When the kidneys aren’t working he can’t have feed or fluid much, because otherwise it floods his lungs. So if hes not you’ve got to balance the input, output stuff.

What input, what comes out. So, you know, we do go through phases where hes not on the feed, but then if hes surviving you have to put him back on the feed because otherwise you’re starving him unnecessarily. That’s what the law says, lah, lah, lah. You know, you have to balance it. I can understand in a way, but at times you think, why are we putting that feedback on? Why are we putting that feedback on? And they say, Because it’s against the law for us to keep it off, because hes sustaining on his own. Were not doing anything for him, hes still going, do you know. Weve got to feed him otherwise it’s against the law. And so were stuck in a very sticky place.

He shouldn’t have been sustained after the second one. When he didn’t blink for a week and when he didn’t do anything again for the next year something should’ve been done.

And then the problem is, you have a very small time to act as a clinician, to whether you withdraw and stop the treatment. Because after that then you’re in a legal area where you can’t remove anything without a court order. So if you’ve got that time to act, then by god do it. Because after that were stuck with it, were on that journey for the next ten years, because then were in the murky court order phase and we can’t get the food and hydration withdrawn.

So if you’re going to act, if you’ve got that golden window to say, This guy’s not we would like to remove ventilation, we would like to remove hydration, we would like to stop active treatment. Then get your boards together and start doing it. You know, I think they have so much compassion for the family, but they’re using it wrong. You know that compassion is saying, You know, we care about you, you’re obviously distressed [whisper] were going to give him a bit more time. It’s like saying, Well if you can see quite clearly that hes done, then you should stick to that.

Because seeing him alive became harder than seeing him die. You get to a point when theres no improvement and you stop being able to convince yourself there is. When they are constantly hooked up to IVs and having painful UTI infection, painful, you know PEG changes, which we all know bleeds and are sore every time they do it. You know, they’re having catheter changes, they’re having and whether that’s, you know, the one in their belly or the one that, you know, the actual, the one that goes up, that’s painful and uncomfortable. They’re having physio that often is painful and uncomfortable.

They’re going in and out with these IVs, they’re getting these infections that are painful and uncomfortable. When they spend their entire life in a state of pain and discomfort, that’s I think you only accept it when you can see that actually this isn’t a life worth sustaining. It’s not a life they would want and it’s not a life I want for him. And no matter how much I would like to believe he would have a miracle and we would see him recover and how much joy that hope would give me

If you can’t see that anymore and you realise that death would be better now I think that’s when the acceptance comes. Do you know, and that there are better ways to theres better to show I love him than to prove I’m sustaining him. You know, he knows I loved him, I’ve done it. I’ve got my medals, I was there [laughs] I supported him. I fought for him. I fought harder than a lot of people have fought for people, you know, loved ones. I’ve been through the mill, I’ve had the lawyers. I’ve got the nice nursing home, I’ve done the I’ve done the fight. No one could ever say I did not fight for him. Don’t need to prove it to anyone, because I proved it to myself and I proved it to him, he knows it. He knows that I did everything I could. But there are some things that we can’t control and you either accept it or you don’t. There is no in between.

And when you come to a point of acceptance, you give yourself you go through a big grieving process, it’s not easy to come to acceptance. But, you know, you accept that they are not coming home. They are not coming home. And then you can grieve that. Because for a long time you believe they will. You save a space for them in your life, because you’re like, they’re coming. Some people do that with their whole houses, so that they can move in, do you know, with wheelchair access.

But there comes a point where you say, They’re not coming home. And you can grieve that and that can take a long time, you know, months. Spend as much time as you need in the foetus position and ball your eyes out and say, But I love you enough to let you go. And that’s where were at. I just wish they’re [xxxx] [laughs]. It’s enough to be there. So yes.

It’s things like they help you understand more of what the body’s doing at end of life and why the things you’re doing is actually kinder for him. Everything’s about making things kinder for him and not [slap, slap, slap] sustaining life at all matters. Which can be at times very aggressive. Going through the hospital treatments and surgeries and everything. It’s all aggressive, [slap, slap, slap] sustain life, keep it going. End of life care is very, very gentle, it’s very, very it’s lovely, it’s really nice. It’s really comforting and they just make sure hes okay. Do you know, anything he needed wed have. You know, especially when it comes to things like the pain relief.

And theres drugs you didn’t even know existed for stuff like that. The foam one, or whatever, it makes it all foamy. I didn’t even know that existed. You know, I think that’s beautiful that we have that. Because, you know, I knew there was one wed had it in the hospital the one that makes you pee it out. But with the fluid on the chest. But I didn’t even know that existed and they’re so there, ready to help, to make him comfortable.

But I don’t think I still don’t think it would be heard. I think I think if we went to those families now and said, This is what happened to us, they wouldn’t stop fighting. Do you know, they wouldn’t, I don’t think the families would make that choice. I think the medical teams could, but I think the families they can’t and who would expect them to in that situation.

You they are not in a place where they will ever they will always be the one family that’s different and who can take that away from them, because I’ve not found a family yet that’s seen otherwise. Do you know, we all think were the one family that’s going to change the world. That our story’s going to change neurology forever and were not and I think it’s almost whilst I think it’s really important that families have an input, I almost think it’s a dangerous input that they have because they are not in an emotional state to appreciate where this journey’s about to go. And I think that we have a lot of intervention, which is amazing and it does give some people the chance to go home to their families. But you often see when it’s going that way and when it’s not. And we were told that it wasn’t, and of course, we believed we were the family that’s different, because we all do.

But I don’t think if we even worthy information that we have now, even with the experience I have now in my own situation I think if if future me went back to myself and said, No, this is what’s going to happen, don’t do it. That person there, my old self would say, I’m not hearing it, I don’t believe it. I don’t think any family will ever hear what we have to say because it is the human condition to instate desperation to have hope rather than despair and who can blame them.

Go and make your life, and it’s like, but you know, that’s not as simple. You know I spend a I go to the hospital, I come back, I spend half an hour on the bus sobbing my heart out and in front of people. Do you know what I mean it’s not [laughs]. And I’ve done that a number of times, walked round the town and something’s just triggered it [cry noise]. Do you like I walked round town because theres no controlling it and they just I think they think that I’m just getting on with life. They have no idea how much of the you spend all that time trying to create a new life, but you also spend a good amount of time in the foetus position [laughs], do you know? A good amount of time. And for me, that’s me coping with it. That’s me acknowledging what I’ve been through and releasing what I’ve been through, instead of denying it and bottling it up. Suppressing it and then getting ill, you know. So, yes, I spend a good amount of time in the foetus position, but not as much as I used to. Not as much as I used to, but it has been a hard week, with all that stuff over there and I did cry a lot on the bus.

My daughter’s already got a father in a vegetative state slash minimally conscious, but you know it’s at this point. And shes going to go through her life without a father. I don’t want her to have to support her mother like I don’t want to have her to have to do what I’ve done.

And I don’t want anybody I know to have to make those decisions for me. I have told my family though that I don’t want to be kept too long. You know, they know that. I wouldn’t, I wouldn’t do it. You know why, I wouldn’t put my family through it, that is the truth of it. Even if I was really going for it in there and I was in there wide awake, unable to do anything. You know what, I’m not doing it to them, I’m not doing it to my daughter. So I would not have it for myself and I think that should be a key message to a lot of them doctors, because you know they wouldn’t do it to themselves.

After that second cardiac arrest, there was barely anything ever again. I never have ever established a concrete form of communication. There had been times when I think he closed his eyes once as an acknowledgement and it did become more recognised that he did do that sometimes, but it wasn’t consistent and I there were times over the last year where I’ve sat and I’ve said, Did I make the right choice? We resuscitated him because we thought, no hes got to have a fighter’s chance, how dare you give him a DNR. But actually the brain damage he sustained the second time has been catastrophic. Absolutely catastrophic. Hes never moved any of his body willingly. I mean you could say a twitch perhaps, but how would we ever know that it wasn’t you know, hes had so many spasms. How would I could never know if hes ever tried to communicate with me, ever. Because theres never been anything concrete. I don’t believe that he had any outward signs. And I do regret that, you know, well no I don’t, I don’t regret it. At the time I made a choice for him that I felt was right at that time.

But I now know I could never put another one on him and should I be in a situation with anybody else I care about, probably wouldn’t do it. Even my own, own daughter. I could say that, if she was ever in that situation, which god forbid I hope shes not, or whatever’s up there, you know. But I just couldn’t do it to another human being what I feel like weve done to him.

Don’t get me wrong, at the same time I don’t blame us either. You know, we made every decision at the time that I felt was right for him and I don’t regret a single one. And I moved with him as I felt his spirit was. Do you know like, if I felt he was in a fighter’s spirit I fought with him and if I felt he needed to we needed to step back, I did that too. I have always gone at the pace I felt he deserved.

But having seen the damage of not taking off a DNR, or removing the DNR I think they were right to put it on him. I can’t regret it, what can I do now, we did it. But I definitely should I repeat this over again in some weird parallel universe I would not remove it, I would let him die on that second cardiac arrest.

I’d had a meeting with Doctor [Name] back in 2010, one of our consultants. And he had said to me, you know, How do you know when how would you know that it’s enough, do you know? Many things happen to people when they’ve stopped fighting, like they get recurrent infections, and [partner] doesn’t seem to be getting any better, and how would you know? And I said to him, I would just know, I would just know, I can’t explain it, but I’d know. In 2010 [Patient’s name] was still fighting. In 2011 [Patient’s name] was still fighting. Come 2013, that his voice was in my head, Doctor [Name] voice was in my head, How would you know? I said, I know.

And I went to I you know, he went into hospital with another bout of some sort of chest infection. And oh my God I was shaking, right, and I decided to go and voice it to the doctors that I didn’t think he should have any more antibiotics. And I said to them that his mother was not going to agree with this and she is next of kin. So I’m just voicing it, I don’t think he should be treated with antibiotics. I think hes had enough.

So, you know, there were things that were leading up to say that hes, hes had enough, do you know. And I said, I just don’t think hes responding to the antibiotics very well, I don’t feel comfortable. And I was shaking, I was shaking, and they said, Okay, we, you know, we hear what you’re saying. And I phoned the nurse up at [the care home] who I get on with really well, I just told them I don’t think they should treat [my partner]. And that was the first time I said it out loud, I don’t think [my partner] should be treated. And I was so upset at the hospital that I’d voiced it. And then they didn’t listen [laughs]. And I was like, But I voiced it, I voiced it. They treated him anyway. They treated him anyway. And it was just like, [sighs] so, you know, I stopped really going up the hospital after that. You know, when he started to go because he kept going in obviously with chest infections and what not, it’s [Name]. Urine infections, the UTIs, the catheters, the PEG, whatever. In and out, in and out. [Name] and so I stopped going, and made excuses, you know, and let [partner’s] family deal with it. Because I just thought, you know, no, I don’t agree with it, I’m not going up there.

So I stopped going up to the hospital every time he went over to [Hospital]. But come June last year he got very, very poorly. Pneumonia – and the microbiologist said, Were not going to treat him anymore. And I was like, Thank you. They said, You we will not be treating him. You can bring him up to the hospital, but as… that’s the team of microbiologists at the hospital said, We will refuse to treat [patient’s Name] anymore because he does not respond to antibiotics. And that was the case. You were going in too often, he wasn’t responding to them, you were putting in like bleach or drain cleaner or whatever, aren’t you? Hes not responding to them. So they said, We won’t be treating him. So when he got this bout of pneumonia, he was very ill. And we didn’t expect him to go the night.

What a relief. You know what, because I’d obviously got to that point beforehand and they were still doing it. And because I think they felt they were in some sort of legal tied thing for a while. And so for them as well they kind of, they kind of just took the decision at that point. And like the microbiologists just took it. Do you know, they just took that decision, bong, put it down. And you know before, that’s the kind of thing I would’ve absolutely rallied against. Who the hell do you think you are? Oh my god, I’m getting lawyers down here. [Laughs]. Do you know like it would never have happened. I did get lawyers, that’s how I roll. But, do you know like, when they did it, it was like a cheer because, you know, I’ve been at this loggerheads of wanting this to happen.

And all the team up there felt was right for him. So when the microbiologists came back with that, it was almost like a mini celebration. Do you know, it’s like [big sigh] “Thank you!” because I truly believe hes had enough. I don’t I don’t say it just because I’ve had enough, and I have had enough. I have, I don’t feel bad saying that. I have had enough. But I truly believe hes had it too. And that’s why it was so it’s so much of a relief that they they kind of isn’t that funny right? That when they make them decisions earlier on, yes? You say, That’s not your decision to make. [Laughs] I’m a part of this process too, don’t you know. And then when they make this decision now, you go, You make that decision, you can have that one, that’s fine. And you don’t even I don’t even bat an eyelid.

It’s been too much suffering on his part and it’s unkind. You know, this is humane to do this, at this point. So, you know, it was a real relief actually. When they it was do you know what it feels a bit like, light at the end of the tunnel. This is the first step of the end. It is that first thing that says, this is it now, this is the home run, were nearly done.

I remember phoning one night and they’re going, [Name], if he survives this night – I just can’t believe it will happen, I really think this is it. And I go, Okay.

Yes, hes still going in the morning, yes hes still going, [laughs] and hes still here now. Do you know, it’s such ridic- you know we get and they genuinely believe this is it. Do you know, and you look at him and you go, Yes, this is it, this is it, I think were here, we can’t come back from this one. He always does.

Do you know [laughs] it’s shocking. And the Doctor [surname] says, We should’ve took him off the antibiotics ages ago, he said, because hes doing so much better without them. So much better without them, hes doing brilliantly. Hes so much [laughs] stronger and he barely gets ill now, like he did before. Hardly at all and if he does it’s so minor. It’s nothing. But it’s definitely nicer to treat him at home. I’m so glad. Do you know what, I’m so glad were not allowed in the hospital anymore. What a relief. What a relief for them to tell us, were never coming back.

Do you know like you never know when your next trip in there is, and for them to say, were never coming back, were never going back in [big sigh], ah. Isn’t that nice. Isn’t that lovely.

But it’s so lovely to know were not going to go there. And it’s even nicer to know, hes not going to die there. Hes not going to die in hospital. I know that, you know, he already did die twice in hospital and we resuscitated him. But [laughs] it’s not going to be a meeting at the hospital. The smell of the hospital. The ward room of the hospital. The nurses we don’t know.

You know that nursing home, hes been there it’s coming on, I don’t know, if we went there in 2011 in the summer of 2011, so it must be approaching three years this year. It’s home. Home. It doesn’t matter that it’s not his first home, his home before that. Anywhere, if you stayed there, that would become home. Even if you work abroad for six months it becomes homes doesn’t it? Do you know, hes been two and a half years, he knows the staff and hes got favourite ones actually and hes got ones he doesn’t like. Do you know like, we don’t see it as much now, but you do notice it. You know, and you think, I wouldn’t want him anywhere else, so what a pleasure that hes not going to die in hospital.

After all that time there when each time you go in, you’re never quite sure if hes coming back out. What a relief. It’s such a weight off your shoulders to know you’re never going back.

By allowing that person to be, you are sustaining a hope that is not helpful. It’s not helpful. It’s an illusion isn’t it? You’re sustaining an illusion and then, let me tell you, the crash down from that is painful and it is hard and it is life destroying. The crash down from the hope, sort of further along the line after everything you’ve been through to then realise then that this was all worthless.

I think they half do it because they know they’re going to go off to nursing homes and they don’t have to face the decision to do it. They don’t have to face the family and say, I’m sorry, this is the choice I’ve made. They’re doing what were all doing. No one wants to take responsibility.

So he wasn’t on long-term pain relief. He was on, as and when paracetamol [laughs].

Anyway, but do you know that he was on so this was the first time weve had actual pain relief and it does make a difference. And I can see it, because he just relaxes.

That dystonic arm thing he come down. The breathing, it regulates. And now the thing is, you can do the SATS level, and it still may be done at ninety, or eighty-nine or whatever. It’s not gained anymore. Sometimes it was even lower, weve had it down at eighty. But hes not suffering, right? I’ve seen him suffer [deep breath]. The sweat, the panic, you know, we had him sat up and he was just not coping. Do you know, his face was panicked, he couldn’t sleep, he wasn’t resting. He was puffing, he was puffing, he was gurgling. The heart rate was shot up, do you know, it was uncomfortable.

Now that he can clearly not be getting much oxygen in, hes not getting much oxygen and yet hes so much more peaceful. It’s very obvious that he is resting, you know, and hes just hes okay with that. Hes not he may not be getting it, but he doesn’t seem to be feeling that.

I can’t explain what hes feeling, I just know when I see him, I know the difference. I know when hes uncomfortable because everything changes. Hes it’s like hes fighting for something. Fighting for oxygen, fighting to get stuff in. His eyes are always searching for something and he just doesn’t seem to be hes fine. I mean that blood pressure, that heart rate is normal.

And now hes always comfortable. He has pain patches and hes just like ahhh. But he doesn’t have physio, because it’s under this hospice thing you don’t do anything that’s unnecessary, right? For [partner’s name], hes very dystonic, do you know, hes got muscle spasticity, it’s painful, so to give him physio, yeah, hes like hes when hes ill it’s a lot less now, you know, it’s probably about there. Because hes not got the energy to bring it all up anymore. But, you know, to stretch him out and do all these things, you’re only really doing that if you’re trying to keep them, you know, for a purpose. Theres no purpose. So you’re causing him pain unnecessarily. So he doesn’t have physio now because it’s painful and we want to make him comfortable, and you’d only do that if you’re keeping them stretched and working because you’re you want to work with him or something, it’s pointless, it’s pointless.

When I made a decision to remove [his] DNR. Two days later, he had a cardiac arrest. That was his second cardiac arrest of his injury and that was so the first cardiac arrest was in May 2010, the second was in September. Well the last day it was like Bank Holiday of August, so that last day of August in 2010. Two days before the doctors had approved my request to remove the DNR that I thought [partner’s name] had more fight in him. So two days later he had a PEG put in, his first PEG, he was a PEG, he had the PEG put in. And it got infected, his had diarrhoea, he lost his electrolytes and his heart stopped. And it was very peaceful actually, there was no drama leading up to that. That whole day he was very calm and we said it was the best hed looked because he had been he obviously had no energy to fight, so hed been very peaceful.

And we got that call in the middle of the night that said, You need to come, and we came and we found out that his heart had stopped for eight minutes. We had been refused entry to ITU and we had to wait for over an hour before we got in. So during that hour, he had no blood pressure and they were keeping him alive by bagging him.

The nurses, they did an amazing job, they stuck by him. Hed had something like two rounds of the [thud thud] pads and CPR and stuff and they got his heart going again but it was a very, very faint beat and hed had no blood pressure and he had barely any resps of his own, and whatever was, it was very low. But he was alive and they kept him alive and we got up to ITU and I was just you know what, we got in there and the nurses were like, You know hes not supposed to be here, right? I was just like, you know, is it really the time for that.

But, you know, we came out like five days later and were back on the ward. And so, for me, at that time I thought that was a great choice because before we spent ten weeks in ITU. The fact we were back on the ward in five days was like, whoo-hooo, I was so thrilled. And I thought wed done the right thing.

But, you know, looking back I don’t think I appreciated the signs of brain damage that were there. You know, [partner’s name] didn’t blink for a week. He didn’t blink, he didn’t close his eyes and what happens then, is when people die and they, they’re sort of not really alive for a few days they get jelly on theirs, it goes like jelly. And, do you know, these are things that now I can appreciate how bad it was. Do you know, he had no retina reaction thing, you know when the thing the pupil dilates, nothing. And he was very, very ill and if I’m honest, he never recovered from it. He never recovered.

Do you know, after the first cardiac arrest we had more signs from him. Do you know, I got him doing left and right with his tongue for yes and no in the August. And there were signs there, you know, hed mouthed words and there had been a time when he shouted. [Fern], at one of the doctors.

And I think it’s the appearance as well, it’s the appearance of suffering. I call it the appearance of suffering and I won’t call it suffering, because it’s not, it’s the appearance of suffering. From eyes watching and looking at another body, that body is suffering. But hes not in there to suffer, I tell you that now. Hes not feeling any of it. So it might look like, every time he goes through these.

When he goes through these phases of illness, hes not feeling it because hes not in there. Hes not, it’s the appearance.

The body is going through something, but he is not in that body, he does not feel it.

And we have proof of that, do you know, it’s things like there are certain clinical signs when someone is in pain. [Partner’s name] does not show them.

And it’s not just that hes on loads of pain med anyway. So even if people did believe hes in there again it’s the appearance of suffering, because hes on so much pain medicine. It’s lovely [laughs], I feel really good about it, hes not feeling it, hes not feeling it. I’m absolutely certain of it, absolutely certain of it. He does not feel any of it.