Well, I mean, I equally I think it’s I think it is about for them not being fearful of what the relatives are thinking. I it if there can be a way that it is for every relative that is in this terrible situation, that you can have a professional, a medical professional, that sits down and says, This is this, this has happened. The result is not going to be good. This is your child, your mother, your father, your sister, your brother, this is bad. It’s going to be this if you progress this course of action. And that’s a hard thing. But I think if I think just talking really and being honest. And I think it’s accepting that people will not like what they want to hear, without any question, because no one wants to hear that. Because all you want is the best outcome. [Intake of breath] And I you know, I guess it’s about being Bruce Lee frank actually. And I know it’s awful because you know that person doesn’t want to hear that, that person does not that you’re talking to, does not want to hear that. But it’s then going away and that person to come back again and say, Gosh…

You know, and I think also, it’s, you know, the elephant in the room is your loved one. And that loved one has got to be Kate or Jane or Suzy, what would Suzy think, you know, including that person. Because one doesn’t because they can’t. So it’s not a real message. I think I you know, it’s really it’s about honesty on both sides. One on the clear medical prognosis and for a relative, a clear prospect of that isn’t this is the situation. And this is not going to be good, this is not going to be nice, it’s not going to be, you know, a happy ending.

I was probably hoping in the back of my mind, that she would take the initiative, she would have a heart attack and die. And that would be the resolution. Not that I would have to you know, this or she would have another I think it was mentioned that she might have after wed withdrawn the stroke anti stroke tablets, my thought was, shell die. Shell have another severe bleed or I’m not even sure how it works. I thought shed die. That’s fine, that will happen and she will die, it’ll be fine.

And her dying from a stroke or a heart attack would be better because—

It was her decision, not mine [laughs]. It was, you know, the body’s saying. Not me having to say, make this blasted decision all the time. Her body giving up because it was just giving up, it had said, I’ve had enough of life, I’ve had enough of living like this, that’s it.

Yes, I think it would, yes, I think it would. Yes, I think it would. Yeah, I [laughs] simply by going back because really you just don’t want to make them [the decisions]. You just don’t want to. And really, you know, you do want somebody and actually having, having been asked that really vital question actually, what would this person, you know, what would this person have wanted. You know, that is a really vital question actually. Because you’re, you’re including that person who can’t be included. And you’re actually thinking about that person.

Because really as much as you are thinking about what you think is you know, putting that turning that around and saying, what would this person have wanted? I think probably would have an impact on your thought. Because I think your knee jerk reaction is to preserve life, you know, what if, what if, what if. Certainly for me that was how I felt. Perhaps if someone had said, What would Kate have felt? Would she want… you know, I would have, I would have drawn a breath I think. My knee jerk would not have been so reactive. I think I would have thought, oh, gosh, no, she wouldn’t. She wouldn’t. And yeah, that might have had a much more directed approach actually.

It might have allowed for non-sustaining life?

Yes, I think it’s possible, yeah.

So did your mother have any kind of that, that decision and the tube coming out, did she have other infections at that point or—

I yes, I think she had. I think she had I don’t remember exactly. I think there was a point that the PEG was just not couldn’t be used, I can’t remember exactly what, I think it was just [intake of breath] I don’t know what had I don’t, I don’t think it was very good.

And did they write to you, ring you, how did—

Ring, ring.

Right.

Yeah.

And can you remember what they sort of said to you?

I think the doctor was just very nice and just said I you know, this I think I said before, he seemed to know that so for whatever reason, I think he would go I think he went once a week to check. I think that’s the standard sort of protocol, or once a week, or I can’t remember. But, you know, regularly. And I think this was the sort of last I know thered been problems with the PEG and I think this was the last issue. Shed had terrible sort of infections I think, and they’d tried I think had they tried to put it in another place or I can’t remember what had happened, but I think whatever, this was the last resort.

And I think also he was very nice, he was a very gentle man, and had said, This is, you know, this is not going to be long. And I think it wasn’t just the PEG, I think the body had however that happens, but I’m saying in my layman’s way that it was just shutting down I suppose and, you know, couldn’t take anymore. And he yeah, he was a very, very nice chap actually. And just sort of said, I think it will be… you know, I think it she was it was longer, she lived longer than he said. Stubborn to the end. But, yes, that was you know, that was not nice I have to say, yeah, I didn’t that was not pleasant. You, you know, I wished there I don’t believe in euthanasia but I [laughs] you know, you do think, gosh, crikey, in this situation that’s not good. That’s not good.

What was not good about it?

I think it was just that dying because of you know, just your last semblance of life is withdrawn from you and you’re just a piece of meat on the table withering away. And literally withering away, it is really quite an unpleasant experience. Not nice at all.

So you saw her become thinner?

Hmm. Yes, it’s not, not nice.

And did her face change?

Hmm. Yes. Yeah. Yeah.

So you don’t believe in euthanasia, but in this situation maybe for her it would have been kind or—

Well, I yeah, kinder I think. You know, it’s there, there comes that point I think when you actually realise that person isn’t that person anymore. That this person it’s just a body, just a body on a slab, almost. The bed could have been a just there, as much as serene and peaceful, but this sort of [intake of breath] sucking of life was just awful. I went twice to see her and the first week obviously wasn’t so bad, the second week was not particularly good. But yeah. Yeah, that was not and that’s the only thing, you think, oh please, you know, deal with this, because that should that’s not nice, it isn’t nice. And it’s just not it’s not nice for me but, you know, we don’t know, do we? We don’t know all the answers. We don’t know the feelings. As much as we think, you know you hope that the body just is internalising and that’s it, it’s non functional, knows no pain and there is nothing. One, one hopes that. But I think that situation is not I wish there could be something that could stop that. I don’t know what either.

So it left you with memories of what shed been like at the end that were difficult?

It sort of that no, I chose that I’ve only just sort of thought about that now, but I don’t actually think about that anymore. That’s not some I think that was perhaps the body’s very clever and I think also it’s because that wasn’t her. I didn’t as much as for three years that wasn’t her [laughs] but there was, there was some, some resonance of my mother, because she was alive. And I think I didn’t see that as my mother, you know, that those last two days. I didn’t see that last bit as Kate. I did not, it was just a person going through this event. And I didn’t you know, I did not think, Oh that’s mum. That was I didn’t think that. Because it just takes that away. I think maybe your mind just says, well, were not going down that bit. Well do that nice bit there. Perhaps it’s a very good caveat, you know, that’s fine, you’ve got the bricks here, you do that bit, and weve got you behind.

The funeral, that was it was the funeral was just an addition. I because I’d said my goodbyes it was I felt that that’s what she would have wanted. And, and I suppose for everybody, her sister, you know, my children, me, it was what is needed as that finality, that literally that full stop. That celebration of that life. And which we did. We didn’t talk about the last three years. People spoke about her being this person here and that’s and that was yes, the funeral was a lovely funeral actually. And we went back with a group of us and had a big lunch which I knew she would have liked. And I have, I have goodness comes from that. I wasn’t really sad. It was just, I want to do this, she would have wanted this, so I must have this. It is important, she will want this here, she will want someone to read this, she will want people to wear black, she will want people to have formality. She will want this blooming reading, shell want this [laughs] blinking hymn, [laughs] you know, I knew exactly what she would want, and the formality and the structure of it. And she had that. And, and it was, it was a celebration of her life. The readings were beautiful and about her and fantastic, positive. And it was good. It was good. I wouldn’t go so far as to say it was a knees up, but we had a jolly good lunch after. And, you know, it was, you know, Kate, you old bag, but it was that was and the process, it was the process. And that was that. And the day after my life started sort of again.

And what technically did that involve, the decision? What was the intervention they needed to make in order to keep her alive?

The it was putting in the feed I think through her stomach. I it’s call I don’t know the term, but it’s a and I [sighs] it was that was yes, I presumed that was that. Which I didn’t really realise actually, that that was, you know, you know, the significant, you know, [sighs] you know, I don’t know what the word is but or the significance of that if you like. Because that in effect kept her alive. She had I no, her breathing yes, I presume it was the nutrients through the stomach, and various pipes, you know, obviously. [Intake of breath] And that was, that was, you know, I you know, is that, is that all really? Gosh. But, I mean, it wasn’t all because it was major surgery for somebody that you’ve that’s, you know and the problems that happened with that, you know. Has to be removed occasionally, you know, it’s absolutely horrid really.

And I thought, oh, is that it? You’re not going to do heart surgery [laughs] or you know, I thought this is going to be a sort of major I didn’t realise that that was that, that her breathing was fine but in order to keep her alive she had to have this huge intervention, you know. Which perhaps it isn’t huge, but to me, you know, that’s it was the food to sustain her. Not beeping things and hearts and [laughs] it was, it was, you know, crikey, really? And, you know, it you know, it’s a major operation I presume, but or not. But I, I, you know, I was really sort of surprised actually. That but it, it’s major because that is life or death. That, you know, requirement of nutrient is life or death, remove that, that person will not live for more than a short time.

Well, I wonder, I wonder I mean, is it true that [laughs] is it true that hearing is the last sense to go, I don’t know. Sometimes there was a flicker, sometimes there was a movement. I don’t know, I don’t know. But I did feel that perhaps for my own self that she heard what I said, and I did I was able to say, I love you. I don’t like you, but I love you [laughs]. Which I still can say, you know, that it was yes, it was but it’s, it’s yes, it was a I think oh, it’s a real difficult one actually, yeah, yeah, yes. Don’t know. It you carry a lot I think with this sort of process. And in terms of, you know, guilt, how, how why, you know, how has this happened? Should I have done something? And certainly for me being an on the only child, oh I should, I should have stopped being so pig headed and picked up the phone and it was too late. But those three years, although it was difficult, I sometimes absolutely dreaded going down to [the care home], opening the door and seeing this person in this bed. You know, it was you know, sitting down there and talking through about, you know, nice things as well, not just my anger [laughs]. It was it was a process, and the process was good. You know, the difficulty of walking in and the huge amount of angst and then it was sort of washed over, and I would leave thinking, [sighs] it’s okay, it’s okay, it’s okay. Until the next time, you know, but…

So tell me about that what’s the source of angst? Tell me about

It’s [sighs] it leaves you feeling very helpless I think. Because, I mean, [intake of breath] initially you want you just want a solution. Yes, of course you can fix it, you know, that’s the thing, of course you can. You can sort this out. And I just thought, No, of course it can be fixed, theres amazing things you can do. You know, sit somebody up, it can, it can happen, you can sort it. And I think it’s the sort of helplessness when you see somebody that you think, oh, you know, ah, [sighs] sort of, I want to shake you, you will you know, do something, you know. And it’s it took quite a long time I think to realise actually that this was not going to you know, mum was not going to get better, she was actually going to get progressively worse, or stabilise. And [sighs] it’s I think theres just nothing, absolutely nothing you can do.

And also because of the I suppose the invasive amount of, you know, pipes, you know, that kept were keeping her alive, you know, it was difficult to [sighs] you know, there was a sort of fear of touching somebody or, you know, it’s such an alien situation really. But you get used to it. It took time, but that was you know, the awful thing, you just get used to it, okay, well, that’s fine, you know. Or, you know, you just walk into the room and, you know, theres bags and, you know, and you just get used to that body being there and touching that person. Yeah, it’s the first, the first months are very difficult I think. Very difficult, you know. That can’t you can’t go on. That person has got to do something.

Theres you know, they’re going to sit up in a minute and say, Oh, it’s fine, you know, or theres going to be a miracle drug and, you know, that severe bleed is, you know, the blood will be, you know I don’t know, sucked out of the head, some sort of crazy notions that you have. And yes, yeah. It’s a process. It was, it was yeah, it wasn’t very nice actually to be honest, it was not very nice. Because it’s, yeah, you have no authority or control or say I think, which you can’t, you know, as a person, and you have professionals, and you’re not, you’re just dealing with that person really. It’s yeah, I yeah, it’s difficult. It was yeah, it was difficult.

And she looked very serene and peaceful, I think that was the great thing. Through all through that, I mean, absolutely flawless skin. And act the other, the other sort of it was sort of distressing in a way, but I mean, it was just watching a person grow old, but albeit gracefully. But when my mother went had the stroke, she had dark hair, she was seventy, so it was grey I’m thinking ish. But she was very much a person that liked you know, was not going to get grey. [Sighs], but that process of course, she became grey.

Simply because her hair grew.

Yes. And she was completely grey. And obviously because she had you know, the food I suppose was minerals, her skin was absolutely flawless and no lines, but there was, there was this sort of aging process and nothing was done so, you know, her I suppose hormones or something, you know, she had this sort of facial hair. And yet sort of quite youthful, but this sort of very strange sort of aging. Very odd. It isn’t odd, but it’s odd watching it because you’re watching it in as an onlooker. I think it was quite but there was no I didn’t see I didn’t think I mean, it was just peaceful, it was very strange, you know, and you think, oh gosh, you can’t can’t you do something to, you know but I used to buy clothes that she could wear. I don’t know whether that was ever because I think shes normally in a shift for sort of ease. But I felt it sort of almost cathartic to go and buy clothes that she would like.

And I suspect I never found them when she died actually, so [laughs] I think they were probably thought her silly daughter. And I felt that was, you know, even if can you, you know, put a bed jacket on or something, it was that’s a bit of her rather than this person lying in a gown as it were. But I suppose that was that’s quite distressing in a way, you sort of psyche yourself up when you go [sighs] I mean, you sort of get used to it and you sort of don’t. But each time the expectation is not fulfilled really. You never fulfil that, because you never get out what you want to achieve at each meeting. Because you want, you want, you want, you want something and you never, you never achieve it. Although for me it was very, it was very you know, I liked talking to her and telling her off and telling her how I felt. And I could do that because she didn’t say anything back to me. So that [laughs] in that respect but I always left, you know, wanting. You never you go, psyche yourself up, do it, you know, chat, chat, chat.

And theres always a you know, you never that sense of fulfilment is never you never get that. And it lessens and lessens and lessens. You still want it, because you still have that yearning hope, you know. And you never get it. And as the years go by it diminishes and diminishes. But you still there is still something that makes you go back to visit that person. And for me, for my mother, there was still some pull, you know, still every single time there was something. I thought, yes, there will therell always be there never was really.

A yearning hope for…?

I don’t know what it was. Something. I don’t know whether you know, I don’t know. I don’t know what it was, but I always felt [sighs] I don’t know, I just maybe next time something. And you know realistically it won’t happen, but it’s what I think it’s almost what pulls you to see that person as I don’t know what, but there is going there is I don’t know, I don’t know. I can’t really explain it. It’s what pulled me back, this whether it’s this sort well, it’s unconditional love, as I said. But, you know, psyche yourself up, sit and chat and stroke, and theres got to be something. Is she listening? Can she hear? You know, can she feel my, you know, my hands on her face, or is that and you always feel unfulfilled. I always felt unfulfilled. And that is just because it can never be fulfilled. You can never have that little bit of something that you want. It is not possible.

And if I asked you to imagine it or fantasise about it, what would it be?

Some something, some recognition I think. I think that’s all you want is something that that person would just a lift of the finger. Or, you know, something that, yes, I know you’re there. That I think is but I mean, that’s a great romantic notion. And you know that it simply can’t happen. But you want that storybook. I wanted that storybook, I wanted that recognition that I Kate knew I was there. I never got it because it pract it just wasn’t ever going to happen. But I looked for that and that, that I think is very difficult, because you never, you never know. Oh, hearing is the last sense to go, is it? Or can you assimilate what you’re hearing, or is it just bluuuuu. You know, how does one know? So that’s great, you know, nurses the nurses said, you know, Hearing’s the last… well, is it? How do you know? How do you know? And what is it? Are they hearing you know, is Kate hearing Emma speaking? Realistically? You know, of course.

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.

Would you want a feeding tube in for yourself?

No. No, I think having I mean, I’d want the basic to make sure that you, you know, are what is your prognosis. If it’s not good, that’s that. And I would take that away from the children or anybody, you know, because this is what I want. Because I would not want to be in that situation. That’s the end of that. And I’d want them to know that I wouldn’t well they do know, I’ve said, you know, as nice as you know, without upsetting them, that is what I want, and you know that I would not want to be like that, you know, like granny. And I mean, you know, it’s, you know, it’s a very difficult one, isn’t it? I, I only hope that, you know, you mustn’t be fearful of it. I’m going to live until I’m eighty-eight darling, it’s absolutely fine. But [Laughs].

But should I have a stroke at fifty

You know, so it’s yeah, I mean, you don’t know, do you? I mean, you can’t I mean you know, I hope, I hope, I hope, and you probably know, that, you know, you know, one thing, that if you can have the best what is it the best of care meeting, that is one step forward. And that should be driven out to every single family that is having to embark this. Really, really think about that. Because I think it would make such a difference. It won’t make anything better or easier, but it will make a difference. And perhaps a decision, you know, I it was easy to say, but I mean, it isn’t easy. It isn’t easy. It isn’t easy.

Can you remember what was said in intensive care beyond, Theres nothing we can do for her?

To be honest it was quite a long time again and I [intake of breath] I don’t think I was really I think I was in a sort of whirlwind of shock actually. I don’t think I listened really to what was said. You know, theres a sort of bleed, you know, and there was a I mean, it was a very thorough process and the I presume she would have been a neurosurgeon, the consultant, was very good and very matter of fact I seem to remember. But I was not I don’t think I was really aware of what she was saying, you know, to be honest. Because it was so over my head. And I know that that is absolutely the correct process because, you know, you have to tell the family exactly what is happening. But I you know, and all the details around that, and diagnosis and subsequent prognosis I suppose.

But I wasn’t aware, I had absolutely no idea. And I don’t think wanted to hear all that at the time, it was just you of course you can sort of course you know, after all that was said, you know, yeah, absolutely, they’ll be fine, it will be all right. [Laughs]. No [laughs]. And but I don’t think that hit until I don’t think that did hit until the, you know, You have to move your mother, you know, you need to move her, these are the places that you need to look to. That was, All right, okay. And, and then you have loads of questions and you don’t ever really ask them. I never really asked them. I had too many that I just went round and round and round and round and round in my head that I never actually asked.

And I thought, that’s a fear, you know, I never asked any medical person, you just deal with the day. And it was I suppose I possibly in a very sort of low key, you know, what’s going to happen, but I never pursued it. You know, I think it’s a fear of [sighs] it was an ostrich thing I think, I didn’t want to, I didn’t want to know the worst scenario I think. I just accepted it as what was going to happen. Had no idea of that the that it was going to be her life was going to be this way and for the length of time that it was to be honest. And I wonder if you did know whether you would be any better than not knowing. I don’t know, I don’t know. It’s I guess it depends on the person, you know, perhaps some people wish to know how long, you know, what is the level of the quality of life of this person and people perhaps, you know, different want to know. I just I didn’t pursue that at all.

So it was fear of—

Well, I think it was fear of knowing the worst case scenario. So if someone had said and I don’t possibly the medical profession can’t answer that question, I don’t know. Someone if the consultant had said, Your mother is going to be in this state for the next three years, she will not be able to speak, she might be able to hear. That I don’t that’s quite distressing, and I don’t know whether I would have wanted to know that.