Episode 32 - How to prepare for the death of a loved one

In this episode, we're joined again by Sacha Langton-Gilks to talk about how to prepare for the death of a loved one and explore what it means to give someone a good death and help them die well.

Trigger warning:  In this episode, we do talk about the final stages of death and some of the physical processes that take place at the end of life.

If you found this episode difficult or would like to talk to our support team you can call 0808 800 0004 or email support@thebraintumourcharity.org

You can also find Sasha's book 'Follow the child' here

You can find out more about Compassionate Friends here

You can find out more about the support offered by Marie Curie here

You can also watch the video by Kathryn Mannix that Sacha mentioned here

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Transcript

Sarah: 0:38

Welcome to Let's Talk about brain tumours, the podcast where we'll be talking to people who have been affected by brain tumour diagnosis, either their own diagnosis or the diagnosis of a loved one. We'll also be sharing news and updates and brain tumour charity about what we're doing to have the harm and double survival. Hello, and welcome to the podcast, I'm joined again by Sacha Lankton Gilkes, in second of a mini series we're doing on end of life. If you haven't listened to the first episode, I'll link to it in the show notes. As you might remember, from the first episode, Sasha wrote a book called father of the child, which I'll also link in the show notes. Although this book was written about parents experiences of losing their child, all of what we're going to talk about relates to all age groups. So it doesn't matter whether it's an adult or a child, much what we're going to talk to in this episode relates to everybody. So we're going to be talking about the difficult subjects of the death process. I think this is a subject that people really struggle with. I've had people on the phone to me saying, my mom's gonna die, what will it look like? Because for young people, they've never dealt with death before

Sacha: 1:46

my dad actually had. So I was pregnant with DD, when my father was dying at home, I watched my mom, we were all helping her with dad, he had skin cancer that then went to the brain. And I remember that just total, no idea what that looks like that, as you say, that sort of fear of the unknown is absolutely a colossal fact that people are listening to this, hopefully, it will break down some of the fears.

Sarah: 2:14

So this is this is why we're doing it. It's one of those to be subjects that but I think we can't shy away from the fact that people are dying of brain tumours, and that there are people sat at home right now having to care for somebody who is going through this, and they don't know what to expect. They've not got medical experience, they've not got a history, they've not seen anybody dying before, they're now dealing with it and don't know what what to look for. What is this normal? Is this not? So you wrote a book, Sacha and you talked in detail about what you experienced with DD. And obviously, this is one of those subjects that people don't talk about. People don't talk about what happens in the last weeks of someone's life, you know, what is happening to their body? What is it like to care for somebody or see somebody going through that? Can you share a bit about your experience of that.

Sacha: 3:01

It's true that I wasn't, I had watched my father die from skin cancer that had gone to the brain, and he was at home, which is how I knew it was possible to be at home. So I had, I had the huge advantage, I would say, of seeing my father's breathing get slower and slower until it wasn't followed by another breath, and we realised that he'd actually died. And we were all with him, which I'm hugely thankful and grateful for. So at least I wasn't frightened, I realised of the actual dying. But of course, I realised that dad had stopped suffering. And the same with DD I knew he would stop suffering. So it was that sort of agony of almost wanting it to happen faster, because you cannot stand seeing them suffer is so awful. And then you'll be furious. How can I think that about my child wishing it to happen earlier? So it's a sort of it is a torture, it is a torture to be in that position where you want it to happen quicker to stop and suffering. But equally, you cannot bear the idea of not being not there anymore, which you kind of also can't get your head round, because it's, we're as human beings. It's sort of cliff face in our brains, isn't it? You just can't go there. Yeah, so that's the sort of psychological torture that you're in, as it were. But from the physical, I realised what an advantage it was my talk to other parents where they hadn't seen that actually, for my father, and then for DD, it was calm, and peaceful, because we had managed to do all the planning. We didn't know what he wanted. And we and he had done a well, so we do so I'm saying so we at least have the sort of peace of mind and the consolation in grief that that had been done. But in terms of the the sort of process what essentially had happened. I mean, I have to be clear here that he had a type of medullablastoma. medulloblastoma was just one thing, it back in 2012 when he died, and because he'd had shunts that complicated some of his so every death is unique. So I'm what I'm saying is don't think just because of what I say that's going to definitely happen to your loved one, you know, say What is what 140 different sorts of brain tumour absolutely everybody reacts to the drugs differently that are managing their symptoms. But the sort of psychological state for us looking after them is the same the world over the fact that we could keep him comfortable and he was In the place that he wanted to be with the people that he loves, that is a huge quote. So use this sort of this terrible sort of bittersweet, you know, incredible moments where he would sort of say extraordinary things, even with dementia. And you'd be like, how is it possible for someone's brain still do that? Because I think I thought dementia was just one sharp slide. And the answer is, it's not it goes up and down. Essentially, what we're talking about is a body starting to shut itself down. If I put it that simply. And for DD, it started because he had so many tumours, millions of them teeny, weeny all of down is his spine and brain, it meant that all the message messages were getting jumbled up. So he had dementia. For me, it's helpful to say the word because by not saying the word doesn't mean it's not happening. And so I had to say that out loud, to gather the courage to say that to the, the nurse specialist,

Sarah: 6:23

we hear that with people who are going through their loved one is personalised, completely changed, because the tumour is just attacking different parts of the brain.

Sacha: 6:34

I looked it up on the NHS website causes of dementia, less common causes of dementia, brain tumours, I'm like, well, nobody said anything to me. And the thing is, I know that the doctors so hard, and because I'd say they don't want to upset us more, it's like they and these are the two biggest taboos if dementia is the number one health taboo for the public. Number two is cancer. And if you've got brain cancer, potentially, you've got both. So it really is, you know, yeah, wow, we ended up with someone with no capacity. So it starts off with him being able to make decisions and being clear, luckily, because as I say, We'd had a sort of five year pathway. We knew what he wanted what was important to him. So the dementia, then it's not like it was sudden, and you're left with someone who's unconscious, and you have no idea what they want. Nothing has been planned for him

Sarah: 7:25

That's important, because depending on where the tumour is and stuff, DD had dementia, but I know for others, they lose the ability to speak, for example, you know, there's different ways that having that plant before communication, in whatever form it it takes is lost. And you can no longer communicate with that person.

Sacha: 7:44

Because he was 16 he was still a child. So that meant that my husband and I still had responsibility for him, I know it's more difficult. So if you're an adult, the thing is, if you haven't written it down, and then you're not able to express your wishes, and you've lost capacity, if it's not written down, the doctors have the legal responsibility, not the family, which I didn't realise, because it didn't quite arise because DDi lost his capacity, but he was still technically a child. So we still could make the decisions for him

Sarah: 8:15

And that's really important for adults that are listening to this and thinking about either themselves or their loved ones that actually, if an adult loses capacity, because they can't communicate what they want, they may have had those conversations with their family. But if it's not written down, like Do Not Resuscitate and those things, it's no good telling your wife or your husband that but not having it in writing, because when it comes to it, it will be your medical team,

Sacha: 8:41

I think I know from a girlfriend that's happened to and their children were doing like a lot GCSEs and a levels and, and that the husband lost capacity. And nobody would she tried to get pallitive put, but didn't realise quite how much you have to push sometimes depending on where you are. He ended up totally losing capacity. But the hospital appointments were being sent to him and he didn't know what he was doing. And it was absolutely. But I think again, if people don't know what's likely to happen, they don't realise how far upstream you need to kind of get stuff in place so that when it gets bad, you've got it covered, don't end up in the kind of crisis they did with him being basically section right at the end, it was really, really

Sarah: 9:24

good, because that's the thing about brain tumours that's perhaps different in some to some illnesses in some respects, is that, although it happens quickly, they happen slowly as well, in the sense that it's not like heart attack where someone just drops dead, you gradually bit by bit, things start shutting down because your brain is the control centre for everything. So bit by bit, things start to shut down.

Sacha: 9:49

Yeah, it depends, as you say, what type of tumour where it is, and again, your team would know what you should expect. We actually he didn't lose his mobility literally till about four days until he died. And if you think we had a sort of that that last bit was basically about three months. To start off with it was the dementia side of it. That was an seizures and I because I'd never had to deal with seizures before because that wasn't where his brain tumour was. So it wasn't a pattern that I was used to. But again, I it would have been helpful to have been told. So when he was having an absence seizure, where he's Suddenly, literally, it's just not there. He's looking out of the window. He's sitting there, he's not speaking, he's not looking at me. He's not doing anything. He's literally like a sort of statue, sitting there looking out the window. And I'm talking to him, and he's not responding. And one of the other children came in and said, Oh, you know, what's the team? I'm, and I'm like, I'm not quite sure at this point, because your brother's? Well, I'm not quite sure what's going on, it would have been good to know that, absence seizures, that's what they're like. And this went on for about 10 minutes. And I didn't know if he'd ever come back. He did, he suddenly went, What's for tea mom, I practically passed out because I didn't know what was going on. And I kind of think it was a sort of seizures, and then as say, the dementia for the short, his short term memory went first. And the the most difficult thing for me was was me like anyone who has a beloved with dementia is, except of course, with a brain tumour, you're doing it at warp speed, is when they get to the point where they don't even recognise you as their mother. Obviously, that is just horrendous. But the hardest bit was because his short term memory went, he'd forgotten that he knew he was going to die. But he knew he had cancer, because that had been for a third of his life or whatever. So he for about a week, he went, Oh, am I having more cancer treatment? And I'd have to go? No. And then he'd go, Oh, am I going to die? Because it's like, he knew that something huge happened. And he had processed all this. But then the dementia took away the short term memory. And he did that over and over again, at that was without doubt the hardest thing. And my sister then said, Oh, just lie, say yes, you're gonna have more cancer treatment. But you know what? We were told by the nurses right at the beginning. Don't lie. Be honest. At some level of me. I thought, I've never lied to him. I've always told him what he asked me honestly. I mean, obviously age appropriate. I've always told him if if I lie, now, I just know that at some level, it's going to distress him. Then his long term memory started to go. And then he stopped asking because the nurture just gone. It felt like being on Google Maps trying to get somewhere and it would say, oh, there's a blockage ahead, right, you're gonna go left here. Gradually, more and more and more roads shut down. And you're being diverted into smaller and smaller and smaller roads until basically, you know, that entire area you now can't go to do you want me? Yeah, it was absolutely horrendous. But that's what happened. But the main thing for me was that he was at home. So this is where place of care. So you've got places of care and place of death, they don't have to be the same place. So we had decided that to move him to a children's hospice wouldn't be in his best interest. Because of his dementia, his body went on to an autopilot. So he knew that if he rolled out of bed, two steps left was the bathroom, two steps left, that was the loo. If we'd moved him to a children's hospice, that whole continuity would have been broken. As it was, he was already confused about who everybody was. So that was super important for us. So it was the right decision. And if I'd known we could have had hospice care at home, which is something that I didn't realise we could have had. So then they the care would have come here. It's not available everywhere. But it's definitely worth asking.

Sarah: 13:45

It's good to know that people can ask that, because it's very subjective, where somebody like she said, place of care and place of death don't have to be the same thing. But people often think if I've made a decision for them to go into hospice, because I can't care for them to keep somebody loses mobility or whatever they can request as the day is coming closer where you know, you can kind of tell Can't you that this is coming,

Sacha: 14:09

especially the specialist nurses, I mean that we had the most brilliant Marie Curie nurses, I mean, not every night, unfortunately. So I did get really knackered but and we had the same to over let's say, two weeks, actually, both of them had had experience with adult nursing. So we were used to do dementia patients, so they could kind of herd him back to bear because of course, eventually animals, you can't even tell them it's day or night, that you're doing dementia at warp speed, essentially. So as you say, there's lots of things I know one parent, for example, where they decided the place of care was going to be at home, but they absolutely didn't want the place of death to be at home because they wanted that to be really special time where they didn't have people turning up at the door that they had to deal with and explain what was going on. They wanted to be really special time just for them. So they went into the children's hospice for the death and I will quote the mother who had a death fit for a king. And the other beauty of that is that if you're in the suite, the end of life care suite and a children's hospice they have it's it can be chilled, so you can stay there for as kind of as long as you want afterwards because the body won't deteriorate because the rooms temperature controlled. And you can have friends to stay the family can come and sleep there or you can go home and organise a funeral and come back and you know that that that your child is safe and

Sarah: 15:27

they have this I'm sort of room for adults where if people care for them for their loved one at home, or if they're cared for in hospice, there is this special place where they can go at the end.

Sacha: 15:39

I also didn't know that you could get a chiller blanket. So if you want to have them at home afterwards, you can ask your hospice, it's like an electric blanket, but it keeps them cold, you can have a chiller blanket at home that you plug into a socket. That means again, you can take that time, especially if you've got relatives coming from somewhere miles away, and they haven't been able to see them. And for some people, that's just so important. So there are options, it's just that I wasn't aware of a lot of them. So a lot of our end of life stuff was what that healthcare professionals around us happened to know rather than what was actually possible, right. And I think I think that was the bit of the book that was most useful. I didn't realise and when even if you're in hospital with your child, and you can then go to the children's hospice, after the death, and there are options there, I kind of you know, my brain stopped at the death, and didn't realise there's that very special time between the death and the funeral where the body goes away, to be buried, or, you know, and actually, you can drive them yourself. I wanted to do that. Listen, I know you're not allowed to it's illegal. That's not actually true. You can't go obviously, you have to have special paperwork to go abroad or go to the Isle of Man, the Channel Islands, they say you can't cross the county lines with the body in the car. That's not actually true. I couldn't have driven because I was too exhausted. I remember asking the mortuary staff at Southampton General, I was trying to understand what would have happened if DD actually died in hospital? How does that work? How do you get them out of the mould, you know, and that kind of thing. And they were saying as long as the body is secure in the car. You have put the mind boggles. But because I was kind of slightly, really distressed at the idea of DD being kept in a fridge and at the funeral directors. And I remember nurse saying to me, oh, gosh, a lot of parents say that. I said, Well, I'm not surprised. But actually, we need to make sure that healthcare professionals know that you don't have to do that if you don't want to. He could have avoided the fridge if I'd known but I didn't. So I can't beat myself up. I really can't beat myself up. But going back to the process. So the dementia was one thing of that of his sort of brain shutting down like that. We were lucky we didn't get the mobility issues until he had to be in bed anyway. And I have to say that it was at that point that he did get distressed because he didn't understand why he was going to bed or you know, night day.

Sarah: 18:04

How long would you say that real decline started where you were like, okay, he's he's dying? Now?

Sacha: 18:12

That's a really interesting question. Because I would say that out of that three months, because as you say, people think they're going to die. They think you're dying for three months. You so aren't Yes, the body's beginning to shut down. But for me, I would say he was only actually dying, really shutting down. You know, the all the major organs. Those last four days, four days out of the three months. Yeah. So I think people think, you know, oh, my God, you're talking about death all the time. They're dying all the time. It's like no, no, today, so and so it's coming down for lunch. Tomorrow, we're flying owls around the kitchen. The day after that we can have a picnic on the lawn and grannies coming over. We were living. He was only dying those last four days he was in bed and he was distressed. That was the only point which I think is incredible, that he was distressed. And I knew that I was out of my depth. And I made the call to the clinical nurse specialists at Southampton general. They basically said given the medraslam right now, and oh my god, miracle, instantly, calm and sedated. So you know, you, you know when your loved one is just in distress and the palliative care team, absolutely know what medication can be given for when

Sarah: 19:21

And you have all that medicationt there?.

Sacha: 19:24

Because we've done the planning, and that hence why I'm so obsessed with planning. And also because Marie Currie normally don't look after children. But because he was 16, he's kind of borderline, but more importantly said because there's a good plan in place will come if they hadn't come. I don't know what I'd have done. Because I'd have had no breaks at night on the day. I mean, the mind boggles

Sarah: 19:47

then it's healthcare professionals, like having a plan in place gave them the confidence and reassurance to know that all the things were there that they would need. They weren't going to be caught short or suddenly left

Sacha: 19:57

with a child in the community. Because I mean, one of the social workers I remember speaking to when we were sort of planning the book and I was being put in touch with these brilliant, lovely families and everything. And she said you had some balls going home with a child with those symptoms, you know, pain, seizures, sickness, because it was on his medulloblastoma. It's at the back of the brain. It's like near the vomit centre. He'd always been a really sticky patient, but they just upgraded him to the Rolls Royce of anti sickness and that sorted it So they have they have loads of drugs and those palliative care teams that is their super nerd place they love you know all those drugs they can use to to manage the comfort of the loved one so we had the seizures under control the sick under sickness under control pain under control with with an absolute arsenal of the most extraordinary drugs so we started off with the baby stuff when he was in a bit of pain. So you've got you know, paracetamol and neurophen and your usual Codine, then we graduated as soon as he did say it was hurting where we went to fentanyl oramorph Oh, my goodness. All worked. So I have friends who ring me when when you know their husbands and pay I said, that is not necessary. You know, they think they should try and be brave. It's like, is there anything particular you're trying to be brave for because if someone's coming around, and you're, and you want to be kind of with it, okay, but please don't. Because if you really try and be brave, and then the pain gets out of control we have, you'll have to end up going back into hospital for them to get it back under control. You don't want to do that. And that's the other thing about that I got very upset by was I heard somebody say Oh, so you know, there's auto syringe drivers, the little things they put in a little thing into their thigh. And they do. So for DD they were mixing up. Yes, seizure medication, anti sickness and pain meds, all in one little file it was teeny. Unlike my, my father's day was actually massive. So it's absolutely brilliant. So it doesn't get into much of the way the bedsheets kind of thing. But I heard someone say, oh, but don't just kill your loved one faster. I'm like, No, oh, my God, where did you get that from? This is what kept the dose absolutely constant so that it doesn't dip. And we all know what it's like when you think, oh my god, I should have remembered to take my meds and then it's starting to get out of control, you know, and it can get out of control so badly if you've got seriously bad things wrong with you. Yeah, this is the thing that kept them comfortable. Because my biggest fear, as I say was was pain he was going to be in pain or distress. This is the thing that stopped him being in pain and distress. Marvallous don't for one second thing, they're going to a it's illegal for the doctors to give them too much every single drop that goes into your loved one they have to sign for and justify. So do not for one nanosecond think something bad is going on. Because they have to justify that dosage. And they can't they you know, so they're trying to keep your loved one comfortable, and absolutely it works. So that's in credibly important. And the other thing was so that those last four days when I would say that he was dying, and we had to put him to bed, sedate him so he wasn't distressed. He also at that point where he lost mobility, he also could no longer swallow, then I realised why we had all the medication in injectable form. So you don't want to run out of those at five o'clock on a bank holiday that again, that's why the planning is so important. So basically, I made the call, and they did the auto syringe drive to to make sure that all his medication, because obviously you couldn't swallow it anymore. Yeah. That's why it's so important. And food with cancers, it gets to the point where the body is shutting down, it doesn't need food anymore. That's part of a normal death. So if someone's not hungry, you're not starving them if you don't give them any food. And again, that was why at that point, and the GP was with us, because he sort of went through the sort of protocol. Do we want to put in a feeding tube into DD? And I'm like, why would keeping him alive with food now when he doesn't know who anybody is? Doesn't know where anybody is doesn't know it's night or day, he's got a borrendous pain, you know, we're having to manage all this stuff. Why would we keep him alove? I said Surely that is not in his best interests. That's not the loving thing to do. And the GP just said, I agree. And so we didn't. So when you decide not to do a treatment, it's called withholding treatment. Withdrawing treatment is sort of emotionally much harder. Because again, I think you are tempted to think as the loved one that you're killing them because you're taking the tube feeds them or the tube that's making them breathe, but the answer is no, the disease or the accident or whatever it is, that's got them in this horrendous position is what's killing them. You are now doing the loving thing to stop them suffering. And that's crucial because the sort of guilt we're all thinking, oh my god, I should be feeding him we should make him breathe and the answer is no. So I definitely fast with holding back treatment was the right thing to do because he was so close to death anyway and to make it prolonged when I didn't want to do it

Sarah: 25:18

and when when the body's making the decision to shut those things down. It's telling you isn't it that body can no longer take food it doesn't need it doesn't want it, you know, the fact that they've said is the disease progressing?

Sacha: 25:34

Funnily enough, so my father, I remember went through quite a long phase of not wanting any solids, but he was still sort of sucking on the sponge to give some water, but DD didn't even do that. So. So we were effectively very quickly, unlike my dad, giving him no food and no water, because his body was simply not doing that he'd had a very, very big seizure the night before. And I thought that was probably going to be it. And then he still seemed to be coming back and vaguely aware where it was. So

Sarah: 26:00

from what I've heard with brain tumours, that kind of fading and where people are unsure, because as the brain is slowly shutting all the processes down, it can seem like it shut down, but then it's kind of not

Sacha: 26:13

coming back again. And you think I remember she reminded, I remember thinking a certain point, how is it he's ravaged by this horrific disease, he is still functioning at all. I mean, to me, the the human body is a miracle. But as you say, he did do that. No food, no drink very, very quickly. So that was it. We didn't do I think the nurses already knew we didn't do catheters for urine, because I think the nurses again, they know better. They used to it. So they were just doing like a towel over him and sort of, you know, you can put a sort of like, not a nappy, exactly. But so basically, we didn't have to catheterized him, which is, you know, my dad had a catheter, but we didn't need his was so fast by that point, that we didn't need to do that and bother him with that kind of thing. But the food one was interesting, as I remember seeing, which made me really it really made me laugh, because I thought yes, that is so. So this woman who was caring for her loved one dying, I think she was in the US. And and she was obviously facing this and talking about food. Obviously, people had questioned why she hadn't fed her loved one. And she said to me, it's like, a rusted car in the garage. That hasn't gone anywhere, for goodness knows how long there's no wheels, it's up on blocks, the engines pretty much rusted away. And you're you're trying to pour petrol into the petrol tank, and it's then cascading everywhere, I thought that's actually a really kind of clever way of making people understand

Sarah: 27:36

Yeah it's that thing, isn't it that people still, like you said, think that you're killing, you know, your loved one. But actually, you're not. And it's not like anything you do, is gonna keep your loved one, you know, your loved ones not gonna suddenly sprang back to life just because you put a feeding tube in or because, unfortunately, it's not that simple.

Sacha: 27:59

And I mean, luckily, because we, because we were at home, and it wouldn't be the same in a hospice, it's harder to do in hospital, all the things that he loved. So the things that we could do were gorgeous, meal, his favourite music, his favourite smells, nice chatting in the background, because you know, I know that this sort of hearing is one of the last things to go. So even if they're not sort of squeezing your hand or anything. So we would sit around chatting, having cups of tea with him. So we will always with him, those four days, somebody was always in the room with him. And so that whole thing of being in the place you want with the people you want, and the cat was on the bed, all that stuff is what's so precious, you want to mean because those are the things you can do and what is very difficult for hospitals to do. So basically, essentially that everything starts to slow down, people start to get more and more and more tired, they sleep more, until the point where they actually start not just being asleep, but being unconscious and then coming back again. And they're not even aware that they were unconscious. And then that becomes much more than when they were even asleep. So you've got this sort of massive slowing down because it gets so so tired. And when it gets to the point where like DD was as good as he was, he was sedated, but he was also deeply unconscious. But it's quite hard to tell between those two things, honestly at the end, but he did develop that thing where there's so unconscious, you get a rattle in the back of the throat, and Katherine Mannix, the palliative consultant who's written a brilliant book called 'With the end in mind'. And she just says it's because they're not distressed that I mean, even though it is distressing to listen to. i won't

Sarah: 29:34

it's probably more distressing for you

Sacha: 29:35

yeh it's awful. It just broke my heart for my father and for the but actually knowing that no one's done anything wrong. That is just saliva. They're so unconscious that they don't they can't clear their throat anymore. So you get this sound. We actually tip DD on one side and actually I seem to remember the GP put something in his syringe driver that can lessen the sound and I was grateful I've got to save that drug still exists, probably does. That did help because it is really hard to listen to but they're not suffering. They're just so unconscious. They can't do it. That's important because that's just part of a normal death. If you go on to Twitter Katherine with a K Mannix Mannix got most wonderful, soothing voice from trying to calm calm down very, very anxious and distress patients and their families. And she just talks about this she does a three minute talk about this slow laying down at the body, which I think can really reassuring and completely brilliant, I think it's been watched 3 million times. That's called in my humble opinion. As I say, it's the top, it's been top of her, her feed,

Sarah: 30:39

I link to in the show notes that people can just go go click on to it.

Sacha: 30:44

Yeah, and her books really good. So remember hearing her talk at the hospice UK conference. And she said she'd been involved. She reckons over her career with 10,000 deaths, not actually there. But on the phone in support, or in support of the team. And then someone was would say she was giving advice or whatever. So they know how this works. So if you've got a clinical nurse specialist, palliative nurse specialists, Marie Currie nurse, district nurse who's done deaths, obviously, pallative care and so on, they know how this works, you know, so so we were constantly being reassured by any nurse who popped in Marie Currie certainly they'd come at night and assess him. And we've talked through what happened in the day. And then they'd reassure send us off to bed said, you know, we'll wake you if you need to be woken and then the last morning because as you say, you can't quite believe is this it? Is this it, and how long they can hang on. It's like how strong the human heart can be. Wow. You know, those four days did feel about as long as 40 years or 400 years. But the final morning that the nurse came and woke us because she knew that it was very close. And and it was it was like an hour later or something. And his brother was there, but not his sister who was asleep over I'd said you can stay, you know, I've no idea when he's going to actually die and stop breathing. But he'd wants you to go to the party. But the good thing was, at least it is a reality when it's in your house, they saw their brother dead, it wasn't something that, you know, there's that tendency to protect by not. But then it's not a reality. It's, even though it was so real for us. And we talked about it and he was here. I think for that entire first year of grief, I actually could not compute he was not here anymore. And we'd had warning. So God knows what it must be like if your husband dies of a brain haemorrhage or wife or a brain haemorrhage from a brain tumour in in five minutes. Yeah. You know, because it's all it is unbelievable. It's unbelievable.

Sarah: 32:44

And that's the thing is well, isn't it? You've mentioned it a couple of times about the grief afterwards. And I think that's something else, isn't it because you have this, it can be a long illness, but it can also be a very short illness, and suddenly the person just isn't there. And death is one thing. But then there's the what comes after that.

Sacha: 33:06

The grief. I've literally this is 10. We have a 10 year anniversary about two weeks ago. And I only found out because I'm about to start a bereavement group as part of social prescribing for our our surgery in this era of GP surgery. And I found out about compassionate friends who are it's two people, they support bereaved parents, I'd never heard of them. And they've got sort of information from anything where if you've had a drug death and illness death, like us, or suicide, it's like, Oh, my God, I had no idea. It's all the stuff that you don't get signposted to, as you say child bereavement UK didn't you know, all of this didn't get connected to. And I think if we'd had the hospice home care we would have done. And the thing about the hospices is, so even if you haven't been involved with them, you could ring them up afterwards and say, we're really struggling with our grief and bereavement. Can you help and they will

Sarah: 33:58

That's really good to know because I think people think well, my loved one wasn't in hospice, so I can't contact them but to know you can still even after they've died, still go to hospice because this is a link into

Sacha: 34:10

That's right so I'm incredibly good friends with a mom whose son is still alive and and just got married, which is amazing, but it's the kind of condition which where he could die tomorrow or in 30 years and they have no idea and she has been going for bereavement for anticipatory grief, bereavement counselling at the local hospice, to help get our head around the fact that you don't know when, I mean literally it could be tomorrow morning. Just haemorrhage and that's so hard, but so the answer is you can go before so I know one, I think the the mum that in the book. The one that I found just brilliant was that she'd actually gone to see because they'd been having conversations and done the planning before she went to see the funeral director before her son died, her young child died, he was probably only seven because she kind of wanted to know again what the choices were. And it was through talking to the funeral director that she realised that place of care was going to be at home place of death was going to be in the hospice. But yeah, as you say, you don't realise you can have these conversations you you need permission. You need to know that talking about death, you are not letting your beloved down. You're not giving up on them. You're actually helping create meaning for the whole process. That's gonna help the whole family afterwards, you're not going to get yourselves into a horrible stress and crisis laden death.

Sarah: 35:35

Yeah. And the the reality is, unfortunately, if your loved one has got a terminal diagnosis, not talking about death isn't going to stop them dying. So if you if your loved one has been told, you know, they have got a tumour that is likely to kill them, unfortunately, not having those conversations isn't going to change the outcome, it's not gonna, it's not going to speed it up by having those conversations. And it's not going to stop it by not having those conversations.

Sacha: 36:01

I think the other one you because you just touched on it is the word terminal. I have a lot. Lots of friends have over the years. And often, because prognosis is an uncertain thing. I think I always thought that doctors were new when a child was dying. And the answer is, particularly children, there is no good data on that. Seriously. So you're kind of thinking, how can a doctor not know when someone's about to die? And the answer is, if they're not used to nursing at the end of their life, they're not used to all the signs. And so I know parents who've, admittedly with not brain tumours, but who've been blue lighted in and they've had to say, Well, we think they're not going to make through make get it through the night. And they have to prepare the family. And then the next day, the child bounces back and says, Hi, can I have some toast, literally? And it's like, it's easy to kind of lose trust in the doctors because you think, Well, you don't even know when someone's dying. What else Don't you know? And the answer is, prognosis is uncertain, full stop. So you know, it's usually statistical X number of people are supposed to live this long. But as you say, statistics, I only found helpful when I was on the right side of them. Unfortunately, we weren't, we were the 25% that were our son died, not the 75% that survived and are cured within by the time they get to 10 years. So statistics, damn, damn them. But the thing is that doctors are often not clear between the difference between terminal and people think they're about to drop down dead any minute. Terminal is end of life. That is technically your last year. Now, obviously, it's quite difficult to know that until after you've died. That was your last year. But when you see people on social media going, I've had terminal cancer for 10 years, no, you've had incurable cancer 10 years, you are not necessarily at end of life. And that is a crucial distinction. I keep saying to the doctors, please be clear. And it's not so people then think they hear the word terminal. I think everything's over. We've got no hope. You know, we're not having life. The answer is there's so much you can do. And even as I say DD, until four days before, he was doing having lots of life, lots of life. So I mean, okay, not the one that I would have wanted for him. Lots of really, as Deborah you know, Bowell babes husband saying absolutely magical times, because we were prepared. And so we and then people helped us make those things happen. But difference between terminal and incurable is huge. So it's like, check with a doctor, which one do you actually mean? And if they say, I keep trying to tell them? If you don't know, doctor say, I don't know, I'm really sorry. Because that's better than a kind of sympathetic silence that terrified me. That terrified me. And then explain why you really don't know talk about stats and say, I know that's really hard. But at the moment, if your, your baseline is, you're still functioning pretty well, I go for it, mate, do what know what I mean. So this is what my friend's son does. He's got horrendous diagnosis. He's going on his honeymoon. He's doing this. He's doing that. I mean, with a shedload of medication, and an awful lot of telephones and phone numbers for doctors and hospitals when he goes abroad and special insurance. But he's not just sitting there thinking, well, that's terminal. I'm dead. Yeah. Because you're not know.

Sarah: 39:17

Like you said, it's a really important distinction to make and think that, in and of itself is helpful for people to be able to use that language and say, what are we talking here we talking to incurable, but I still have a life or we talking terminal, get my house in order because I'm not going to be here in six months, 12 months.

Sacha: 39:37

I think that whole thing is because I remember one of the mums in my book. They were given their child's who was three at the time, as I recall, a dreadful degenerative neurological condition. And it was so brutal the way it was delivered, that they didn't feel that their child was going to be able to do anything and and then literally for the left and total devastation, and I think they'd said, you know, your child's gonna live six months or something and he's three. And then the registrar goes, well, actually, we've got another family whose child with the right input, so they were doing loads for and with their child. Actually, that child is still alive, aged eight or something and they've been basically given the same time. So I know it sounds crazy, but there is not no hope when you're given that kind of diagnosis because, as I say, the doctors don't know when you're going to take your last breath. As we were saying in the last episode, you can still be planning for the future. Even though you're accepting that you are going to die, it doesn't mean that you haven't got any hope. I know that sounds totally contradictory, but it's part of our human condition isn't.

Sarah: 40:38

It? Isn't that part of life though, because right from birth, we all know at some point, there's one guarantee, we all know we're gonna die. And yet we're all planning from when we go to school, and we're going to go to university, we're all planning our life. And yet, we all know deep down inside, we're all gonna die, we all might think we're going to die old age, but that doesn't stop us planning for some kind of future,

Sacha: 40:58

It just becomes that time seems so much less meaningful. I remember the Steven Sutton, the wonderful teenager who I forget which candidate it was, he died off and raised about 7 million before he died for the Teenage Cancer Trust. And and I remember him, you know, reading Him, LISTENING to Him, and it's like, time isn't important to me anymore. You know, it's like, why are we qualifying the difference between an oak tree that lives for 400 years, or a lily that's perfect for a day? Yes, I do wish that DD had been even a bit of a shrub. So we lived a bit longer. But I know what he means it's like time takes on a completely different quality, if time is short, but to put all your eggs in one basket and to refuse to have the conversations because you are betting that you're going to be the one person in however many millions, that's going to be the outlier on the statistics, the point naught naught naught 1%, that has a totally spontaneous remission that nobody understands. But the problem is that the downside of that which is that seriously unlikely to happen seriously, and then what you're leaving your family with, it's so awful. I mean, I, the family, I know really well, and that the death was such chaos. What that's left the children who were in their teens, is just because the husband would not let the wife talk about it. And therefore the planning was done. It really wasn't

Sarah: 42:20

So I think the advice would be talk about it, I think that comes across really loud and clear that you can't talk about this too much. You know, you need to have these conversations. And the sooner you start having them, especially if you have got a fear of what will happen when it will happen.

Sacha: 42:38

And I think I certainly was frightened that I couldn't do it. I you know, I know that it's like, you can do it, you're not on your own. And there are people in sport, you will have to ask me, you know, and unfortunately, because services are patchy, you will probably have to really fight for them, which is awful, but it's true. I also remember hearing Ranulph Fiennes talking about the mountaineer talking about his fear of heights, which I found hilarious that he has this extraordinary mountaineering and being terrified of heights, and I'm thinking that my fear of what was coming was was like Mount Everest, it really was So when I heard him sent me here, he was frightened fights, it made me laugh, then he said, the guy who was taking him up was like, Don't look down. And don't think about what it would be like, if you did look down. And I took that to mean, in my situation facing all this is actually, you're doing all this with love, and you're doing your best. And what I really love and the second one, you know, don't don't think about what it would be like, if you did look down was don't think about now in this situation where they're still here, what it's going to be like when he's dead. Because that's just gonna wreck you, and you won't be able to enjoy this moment. And those moments are so precious. So I thank Ranulph Fiennes for getting my head there

Sarah: 43:59

Absalutely Absolutely. And I thank you for being so open and honest and being able to have what is a really, really difficult conversation. And I know that this is sort of stuff that people ask about and being able to direct people to this, it seems impossible that you'll never go through this, you can't survive this, you can't get through this, because it's the worst possible thing you can imagine. But you will and you will come out the other side, because the things you will do for your loved one, you'll make sure that it's that they get

Sacha: 44:28

because I wish I hadn't gained this but but it does give through it, me huge consolation and comfort it's, it's given an added layer of meaning to DD's life and death, being able to hopefully help people be less frightened. And knowing that there are people that can help those, there's just so much help that you can get in your bereavement and, and people, the specialists who know how these deaths happen, get that palliative care team as early as possible. You're not giving up. It's it's the thing that's going to possibly make them live longer.

Sarah: 45:05

Thank you very much for joining me SaCha.

Sacha: 45:08

Bye.

Sarah: 45:10

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