My name is Bella and I'm the assistant producer on The Imperfects.
I'm the descendant of Russian and English migrants who journeyed to Australia during the Second World War.
I grew up on the border of Watarung and Eastern Maar Country, inspired by their care for the natural world as I explored the land near my home.
Here at The Imperfects, we acknowledge the Wurundjeri people of the Kulin nation as the traditional owners of the land where our podcast is recorded.
We extend our respects to their elders past and present, and acknowledge that sovereignty was never ceded.
Always was, always will be Aboriginal land.
This evil disease of the brain that strips you of the things you hold so dear, which are your memories, people that you love, and the thought of me not recognising Thai or my kids or my grandkids like that, I just can't even think about that because that is all, that's everything, isn't it?
Really. Different sort of episode today.
We've already spoken to Jim Rogers and we wanted to just do a quick intro now, just to talk a little bit about what you're going to hear, and a little just to give you a little bit of context around this.
How long after we interviewed him did you stop thinking about him?
I just couldn't get it out of my mind.
I texted my wife straight away afterwards of things I want to do and change in my life.
I felt so inspired by this.
I wanted to live life a little bit differently.
I rang Jim immediately as I was walking away from the studio and I said, you are going to love this man because he is an inspiration.
Yeah, and so lovable.
So lovable. I'm feeling very bad.
I didn't call my wife after this episode.
No, I called her. I called her.
Thank you. I knew you'd forget.
So I just called her here.
This man has the most extraordinary aura about him.
He's just the most beautiful person.
And we should explain why we're talking to Jim, like why Jim is on the podcast.
Yeah, well, Jim has dementia, and we for a while have been wanting to chat about dementia.
It's something that affects so many people.
I'm about to try and make it look like I'm not reading, but I'm wearing glasses and I've got a laptop in front of me and I'm staring at the screen.
So it's going to be hard.
And you've just said you're reading.
Yeah. You could just read it.
Yeah, I should write it here.
Oh, okay. Thank you for the permission.
Thank you. So we just want to give people a bit of background on what dementia is before we jump into this episode, because we don't really do that throughout the episode.
It's more Jim's experience with dementia.
I mean, there are three acts to this episode, three very different stories.
The first two are still, I can't even believe they happened, but then the third one is about his struggles with dementia.
So dementia is a term used to describe the symptoms of a large group of illnesses which cause a progressive decline in a person's functioning.
It is a broad term used to describe a loss of memory, intellect, rationality, social skills and physical functioning.
So that's dementia in a nutshell.
So many of us will have known someone who's struggled with dementia or perhaps loved or cared for someone with dementia.
But then I think also a lot of us have this very, very deep fear of dementia ever happening to us or someone we're very, very close with.
Yeah, it is one of my biggest fears.
I mean, I've I know a few people a lot older than Jim because Jim's is early onset and I've always associated with like a thing that happens when you're old.
I mean, I when I was a kid, I used to think the word Alzheimer's was old timers.
I just always associated with it.
And that is often how we are introduced to it is with an older person.
A big part of my motivation for my well -being, honestly, is to try and reduce things like dementia.
Yeah. So here's some statistics that just really blew me away.
So dementia is actually the leading cause of death for Australian women.
It's the second leading cause of death for all Australians, and there's provisional data that suggests that dementia will soon be the leading cause of death.
In two thousand three four, it's estimated that more than four hundred and twenty one thousand Australians live with dementia without a medical breakthrough.
The number of people with dementia is expected to increase to more than eight hundred and twelve thousand five hundred by two thousand and fifty four.
So I mean, this is something that affects so many people.
And it's the kind of thing that there's the effect on the individual who has a condition.
But then something like dementia, the effect on the loved ones.
It's it's just so heartbreaking and brutal and it's just devastating.
So kind of that's kind of why we wanted to do an episode on this.
And we just happened to find thanks to Hamish McDonald, the most incredible person who is not famous with the most incredible story.
Well, I want to build it up too much.
But one of the most amazing stories I've ever heard someone say to me face to face.
And that's not building it up too much.
Like, like, you know, if I had of met Harry Potter and he told me his story, that would be better.
But I haven't met Harry.
And so this is the best.
OK, let's move away from Harry Potter and give Jim the introduction he absolutely deserves.
Yeah, well, we hope you enjoy this as much as we did.
It's it's heartbreaking and it's heartwarming in the same breath.
And it's it's an extraordinary story of love.
So we hope you enjoy this.
I reckon it'd be really nice to hear about how you met your first love.
OK, so I come from a small town in the U .K.
And I was living there at the time, as was my wife.
And as we got into our late teens, I think one of the main key factors was I had a VW Beetle and was a bit of a bug fanatic.
Punchback never turns.
And she was the same.
And so we were sort of in the process of meeting at these.
They were called bug meets, you know, everyone would go along.
Some people had the most beautiful VWs that you could eat your dinner off.
You know, in the engine, they were so superb.
And none of those would have literally the headlights taped on.
They were so bad. So your first love was the car.
Yeah, OK. And it just grew from there.
It got to a point where it just changed from being in, you know, in each other's company to suddenly we're a couple.
And, you know, I was crazy about her.
Lorna, her name. Lorna.
Beautiful human, very creative, arty, funny, superbly committed to everything.
Always wanted to give everything 100 percent.
You know, you had kids together.
Yeah, so we were quite young to start having kids.
But how old were you?
Twenty three. Right.
Which by today's standards is really young, you know.
And so we very quickly had a couple of kids and then a surprise one.
So then before we knew it, we had three under three.
Wow. And so that was huge.
It's a lot of strain on you, three under three.
And if you're familiar with the U .K.
whether the kids are always snotty or, you know, something, they've got a chest infection or something.
And Lorna and I were addicted to travel, addicted to holidays.
So we always had a couple of holidays banked up.
Yeah. And eventually we watched some program and it inspired us to think about emigrating to Australia.
And the more we mentioned it, the more crazy everybody thought we were.
You know, you can't do it.
You've got all these little kids.
You don't know anybody.
You're going to do it.
How old were the kids at this point?
They were, I think, two, three, four, something like that, maybe a little younger.
And the first thing I'm thinking about is the is the flight over.
That is terrific. When I look back to do that with three kids, I don't even know we did.
But I think when you're when you're that young, you just, you sort of just roll your sleeves up and get on with 25.
Yes. Wow. Anyway, we moved to Western Australia and absolutely loved Australia.
She loved Australia.
We made some some great friends.
Yeah. And then later, a few years later, unfortunately, my wife had a mole that she noticed and she kept saying, oh, this mold is mine.
It's annoying me. So she she went and had that looked at and they said, we'll take that straight off.
Yeah. And then it came back with a diagnosis that it was melanoma.
And so what they do is they literally after the first removal, they find out how far it's sort of gone.
And they do a more in -depth removal.
So to be sure, you know, but they can't actually be sure.
And they sort of were in the mindset of enjoy life, go away, you know, be positive.
And we think we've got sort of we think we've got it.
We think it's a 100 percent.
Yeah. Yeah. And so, of course, so young, you know, we were very nothing can nothing's going to stop us.
We were having such a fantastic time.
We were living the dream.
Still in the 20s. So that's when is and living the dream for us like we were by the beach and the kids were swimming in the ocean.
You know, it was sending these things back to the UK was just wild.
It was wild. And we fell in love with Australia.
It just was an amazing time.
And this shook it all up.
It knocked us for six and it knocked Lorna for six in the fact that she felt what about if something ever happened to one of us?
It really made the focus made us think, you know, what about you?
Haven't got your network support crew, the grandparents, everything.
So we decided to return back to the UK.
Is that also, I imagine when you if you get a shock like that, I would have a desire to be around family, not just for the support, but for the love as well.
Hundred percent. And when I look back now, I think it's quite a crazy roller coaster that I think we're so when you're young, I don't think you take into account what big actions you're taking, you know, to to actually make that move.
So you're dead, right?
Though it was so great to go back and be embraced by all the family.
And we're very, very close, you know, extremely close.
So anyway, we got back and.
Only probably six months later that unfortunately, we're walking down the street one one day and she put a hand in a pocket.
Well, she's got a job, a hand in a job and she was walking down the street and she just stopped and said, Oh, shit.
And I was like, what?
You know, I thought she'd lost her house keys or something.
And she said, I've got a lump.
I could feel a lump.
And so, yeah, it was quite rapid from there on.
And and sorry to stop you at that moment.
Did you at that moment, you guys knew what that was?
Yeah. And also, once you've had something like that, you start looking into it and researching a little bit so you know sort of what things you know you've got to be looking out for.
So a melanoma is pretty serious.
So it's it's like you've got to be refocused.
And so when you do find something like that, you've got to let them know straight away.
So she was literally fast tracked and they had to do all of the removal.
Yeah, they do. They put drains on and take away your lymph nodes in that area and that sort of thing.
And so it was pretty tough because she she'd felt that she was being very positive, getting on with life.
However, this was something she was worried about in the background.
You know, they're saying I'm fine, but what if there was something wrong?
You know, it plays with your mind, plays with them.
Scary. Very scary. And how are you at this point when you're I was quite I was quite OK, really, because I tried I tried to be super positive.
Yeah. And we were so young.
Never in a million years think this is going to go any more than that.
You know, literally so they did all this big operation.
And a couple of weeks later, we went down to a specialist, a specialist appointment at the hospital.
And they literally said, she's OK, you know, we think it's OK and we keep an eye.
But for me, I just felt as though, you know, in your gut, something's really not right.
And she was so weak walking out of the hospital.
I just thought this isn't this isn't right at all.
She got into a wheelchair.
She was so tired, you know.
So I got in a wheelchair and I literally turn around, march back into the casualty.
I'd got one right on me and said to them, I don't care what you're saying.
She doesn't look well at all.
I think she needs to be scanned.
You need to check it.
And they literally were going, OK, OK, you know, calm down, calm down.
And so they did. And this is back then.
So it wasn't quite as in everything so available now, super scans, all the time, ultrasound.
It was this is 25 years ago.
And immediately from that scan, you could see that it had traveled, it had gone to various places and she was admitted immediately then.
And it was just awful to be truthful because I'd done so much investigation with.
There is it's called McMillan Helpline in the UK and there are McMillan nurses, you know, people that do this for a living and they're like angels from God that look after these people in their last months.
Yeah. Yeah. Those people run a helpline service.
And I think Lorna and I had both been doing this call, you know, when she wasn't listening.
Yeah, and I think we were both protecting each other, you know, that we needed one to the other to think there was anything really bad happening.
Yeah. And so I knew that worst case scenario, worst case scenario was six months.
And a good scenario would be two years if it was really bad.
You know, I knew that.
So I had a lot of anxiety at the time from worrying and after she was admitted and then I saw the specialist and the specialist said to me, it's not good.
And then I can remember thinking.
What's he going to say?
Is he going to say two years?
Yeah, he's going to say two years, you know, he's not going to say six months.
I can really remember it.
It's like a pin drop, you know, in that room.
And he was a young guy.
And he said, we're looking at around 48 hours, 48 hours.
Hang on, what? I was like, what?
What? You know, I just I just couldn't even believe the situation.
And so I. 40 or two days.
48 hours and the kids were at home with my mom and dad.
And so I'm then saying, I want a second opinion.
This guy doesn't know what he's talking about.
I've been on the helpline.
I know everything, you know.
So this guy was very good at what he was doing.
And they brought somebody else.
And that opinion was backed as well.
And it was just unbelievable.
Unbelievable. I can't even express to you how hard that is.
If I could have swapped places with her on my children's life, I would have swapped with a within a heartbeat.
Honestly, it was just horrific.
Now, the worst part of it, there's too many balls to juggle in all of this.
The worst part of it is she didn't know.
So then I had to then not let on to her because if I was to let her know.
I mean, how'd you how'd you even say that to somebody?
So she wasn't she wasn't in the room when he said no, no, no, she was in in the hospital bed.
So I was in the private room.
So what do you know?
So then I had to go, you know, you're fine.
We're going to get your pain relief sorted out and we'll hopefully go home, you know, and be all this.
And she was like, good luck.
It's killing various pain.
You know, I'm over it.
I just want to get out of here.
As you would, you know, you're not imagine now your partner, you know.
And so and so I said, OK, well, I think the best thing to do is I go home, get change and everything.
It'd been like long night and stuff.
I get changed. And then I bring the kids down to come and say, Hi.
They're wondering, you know, sorry, sorry to this, just the kids at this stage.
How old are the kids?
Five, six, seven, I think so.
And that was my parents at home, you know?
And she was saying, absolutely not.
I don't want them coming down and seeing this.
I want them being worried or anything.
So this whole situation was so difficult because I'm thinking, oh, my God, like, you know, I've got that to consider.
But you're my primary thing to consider your feelings and your what you're thinking.
It was just it was just awful.
Do you mind if I if I ask?
And because because did you know immediately when the doctor said 48 hours and amidst all that that the shock I can only imagine.
Did you know immediately that you wouldn't tell her that it was 48 hours 100 %?
Yeah. Yeah. There was no way that I would I just couldn't do that.
Yeah, I couldn't come and tell you that.
Yeah. How do you tell somebody that I don't know?
I don't I couldn't I just feel like it would it.
I just didn't even know.
Like, how the hell am I going to get through this?
Yeah. How am I going to do this?
It's like it was in your face.
It's just it feels like the sort of thing that no, no person.
It seems completely unfair at the least that any person should be put in that position to have to and and she was.
You know, so nice to care and so guys.
Fantastic, mom. Like, so lovely.
It's like, what the fuck?
Why me? It made me so bitter and angry for so long.
I'd look at people and think this sounds awful now.
But I'd look at people and think, why aren't you?
Why aren't you dead?
Why wasn't your family ruined?
You know, I used to be like that later when I used to be taking the kids to school.
It was so awful. So did you see, you didn't bring the kids in.
You had 48 hours in the hospital.
You stayed in the hospital for the 40 hours.
Yeah, the whole time.
She, I'm guessing she's deteriorating quickly.
Yeah. And it was more at that stage then about comfort and pain relief and morphine and everything.
And it was really getting heavy fast.
You know, I couldn't even believe it myself.
And then all I could think about was she was in a lot of pain and all I could be insistent about was that I don't have any pain at all.
Like, you know, if this is the result that's going to we're going to end up with.
You know, make sure I don't care what you do.
I don't have to be in any pain at all.
The your suggestion to go home and bring the kids in to say hi.
Was that you trying to facilitate a goodbye?
Yeah, because I was thinking suddenly.
Are you joking? Are you joking?
This is like we've got a whole life ahead of us.
Yeah, it's like we've got a whole family here.
And these kids, this is such a thing on your shoulders.
How do you plan it?
What do you do? I mean, at that age, it's not that they're going to come in and sit very quiet.
You know, they're full of it.
They'd be jumping on it and, you know, mom.
Yeah, and I'm kind of like, I only know you as you are now at this age, but I have to keep reminding myself that you were 31.
31. God, it was just so awful.
And I just pulled everything together.
The hospital was amazing.
They let me get into bed with her and, you know, put her favorite music on and, you know, all sorts of things.
Friends were amazing.
I mean, all her family, like her brothers and sister were like they all everyone was at the hospital.
It was just awful, awful period.
And I remember after it all happened and she passed away.
I remember walking outside the hospital was about five, five or six in the morning.
It's so surreal. And I walked outside the hospital and it was the most beautiful morning.
Like the sun was coming up and I remember standing there and looking and thinking.
Thank God, like that bits over, like that was so horrific, you know, to see her struggling and unwell and so awful.
And I just thought, I mean, I don't even know I got through that.
And then. Penny just dropping in my head.
My God, now I've got to go back.
And I've got to just ruin my kids lives, you know, because you can have anyone in the world, but everyone wants their mom, you know, it was just so awful.
I can't even begin to explain.
And they were, you know, did you go straight home?
No, I went to my brother in law as a super close to my Lorna's brother and stayed there and I went and slept.
I hadn't slept. I slept on his bed and he was sort of screening everyone and everything.
And him and his wife, they were amazing.
And my parents were waiting for me to come back.
You knew. And it was horrific.
I can't even explain this.
It's so horrific. And you're doing an incredible job.
And the the time was set for me to go home.
I don't know what it was two o 'clock or something like this.
My mum and dad were taking them to the park and doing all these things.
And I was like just watching the clock with me thinking you literally wanted to stop the clock from going around because you just knew that it was getting closer to me wrecking everything.
Because it's so life changing.
It's so life changing for it's awful for me, but for them.
And I kept ringing my parents and saying or saying to my brother no, can we make it another hour?
Can we leave it a bit longer?
Can we go another hour?
And it was to the point where he was saying, you can't you can't push it any further.
You're going to have to do it.
And anyway, I went and I did.
I went and spoke to them with my mom.
It was just awful. I can't even.
Sorry, I can't even really explain.
This was just so bad.
And jumping passed a little bit because it's just so sad.
And I then had to jump into being super dad really.
And I wanted to just do everything for them to be mom and dad all the time.
So they were the best dressed kids going to school.
You know, their hair was perfect.
They were just the lunch everything I was on.
You know, supernova.
I was just I'd literally get to the school, take them to school, you know, wave them in and walk back and draw the curtains, lie on the bed, cry, be depressed, hate everybody and everything.
Drink, do everything.
And then I would open the curtains and go back to the school.
Hi, you know, and get them, bring them home.
And wow. So you're almost like living two lives.
It was awful. It was awful.
And I had so much fantastic support from my sisters and, you know, my parents and my wife's family, everybody.
My friends. Fantastic.
But nothing, nothing can give you that back.
I couldn't even have her picture.
I had this amazing picture for the funeral of her riding.
She used to ride the horses in the ocean and because it's great for their training and it's just one of her favorite things to do.
And she'd go with her best friends in Australia.
You wouldn't want to do it in the UK.
You'd freeze to death.
And she'd go and swim in the Indian Ocean with them.
And I've got some amazing photographs of her.
And I actually had it from her funeral with, you know, Daisy's around because my youngest daughter's name's Daisy.
And. And that was on my wall in this cottage that we'd renovated, and I couldn't even have I couldn't even have that on the wall.
I couldn't even look.
I couldn't even I just couldn't even look at it.
I couldn't even walk past it.
It was so raw. So, yeah, anyway, I went on to be super dad.
I joined the president of the Catholic school.
I was on the committee.
I was doing everything.
How are the kids at this point, if you don't mind me asking?
Just heart, totally heartbroken, very clingy to me.
They would rotate. Who would sleep in the bed with me?
They'd want to be with me.
They wouldn't let me out my sight.
My youngest daughter would be extremely worried if I was going anywhere at what time, how long, you know, so I think it really affected them in, you know, in various ways, because it's such a trauma.
Do you want to ask a question about.
I don't really know the best way to ask, but do you?
And maybe it's impossible to know, but do you think in that time when you're so you're so heartbroken, like you've lost your wife.
Do you think that even though the, you know, you then had to become a single parent, do you think having kids with you gave you any strength or changed the way that you had to then deal with losing someone, do you think?
Without a doubt, I think because the kids were there, I mean, I think if they weren't there, I would have really gone downhill, I think, because I could have allowed myself to.
I wouldn't have given a shit about anything or anybody.
But for them, you have you've got to be present focus.
There's homework to do.
There's things, you know, that they all had ponies and I'd got to mock them out.
And there was stuff to do.
So I couldn't allow myself to crumble into a heap.
And then to the point where I was so being so super dad that my parents were, you know, concerned, saying, you're not sleeping properly, you're, you know, you're not having any downtime.
You need to have a break, you need to have a break.
And the super dad thinks a lot of pressure.
Understandable, I can.
I understand how you would go into that.
Yeah. Well, you want you want the best for your children.
So you want to do the best for them and nothing you can do.
I mean, I had a couple of girlfriends much later on, but it also made me a little bit irritable about the fact that I felt as though it was not a replacement, but it just felt very strange, you know, when and these these people would be so nice to them.
It would almost just I can't even explain it.
Your friends in romantic.
Yeah. Right. Okay. You know, after the event and people are so keen to see me happy, you know, on poor Jim, like he's got these three kids on his own.
You know, so lovely.
You could meet somebody and, you know, they could they could help and and how lovely, you know.
And I know a lot of people sort of tried to fix me up, so to speak.
And there were some really, really lovely girls, you know, that were.
They were great, but I just I couldn't.
You know, did you I know you had you obviously had lucky to have friends and parents and did you look into doing any therapy or any anything like that to deal with the trauma and grief or fantastic opportunity happened for me because I was quite good friends with my GP.
He was a brilliant guy and he got the kids into the most fantastic counseling weekend, and it's very big in the UK and it's for bereaved children.
And you go to a camp for the weekend and you get to do things like throw paintballs at things and get your out of smash plates and talk sadly and for your kids to be amongst other kids, it's so rare to go through and so traumatic and so huge.
It's so final. It's so final.
There is nothing quite like that.
You know, it's just it's just the everything changes.
Doesn't it? You know, your parents, you're everything when you can't stun them, you know, which a lot of folks don't like the parents.
But at the end of the day, they're yours, warts and all.
And once they're gone, they're gone.
It's so awful. It must be so terrible for kids that lose, you know, parents.
It was incredible that this was put together.
And I'm trying to think what it was called now and it will come to me in a second.
It's dementia is a nightmare because everything is like under a filing cabinet up there with dust on.
Yeah. Yeah. But these stories are so vivid and my long term memory is so superb.
You know, it's just.
Anyway, I'll get on to that.
this place, it was superb because all the parents were in the camp too.
So I had some counseling through that.
And that was brilliant, absolutely brilliant for me.
Yeah. Yeah. I had a question that I've thought about and I've wanted to ask someone like yourself, but I've never had the chance, so I hope you don't mind me asking it.
just thought occurred to me and I expressed this to my wife.
We've got two kids, two and four.
Nice. Beautiful little boys.
And I said to her, I have a feeling that if you were not around for whatever reason, the hardest thing because the parenting is so hard, like it's challenging.
So hard. But for me, I feel like the toughest thing would be when you'd had a good day that you wouldn't like, there'd be no one in the world that understood what that one that connection you have with the child, like you couldn't enjoy the good moments.
You know, your kids could fart and you think it's great, you know.
And your partner, their parent, that love is impossible to replicate, isn't it, from anywhere?
Yeah. And so that was one of the biggest bereavements to me, was this journey we were on and what we'd planned and they were our work, like our big focus in our world.
And we, you know, we just loved our whole unit.
We thought we were amazing, you know, we do all these things together and we just thought it was great.
And it was like somebody just came along and smashed it.
And so I knew nobody's going to have those feelings for my kids, you know, like I feel.
So you're so right.
Humans are incredible, that we have this invisible ability to adore and love things that are so important to us, like our family.
And it's not till you get older that you really realize how incredible those things are.
Yeah. And they just can't be replicated.
No. You know. And suddenly I can't share.
There's no one in the world that I can share the feeling I have about my daughter doing that funny thing on a bike or something.
Yeah. Yeah. Sure. Because you know, it's undying love from your your partner, is it, your wife?
Yeah, wife. Your wife.
You know, you know, she'd do anything.
Yeah. And yeah. And it's just you can't get that from anybody else.
No. Yeah. So you have to live with that forever.
That's gone. And it's all on you.
It's all on your bloody shoulders, like everything right now, like up to this age when they're grown up, you know, not that of course they don't need you like that, but everything still is only you feel as though you.
It's very difficult to put into words.
Yeah. You're the sole, sole carrier of that love now.
Yeah. Because you just love them so much.
OK, so this is the story is only like a third of the way through.
I feel like I regret having me here.
This is probably not a movie.
It's like Lord of the Rings.
This is probably a one up Lord of the Rings.
So if we move now to, I guess if you're OK with that move to sort of where the second part of the story really begins, which is a brick.
Well, that's the name of the second movie.
Should have been. So so your parents, they're obviously worried about you.
This is where the second chapter really starts.
I feel like your parents are worried about you.
And I say you need to you need to get out of here for a bit.
You need to go and have a holiday.
Yeah. And they were quite strong.
My parents in their view and amazing support.
But they're like enough.
Like you need to go away.
I don't want to go away.
You need to go away and have a break.
No, we've booked you a trip.
So who would you like to go with you?
We're going to have the kids.
You know, it's like that from the heart.
Very kind. I was dreading it because the kids, you know, didn't want me to be out of their sight.
How many years late is this?
About a year and a half.
You something like that.
And my sister was going to come holiday and my best friends would go.
I had friends from Australia go, I can meet you.
So I had amazing options.
And I was, I think, in a bad place, really, genuinely, mentally.
I think my mental health was struggling.
I hate the world type of thing.
But I was putting his face on for the kids.
Yeah. And so I was being all happy, happy.
But internally, I was like, I'm done.
Like, how long can I do this for?
So I said, no, I got my own.
I got my own them. So I remember getting there actually and sitting on the balcony with a bottle of wine or whatever and thinking, what the hell am I doing here?
It was beautiful. All these people hand in hand, walking around.
And I was thinking, you know, why have I come?
And anyway, I was like, OK, it's only a week, 10 days, whatever it was.
And so I went down by the pool, as you do.
There's always people often drinking.
I was quite miserable.
And this group of people kept saying, you're on your own, you know, you're on your own.
Come over, you know, have a drink.
Lovely people. And then I'm fine.
I read my book, you know, second day, third day.
And I was feeling quite antisocial, really.
These people are being really lovely, trying to make a conversation.
Eventually, I said, OK, you know, I can have a drink with you and I feel pretty sorry for myself anyway.
So it's a fantastic group of people chatting to them all.
Lovely, you know, guys, girls.
And and then. I sat next to this guy and he was so interesting, so funny.
I was chatting and great energy.
And that was Thai. So Thai lived 100 miles away from me in the UK and he was there on holiday with his friends.
I was there myself.
And from the minute I met him, I just I just really loved his company, made me laugh and I was chatting with him at a great time.
And so this was great.
I could start to enjoy this.
And then a little bit later, a couple of days later, whatever.
He happened to say he was gay, right?
And from where I was from, you know, you didn't know there was nobody it was a little bit like little Britain.
You know, there was no day in the village.
Literally, yes, you didn't even know such a thing, really.
Yeah, I think I lived as such a sheltered life in that regard.
But I didn't even know I'd never even really ever met anybody.
And OK, I think I asked him, you've got kids, you know, or you married or something like that, it's like, oh, no, no, no, OK.
Anyway, it just grew.
I can't even explain what happened really there.
And I don't even really have a recollection of feeling anything prior to this, thinking, you know, I never really have a recollection of thinking I like guys or anything like that.
I really it's just was something about him that I connected with like there's something in those eyes, got great eyes that looked into my soul and something that just happened.
It's beautiful. So we pursued this friendship which started to grow.
I was becoming more and more involved with him.
So when you say involved, you mean like it started to become a bit romantic towards the end of this trip, you know, and then I was thinking, how did you feel about that?
What the hell are you doing?
You know, there's there's so many different variations of people which I've I've learned in the years to follow from chatting to people that were gay and talking to title by or whatever, and somebody said to me once, there's a spectrum not to 100.
And very few people sit in the same place on the spectrum.
There are people there are on 100.
So totally heterosexual.
There's people totally this end who are totally gay.
Then you've got everything in between, you know, and there's very different areas.
Some people may think, you know, that guy's so attractive, he's so handsome, you know, but never more would you think of anything more than that.
But there is a big spectrum.
And so for me, I just connected so deeply with him and it got to the point where when I went back to the UK.
We'd start on the phone, you know, because we lived 100 miles away and it was becoming hours on a night, you know, that sort of thing.
You hear about hours on the you put the phone.
And so is it still confusing at this point or are you just in love and I can't even explain how it developed from there because there was no way this was going to happen.
Like I was on the PFA, like, I've got three kids, I've got responsibilities.
That's a Catholic school.
Yeah, I'm a normal guy.
Like I got the pub, like all my friends, like my whole life, see, my mom and dad.
What the f you know, it's not going to happen.
So at this point, this was this desire I'd got this connection with him that I love to make me feel so good, but I knew it wasn't going to happen.
And anyway, we saw each other, a few different weekends and stuff like this, and he moved having an earth to come up and it just made me feel amazing, you know, and was amazing to the kids.
This was just dad's friend coming.
Amazing to the kids, just lovely.
And they loved him when Ty coming, you know, it was like this.
I was loving it, but it was I think there was an element of control in there as well, because it wasn't like having a girlfriend that was going to be seen as that.
It was like this was just my friend.
You know, yeah, nobody knew, nobody knew anything.
I was having control of it all.
Even now, do you think that no one knew?
Nobody knew. Wow. Ty's people knew because he said he got home, he went, I've met this guy.
I'm going to marry him.
Right. Wow. And his mom told me that.
Wow. And he was like, OK, Tyler, calm down.
You know, you're only you're only 23.
Calm down. Oh, Ty was 23.
So there was an age gap between us.
So let's just throw a bit more into the mix.
Wow. This is already the best movie I've ever seen.
This is what my oldest daughter says.
She's like, I'm writing you book.
With the I hope I'm trying to think of a better word to use.
You always ask the best question.
I hope this word isn't too clunky, but was there a part of it as well?
I think you sort of hinted it.
But like I imagine every girlfriend that comes along, there's the word here's a replacement for.
Exactly. That's exactly how it was.
And so I imagine with Ty though, it's no one's thinking that the kids aren't thinking that no one in your circle is so there's so much less pressure on the situation.
And I was definitely not thinking that.
So it was actually it felt really good.
I felt very free about the situation.
It's like this is not gonna happen.
This is like, you know, I'm feeling suddenly I was getting up and feeling.
You know, this is great.
I couldn't wait to speak to him.
Couldn't wait. The kids would go to bed.
I'd be on the phone to him for hours.
There was no FaceTime or anything like that then.
Yeah. But he made me feel.
As though it was all OK and that I was all right and I was going to be fine.
You know? And and it's I can only imagine.
I mean, I've been in a I was in a long term relationship in my 20s and then we broke up.
And I genuinely felt after that feat for a couple of years, I will never meet anyone as great as her.
And I truly believe that.
And I had come to the conclusion to my mind.
It's like, OK, I'll just be single forever.
Like that's that I can I can deal with that.
That's OK. And it's probably just self preservation and protecting myself.
But that was a genuine feeling I had.
And I can only imagine in your situation.
Maybe that was a similar feeling.
I think you're spot on.
You know, sometimes those wounds are so deep that you you know, you have this protection mechanism where you you just sort of go on autopilot.
Really. Anyway, it was moving along and moving along.
And I was saying to him, this has got to it has got to come to an end, you know, this just can't progress because I was falling more and more deeply for him and I was getting more involved and wanting to be with him, wanting to see him.
And I knew I'd got to stop this and nip it in the bush.
Can't do this. Was it getting to a point where you were like, well, I either have to break up or tell everyone that there was no way I'm not telling anyone, you know, there was no way or no chance it was just too it's too far removed from my life.
It's too crazy. Anyway, I broke it off with him.
He came up. He went out for some lunch with the kids and everything like that.
And then I think my parents had the kids for a bit and we went for a walk and I said, look.
I think you're incredible.
You've made me feel so happy to thank you.
And it's done. We're done.
And he was like, you know, went home.
There was a very quick impersonation to someone crying as well.
He went back to the house and got his bits and just such a great person.
Something like left me a note saying is a key and just really respectful, very respectful.
And he drove back down to London, which is about hour and a half's drive.
And he got back to London.
And I was sort of sat there on the evening thinking, well, that's done.
I felt like shit as though this is just so.
So not fair like this life.
I'm so over it. And then he got back to London and he was like, no.
I'm not having it. I'm going back up to the car around.
Drove the hour and a half back.
And walked in the door and I was like, oh, my God.
And we spent the whole night really with me saying to him, you need to travel the world, you know, you're so young, you need to go and do all this stuff and you don't want to settle yourself up with this life.
And there's me and the kids like, no, no, no.
They say you're mad.
You've got so much ahead of you.
It kept happening and kept going on.
And the one day I said, this is this is so ridiculous.
Sounds far fetched and untrue.
This is the gospel truth.
I said to him, the only way this could work really is if the house next door came up for sale, right?
So we drove back in.
And just as though something from above.
The little man was putting up the for sale sign and we were like, oh, my God.
Wow. And we sat on the drive and we were like, we looked at each other and went just ridiculous, you know.
And he said, I think I'm going to define a mortgage broker.
He never said a word because he's a mortgage broker.
Oh, that's great, by the way.
The next day literally.
He rang me when deals done.
I bought it without consulting.
Yeah. And I was like, what?
Like, yeah, I've accepted the offer meant to be.
I'm buying it, you know, I don't care.
I'm moving up. Good came to wow.
And I was like, oh, my God, this was a big deal.
Like, you know, there's all there's so much pressure like my friends and family and everything like this.
And then I've got this lunatic from London next door.
And so it started. That's how we started out, you know, and the weirdest thing in the garden was all these fence panels, you got a big fixed fence panel.
Yeah. Weirdly, in the middle of the garden, the panel was a smaller panel and Ty's dad came up and ties.
Ty's dad knew, you know, knew everything.
He's amazing guy. And he said, that looks like it'll pop out and it just popped out.
So this is what happened.
Oh, my. There's a little gateway.
So we were literally living for quite a while round the back, but going out the front, you know, and this is how I lived in Ty, lived in his house.
I lived in my house.
The commitment that he made to the situation is just obscene.
He would come around and sleep with me and set an alarm to get up at, you know, 430 to go round to his own house before the kids would wake.
You know, it's just when I look back, I don't even know how we did it.
Anyway, that went on for a long time.
And cut a long story short, we'll be here till next week, I reckon.
That's totally fine.
We bought a house. We decide to buy a house together in the countryside on acreage with a tennis court and lots of room, stables for the kids and everything.
And that's the only way we could handle making this life together, which was slightly away from the town and to try and sort of slide into obscurity a little bit was so difficult.
Oh, really? So you thought the only way that we can live together with the kids is if we're remote, yeah, away from everyone and hide it.
And this is a big deal back then.
It's like this is over 20 years ago.
And and it's small town people, you know, so you just couldn't go and go, this is the way it is.
So we were very, very mindful of how the kids felt.
We didn't ever want them to be picked on or, you know, feel different.
And they'd been through so much.
Honest to God, when I look back, I think, you know, you couldn't make it more difficult.
So when did the kids do the kids work it out?
Did you tell them? We always said, if ever the kids clock on and realize there's something more that would never would never lie.
And we'd sit down and have the conversation.
And I think my oldest daughter, she said to me, oh, there's some friends at school and they've got two mums, you know.
And she said, it would be a bit like you and Ty, wouldn't it, you know, being two dads?
And, you know, when you just got this feeling.
So I was literally pulled over.
And then we had this whole conversation.
And so, you know, there was definitely an element of shock that followed.
But fortunately for me, they loved him.
And it was an organic situation that grew.
It's so kind and so compassionate.
And so caring of the kids, you know, and all he wanted truly was me.
That's all he wanted.
You know, and I felt so important that that's all that he was bothered about.
And now, of course, we're grandparents to four kids and they adore him.
And to them, it's funny, because if he'd been a girl, his mom was going to call him Tyler for a boy and Poppy for a girl.
And it's funny because the grandkids now call him Poppy, me grandma, and him Poppy.
And now he's like, I ended up Poppy anyway.
But they adore him.
And he's just so kind, truly amazing human.
So episode one is Heartbreak, episode two is Shit a Brick.
We're about to reach episode three.
What would you call episode three?
I mean, this is shite because we've got this great English life, great house, poneres, everything.
Friends from Australia came over and I'd finished with Australia done, dusted, slam the bookshelf.
I don't want to ever go back because it was so wonderful for me at the time.
Those memories, I wanted to really just leave alone.
I never, never even wanted to come back too painful.
And we had a bunch of friends come over who were Lorna and my friends.
And this is how much of a wimp I am.
You know, I picked them up from the airport and had to take them to the pub to go, I left it to the last minute to tell you something.
They were like, what, you know, like my partner.
And they were like, what?
So I literally left it to that last minute and drove into this place where we lived and they met.
I loved him. You know, no judgment.
They could see that the kids loved him.
He was great. Anyway, the point of this is that they spent all this time telling the kids how wonderful Australia had been for their mom.
You know, and you know, if you've lost somebody that you love dearly to hear those stories, so wonderful.
You know, it's like I've lost my dad and anybody tells me anything lovely about him now.
It's like it just means so much.
And I knew it meant so much to the kids.
After these friends left, the kids were then adamant.
Wow, it's crap here.
Why don't we go there?
You know, I mean, we've got a beautiful home and got everything.
He's like, Jesus Christ, what more do you want?
England's crap, rain, hate this.
We should go back. Like having a tennis court.
Yeah. Yeah. So boring on that tennis court, sunshine.
And unfortunately for me, Ty joined the club.
So it was like four against one.
And he was saying, well, you know, I love adventure.
I've never been, I'd love to go.
What I've got to lose, you know, and so that is, again, a snowball that just kept gathering pace.
So yeah, blink of an eye.
Back we went. So great time with the kids.
They all grew up there.
Each one with their career moved to Sydney.
And then they kept saying, just to let you know, never come back to Perth.
Like Sydney is so going on.
So eventually when we went over to Sydney, one night we sat at Circular Quay having some champagne, you know, and looking out and you know, glitzy and beautiful ears.
And we just were. Yeah.
OK, then let's just make this move.
So we did 10 years in Sydney and had the most amazing time.
And then I was working for a company, quite a lot of responsibility, and a couple of colleagues were saying to me.
We're having conversations and I would say, now I've never met them and they'd say, you did, you did, you were actually in the meeting with them and I was.
OK, you know, and you start to have a few of these things going on.
And then lots of things were happening.
I was getting very foggy.
I was very busy in my work juggling a lot of things and making quite big decisions.
And if you get these decisions wrong, it can have quite a knock on effect.
So I was quite stressed.
And so I just felt as though things weren't quite as clear as they should be.
Is this all the time constantly?
Yeah. And it was strange because I'd be thinking, you know, I don't know, I don't know where I've put that or I couldn't file this properly, you know, I'm quite an organized person.
And so I'd say to Tark, I can't find these files or whatever I'm going to do.
And he'd say, do you want me to have a look for you?
And he'd have a look on my computer and go, what the hell are you drunk?
What's going on? Like there'd be everything all over the home page.
Just crazy. Compared to where you were.
Normally I would do that.
Everything's here and you know, you reach for that.
So he'd sort it all out and ties very, you know, cross the T's, dot the I's, very, very meticulous.
Sort it all out and go, yeah, I can't believe you've done all this, but sort it all out.
And then weeks later I'd be lost again and say, I can't find this and I need it, I've got a meeting everything.
He'd go back on and go, what is going on?
I've sorted this out for you and we're back to square one.
What is wrong with you?
And then I have no recollection of the conversation.
This is a problem now, you know, because these things, the continuity is so important.
It's affecting work and other people.
Affecting everything.
A few people were noticing and few people calling it out.
And it got to the point where I would be raising it with my GP and saying, something's not right with me.
I'm definitely, I'm weird like I'm forgetting stuff.
It's all confusing.
How old were you at this point?
Well, I'm 21 now. So let's go right.
21 forever. I was say 55 at this time.
I'm 58 now, just turned 58.
Good God. You look 21.
Thanks. Yeah. Yeah.
So eventually my GP was running general questions and things and I literally got them all right.
So he'd go, you're over worrying.
Stop thinking about it.
So he'd leave the GP and go, OK, and these are on my notes for a couple of years, like concern, concern.
But he'd reassure me and go, look, Jim, think you're fine.
You know, you've been dramatic, whatever.
So it's fine. Then one day I went to my cardiologist and had an appointment, my phone kept ringing.
And the cardiologist said.
Can you turn your phone off?
You know, it was like pissing her off, really.
And I was I was trying to do it.
I couldn't do it. And I was getting all flummoxed and she she was watching me.
And in the end, I said.
Can you sorry, can you just and she was like, no, take your time.
Just do it in your own times.
No stress. She was like sitting back and the more you can't do it, the more stupid you feel.
You know, more. I was like, oh, my God, like just turn your phone on.
So I was going crackers.
Anyway, she she eventually said, are you having things like this happening?
And I yes, this is what's going on, like I'm forgetting stuff.
I'm making a mess of things.
I'm losing stuff. I'm getting confused.
And so if it wasn't for her, I would never have gone down that track.
I would have just carried on working, making mistakes for a while.
So she referred me to a memory clinic.
They did testing. They moved me on to extensive testing.
What's a memory clinic?
How does that work?
Memory Clinic will do a series of tests with things, shapes, numbers.
They'll ask you to remember certain things.
They'll also show you stuff and ask you to pick out certain things.
So it's like a whole analogy of how your brain is working and how you're receiving information.
So I didn't do well in that.
And then they move me along to brain scan from the brain scan.
Then they move you on to things like pet scans with dyes and things like that that they send in to do more in -depth information.
Anyway, they contacted me and said, can we have an appointment and can Tai be with you?
You know, and that said to you, like, I'm like, I've been down this route.
Yeah. And as I was like, why does Tai need to, you know, we just like him to be there.
OK, so we went and.
Were you fearing anything specific?
No, I just thought now what, you know, I sort of wanted to know what is it and can have a pill, please.
Can I get out of here?
I'm so busy. I've got my whole life.
I'm so doing stuff, and this is really annoying and convenient.
At any point thus far, had you started to be taken back to that experience with Lorna?
When they said, could Tai be here?
Yeah. You know, it sort of just the penny drops a little bit and you think, yeah, when we went there and they said, you know, unfortunately, his scans clearly show that it's younger on Sal Simas.
And so. So what, you know, like, what?
In my head, Alzheimer's is an old person's disease that you get later in life.
and it was like a smack in the face really.
And then they carried on talking about stuff.
And I can remember.
It's just not going in anymore.
You know, I was just I think I went into a bit of a shock that this I didn't know anything about it, didn't really know what it meant.
But I did know. I knew it was serious.
So I knew I'd got to go away and do some stuff.
And Tai was like, you know, like, I just do it, you know, it's very emotional person.
So he's, you know, straight away knew it wasn't good.
So first thing you do is you start looking, life expectancy and all that, which is generally, you know, your life expectancy is five to ten years.
And from five years, it goes downhill.
And this is what you read a lot of.
I've since found loads of stuff.
I met many amazing people who have Alzheimer's or dementia who are incredible people, you know.
But for me, it was once I started to see this stuff, I was I was just like, shit, this is just not fair.
You know, we've got all these little grandkids.
Everything's going great.
Meanwhile, Daisy was in labor and due to have like a younger story.
I was due to have a grandson, you know, that that next day.
And so they had the Archie, our little grandson and Ty and I had to we were set and crying and worried and had all these fears and then we had to park it and then balloons and teddies and things and go down to hospital and see them.
And, you know, just really get lost into that moment and be really happy and enjoy that moment, because it's only a once in a lifetime moment, you know, in this new baby, new life.
That's just incredible.
So that was amazing.
We had to hold all that in to protect the kids at the time.
And we hadn't processed our self yet.
Seeing a baby be born must make your diagnosis so much more poignant.
Yeah, absolutely. Because you want to be around, you know, you want to be involved in these kids' lives, and particularly with the magnification of that lawn is not here.
Yeah. So it was like a double whammy.
On the life expectancy thing, was there also any part of you going well, last time I looked up life expectancies, they said six months, two years, and it was two days.
So this is this is sent me into overdrive then, because in my mind, I'd already seen this situation where, you know, I thought it was all going to be great for Lorna and then for myself.
So I started deep diving into the internet and looking at all people's stories and what happened watching films like Still Alice.
I don't know if you guys have ever seen that film.
I thoroughly recommend you watch that as an Oscar winning movie with Julianne Moore.
And she is an extremely clever person that gets Alzheimer's.
Younger onset and at 50, but rapidly declines.
And often the most intelligent people can have a rapid decline, you know.
So you've been through the other end where you hear this news about someone you love.
I'm interested to know what happens to you when it's you, when you're finding out the news about your what happens in the next couple of months to you and what kind of place do you go to?
I think for anybody getting this diagnosis, it is so startlingly dark if you start to explore what happens to somebody who's been diagnosed with Alzheimer's and you see and and, you know, absorb people's stories.
It's so awful, the things that can happen.
And so I literally went back to that place where I had previously been after Lorna, you know, I started to go very dark and and depressed and feel very sad and very sorry for myself and very anxious and monitoring myself all the time.
How do you mean monitoring yourself?
Before I started medication, I was starting to drop words and lose my track, what I was saying.
And so the more I did it, the more anxiety it sort of gave me.
And then I was feeling as though it was happening more and then the more it happened, I felt as though it was happening even more.
And then I was tricking myself into thinking, oh, my God, I'm going down so fast, like, oh, my God, I'm going to be sat rocking a chair before, you know, and not no tire anyone.
So I went into a spiral for quite a while and I hid it from the kids.
And I talked to them too much about it because it's very difficult because my kids, such wonderful friends, as well as my kids, but the certain things you don't want to talk to them about because you're adding to stress for them.
You don't want that.
So I then. I think Lent on Ty quite a bit and would wake him at three in the morning because I couldn't sleep.
And, you know, I'd say I'm so scared.
I'm so worried about what's going to happen.
What's going to happen is our life ruined.
And we were both grieving.
Ty summed this up one time and said, you grieve for the life you thought you were going to have.
It's quite a weird scenario because we all were going to die.
And you are going, that's for sure.
The four of us here, we're all going out the same door with zero.
So we all get worked up about how much we got or what we're doing.
But it really doesn't matter.
But I think when somebody says this is being brought forward and you need to do your will, you need to pick a home.
You need to decide who's control of.
When you go into a home, these are wicked things to have to consider in your sane mind and go through with your lawyer and and list everything you wish, isn't it?
It's just so hard to do.
So I spiraled then I went down and the one day he said to me.
This is Tyler. Yeah, yeah, he's a pretty positive person.
And he said enough with the whole what could could have would have should have, you know, he said, if you're not careful, this present that you've got right now where you are fine and we're having, you know, we've got everything to do.
We can travel all over the world.
This diagnosis is now giving you an amazing opportunity to get get our affairs in order.
Let's go spend some money.
Let's go and travel.
Let's do all these amazing things that we could do.
And my bucket list is like this.
I just got away tickets yesterday.
So I'm like, oh, that's a big ticket item.
Yeah, exactly. I'm so excited about that.
But so he said, if you don't draw a line in the sand and step over it, you're wasting all this time just dwelling and worrying and mithering.
So you need to pull your ass out and get on with it.
And let's just have some fun.
Let's enjoy life and make the most of it.
And I had a conversation with myself and said, OK, you've got to the end of the week.
You can wallow in this and then you need to change total outlook.
And it was from there that I started practicing yoga and meditating and, you know, being grateful for everything and taking a moment in the morning to really think about the things that make me feel so happy and the people that make me feel so happy, because the end of the day, we're all striving for happiness,
right? And there is a there is an element in things, disasters like this, awful things like this, you can turn it around and you can find something great about it.
And for me, it's an amazing opportunity to do all the things that I can do now.
I could have been lost in the process here and wasted a long time working away, doing stuff, thinking it was very important, which at the time you think it is so important, don't you?
But it wasn't it's not important.
And what is important is the people, your family, your health, you know, what health you have right now and laughing, doing good stuff, being kind people.
These are the things that really give you ultimate true happiness inside, you know?
Yeah. And no materialistic object can ever give you those feelings.
Are you are you three years into your diagnosis now?
Yeah, I just turned 58.
So, yeah, it's just just gone into three years now.
And how does everything feel right now for you?
I mean, what's what what are the challenges you face every day?
Once I was diagnosed, once you come to terms with it, you've you've also got to tell the kids, you go get deal with all all of that.
Then you feel very alone because you don't know anybody, you don't know anything.
And that's where my neurologist recommended Dementia Australia and said, reach out to them.
And so they have a helpline where you can get hold of somebody to start you off and give you information.
And they are just amazing.
And so eventually they put me on a program to bring me in and you do this program where you go through several weeks of learning all about what's going to happen, what you need to do, you need to get your fares in order, you need to get your wheels sorted out, your duty of care sorted out.
All of these things very, very confront him.
So they took me under their wing.
And I absolutely loved that, that I met other people and so put me in those similar shoes so I could understand and then moving along from there, they said, would you be interested in doing advocacy work for Dementia Australia as a volunteer?
You know, and I was so passionate about it, I was like, yes, you know, this needs to be everybody needs to know about this.
Everybody is so stigmatized that Dementia is just this awful thing and there's so many variations.
So I started doing some advocacy work for them.
And then that led to them creating this podcast called Hold the Moment.
And they said, would you be interested in co -hosting it?
And so then... I can see why, by the way.
Thank you. And then they said it's with Hamish McDonald's, oh my God, you know, he's amazing guy that is so talented and so great at interviewing people.
So for me personally, I I have done everything in my power to stay well.
And I'm so blessed to get a very early diagnosis.
So potentially there's no familiar line.
For me, some people have got familiar line where you have got it all in the family.
A friend of mine back in the UK, she had it very young and her sons have both got the gene, which is just a terrible, terrible thing.
But for me, they think it's a mutated gene or head injury.
I had a bad fall from renovating a property and I fell down a flight of stairs with no stairs and hit my head on the concrete.
So that could have been it.
But I have done everything in my power.
So I eat super well, like a Mediterranean diet.
I try and stick to everything.
I don't eat meat, I stick to fish, I exercise, I meditate, I practice gratitude.
I try to be calm, not to be stressed, do nice things around myself with nice people.
I'm doing everything possible for me to try and delay the progression.
And some people don't respond so well to medication.
The medication I'm on is the highest level that I can be on.
I've responded superbly to it and it's really been great for me.
I actually think that I feel as good as when I was diagnosed.
I don't feel as though I've gone down.
I do get confused and lost sometimes with directions and things like that.
If I go, say, to a shop or something, I can suddenly not realise where I am.
And it can be quite scary.
This question is coming from a place of complete ignorance about this.
I'm learning about dementia really for the first time.
If I'm talking to you and you are struggling to recall something, what is the best thing for me to do in that situation for you?
For me, personally, would be just to go over it again.
If I'm unsure of something, just go over it again.
And I think for a lot of people with dementia, when they're much further down the line, they become quite insistent about incorrect things or they get jumbled up and a lot of people can spend a lot of energy correcting them and making sure they realise they're wrong.
And this is actually right.
As the journey progresses, the better way really is to this is a quote of Hamish's, actually, when we were talking about on the podcast and it was detect and reflect something like that.
And what it means is rather than argue it out or be, you know, so adamant that that cup is white, if they're saying it's blue.
Move along and let's talk about the water over here, you know, and just just reflect, like, you know, deflect, that's the word.
Yeah, yeah. So that what's the point really?
The point of saying that that's yeah.
But I find I so people tell me I repeat myself a bit now and the stuff like that.
And I also have to make sure that my energy, your energy is so low to what was my normal self.
So I have to allow myself to rest and and like for this, for example, I made sure, you know, I was totally rested because I was going to be up here.
And after this, I'll be exhausted, but happy to just go and chill.
Yeah, but I have terrible sleep.
I used to sleep fantastic.
Now I have to rely on medication to get me through the night, which is rare.
I have terrible dreams in fast forward.
Things I see things so vividly.
I feel drained. I get anxious, overwhelmed.
So I'm fighting to to just stay who I am, you know, and just be me.
I'm just trying to stay me.
Yeah. You know, I don't want to see any of this and I don't want to go anywhere downhill.
I just want to be. I love everything that I do.
I love everything. I love everything about my life every day.
I always had the back of my mind for every birthday.
Lorna missed was always something that I really thought about, you know?
And every year I would sit and think, you know, I'm 42 or 44 and that she didn't get this.
She didn't get this, you know.
So I've always been very grateful for things, but even more so now, it's magnified it hugely for me.
So I try to really.
Be compassionate and love people.
In fact, I'm too nice.
Perhaps sometimes, you know, I can't help but compliment everybody and and go and tell people nice things all the time.
It's just quite excruciating.
Ty goes, they were poached eggs.
Don't have to go and say that.
But I love making anybody feel good.
I think you can touch people so much.
And it takes so little.
Don't get me wrong.
I'm not a better Rose is.
And I'm sure Ty has a lot to put up with, you know, and I go I can go from nought to ten now and get really overwhelmed over the most ridiculous stuff.
I lose stuff. I've lost my phone three times it's been here.
I put things in the wrong places.
I open up and go, what is that doing there?
I was like, you put it there, you know, it's like stuff like that.
So there's weird things.
You just got to be really positive, really enjoy everything that you've got right now and try not to look too far down the road because it ain't a good road that you're going to be going down.
And that's a whole other story because I personally don't want to go down that road.
So I'd like to take control and find a way out of it prior to that, because it's it ain't pretty what's ahead.
That's for sure. Yeah, I love listening to that reflection on life.
I have to say that the whole time I'm thinking about your kids.
I'm just wondering, telling your kids and how they responded.
In fact, one of the episodes that we did that the kids were interviewed in there and my oldest daughter said it was just, you know, it was like somebody had just pulled the rug from under her feet, you know, and we've always been super close and sort of chatted a lot.
I think it's just very hard to I think there's another amount of denial there too.
And not to know, Pravado, that I don't want to worry them.
They don't want to worry me.
So we're all just, you know, happy face, yeah.
Happy face. Trying to keep keep things cool.
And one of the loveliest thing about it, it was awful, but they're very strong people and very, very proud of all three of them.
You know, they're all they've all got amazing lies, amazing stories.
So I'm just so blessed that I've got such great close friendship with them.
That's my biggest achievement in life, is is them.
And now the grandkids like push the kids out the way like the grandkids.
It's just so beautiful to watch your children then have children and love them as much as your own children and watch your kids love their children.
It's just an amazing situation.
So very, very lucky.
God, I feel like hearing your story, which has got to be one of the most amazing stories I've ever heard, really, and knowing what you've gone through, I think, like to hear that, to know that you don't you're not complaining.
It's like, I'm I'm never going to complain again about anything.
Yeah. After hearing that's really quite inspiring.
Well, I just feel to be truthful.
It's really reminded me to be even more grateful.
You get so many people that dream of the big house, the better car, the bigger job, which are fantastic achievements for anybody, right?
But each one brings with it stress and hassle.
So I think when you peel back in life, what really does matter?
And this is what kills me the most with this.
Is if you've got cancer or if you've got various illnesses, when you when your time comes, the one thing you want is you couldn't give a shit about that big house or that car.
You want those that you love with you or surrounding you the warmth of those people.
Yeah. Yeah. This evil disease of the brain that strips you of the things you hold so dear, which are your memories, people that you love.
And the thought of me not recognising Thai or my kids or my grandkids like that.
It's just not negotiable.
Really, I just can't even think about that because that is all.
That's everything, isn't it?
Really? Briefly before you mentioned something that is potentially a taboo for a lot of people.
But I think if you don't mind, I might ask a question off the back of it.
I think you alluded to the idea of euthanasia before.
Is that something you've given much thought to of how that works, or your position personally and how that how that would look in your future?
That's a really good question.
Absolutely. It's something I've thought a lot about, and I think I would never, ever speak for anybody else, but just myself.
Yeah, I personally feel that I've been in control of everything all of my life and I personally want to try and stay in control if I can, and I would like to control as much as possible.
Up until the issue is having the bravery.
And I believe you have to be very, very brave to call it.
Yeah. But you have to be in a position where you've got all your faculties and you've got everything set up, so you can do this now.
You can set it all up and then be reviewed annually.
So if you get to a point where you feel as though you're starting to really go down, go on, you can you can start the process, so to speak.
But the problem is with this, if you leave it too far, just this much, you lose control, you lose the right.
Do you mean like with dementia?
Yep. Yep. So if you say it was you, imagine this, Ryan, imagine it being you now, and you know that you're going to be going down and down and down, and you know from research, you may not be probably not as aware as me now as some of some terrible things that you see.
It's sad what happens to some people.
A lot of carers would say it's heartbreaking to watch people.
And my heart goes out to so many people who are touched by dementia and who care for people.
But if you if you leave it too long, you have no control because it's not down to you anymore.
It falls into somebody else's responsibility.
In my case, it would be Ty and Daisy to make a decision on my care.
So it's a massive one to actually call it because you go, what if I call it too soon?
I'm going to lose out on all what I want.
But if you don't call it, you lose the ability.
So it's a very tricky one.
So I have thought of it, but I am doing so well myself.
I feel so good and you know, I I'm so grateful for my neurologist, my medication and all the people that have supported me to be well and I'm swimming or the things I'm doing.
So that's in the background.
And I don't feel like I'm anywhere near that right now.
Yeah, but it's definitely for me.
I don't want to go.
Down that road. Yeah.
I don't want to be a burden to people and burden to tie and see the kids and you know, I don't know about you guys feel exactly the same.
Yeah, I feel exactly the same, especially when you talked about so beautifully about and tragically about the idea of not people are everything to you and not being able to recognize.
Or that sounds like the worst possible type of hell.
Do you do because it would be hard not to think about that.
And I guess everyone has their own fears of the future.
And everyone, you know, we're always told to just be present for this moment and holding the moment.
How do you go with that with the almost controlling your thoughts and the fear or anxiety about the future?
I think I'm a bit of a control freak in the fact that if I allow myself to wallow, I know where it's going to go.
I can just get depressed and have too much wine.
We try not to drink too much, you know, as we all do.
And so you just got to try and laugh.
Like, you know, we laugh a lot, which I love.
And it's good to surround yourself with humor and people that make you laugh.
People that fill your cup love that one.
So. We're very strict on being present.
Put that phone down.
Yeah. You know, if we're if we're with friends, be there.
If you've got the kids, there's no phones.
You don't like it. We just want to be in the moment, you know, and and make the most of of that.
I want to replay that again.
That's amazing. Just a shout out to Future Hugh, who's listened to this seven times.
I just had one one question.
And that's a sad one.
So sorry to be sad.
I said you asked the best question.
I'll see how you feel after this one.
You're such an incredible storyteller.
Thank you. It's a real gift.
And when you were telling those stories about Lorna, it was so present and so real.
It's hard to imagine that it was over 25 years ago.
I don't know exactly how dementia works, but that must be terrifying.
Is there a chance that you won't be able to remember those stories one day?
Yeah. Yeah, because for me personally, my immediate memory is the issue.
You know, that feeling of going into a room and you go, what have you come in here for?
You know, you know, it happens 20 times a day.
It's trying the entire time and you go, but I used to go.
I, you know, now I go.
Okay. I just wait. Oh, wait.
And it truly is like there's two little guys in brown coats inside going, hurry up, like find it, you know, what does he want?
Get it. Get it. We got there, you know.
So that's my issue right now.
But long term, it starts to steal more from you to the point where it can steal all of it.
And so it's terrifying and extremely frightening that you may lose the ability to make decisions and reminisce about all those beautiful things.
And I was, we were interviewing an amazing couple the other day and she had lost literally her ability to talk now and slowly was, you know, going downhill.
But you could put on a particular song that she used to dance to doing this jive that this couple who had been together forever, you know, and she literally was back in the room, you know, and she could do it.
So there is these memories that are so deeply embedded in your brain, but it's the amyloids that build up more and more.
If you imagine that cup there with dust over years it's gathering.
It's pretty much like that, what's happening.
So this neuron connector isn't going to talk to this one.
So eventually these memories are in there.
You can't get to them.
And eventually those two guys will go, we're not doing anymore.
Like, you know, so that is my biggest fear.
And I think more so through the grandkids now, because they're so pure and beautiful and they light up our life.
And so the thought, like, I wanted to, you know, do so many things for them and take them and we're fortunate we've done well in life, you know, for what we need.
And I just want you to do so many things.
Disney will take them and do ski with them.
And so my biggest fears are that I won't get that.
That's incredibly frightening.
Such an awful scenario.
Throughout this whole conversation, I've been so moved by the way you talk about your family, especially Ty.
I love listening to you talk about Tyler.
It's great. So what does he mean to you?
Everything, everything.
He is one of the kindest, most genuine, loving people that's really had a big effect on my life, on my children's life.
And I never thought after Lorna that I could meet somebody that could make me feel so happy again.
And my daughter started to write my sort of memoirs for a fun thing to do together.
And she said, do you have any idea what you'd call it?
And I said, I do actually.
And I said, I just call it an ordinary life.
And I said to her, you know, you open the book and I said it would say to both my wife and my husband, I love you.
And she was like, I'm gone, I'm gone, we're doing this.
So yeah, so there you go.
Oh, I am investing in that book.
I'll send you a copy if ever it happens.
Wow. Amazing. I'm a little lost for words other than to say I just think you're the most beautiful, wholehearted people I've ever met.
And on behalf of everyone, not just just right on myself, everyone in the room.
Thank you for spending the time with us today because it's been enriching and insightful and really special.
It's my pleasure. I'm just so glad you thought it was interesting because, you know, the guests you have in us so interesting, I love it.
It's it's been a great experience to come in and do it.
So thank you for having me.
Thanks, Jim. The podcast is Hold the Moment.
If you'd like to hear more, which I think everyone's going to go binge now.
Thank you. Thank you.
Thank you, Jim. Imperfect is hosted and produced by Hugh van Carlenburg, Ryan Shelton and Josh van Carlenburg.
Our executive producer is Bridget Northeast, assistant producer Bella Northeast.
This episode is edited by George Martin with music from No Mono.
The Imperfect is not a licensed mental health service and is not a substitute for professional mental health advice, treatment or assessment.
The advice given in this episode is general in nature.
But if you're struggling, please see a health care professional or call Lifeline on 13 11 14.
