Sam’s story: a podcast about death

Sam’s story: a podcast about death

Why start a podcast about death? Sam has been thinking about - or rather - avoiding thinking, feeling and talking about death and dying for a while. She avoided it because she often felt uncomfortable, awkward and embarrassed. Sam worried about upsetting others as she didn't know what to say and when. Listening to other people’s experiences, Sam realised that she’s not alone.

Sam created this podcast as a way of sharing how and why people talk about dying and death. What makes them start? Why sometimes people don't start - and if they didn’t, what they wish they might have said. Join Sam on her journey to exploring out how we think, feel and talk about death.

Hosted by: Sam Meikle

Produced by: Spark the Difference

Subscribe to the podcast: iTunes | Spotify | Google Podcasts | Radio Public | RSS feed

 

Here’s what Sam shares in this conversation:

00:09 These conversations are all real and can sometimes be a bit raw. Remember, you can always pause and take a break for a bit.

01:15 Welcome to the podcast! What’s inspired this podcast?

02:27 Memories from childhood: all the things that could kill Sam, including the sun

04:58 Sam's regret of not being there for a friend and not starting a conversation that mattered

07:34 The elephant in the room for patients, families and staff: how to talk about “it”?

09:35 A conversation that Sam started early, with her Dad

11:45 How this conversation lead to a remarkable shift in Sam's relationship with her Dad

13:05 The beginning of a journey figuring out how we think, feel and talk about death

16:27 The first of two changes Sam would like to see in the world: fewer missed conversations and more conversations about what matters, earlier on

17:25 The second change Sam would like to see: how we live. What if we took the time and space to figure out what was important to us - about living well and dying well?

A note on looking after ourselves: these conversations are all real and can feel a little raw. If you’re struggling with the content that we’re talking about, please seek support. This might be from a trusted family member or friend. The Samaritans Team are always available to talk and you can contact them on 116 123.

 

The full transcript:

[Introduction] Hello, you're listening to the About Death podcast and I'm Sam Meikle. Talking about dying and death can make us feel uncomfortable, awkward or embarrassed, as we're not always sure what to say and when. Through this podcast you'll hear why and how people start talking about dying and death and if they didn't, what they wish they might have said and the impact this has had on their lives and on the lives of those they love. Around kitchen tables, in pubs and cafes, we're having conversations to help you explore how you think, feel, and talk about death.

And this is the prologue to the About Death podcast. As I said, my name is Sam and thank you very much for joining me for this podcast journey that we're about to go on. I'm the host of the podcast and people keep asking me, what has been my experience? Am I clinician? Have I had a near death experience? What inspires me to do this podcast in the first place?

And the answer is no, I'm not a clinician and I haven't had a near death experience; my husband did nearly die before we were married with a very traumatic, complicated series of healthcare events. I suppose you could say I'm curious and trying to understand how we think, feel and talk about this thing that affects everybody in all of our lives. So in this prologue, I'm going to share a little about my journey, who I am and how I got here and what's inspired me to do the podcast in the first place.

So question one Sam, are you ready?

Yes.

What did I know about dying and death as a child?

Well, I grew up in Australia and it was drummed into us kids at school that there were many, many things that could kill you. For example, spiders could kill you, snakes could kill you, crocodiles could kill you, jelly fish could really, really sting and probably kill you. Sharks could kill you - and if you survived swimming with the jellyfish and the sharks in the ocean, you'd probably get dragged out to sea by some undercurrent and then you would drown.

I knew that cats died young from snake bites, from getting hit by cars or just disappearing. I also knew that cats killed things and I would try and nurse the little mice and lizards and wildlife back to health, pushing them around in my doll's pram with little blankets tucked around them. And then when the little animals died - because I never successfully rehabilitated one - I would perform burial ceremonies in our garden, complete with crossed twigs making the mark so that I didn't disturb the grave when I came to dig the next one.

I was very cautious and sensitive child. I became quite afraid of the world around me because obviously there were many things that could kill you. I also became afraid of the sun, because the sun could kill you, because of cancer. And I knew as a child that cancer would definitely kill you. I knew that cancer meant death. My aunt had lost two husbands from cancer. I didn't know her first one, and I really liked her second one. I remember he used to take me fishing and I remember his disbelief when I managed to hook my big toe by very exuberantly throwing my line back across my head. I was standing on one leg, with the other leg up like a ballerina… and I managed to hook my big toe.

But I remember being very sad when he died - but we didn't really talk about it. I never imagined there could be such a thing as a good death and that cancer didn't mean death. I just knew as a child it was best not to talk about really worrying and horrible things.

The first time someone close to me died, I was 33. It was my friend Malar. Malar had supported me through a difficult divorce, through moving flats and changing jobs. She gave me comfort and a pair of rose coloured glasses to see the world through.

She is one of the reasons I'm here doing this today. She gave me encouragement for these whispers of a purpose driven business that I couldn't quite articulate and she told me, you really, really can do it. Then life got busy, which meant that actually I slipped into busy-ness and I never made it for the catch-up coffee and returning her books. And one Wednesday afternoon in 2015 I received a call to say that Malar had died. She was terminally ill. And I didn't know. After the shock and the sadness had subsided, I felt a lot of anger. I felt that Malar had taken away my chance to say goodbye. That I could never tell her how much she meant to me and how she really helped me to be here today.

I felt really angry that after all the heavy conversations we'd had over the years, why didn't we - or couldn't we - talk about this thing? It made me wonder if I did something wrong. Did she want to be the woman remembered full of life and laughter, enjoying large glasses of red wine and Twiglets on the upstairs bar at our local? Or did she die alone in pain and frightened? And I will never know.

She didn't want a funeral. She never wanted to make fuss. She preferred to celebrate and to support others. And to this day, one of my regrets is not being there for her. Not knowing, not starting a conversation that mattered. It's a conversation that I never had, but I wish I did.

Two years later I noticed that I wasn't alone in this. I was working with a community trust to help improve their end of life service. And as I listened to the stories and experiences about death and dying from patients, families, carers, and staff, I noticed that beyond the systems and beyond the processes, the biggest challenge that people shared was that patients, family, staff, carers didn't feel confident to have conversations about dying and death.

It was the elephant in the room. And I became really curious as to why this was. People said, 'there's not one death and dying pathway. Everybody's experience is different.’ Some people will deteriorate rapidly when they are diagnosed with a terminal condition. Others will continue to live well until their death, which could actually be for longer and with better quality of life than expected. End of life medically covers many different conditions and this doesn't even touch on people who die unexpectedly or who are killed, which is happening every day in our world around us.

I remember one carer on the project said to me, 'Sam, should doctors tell patients everything that might happen? Or do you tell them nothing? Or do you tell them what you think they ought to know? Or what they ask to know?'

And a staff member - she was really junior and she said, 'Sam, I want to be better equipped to talk about this'. Because she came away from conversations thinking, 'oh, I really should have done a better job there.' And she said she'd go to sleep at night going, 'oh, maybe I should have said that. Maybe I should've said this.'

These stories showed me the importance of having conversations, but it's really, really hard. And you can't say, 'here are the three questions that you should always ask'.

I thought, 'right, I've got to figure out how to do this.' So I started a conversation early that felt really important to me. I didn't want to have the same experience that I did with Malar.

And that was a conversation with my Dad. He's 72 years old and lives in Brisbane, Australia. He's fit healthy and active. He goes on Park Runs and volunteers three to four times a week as a Justice of the Peace. We haven't always seen eye to eye and have sometimes really hurt each other over the years. And my Mum says that's because we are more similar than we'd like to admit (!) So this felt like a really big challenge to have a difficult conversation about death and dying.

I wanted to understand what it was and I wanted to do a hard thing for me and have that conversation with my Dad before we needed to have it. As I said, Dad is really well now and is very organised and meticulous. So he's got his will; I'm his Power of Attorney and I know where the spreadsheet called, "where the money is" is located.

And this is really, really morbid - but, I remember thinking as the eldest of four daughters - and the one who likes to talk the most - it's probably me who's going do his eulogy. And even though I'm his Power of Attorney, I don't know what matters to him; what he likes doing, how he likes to spend his time, what his preferences and wishes are for end of life.

A colleague of mine, Helen Sanderson, had produced some questions called Living Well and Dying Well, and I invited Dad to do them with me, writing by email. I sent him an email, 'Hey Dad, there’s this is thing that I'm doing and I'd love for you to join. Would you be interested in?' And he replied by email that he would.

And what happened was remarkable. So I each day I would send a question to Dad and that day or sometimes a day later he would respond. Sometimes his answers were a paragraph or two long. Sometimes they were four pages such as, 'what are the most important moments of your life?'

And it was a true gift to read his replies, but it wasn't always an easy thing for me to do, because it changed the way I experienced our relationship.

Because I met my dad as an adult.

I was no longer the child seeing him through that fearful Australian little girl who was afraid that everything was going to kill her. I met him as an adult and understood what was important to him and what he liked to do and how he wanted to live well.

And still that goes on to change the way that we communicate. We text all the time and he recently found the Emoji part of the phone... and never sends less than three emojis in a row!

And it was these series of conversations that made me think, 'I really not good at this. I don't know how to have that conversation. I don't know what I want'. But, this is the beginning of a journey for me. And I invite you to come along with me on it.

One of my life values is that everybody has a story, if you give them the time to tell it. This journey is a collection of stories of people's lived experience of thinking, or not thinking about it; feeling or sometimes not feeling about it; and when they start to talk about it, what do they say? And to who? And when? And if they don't talk about it, why not? And what does that mean for you later on and to your loved ones?

So each episode is a conversation. It could be with one person, or it could be with a group of people. And we're talking with a really broad range of people. The first few we're speaking with include a young Dad who is changing the way that he thinks about death and dying - and what does that mean for his sons?

[From Amir’s interview]: "If you can actually turn your death into your last active giving, then I think that's a really good thing to do. And by that I mean look at the people around you and just think, 'what do they need to thrive when I'm not here? And do they have those things - am I giving them those things in the way that I'm living? And, if not, then make some changes so that you are".

I'm also speaking with a wonderful woman who was a clown in a children's hospital in Italy. She volunteered there for several years, bringing light and laughter to some of the most vulnerable, painful moments of people's lives. Why did she do that? And what has that made her think and feel about death?

[From Sara’s interview]: "With kids it's very easy. I mean, at least for me, it's very easy. Because kids want only one thing: they want to play. And when they play, if they are sick or not, it doesn't matter. Because they only have the ability - that adults, unfortunately they don't have; because adults have the perception of time and all the baggage from one day to the next that gets bigger and bigger. But kids, they are the best for me because they are able to restart the day from scratch every day."

I was telling a friend about how excited I was to share these conversations and she said, "yeah, it's cool Sam. It really is. But what do you think will actually change?" It's a good question. There's part of me that says, 'I'm not quite sure. Let's see where it goes...' And there's another part of me that is quite clear about this.

If anything was possible, there are two changes I'd like to see in the world.

The first change is about how we have these conversations; and that we actually have them.

The change I'd like to see is fewer missed conversations, like the one I never had with Marla. And there's more conversations about what matters, like the conversation I started with my Dad. We started talking about dying and death early on before we needed to, before it was too late. These conversations aren't easy and they can be emotional at times, but we can say at least we tried.

Because I've sat with too many people who've shared their regrets that they wish they started sooner. Too many people who said they were afraid of saying the wrong thing, so it was just better not to say anything at all. And there's a heaviness there that I wouldn't wish upon anybody. That's the first thing.

The second change that I'd like to see in the world is about how we live.

So yes, this is a podcast about death, but what if it changed the way that we lived? Over the past three years the conversations that have really stayed with me are with people who have faced with their mortality. People who've overcome the odds with illness and are living with life altering or life limiting conditions. It is such a joy and a pleasure to spend time with them. They are extraordinarily calm. They are clear on their priorities. They don't sweat the small stuff. They focus on the little things that bring them and their loved ones joy. When I sit with them, they look me in the eyes and say, 'Sam, are you okay?' 'Yeah yeah, no, good, you know.' 'No, really Sam, how are you?'

They've made a choice to grapple with what's important to them and now they choose to live their lives in that way. And these choices, these decisions are available to us all.

What if we took the time and space to figure out what was important to us?

What if we thought about how we wanted to live well and die well?

And what if we share these preferences and wishes with our loved ones and listen to what they have to say as well?

Well, I reckon - that little Australian girl inside of me reckons - that if we did that, we'd have a pretty amazing world to live in.

So thank you for being here. Thank you for listening to my story. And I really hope you enjoy this series as much as I'm enjoying putting it together and sharing it with you. Thank you.