Loss 55/101: Loss through a bad/complex death: Kay Backhouse

#109. What if your loved one doesn't have a 'good' death? How do you cope with the trauma of witnessing someone suffer at the end of their life?

This is The Silent Why, a podcast on a mission to open up conversations around grief, to see if hope can be found in 101 different types of permanent loss.

Loss #55 of 101: Loss through a bad/complex death

In this episode we chat to Kay Backhouse, in Morecombe, Lancashire, about the death of her youngest brother, Syd, to neuroendocrine cancer in 2019.

Kay was living in Australia with her family when her brother was first diagnosed, and one day she received some unexpected communication from him that started a chain of events that led her back home.

Sadly, a couple of years later, in a hospice, with his family, Syd suffered a 'bad death' or 'complex death' which added an extra, very painful, level of grief and trauma to Kay's loss.

This is a subject you don't often hear discussed, so we're very grateful to Kay for chatting to us about her experience.

Kay believes that if she’d been better prepared, or educated, about deaths like this, then maybe the way her brother died wouldn't have been so traumatising.

She's now passionate to help others learn more about death, and we believe it's an important topic we should all be willing to learn about - not only in case we go through it, but also to help others.

And Syd's death has had a profound impact on Kay's personal and professional life; the way she views death, sees hope, spends her time, and views the future. This is a conversation that is anything but sad and depressing, it is a story of hope.

For more about Kay, and her book, 'Losing You, Finding Me', visit: https://www.kaybackhouse.com

Listen to our other episode with Kay & Maddy: https://www.thesilentwhy.com/podcast/episode/7c8f6445/lets-chat-life-in-a-hospice-with-maddy-bass-and-kay-backhouse

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Transcript

Kay Backhouse: 0:02

Hi, I'm Kay and I'm here to talk about the complex death of my youngest brother said.

Claire : 0:08

Welcome to The Silent Why, a podcast on a mission to see if it's possible to find hope in 101 different types of loss and to chat to those who have experienced them. I'm Claire.

Chris: 0:17

And I'm Chris. And in this episode, we speak to Kay Backhouse from Lancashire in the UK. Now Kay's a volunteer at St. John's hospice, and she mentors children and young people around grief. She is also the author of'losing you, finding me', in which she writes about the death of her youngest brother said in 2019, and the profound effect this loss had on her.

Claire : 0:38

You might recognize Kay from my Let's Chat in a hospice episode last month with her and Maddie Bass, her colleague from the hospice, and we explored daily life in a hospice. But we also wanted to chat to case specifically about her own grief that she experienced after losing her brother in a complex death.

Chris: 0:53

In the next hour, we chat about a subject that a lot of people shy away from what happens when a death doesn't go smoothly or as planned. What if you have to see a loved one suffer before they die?

Claire : 1:05

These sorts of deaths are often referred to as bad deaths or complex deaths. And they can add an extra very painful level of grief and trauma to a loss like they did for Kay when her brother died.

Kay Backhouse: 1:16

The last few days of his life, where I mean, there's no other word for it, it was horrific. I was so frightened, and I was so in the freeze mode of trauma, I couldn't face holding his hand that fed into so much guilt and hurt for me following his death, because I felt like I couldn't be fully myself with him in that moment, because I was so frightened.

Chris: 1:38

We're so grateful that que is willing to talk about a subject you don't often hear discussed and to share what this was like for her. She believes that if she'd been better prepared or educated about deaths like this, then maybe the way her brother died wouldn't have been so traumatizing.

Claire : 1:52

No one wants to think about anyone suffering, whether it's ourselves or someone we love. But it's a fact that sometimes death doesn't go as smoothly and pleasantly as we hope. So there will always be people that have to deal with this kind of trauma.

Chris: 2:04

It's another area that we should educate ourselves about, even if it may never happen in our lifetime. We might know someone else that goes through it. And then too often these are the kinds of experiences that end up alienating people in their grief because others don't know how to talk about it.

Claire : 2:18

Kay was living in Australia with her family when her brother was first diagnosed with neuro endocrine cancer. And one day she received an unexpected communication from him.

Kay Backhouse: 2:27

He sent me a birthday card. He'd never sent me a birthday card his whole life. I was really shook, he literally put 'come home, my spirit needs you'. So I was just in tears, obviously. And my husband looked at me and he just went 'we're going home.'

Chris: 2:43

Syd lived longer than expected with his diagnosis. But this meant that Kay and a family were living each day knowing that one day Syd would die from this nasty and very rare cancer.

Kay Backhouse: 2:54

The anticipatory grief; that shocked me because I thought grief came after this was unexpected. And it was like this ball of energy that was inside of me that I just couldn't hold in.

Claire : 3:08

But despite all Kay went through, including Syd's horrendous final hours, his death has had a profound effect on her and how she lives her life now, how she views death, what hope has meant to her how she views the future and what she does with her work. This is a conversation that is anything but sad and depressing as you might expect. It's a story of hope.

Kay Backhouse: 3:28

His death has given me a second chance at life. It's my job to make the most of this life that I've been given that I was wasting for years. And now it's full of things that mean things to me, and only that I don't entertain anything now that doesn't mean anything to me.

Chris: 3:43

So let's really get into it. And we start this conversation with Kay introducing herself.

Kay: 3:50

My name is Kay and I'm based in Morecombe in Lancashire. Most of my week is spent working at the local hospice St. John's in Lancaster. I'm also a writer. So I spend a lot of time writing about things that I'm passionate about. And I spend time mentoring children and young people around grief. So people who've lost parents, siblings, grandparents, usually someone very close to them. And if you can't find me in those places, then I'll be practicing yoga somewhere meditated somewhere, or I'll be out walking somewhere.

Chris: 4:25

Take us back to what, 15 plus years ago, then so you move to Australia family time there for a decade pretty much and then came back to the UK and it all sort of went a little bit wrong family wise take us back to what that was like.

Kay: 4:41

So we moved to, or rather made the decision to move to Australia, in 2006 is when we made the decision. We were away on holiday with our children. They were seven and five at the time. I'd say my husband was more than happy than I was. But conversation started and he was keen to move. It took me a while to get on board. I have to admit, I wasn't I wasn't that keen. I'm a homebody, and I was pretty happy at the time. So I thought I was just was quite fearful of the idea of moving to the other side of the world with two young children. And we didn't know anybody. We'd never been to the country before we'd never even visited never been on holiday. I hadn't flown past Greece. So it was quite daunting when we made the decision. But yeah, so away we went first of December 2007. We left the UK, left jobs, sold the house shut. The bank accounts literally, like sold everything and just took four suitcases to children arrived in Adelaide never been there before in a heatwave in a drought and just freaked out. We were like, What the hell have we done to the point we rang the shipping company, like two days later asking them to take it back. We were in full panic mode. But really, we were just suffering expected anxiety about what, you know, the decision we just made. And so we just tried to put one foot in front of the other initially, we didn't have a job, nothing. So we had interviews lined up. And within two, three months, I had a job secured. We had a mortgage secured, we had the boys in a school. And so things did start to progress. So it was so it was positive. But I was very adamant. I was gonna give it two years. And if it didn't work, we'd go back. But yeah, 10 years. We got past that two years, and I was just in love with the place. It's a wonderful country. I missed a lot of things about it. Obviously, the weather is definitely one that I miss I especially this summer is horrific, isn't it? But yeah, we had a wonderful, wonderful life. But I would say it's a wonderful life that we had on paper, we had very difficult times personally, we have difficult times in our marriage, lots of ups and downs. And when you have all that going on when you don't have family with you, we didn't know anybody in Australia, there was no family, no friends, we had to start from scratch. As I'm saying that now there's a whole lot of grief and loss with that, which I think there is an actual thing called you may know this better than me. I don't know if it's immigration or migration grief. And I don't think I appreciated just how much that was going to affect us.

Claire : 7:30

Tell us a little bit about what you left behind them. What was the family sort of friend set up that you had back in England that you'd left.

Kay: 7:36

So my family, very close, both my parents, three brothers, and my husband has a big family. So he has the same he's one of four. So he's got three siblings, and his mom and grandparents were here. And then all our friends, you know, friends from school, like they've known us for for many, many years, that you just have that, I don't know, you have that connection, because I was 28 at the time. So my husband would have been 35. So rebuilding at that age is, you know, those sorts of friendships and close connections is quite daunting, it's quite overwhelming. And in actual fact, we didn't think it would affect the boys that much because they were quite young, they were seven and five, but on reflection, and we'd speak to our sons about this, our younger son definitely was affected, even though he was only five, it definitely triggered some anxiety within him. Because there's a sense of being taken away from your roots and everything that you have been used to. And even though you're with your parents, still, there's a whole other group of people that have been a part of your life. So there's, there's a lot of difficult work around that which we were very unaware of at the time.

Claire : 8:53

So you set up this life and you stayed longer than you thought in Australia. So tell us what it was that brought you back again?

Kay Backhouse: 8:58

So we moved, as I say, in 2007. And we made a trip back to the UK in 2010. And during that trip, I noticed there was a real change in particularly my younger brother said so physically looked very different. And I was bit concerned about him but didn't didn't really say anything at the time. We'd sort of drifted apart a little bit since I'd left Australia. And then in 2011, I got a phone call from my mom to let me know I've been diagnosed with cancer. It was 28. And I was just like my mind was blown because he's my younger brother, for one and out of the four of us. And I'm sure every family can relate to this. Every family has a golden child. He was it. He was never in trouble. He never drank. Never did drugs, never smoked. He was the funny one. Essentially it was the goodbye of the family. And he was the youngest. So it was I was just like, This can't be right. How can how can it be him? Instantly we reconnected, of course, I spoke to him on the phone before he went for surgery. And it was like the past few years of not not really speaking, much just didn't matter, we were just reconnected immediately. I think that was the first time that I felt like something had shaken me, sort of to the core, like it affected me, and made me reflect on my own life. And I'd guess it was first time I was aware of my own mortality. I think, even though I'd experienced death in my family before, and I'd experienced significant grief when I was 18. This was different. It was very, very different. I didn't think about jumping on a plane and coming home. But definitely there was some cogs turning thinking, Well, what where's this gonna go? Like, what's going to happen? How my parents going to cope? And I was very much in people pleasing mode back then. So I was very much about how can I fix this situation? How can I make everyone else feel better, I wasn't really thinking about myself. And as the years went on, throughout his sort of cancer journey, he was then told in 2014, that there was nothing else that they could do, and that it was definitely terminal. And he may only have a couple of years, he hopped on a plane immediately to come and see me in Australia, to stay with us, which was unbelievable. We have such amazing memories of that trip. But they were the first questions that started to come out. And he was dying to ask me, or push me sort of subtle hints about me coming home, he would never directly asked me, because that's how he was. But he just, you know, was posing these kind of, hypothetically speaking, and I was like, Well, I know what you're doing. And then in 2017, he sent me a birthday card. It never sent me a birthday card his whole life. It didn't actually think, birthdays or anything special. He always said they were stupid. What do you need to be bothered about being bombed for you are just you didn't do anything. So I was his view. So when I got this card, I was really shocked because it was in his handwriting, which I've only very few things in his handwriting. I'm from when he was little. And I earned this card. And in his own words, and I quote the words in my book, in his words, he asked me directly to come home electorally put come home, my spirit needs you. So I was just in tears, obviously. And my husband looked at me and he just went, we'll go in home. And it was really difficult, because we loved our life there. And to sacrifice all of that, sell everything again, leave a job I loved I loved my job over there had a wonderful life. But I just couldn't imagine not answering his call. I just couldn't, I couldn't ignore it. So six months from that card, we flew home and shipped everything back. All the same stuff would ship 10 years. Same stuff as everything. Yeah. So we landed back in, ironically, December 2017, the same month, the same week, exactly. 10 years later.

Claire : 13:24

Wow.

Chris: 13:25

Because you talked of having a really close family, large family, both sides, but really close family, even with that spell of not much contacts that you'd forgotten about once this diagnosis came in. Did you understand straightaway, his request for you to come home? Was that purely sort of him thinking of himself? Was that him thinking of the family of your role in the family? Did you? Did you have any questions around that? Or is it just that makes sense?

Kay Backhouse: 13:53

That's a really good question. Actually, no one's ever asked me that before. There was part of me thought it was about him. I didn't think it was about the family. I don't think he was calling me to come home because he felt that family needed me. It was a direct call to him. He was worried he had he had worries about us coming back, and particularly my husband not being happy because he knew my husband really doesn't enjoy living in the UK. So he knew there'd be challenges, but I think it's hard when somebody's being told they're going to die. And there at the time, he was 33 when he sent me that card. I don't think it's difficult to ever be able to be in somebody's head and know why they wrote those words. I think you're in a completely different mindset to anyone else.

Chris: 14:50

On a similar note, but not directly related. When he came out to visit you in Australia and said that you had that time we've got the diagnosis of being terminal. What was that? Like, because we all sort of surmise, you know, if you were given X amount of days, months to live, what would you do? And here was he with a terminal diagnosis leaving the UK to visit his sister, older sister in Australia. So that that must have been a really weird time of of joy and happiness and reunion. But also, we must try and make these experiences count for something. What was that like?

Kay Backhouse: 15:23

Absolutely, absolutely. So my mom and dad after we got the diagnose the final diagnosis, my mom and dad sat him down and said, right, what do you want to do? And he said, I want to fly business class to see my sister. That was like, a definitely wanting to do that. But yes, it first place he wanted to come was to see me, I think it was the first time as well, where he felt he had a permission slip, if you like to just ask for what you wanted. I mean, later on, he became quite frustrated. He had lived his a lot of his life in fear of making those big choices, big decisions. You know, he wished he'd gone to Australia sooner, you know that he had quite a lot of regrets at the end. So it was really nice for him to be able to just go Yes, let's go. I want to go see my sister now. Because kind of have to because, you know, I don't know how long I'm going to have now. And it was the first time I experienced I think what genuinely feels like bittersweet. It you know, the sadness and joy next to each other. It is the weirdest, you know, it's like when you have happy tears, you cry when you're happy. And you're trying to make sense of why the hell you cry. And when you're actually happy. That feeling is exactly that feeling. And we remember them arriving. And we were stood in the kitchen and having a glass of champagne to celebrate them being there. But I was literally is the first time I was properly in the present and properly taking notice of every moment that we were having together. And it felt like we were kids again. Yeah, we just overlook any anything that was ever happened in the family. It was just like, everything just got forgotten about didn't matter. nothing mattered. Just us being together, not doing anything particularly fancy. We didn't in the three weeks he was there it wasn't. We went to went to cinema. We went out for lunch, we went for walks. We called on the neighbors and sat in the garden till late at night looking at the stars. It wasn't anything expensive or full of big gestures. It was all the small stuff. But yeah, it was hard because it was the first time I'd had to hide my anticipatory grief from him.

Claire : 17:41

How was his physical health at this point? Was the cancer sort of impeding him in any way?

Kay Backhouse: 17:45

No, no, he was actually quite good at that point. Where was it? Where was the cancer started, when he was first diagnosed, it was a four centimeter tumor on his thymus, which is very rare place for a tumor to appear. And it was a neuro endocrine tumor, which are also quite rare. Well, they're very rare. So he was one in 5 million, which is why there was very limited treatments that they could offer, well, really, there wasn't anything that they could offer him. That gave him any chance more than a 10%. So the prognosis was never good, even from the very beginning. But they did try surgically remove it to begin with, but then it reappeared in the same place and reappeared in his lymph nodes. And that's when it was classed as stage four. But then it wasn't impeding him then in 2014. And actually, he did quite well for the following years. And he did live way longer than what they expected because of and there's a lot around that probably too much to talk about now. But there's a lot around that in the book about the different paths he took, which did give him a lot longer. And in fact, one at one stage, he had a scan where his tumors shrunk without conventional treatment. That was amazing. We actually thought me recall was occurring at that point. But yeah, later on, it spread to every part of his body except kidneys, or his stomach. But I think it was pretty much everywhere, everywhere else. And that tumor that started at four centimeters was 15 centimeters by the end while

Claire : 19:26

he was going through all this and you're sort of watching it. Did you know that what you were going through at that point was grief, did it feel like grief or at that point? Did you think maybe grief or something that happened after somebody died? What What were you going through yourself emotionally,

Kay Backhouse: 19:41

The anticipatory grief; that shocked me, because no, I didn't know that that happened. I thought grief came after like it had done in my life before. This was yet unexpected. And it was like this ball of energy that was inside of me that I just couldn't hold in. So at night, I would just sob cry, just try to get it out of my system really, without him seeing it. And at that time, I didn't share that with him. I felt very protective of his emotions at the time. So I didn't want to, well, you know, I didn't want to ruin the mood. It was just stay wet. You know, we had a lot of dry humor like that. And I just thought it's not that it wasn't the time to tell him. That's how things were changing. And I think there's always a part of you, especially with siblings. And when you close, you know, instinctively that someone's feeling that anyway, you don't need to tell them.

Claire : 20:42

Did you allow yourself to think about the fact that he was dying? Or was there hope because you had that tumor shrink? And obviously went away and came back again? Or did you just live in hope that maybe that wasn't going to be the end of the story?

Unknown: 20:52

I lived in hope constantly. Until I couldn't anymore? I think that is the truth? I? I think I was because I think there's a couple of times that some people sort of looked at me as if, I don't know, maybe I was being a bit too hopeful. And I needed to be, you know, brought back down to reality. But for me, I just, I was always hopeful. Because I just feel like there was always a way it's like, if that doesn't work, we'll move to the next thing. And if that doesn't work, we'll move to the next thing. And I felt I needed to do that to keep him going as well. And we were a team, we were making headway. And we were we were finding out new things. And it was exciting. And we sort of got passionate about life again together. But it wasn't until the final sort of scan that he had at the end of 2018. And that was one of my hardest days. Because that was acceptance. And that's the hardest bit. Yeah.

Claire : 21:56

How long was it from there between that and him dying?

Kay Backhouse: 21:58

Four months.

Claire : 21:59

And was that hard? Was he then physically in a bad place as well? Were you having to deal with sort of new symptoms and things?

Kay Backhouse: 22:06

Yeah, he's physical steak was bad by the time I came home. So some things were because of the type of cancer we had. Most people think about cancer as breast cancer, bowel cancer, brain cancer, so it's all associated with an organ, whereas neuro endocrine is not the tumor can appear anywhere in the body, and it will affect your hormonal system. So it will excrete an excessive usually amount of a certain type of hormone. So for said it was cortisol. For other people, it's serotonin. And when you get a flood in your body, particularly of cortisol, your body starts to break down from the inside. So he had four fractured vertebrae, his skin was covered in stretch marks, even though I hadn't put anywhere on. It was like tissue paper, like an old person, he was just disintegrating from the inside because of this high level of cortisol in his body. So it was this tricky balance of how they kept his levels under control. It was like a game of Whack a Mole, you're just trying to hit wherever the next thing appears, you just gotta hit that one, and then go and hit another one. And it just, it was never, never ending, and it would appear from nowhere in different parts of his body. So that was really challenging. So by the time I flew home, he was he was bedridden with blood pressure through the roof because of the hormone imbalance in his body. So it was like he's running a marathon when he was laid down. And quite quickly, he then had what's known as a adrenal crisis. So he almost died in front of us in the living room, because his body was just dying, he had low sodium and he wasn't aware. And because that was all to do with the imbalance of what the cancer was doing to his body. So at that point, that's when he had that final scan, and we got the results from there. And yet at that point, he did get out of bed, but it was, it was very, very difficult for him.

Chris: 24:11

So a few minutes ago, you mentioned being full of hope, up until a point when presumably, you felt hopeless, or, you know, you are without hope. What was that experience like?

Kay Backhouse: 24:22

It was unnerving. Because as a person, I've always been positive, always optimistic, probably sickeningly. So to some people, but I, here's how I am. I do always see the glass being half full. So when that happens, where do you look for the half in that? I found that really, really challenging? And I guess I found some hope in the moments that we still had together. But that was that was a challenge as well. But you know, he made jokes and laughed, and you know, we we still continued all of that and I could not see past the potential date that was looming, I couldn't see what life was going to be like beyond that, I didn't want to have found that really, really difficult. So I can't say in that at that point that I did find any hope. It didn't. The hope came later.

Claire : 25:20

Yeah, that's really hard. And unfortunately, it didn't sort of get better from there, either. And when we were first chatting, you were telling me about Syd's death. And the fact that was a complex death has been known as a bad death. At one point, I think terminology wise, and that's not something you hear about very often. And that is just a privilege really, to talk to you about on here. Because I don't think a lot of people would know how to talk about that. But like you told me and educated me about people are going through watching a loved one die in a very complex way, which is not as people would hope or imagine or want it to be. So tell us a little bit about what a complex death is, and what that was like for you.

Kay Backhouse: 25:55

Once Syd knew that it was dying, which silly, isn't it, we're all dying. But once he got a better idea of when he was gonna die, I promised him that he will didn't suffer that, you know, whatever happened, because his biggest fear was not being able to breathe. And it's well known, I think, for all of us, none of us like the idea of that feeling. And he said, I don't want to be in a position where I'm struggling for breath, or I feel suffocated. And I said, Oh, no, no, that won't happen. I'll speak to the doctors. And I've worked in the world of healthcare for a long time, I'm really confident speaking, I used to work with surgeons in theater. So it wasn't a big deal for me. And I said, I'll speak to them, make sure that they're giving you the medication that ensures that, you know, that doesn't happen. And so I genuinely believed that we'd be able to control all of that as he came to the end of his life, Syd had tricky issues with pain throughout the final couple of years of his journey. And that sort of, you know, did concern me because it was hard to get on top of it, he has a lot of nerve pain, which is well known that it's very difficult to control. But also people forget that every person, every human being is unique, what you feel, and what I feel are very different, with different nervous systems, everything about us is completely unique. And said just didn't get relief from any of the drugs he was being given. I mean, he had in the last eight weeks of his life, he had enough drugs going into him every day to knock out an elephant. The doctor said that, you know, they couldn't understand why he wasn't getting the relief he needed. So I did get a little bit concerned, as we were sort of, you know, as he was deteriorating further, the last few days of his life where I mean, there's no other word for it was horrific. And obviously, there's a level of protection that I sort of give too, I guess, my family, and it was within that last day, where I don't share certain things. But a complex death is a death where it's not possible to control that person's pain and suffering, and they're very much aware of, or he certainly was of what was happening, which I know can be quite shocking for some people to realize that it does happen. It doesn't happen to everyone. I work in hospice. Now. I know it doesn't happen to everyone. And that has helped me a lot recover from the trauma of that day. But it does still happen to some people, like I said, and I am quite passionate about how do we stop that happening?

Claire : 28:42

If you'd have known that sort of thing did happen to people or it might have been something that might have happened? Do you think that would have helped you go through it? Did it sort of take you by surprise?

Kay Backhouse: 28:52

It took me by surprise, it took the whole family by surprise. We all looked at each other and just said, this is never happening to any of us. If I'd have known in advance that that was a potential to happen, I would have had more time to plan a contingency for him. And what happened was in that last day, and it was all happening in the moment, it was too late and I couldn't get past red tape and forms being signed and too late for that. So I felt if we'd have known in advance, you know, I might have thought differently about it. But yeah, it was a complete shock to me.

Chris: 29:27

Was there anyone that could have or should have briefed you on that educated you told you I know from listening to the episode you did on working in hospice with Claire last month that said really wanted and needed people to be straight with him to be honest with him. Could there have been more chatter around that this could be nasty rather than well, we'll just try a bit more we'll try a bit more you know, we'll keep going after comfort and and peace. Do you expect different?

Kay Backhouse: 29:55

Possibly one thing I always say is none of us have any blame or anger towards any person that cared for sad, or the hospice or any, anything like that at all. It's how do we prevent this in the future? Or how do we give the person more control of when their life ends? And that's around the assisted dying piece, which obviously, there's a lot of stuff going on around that at the moment. I know, this is probably too much of a political subject right now. But yes, there are things that could be done that I think would avoid, because it isn't just said, it said suffered 100% He suffered, but the family and what the impact is on you beyond is just as one example, I was so frightened, and I was. So in a freeze mode of trauma, I couldn't face holding his hand that fed into so much guilt and hurt for me following his death. Because I felt like I couldn't be fully myself with him in that moment, because I was so frightened. So it has this knock on effect across the entire family. It's not just affecting one person. Maybe we could have talked more about what if this happens? Could we do X Y Z? Or if this happens, could you do X Y, Z? And yes, we were very clearly a very practical family. So I think maybe a few more discussions around that could have helped. Yes.

Claire : 31:30

It's almost like at the point that his suffering ends a new sort of suffering for you started. So how did you cope? How did you work through that sort of trauma.

Kay Backhouse: 31:39

I don't remember a lot about the first year. And it's quite frightening to think how was like working and, you know, driving and functioning at some level, but I wasn't there. I wasn't fully there. I didn't even know I had post traumatic stress symptoms, until it was probably a year 18 months afterwards, when I described my symptoms to the GP, because I'd become so debilitated with anxiety, overwhelm panic about sort of situations that wouldn't normally panic me, it'd be very something very, very simple. And I would sort of overreact to everything. It was impacting every every part of me. And so yeah, the first year, I don't really remember a lot. But then COVID happened. And the blessing in disguise happened. There was an awful lot of negative things that happened through that period. For so many people, including us, we lost businesses through that period, it was horrific for us. But because I had to stop, and I could stop, and someone said to me, you can't leave your house for the next three months. I was like, I think it's about five days into the first lockdown. I thought I can actually, like hear myself, feel like this could be an opportunity for me to really start working on how I'm feeling and figure this out. Because I can't carry on my life like this. Because I feel like I'm dying with him. And I need to find a way of how can I find meaning in this life without him. I was grieving what my life should have been with him. So I came home for I came home to be with him and have my future with him. So and I just decided to use that time as best I could, which was initially just picking up a pen and a journal. That's that's kind of how I started.

Claire : 33:38

When you look back over all this loss and the different stages of you know, finding out Syd was ill and the anticipatory grief and then going through the death, which was traumatic, and then the grief and trauma afterwards. And then like you said you lost businesses and, and money, which was another huge loss for you. Is there a stage in that when you think that was the hardest for me personally to work through? Was there a point when it it all culminated? Or was there a point in the very early stages of finding out when you look back? What what does it look like to look back across all that? Is there a worst point or does it just all sort of merge?

Kay Backhouse: 34:13

It does, it does merge to a degree. I think there's no doubt the day died was the worst day of my life. I'll never get beyond that. I can cope with the loss of businesses. I guess that's how I've managed to cope with loss of businesses, because we lost three lost everything. So I feel like I was able to accept the loss of businesses easier, because I'd lost my brother. So it's kind of like Well, nothing's as bad as that. It makes you kind of feel us when that happens, because it is kinda like well, throw what you want at me. That's nothing's going to be worse than that day. So we can get through anything. So it's made definitely made us as a family. I, particularly my family at home, like me, my husband and my two boys, their strength in us as a family unit from that as well. And then the businesses is yes is massive. So I don't think anything was, yeah, worse than then that day.

Chris: 35:19

Don't want to dwell on this too much. You just mentioned their husband children in this was the case in Australia. This is the case. Now back in the UK, your brothers died starting to think about putting your life back together or rebuilding it after this sort of real horrendous episode. Just touch on briefly, how do you do that when you're also raising children and keeping family together house together, putting on a brave face? How do you make the time to sit down with your journal during COVID? To go out for a walk or whatever? What was that experience? Like?

Kay Backhouse: 35:53

I mean, the boys were a bit older back then. So that did help. I mean, I wasn't, I wasn't homeschooling anyone. So they were older than that they'd left the two of them were actually working for us. So the bases closed. Obviously, we'd locked down initially. So we were all at home together. Now, we all felt quite good about that. Because we were sort of hearing these stories about families, you know, falling out and how difficult it was living together, and all been in this space. And we were like, well, this is so easy for us. We've done 10 years in another country, just the four of us. This is this is our norm. So we didn't find that bit particularly difficult. But in answer to your question around, how did I start to think about rebuilding, is I started to get honest with myself, because I decided, well, if everything's broken, and my life isn't gonna look the same anymore, my life's never gonna be the same as it was that chapter in my life ended that day. How did I want to rebuild it? Did I want to rebuild it the same? Well, no, there was a lot of things I wasn't happy about. And I probably hadn't been honest enough with people about that. So I write about this in the book, there's a chapter called The void. And I sat one day thinking, I don't have to carry on, I don't know how to start this process. And I sort of was looking at a picture of me and my brother and just thinking, please just come back, like, just or tell me what to do. I was just desperate for him to connect with me. And then I just thought, I'm gonna, I'm gonna start looking back through his messages. I've kept all of his messages. I know, some, some people will think. And it's good now because I don't really care what people think. But some people think are, you know, that means you haven't let go. If you've still got messages in your phone, or you still got I don't believe in that there are no rules with this grief doesn't have rules. And for me, it keeps him part of my life, which I like. And it's how we are together. I like him on my favorites list on my phone in the car, I like still seeing his name, I'm not gonna take it out. And I flipped back through his messages. And I saw a message that I'd written to him, it was that 10 days, maybe before we died, and it was the message I wrote him where I finally felt it was time to tell him how I felt about him dying. And what that would mean to me. And that I was just like, I don't know how I'm gonna carry on without you. And you're just gonna leave this massive hole. But I need you to know how much I love you. And I know you know it anyway. But so I basically sent them this message. And he replied, and he was a man of very few words. He replied with I know, so he was acknowledging what I'd said. And he said, Everything leaves a void. And when I got that message originally, I didn't really think anything of it. I just thought, yeah, it's agreeing with me. But when I read it in that moment, the meaning changed. And I was like, oh, everything leaves a void. Yes. So there's a hole in me that I keep trying to fill with things, and people and my husband and children and family. And what is that about? That means I'm attached to things. So when I lose them, I don't feel whole. The work I need to do is I need to be whole on my own. I need to not need people and things. And it was like this lightbulb moment. And I just grabbed my journal. And that was it. I was I was off and I just thought, yeah, I've got to do a lot of work, a lot of work. And it just took a lot of courage. But I think again, that just came from I've been through the worst day of my life. Nothing was worse than that. So I just thought I'm gonna just let it all go and see what sticks. It wasn't easy at all.

Claire : 39:54

One of the things that we ask all our guests is about the question why? Because I think it's an interesting interesting question. Turn around death, we often know the what, who, how, when, but we don't know the why. And that can really harm people or it can help people. And we've heard every answer in between really. So what was your relationship? Like with the question why and why was this happening?

Kay Backhouse: 40:15

That question why used to drive my brother up the wall with why this was all happening to him? But then it got to a, not why is it happening to him, that didn't bother him anymore, what then bothered him was why? he was like, like, so what's this gonna mean? Like, he had a engineering brain, it was obsessive cars, and engines and technology. It was it was known for that. So he was trying to figure out everything. He wanted everything to be logical, and it drove him crazy that it was kind of this mystery that that he wouldn't get an after he died. And my mom said to me, well said, You'll have all your answers. Now. You'll know why. And I just thought, that really made me feel good. Because I thought, Yeah, Mom, I think he will. I think he'll have his answers now as to what the soul means. My why now is his death has given me a second chance at life. And that's how I see it. Now. It's my job to make the most of this life that I've been given that I was wasting for years on meaningless stuff, that meant nothing. And now it's full of things that mean things to me, and only that, I don't entertain anything. Now. That doesn't mean anything to me. And, you know, I'm unapologetic about that as well.

Claire : 41:34

What's your favorite memory of Syd?

Kay Backhouse: 41:38

I mean, child memory. My, one of my favorite memories is Christmas time. We used to dance around the coffee table in the living room dancing to Shakin Stevens, Merry Christmas, Everyone. And even now, I cry every year when that song comes on, but I'm kind of, I'm crying. But it's a little bit happier tears now than it was. Yeah, but it gets me every year. Do I have a favorite other memory when he was older, and there were so many when he came to visit us in Australia, I could I don't think I could give you on from then. It is just hilarious. I'm Mrs. Humor. I mean, I get his humor in my boys. Both of them have got a dry sense of humor like him. So that's kind of nice. I see. They'll they'll say something or they'll laugh or they'll say a joke. And I say, you know, oh, he reminded me of uncle said then. And it's lovely.

Chris: 42:29

It's really powerful. When you talk about how your life has changed as a result of Syd's experience. You remarked earlier, though, about him having regrets? What impact has that had on your life now about living to have no regrets?

Kay Backhouse: 42:46

It's why I wrote the book. You know, since I was a child, I wanted to write a book. But society and culture and teachers and people taught you know, I had this image that I was never good enough that you know that I didn't mean to uni, I didn't have some sort of creative writing degree. So I just thought I wasn't capable. And his regrets in life made me go, I've got to do it, I've got I've got to do it. I cannot get to the end of my life whenever that may be. And think I wish I had, because that's what happened to him. I wish I had. And one of his biggest regrets was when he was 16, he had a chance to go to Naval college. And he didn't go, my dad tried to encourage him to go. And he didn't, he wasn't much of a risk taker. So I don't know if he just felt like it was too outside of the norm at the time. But it was a definite regret. And he'd never discussed that with anyone until he got to the end of his life. I found that really, really upsetting that he'd never shared that. So I can't do that. Because it just hurt too much witnessing that in somebody that you see so much of yourself in. It's like, you're literally looking in a mirror. And I just thought I can't do that. So yeah, so the book, my career has completely done a U turn. Like Claire said, I now earn hardly any money. But it's the happiest I've ever been. I love my work. I love my work so much. And I just get so much joy out of what I do. I finally have a true sort of authentic marriage as well. Like there was a lot of work to be done there, which we've done. And we've come out the other side of that, which is probably one of my proudest achievements. So yeah, there's nothing really that's the same as it was before. I mean, I look a bit the same!

Claire : 44:47

It's an amazing story that you went through all that you did in that hospice with you know, losing Syd and then now working in a hospice and just getting so much hope and joy from that which people can hear you talk about in the other episode that we did with you? Is there a point when you look back and you can see that that hope returned? And how do you feel about hope? Now having had that point when you lost it at one point.

Kay Backhouse: 45:10

I think hope returned fully returned probably a couple of years ago, probably the star 2023. But when I say that, I mean, real conscious hope I had then I think before that, I had subconscious hope. I think I never fully lost hope in getting through it. Eventually. I just didn't know how long it was gonna take.

Claire : 45:36

I love how you say'hope'! Great pronounciation

Chris: 45:40

I think this will be a really tricky question. You talked about sort of Syd's death, that day being the worst day of your life. And I sort of asked this question declared asked to myself as well, this podcast episode, your children might hear it, your husband might listen to it? How do we decide? How do we choose what feeds into what could be the worst day of our life when it revolves around somebody dying? You know, you have other siblings, parents, strong family. So for you to say your brother's death, your youngest brother's death was the worst day of your life? How do you how do we come to that sort of conclusion, and then to have that real force of strength afterwards to say, I've been through the worst. So now I can sort of deal with anything.

Kay Backhouse: 46:21

Yeah, that's interesting. My husband and I were only talking recently about sort of the past five years, and we've had a lot of other obviously losses with the business. But he's also had some huge health losses. And we were sort of saying, I feel like there's nothing that could be thrown at us now as a couple, and it could break us like, I feel we feel. I like the word immovable. I feel like we are immovable now. And I think there's anticipatory grief now in a different way. Because I'm worrying what happens if this happens to someone else in my family, it's hard to not be worried about that day being trumped by another day. Like, could there be something that is more cataclysmic than that? What would that be? Would that be, you know, my parents both died at the same time in some horrific accident? Like, I don't know. I do think about those things sometimes. But yeah, I think, yeah, there's there wouldn't be anything that would be worse at this point.

Chris: 47:28

I mean, particularly with well being prepared. And part of the reason we do this podcast is that we, we want to challenge people, or encourage people really to think you may not have experience, whatever, but you will, just because you didn't have something to reflect on. Now, it doesn't mean you can't be better prepared for something that might happen in the future. That's convenient, whether that's loss of a loved one, loss of a business, loss of a career, you know, it's something that we all need to be thinking about and being prepared for. So you've gone through that worst day of your life, maybe when you were the most ill prepared for something of that magnitude. And yes, you will have further losses in your life, but you are now better prepared for it better equipped for it, you've you've learned so much. And that experience, you've had an opportunity to practice the art of journaling, of writing down of learning about honesty, all that sort of stuff will stand you in a much better stead for future sadness for those seasons that we know life destroyers, where it's really difficult. So I think that's what I that's what I personally take away from listening to listening to your sort of story.

Kay Backhouse: 48:31

Yeah, I feel that because I teach children and young people and support them through the loss of people who are significant ly close to them. It's a program that basically follows the analogy of the seasons. So autumn, winter, spring and summer. And it's impossible to teach that and not learn it for yourself at the same time. And that's really been comforting for me. I think it also makes me think about this whole idea of non attachment in life in general and trying to stay open to everything, but not attach yourself to things, people. And it's tricky to do that in a balanced way. But you're exactly right. You're not going to go through life and not lose people. That's not going to happen. It's not realistic. So you are setting yourself up for a huge amount of suffering. When you live your life with the illusion that everyone's going to be with you forever. I think what couldn't have prepared me with said was that he was like the youngest of the four of us still now. I think each year that passes I still think I can't believe he's not here because it just felt like it shouldn't have been him. So I think it is this non attachment that helps with being able to be prepared for loss again in the future. And I guess now I have Have a blueprint.

Claire : 50:01

And also, you know, we're all scare people, when we talk about deaths that are complex, and you know, traumatic experiences like that, because some people will hear this, and it will add to their fears of things in the future that could happen. But I think it's important to highlight that, like you said, if I'd have known about this sort of thing, or I could have just been aware of the situation, it actually would have made it easier for me, and not harder. And one of the things when we were chatting before we decided to do this episode, was that you were talking about how natural death is. And I think that's really encouraging. Do you want to just say some of the stuff that you were saying about that? Yeah,

Kay Backhouse: 50:36

Absolutely. And a lot of this came from following Syd's death, and me trying to make sense of it, find comfort in some way. And death is a natural process. And a friend of mine sent me a text message. And she was trying to comfort me following catch up that we'd had together. And she gave me this analogy. And she said, Remember, when you were having Louis, who's my eldest son, she said, Remember, when you were having Louis and you were, you know, in absolute agony, it was 12 hours of hell. And, you know, you wanted someone to shoot you in the head. And she said, you remember that? And she said, and then you remember when he arrived, and that huge amount of relief and kind of like a thank God, and you forgot all about that. She said, maybe that's how it was for said, and I just thought, yeah, that's like one of the nicest things anyone's ever said to me in a moment that I really needed it. And it made me think differently about death. And I started to think about the birth side of things and how they are the same, but death is in reverse. So it's just the same as birth. And the longer I've worked at the hospice, I now see this, and I've learned and educated myself about what that dyeing process looks like, what you would call the normal dyeing process for most people. And it is, you know, like the film Benjamin Button, it just is like that, it's it's been born again. But in reverse. Similar things happen, you've sleep a lot, you don't want to get out of bed, you quite weak, you're tired, a lot of the time, you may be sort of lucid, and in and out of sleep, even to the point of them becoming in and out of consciousness. But that's not something that's the same as sleep, which I never really thought about that because lots of people talk about, you know, you just go to sleep when you die. But that can be really frightening for children, because then they're scared to go to sleep and guess they don't wake up. So it's not the thing to say to children. But you know, you slowly stop eating and stop drinking. Now, families tend to want to urge their family member to eat and drink. And they feel like they're not comfortable if they're not eating and drinking. But actually, the body is naturally stopping the thirst sensation. And it's that's why the swallow sensation stops as well towards the end of life. So that's the body doing exactly what it is programmed to do. Just the same way when a woman goes into labor, she really has no control over when that's going to be how it's going to start. But the process the body goes through will just happen. The body knows what to do. It's programmed that way, it's natural. I started to look up lots of different things about this birth and death in the kind of mirror thing, I discovered that the average weight of a baby is almost exactly the same as the average weight of the ashes after cremation. So I was like I see that just confirms it. Once again, it's so very similar. And you know, the hospice sometimes it can feel like a delivery sweet to me. And I take comfort from that, because I feel it's the start of the next journey for someone. And you know, we should be reframing the way we think about things. It helps a lot. But it can bring people a lot of comfort. And it definitely brought my brother a lot of comfort. When I would talk to him about potentially, we know what was next for him.

Unknown: 54:11

So often, we look at death as a rude interruption to stuff just happening and it happened and it's bad. And like you said, the body knows what to do. It is a natural process. Yes. Unfortunately, there's a lot of diseases and illnesses that complicate it towards the end sometimes, but overall, the body knows what it's doing. And I think that's important. That is comforting. In a lot of ways. It's not something that's just completely out of your control, and the boy doesn't know what to do.

Kay Backhouse: 54:36

Yeah, exactly.

Chris: 54:39

Hopefully, you're ready for our last question. It's not about a tool shed this time was it was when you spoke about life in the hospice, but we love to ask all our guests about something that you could pass on what have you nurtured what have you cared for? What have you developed as a way to pass on to somebody else? That's, that's healthy, that's helpful. And so that question is, what's your Herman?

Kay Backhouse: 54:59

My Herman is when I will fell at my absolute worst and felt like I was losing hope. The thing that kept me going was this idea that inside of me, I was very aware that there was a tiny little pilot light inside of me that never went out. So similar to what you see on the old gas burners, and they'd have this pilot light that would just keep going and going and going. I felt like I focused on that a lot. As I was meditating, when I was feeling like I just had no answers didn't know which way to turn, that inner pilot light kept me going, because I thought, it's, it hasn't gone out, it's there, it's there, and something will keep sparking it, and something will come along, that will make that flame bigger and bigger and bigger, until and lit up again, and people will see me looking like I used to, and I will get that spark back eventually. And as long as I'm breathing, that pilot light will keep going it will stay alive. And that is my Herman.

Claire : 56:13

Maybe you're at the low point Kay was talking about after facing some form of grief. It's a beautiful reminder that while we are still here, still functioning, still breathing, we have that small pilot light in us. And as long as that's still going, there is always hope. Then, hopefully, one day something will fan it, feed it, encourage it, and it will start to grow bigger again. But it takes time. And I also believe that along the way, we have to be careful not to over protect it. Because for it to grow, you do need to allow things in to fan that flame. Like Kay said, it's not easy work, but it's definitely worthwhile. And don't forget, even the darkest night cannot overcome even the tiniest light.

Chris: 56:52

To find out more about Kay and to read her book 'losing you, finding me' where she writes about her grief and her healing journey. After losing said, visit the show notes of this episode, or even her website www.kaybackhouse.com. You can find out more information about Claire and myself at www.thesilentwhy.com. And if you're enjoying the podcast, have you shown your support by leaving us a five star rating and review on Apple podcasts?

Claire : 57:16

This is a chance to tell us what you love about the show. But it also helps others discover it too. There are many bigger well resourced podcasts out there on grief, who might have 1000s of reviews. And so it's hard to even be found and compete sometimes. But the more honest, encouraging reviews we have, the more people will give us a chance when they find us. So please pop over to Apple podcasts and leave a review. If you don't have an Apple device. This is a bit trickier, but you could borrow a friend's for a minute, or I'm going to put a link in the show notes on how to do it from your computer.

Chris: 57:45

Apparently people need to hear requests for help like this seven times before they do anything about it. Don't be that person - show that stats are wrong, head over there now![clears throat] We're finishing this episode with a quote from the late American politician and civil rights activist John Lewis from his memoir in 2015; 'Walking with the wind: A Memoir of the Movement.'

Claire : 58:10

"When I care about something, when I commit to it, I am prepared to take the long hard road, knowing it may not happen today or tomorrow. But ultimately, eventually it will happen. That's what faith is all about. That's the definition of commitment, patience and persistence. People who are like fireworks popping off right and left with lots of sound and sizzle can capture a crowd capture a lot of attention for a time, but I always have to ask Where will they be in the end? Some battles are long and hard and you have to have staying power. Firecrackers go off in a flash then leave nothing but ashes. But I prefer a pilot light. The flame is nothing flashy, but once it is lit, it doesn't go out. It burns steadily and it burns forever."