literally on your shoulder and you never, ever, ever lose it. You never time is a great healer is a good old adage, it is. But you never lose that. You never lose that person in your mind because you always remember that person and that body wired, and that your rationale for making the decision, for whether it’s right or wrong, and you never it’s a burden that you have to carry.

And it you know, it’s not you know, there are people have a lot more difficult situations. But it is an entity in your life and it never goes. You don’t think about it daily, but it is not daily but perhaps every other day, theres something that you I find that theres something there that you know, I don’t know what it is, a comment, a throwaway comment from somebody, a flash on the TV or something. Or, I don’t know. Or something absurd that you sort of and you oh gosh, crikey, and you never lose it. I don’t think you ever lose that burden. I think it’s a burden, it’s something you have and it’s a burden.

I think it was really difficult for me. It’s really difficult to say that it’s what you want to happen. It’s really difficult to be the instigator because it sort of feels wrong, even though you know it’s right in this very unusual set of circumstances. It just feels so sort of socially wrong to want to bring someones life to an end. I felt like a murderer. I still a bit like a murderer sometimes [cries]. It’s one of the reasons why I hate telling people about it because I’m always really scared that the person I’m telling about it might be looking at me and thinking gosh, you know, you killed your brother [cries]. Did you have to kill him?

Because it’s in that sense, it’s abhorrent, isn’t it? It’s everything you’re brought up to believe is a good person says that you shouldn’t do this and yet you have to because this situation now exists. So really there needs to be some way of coping with it so that so that people don’t have to feel like murders because I don’t think people should have to feel like a murderer, should they? [Cries].