September 23, 2024 • 30 mins
When Millie Rogers first discovered her dad, Jim Rogers (co-host of Hold the Moment), had received a diagnosis of younger onset dementia, she felt like a rug had been pulled from beneath her feet.
“I just froze. I just couldn’t believe what he was saying.”
In this candid episode, Millie and her sister Daisy open up to journalist Hamish Macdonald about the initial shock of the diagnosis, Jim’s role as a grandfather to their young children, and how it can be hard to be vulnerable when everyone wants to put on a brave face.
Then, Jim Rogers interviews Hamish Macdonald about his experience with his own father’s diagnosis of Parkinson’s disease and Lewy body dementia. Hamish explains why giving his father dignity is crucial and why you need to advocate for your family member.
“People living with dementia need love and they need support, but they need advocates as well…You know, just actually getting your head around the really fine detail of what someone’s needs are and being able to advocate on their behalf.”
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Hold the Moment is a podcast from Dementia Australia, produced by Deadset Studios and hosted by Jim Rogers and Hamish Macdonald.
For support, you can contact the National Dementia Helpline on 1800 100 500 (24 hours a day, seven days a week). The National Dementia Helpline is funded by the Australian Government.
For more information, explore our support resources for family, friends, and carers or learn more about staying connected with loved ones.
Follow Dementia Australia on Facebook and Instagram or find support resources on our website.
This episode was produced by Madeleine Hawcroft, with sound design by Sean Holden. The executive producers are Grace Pashley and Kellie Riordan. Production manager is Ann Chesterman.
Thank you to Millie, Daisy and Maggie for being part of the episode.
Dementia Australia and Deadset Studios acknowledge the Traditional Owners of Country throughout Australia and recognise their continuing connection to lands, waters and communities. We pay our respect to their Elders past and present, and extend that respect to all Aboriginal and Torres Strait Islander peoples today.
Dementia Australia acknowledges and appreciates the support of the Australian Government for this initiative.
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Transcript
Episode Transcript
Available transcripts are automatically generated. Complete accuracy is not guaranteed.
(00:00):
- Hello, my name is Kevin.
I am a First Nations advocatewith Dementia Australia.
For more than 50,000 years,we have come together
to trade knowledge, tolearn, and to teach.
Today, we joined tokeep up that tradition.
So with that in mind,we now pay our respects
to the traditional owners,to Elders past and present,
to those First Nationspeople joining us here today.
(00:38):
- Hey Mag, should we go andget the coloured Play-Doh out?
- Yep.
- Which colours do you like?
- The green.- The green? Where's the green?
- Here.
- Okay, what is it you're doing?
- Putting this, putting green in here.
- Okay, how do you do it?- Like this.
(00:59):
- Ah, what's happened?- It's all mixed in!
- Pink and what other colour?
- Pink and green. It's a lollipop!
- Looks like a lolly. Youcould make a round bit
and put it on the top.
Roll that up with your hands.
Do you remember how to rollit into a ball? That's clever.
(01:20):
- Now put on here for me, this is easy.
- That's Jim Rogers doingwhat so many grandparents love
(01:42):
to do, caring for histhree-year-old granddaughter.
Her name's Maggie, excepthis situation is a little
different from most.
Jim is living withyounger-onset Alzheimer's.
I'm Hamish MacDonald, andthis is Hold the Moment.
It's a podcast from DementiaAustralia about dealing
with life after a diagnosis of dementia.
(02:05):
Across this series, you've been hearing
from people living withdementia, and how they're dealing
with some of the changesthey're faced with,
whether it's adjusting toa new exercise routine,
grappling with disturbances to sleep,
coping with changes toyour close relationships
with family and friends.
It's something my familyhas had to deal with too.
My own dad has Parkinson'sand Lewy body dementia,
(02:28):
and you'll hear more aboutthat later in this episode,
and I'm hosting thisseries with my friend, Jim.
- Good day, Hame. How are you?
- I'm very well, thankyou. Good to see you.
I know you are really closewith your entire family,
and they've been critical toevery stage of your journey;
but just tell me a littlebit about the Rogers clan.
(02:49):
- Well, the Rogers clan areamazing, but I'm biassed.
So I've got my husband, Ty,who is an amazing human.
We've been togetherfor 25 years next year.
My oldest daughter, Millie,my youngest daughter, Daisy,
and also my son, Harvey,who's in the Gold Coast.
So yeah, they're a pretty amazing bunch
(03:11):
and love them to bits.
- Alright, let's meet yourdaughters Millie and Daisy.
- I am Millie, I am33, and I'm the eldest,
and I have two littlekids, Maggie and Rocky.
- I'm Daisy, I'm 30, Ihave two little boys,
(03:35):
and I'm Jim's youngestdaughter, the favourite one.
- Are you?
- Yes I am.
- Is she really the favourite?
- Don't tell the other one.
- I think so, it changes.- Yeah, it depends on the day.
- Yeah, it depends on the day.
- And so, have you alwayshad that kind of big sister,
little sister dynamic? What's the vibe?
- Yeah, I reckon we areway closer now than we were
(03:56):
when we were teenagers,
but we are prettyinseparable at the moment,
like see each other, talk toeach other, every single day.
- Yeah, I would alwayslook up to Millie as like,
not only a sister, but amotherly figure as well,
because, obviously, we lostour mum when we were younger,
so that's always been really nice for me.
- Because you guys were pretty
(04:17):
young when your mum died, right?
- Yep, I had just turned five.
- Yeah.
- I don't remember too muchof her at all, to be honest.
- Yeah, I remember bits, but not a lot,
but I remember dad tellingus, and that day was vivid.
I remember every single detail.
I remember our grandparentsjust took us to a park,
(04:38):
and we were just playing,and then we'd get home,
and I remember dad was wearingthis bright green jumper
with a red letter on it,
yeah, then he sat down and told us,
and we just didn't believe him,
and I ran around thehouse trying to find her,
thought he was joking,
and then pretty quicklyrealised it wasn't a joke,
and yeah, it was pretty full on.
(05:00):
- And what was your dad like at that time?
- So strong. So strong.
We never saw the hard side of it
because he was just a brave face.
- He used to take us to school,
and all of our hair would be perfect,
our lunches would be packed,our clothes would be perfect,
and he would walk us to school,and just have a brave face,
(05:23):
and then go home, and justclose the curtains and cry,
or be upset, and you know,reality would sink in.
But yeah, we never were awareof how hard it was for him.
- Can we go back a few steps?
Millie, how did you find out that your dad
had received this dementia diagnosis?
(05:44):
- So I was in Brisbane at this point,
and my family were in Sydney.
And I remember hearing bits and pieces
about how dad had these scans,
but they were really underplayed,
"Oh, I'm just going in for this thing."
And I just, yeah, so when he told me,
I remember standing outside Maggie's room.
- This is your daughter?
- Yeah, and I was cleaning or something,
(06:05):
and I was on the phone, and yeah,
I followed up about these scans
and then dad just, dad said,"Well, I've been diagnosed
with early-onset Alzheimer's",and I just froze,
and felt like the floor hadjust been ripped under my feet,
and just couldn't believewhat he was saying.
I didn't know the severity of it.
(06:26):
And I remember thenGoogling it and just being,
I had to communicate it to my husband,
and I was just like, this is unbelievable,
like actually unbelievable,I just couldn't believe it.
- What you are reading,did that match up with
what you saw in your dad? I guess?
- No, no.
And then I thought, what haven'tyou've been telling us dad?
(06:47):
Because I thought, you know,
he must not be tellingus certain things about
what he's remembering.
And then he said, youknow, when he went into one
of the meetings, he was on his phone,
and couldn't rememberhow to put it on silent,
or something that everyonejust knows how to do.
So yeah, it was just wild,I just couldn't believe it,
(07:09):
and also went just really numb,
and then, went down a bit of a rabbit hole
of finding out about it,
and we were all educatingourselves together,
because no, we didn'tknow anyone who's had it.
Not a grandparent, nota cousin, or an auntie,
like no one, no one in our family,
and he just got it, andit's just bizarre to us.
(07:33):
- Do you advise the DrGoogle path? Is it helpful?
Is it, I mean I've spentso many hours reading
everything I can find,
I'm just not entirelysure how useful it is.
- I think information iskey, for me, personally.
I feel more comfortable with something
the more that I know about it,
can learn about it, readabout it, can relate to it,
(07:55):
hear people talking about theexperiences that I'm going
through, you know, just sortof, it's comforting for me.
- Whereas I found it like themore I read, the worse it got.
And I just remember Ty beingso incredible with advice,
and videos, and things he had seen,
and he'd shared them with us,
and that was really helpful to me.
(08:17):
And then hearing throughdad's professionals as well,
and dad communicating it with us.
- How involved have you guys been with all
of the decision makingthat's come along with this
period of your dad's life?
Because there's a lot ofreally confronting decisions
that can be quite difficult.
How much have you been part of that?
- I'm power of attorneywith Ty, and I have to,
(08:39):
you know, make executivedecisions like that for him.
If dad had to go into, you know,
get additional support, or in a care home,
or something like that, thenthat's the responsibility
that we would have make together,
and make those decisionsfor him, the best for him.
(09:01):
- Are you daunted by that?- Not really, actually.
I think it's a big responsibility
but you know, all I wantis the best for him,
and all I care about ishis happiness, his health,
what's most comfortable for him.
So I feel happy to be onboard making those decisions.
(09:24):
I think it's reallyimportant to be prepared
and have some sort of idea,
and not make a decision based on emotion.
Because once they've declined,
it's just incredibly raw and sad,
you don't want to be making a decision
based off those feelings.
You sort of just haveto start preparing of
(09:44):
what you're wanting to bedoing now, whilst you can,
- Obviously, your dadlives for the grandkids.
- Mm.- Yep.
- How much of that can he still do,
and how are you managingthat as things evolve?
- Yeah, he's definitelyan amazing granddad
and is so present,
and you know, justgives 150% all the time.
(10:08):
- Yeah. Amazing granddad, mykids are just obsessed with him
and Ty, and yeah, so much effort.
Even dad will go a weekwithout seeing Maggie,
after three days, he'sFaceTiming her saying,
"I miss you so much grand,"
they call him grand, "We'llsee you really soon."
And yeah, he just puts in so much effort,
(10:29):
but we're just really mindful,
yeah, sometimes, we have tosay, "Go and have a rest,"
or the four kids all together,
like he loves everyone being all together,
but it's also a lot, and abit of a sensory overload,
so it's like we just makesure there's not music on,
and yeah, go for a little walk outside.
So it just breaks it up a bit,
(10:50):
and have that one-on-one withthe kids is better for him.
- He used to have thekids on dedicated days.
So, for example, he'dhave Maggie on a Tuesday,
Archie on a Thursday,and things like that,
or Maggie would sleepover, and things like that.
But I think Millie and Iare very conscious of him
becoming tired, and it's quitedraining for him now, so...
(11:12):
- Which he finds really hard
because he wants to take themto their cottage for a week
and do all those things,
and I really hope we can make that happen,
but at the same time, we might not.
- Yeah, it's hard to accept those things.
Definitely. You know, like he'llsay wait till they're older
and we'll all be going on holidays,
(11:34):
or you know, we're going to get bunk beds,
and they'll all come forsleepovers, and we'll watch movies,
and it's so incredible tohear and think in your head,
but it's like the other side of that is,
"Is that really what'sgoing to happen?" You know,
and you hope and you pray,but you just never know,
so it's double-edged sword in a way.
(11:54):
- Your dad said to methat when your mum died,
when Lorna died, hekind of went into a bit
of a super dad mode, thatwas his response to it.
And he compared that withnow, and learning the news,
and wanting to give you guys
an impression of everythingthat it was all okay.
(12:17):
Can you see that parallel?
- Yeah, as soon as you justsaid that, I'm thinking,
"Oh my God, he's done the samething with our grandkids."
- I, for sure, agree with that.- Like super granddad.
- Yeah.
- 150% all the time, everyday, to protect them,
but also for us, becausehe puts on a brave face
for us as well, definitely.
- Yeah, he definitely putson a brave face. Yeah.
(12:38):
Like we kind of forget whathe's going through, in a way,
because we don't talk about it that often.
And he's doing so well that,
I mean, sometimes, we even forget,
and then we just did a memorywalk, and we all got together,
and that was really confronting,
because we don't do these things
where we sit and talk about it.
(12:59):
We just, we try to put ona brave face too, for him,
and just live normally.
- I imagine for a lot of thepeople listening to this,
it's kind of going to bea similar experience of,
"Okay, we want to makethe best of this time",
but there's also somereally tough bits of this,
so to the extent that you're happy to,
(13:19):
can you just share a bit about that?
- Yeah, I think it's, youknow, you put one foot in front
of the other every day, andyou try and live a normal life
and be there for him, andthings like that, but yeah,
you have moments whereI'll just not stop crying,
and just fall into my husband's arms,
and then, I literallywiped the tears away,
(13:40):
and I'm like, "No, I'mfine now, let's go."
And I did that for another few months,
and then, I only did itrecently with a friend,
and my friend's like, "Are you okay?"
And I'm like, "Yeah, this is just wild,
because people ask you how he's going,
and he's going so well, but when you think
about what the future'sgoing to bring, it's scary.
- When you have those moments,
(14:01):
what is it that you're thinking about?
- My biggest thing is my daughter.- Mag.
- What are you doing? Mag.- Eating lollipop
- Eating the lollipop.
- I pretend I'm a bird.- And you are a little bird?
- And him not knowing who she is,
(14:25):
because they're just so close,
and she just lights up his life,
all the grandkids do.
But I think Maggie's agirl and she was the first,
so she has this reallyspecial connection with dad,
so, for me, it's that.
I think I will be ableto find a way to be okay.
I will, but for her it's,
(14:47):
that's what's really killing me, yeah.
- Dad and I are super close.
He's like my best friend so it's like,
I just can't imagine nothaving him to talk to,
or you know, ask questions,
because I literally leanon him for everything.
Like what pillow should I buy?
It's a joke. It's ridiculous. You know.
(15:07):
- They do talk, I'm like,"Dad can you answer my phone?"
"Sorry I was on the phone toDaisy, can I have a minute?"
- Yeah, but you know, mypartner makes fun of me
because he's like, "Oh,are we allowed to get,
not allowed, but it will be,"Should we get this pasta,
or you know, do you haveto ask your dad first?",
that sort of thing, so we aresuper, super, super close,
and I talk to him about everything.
So yeah, the thought ofnot having that is just
(15:31):
it's so hard to comprehend, and yeah,
I lock away those feelings
because I don't want to deal with it.
It's tough. It's really hard.
- I know you're cautious in what you say
because your dad will belistening to this, g'day, Jim.
- Hi dad.- And there's obviously stuff
(15:52):
that's difficult to talk about.
What do you want him toknow that you kind of
haven't been able to say, or...?
- I want him to know thatit's okay to talk about it,
and it's okay to be,
I don't want to say, Idon't know the words...
- Vulnerable.- Vulnerable, yeah.
(16:13):
It's okay to be vulnerable,
and it's okay to use us for support,
and not always put on abrave face to protect us,
because we, at this point in our lives,
like all we want to do is protect him.
We just want to make sure thathe's happy and comfortable,
and anything that we cando to make him feel better,
we'll do.
(16:34):
- What about you, Millie?
- Oh, just that he'sthe most amazing person
and the greatest dad.
- He is. Yep.
- And yeah, like Daisysaid, let us help you.
We have kids of our own now,
so it's like, we knowthat we are his babies,
but it's like, let us helpyou, we just adore you,
(16:56):
and yeah, he's just one of the greats.
(17:18):
- Okay, Hamish. You've had thechance to dig into my family.
So now, it's my turn toturn the tables on you.
- Great.
You are not used to being interviewed,
so it's going to be interesting
to put you in the chair, I think.
- Yeah, do your worst.
- Firstly, I just wanted to go back
and chat a little bit about your dad,
(17:39):
and ask you what qualities you think
you might have got from him?
- Probably a fair degree ofstubbornness and iron will.
Dad's also very independent,
and has always been very independent,
and I think I've probablygot that from him,
like independent thinking.
- Yeah.
(18:00):
- I don't think dad issomeone that ever likes
being told what to do,or even feeling like
he's just going along with the pack,
so maybe I've got that from him.
Dad loves the outdoors andhas always been very active
and sporty, and I've got that too.
(18:21):
So yeah, maybe I've got some of the good
and some of the bad.
- Let's hope more of the good.
But you, since discovering his dementia,
have you noticed any of those qualities
that you talk about, hisindependence, being affected?
- Yeah, I mean, absolutely.
I guess one of the thingsabout dad's situation is
(18:44):
that he's lost all of his independence,
and I think that's what'sbeen particularly confronting
for him, but also challengingin terms of trying to help him
deal with it, and be caredfor in the right way.
So dad was initially diagnosedwith Parkinson's disease,
and then Lewy body dementia.
And so, he has,
(19:07):
I think, always struggledwith that diagnosis.
You know, he's a pharmacist
so he knows all about the medication.
He's able to talk very cognitively,
and in great detail about that side of it,
but then, will really lackinsight into what his needs are,
(19:28):
and what his limitations are.
So all the way through thisprocess, it's been a real,
I guess, point of frictionfor him with his family
about what he is and isn't able to do.
- How frustrating.
- Oh, he's hugely frustrated, you know,
he still wants to live on his own.
(19:49):
He still wants to moveto Queensland, like you.
He wants to live in a flaton his own in Queensland,
he has wanted that right theway through this process,
even though he can'tcook or care for himself,
he can't now use a phone or a laptop.
He couldn't take moneyout of a cash machine,
and that's been a sort ofsteady decline, I suppose.
(20:10):
but this whole experience has meant
that I've had a more kindof intimate relationship
with Dad than what Iwould ever have expected,
because you sort of haveto get to know parts
of your parent, you know,
and their life in a way thatyou would never anticipate,
and even see themsobbing on a bed, crying,
(20:34):
or sort of talkingabout wanting their life
to be over, and things like that...
- Things you never reallyexpect to hear from the parents,
sort of that role reversal.
- Totally, but just also not even
the parent-child part ofthe relationship, just,
it's not really him tokind of be like that.
you know, he's alwaysbeen this force of nature.
(20:58):
Very determined, veryScottish, you know, that kind
of like hard Presbyterian work ethic,
and all that kind ofthing, kind of dower guy.
And yeah, so to see someone like that
in a really deeply vulnerable situation
is quite confronting.
- I can imagine. Just takeme back a little bit just to
(21:22):
when was he diagnosed,
and what were the signs thatsort of led to that diagnosis?
- It was a fairly gradualprocess, actually.
So, I come from a place called Jindabyne,
in the snowy mountains of New South Wales,
that's where I grew up,
and dad remained thereup until a few years ago.
(21:43):
Our house was out of town,
in a little hamlet called East Jindabyne,
and my parents have not beentogether for a long time.
So dad was living therefor many years on his own,
and it was obvious to me,it had been obvious to me
for some time that hewas not really himself,
that things were declining a bit.
(22:04):
There was no diagnosis.
But for someone that hadalways been so physical
and so active, and so disciplined,
it seemed like thatwas falling away a bit.
His clothes would kind of not fit,
or his trousers would befalling down, you know,
there'd be more bathroom incidents.
(22:25):
He was clearly, I guess, forgetful
or, you know, his long-termmemory would be brilliant,
but then there would bemore obvious, recent stuff
that was sort of not all fitting together.
The big thing that stood out to me was
that he was just increasinglyunable to maintain the home.
(22:46):
- And prior to that, washe always very organised,
very on the ball, you know?
- Yeah, like he was nevertechnological, so, you know...
- Very tidy and...- Yes
and very kind of just on point with stuff.
- Yeah.- But it wasn't like that.
I'd go down and the housewould sort of look like,
(23:06):
I used to describe it as being like,
it looked like the Unabomber lived there.
- Yeah.- So, I think he was coping
or adapting to whateverwas going on for him by
putting everything thathe needed out on benches,
rather than away in drawers.
So, all of the cutlery that he used
would be kept on the bench.
(23:27):
- So, visible.
- Yeah. Or he couldn't usethe window blinds properly,
- Yeah. Or he couldn't usethe window blinds properly,
so they'd have like post-itnotes clipped to them,
showing him where to raise them to.
- Like he had a backupplan for everything to try
and make everything simplified.
- Kind of, yeah.
And I actually watched astory on the 7:30 report
(23:49):
about an author in Englandthat was living with dementia,
and she was doing something very similar.
So, I guess I had some kind of inkling,
but there was no diagnosis.
Anyway, the GP fromJindabyne rang me and said,
"We think you probably need to come down,
and come to an appointment with him
(24:10):
so we can just talk aboutwhere things are at."
And Jindabyne's a smallcommunity, it's really tight knit.
Dad had been the pharmacythere for many, many years,
so he knows most people in town.
But basically, the substanceof this appointment
or meeting was, youneed to go to hospital,
but you need to be testedfor a whole bunch of things,
because, really, the community'sbeen supporting you a lot,
(24:35):
but it's kind of becoming too much.
And so, it turned out he was reliant
on people for lots of things,more so than we even knew.
People were helping himchange his bedsheets,
or helping him bathroom,
or, you know, it wasmore than just kind of
neighbourly, friendly help.
(24:55):
And so, when he was in hospital,
he was diagnosed with Parkinson's.
It was subsequent to thatthat he was then diagnosed
with Lewy body dementia,
which is not disconnectedfrom Parkinson's.
They're often describedas being on a spectrum,
and so, he's been livingwith that ever since.
(25:16):
- So, who goes with yourdad to his appointments now?
- I go to a lot of them.
My big sister sometimes takes him
to his skin specialist appointments.
Thankfully, we have a GP that visits him
in the aged care residentialsetting that he's in.
(25:37):
And you know, gradually,
he's going out to lessand less appointments,
because it's become toodifficult for him, actually.
- Can it be tricky nownegotiating who does what
with the siblings?
- Yeah, I mean, I thinkany family will have great
challenges dealing with a relative
that's living with dementia.
(25:57):
And I think it's, one ofthe things I've learnt
through this is just thevalue of communicating,
having open conversations really early on,
whether you have dementiain your life or not,
but for adult children ofparents to talk to them about
what they want, and what their wishes are,
what the arrangements are going to be,
(26:17):
and vice versa for theparents who are ageing
to have those conversations as well.
Even though some of thestuff might be confronting,
or difficult, or emotional, Ijust think it's so much better
to have those chats when you can,
and when there's not theearly on, yeah, totally.
- And do you tend to agreeall of you on the same thing?
How do you come to an agreement?
(26:42):
- We don't, really. Yeah.
So yeah, it's been really difficult,
and obviously, you wantto be respectful of others
and you know...
- It's tough, all of this istough on a family, isn't it?
- It absolutely is. You know,
people talk about dementia, rightly so,
(27:03):
and focus on the person thatis living with that condition,
but actually, I think when that happens,
the condition impactseveryone in that, you know...
- It does, yeah.
In that little ecosystem.
And the way I've approached it all along
is just to try and give him dignity.
(27:24):
Not that he's said this explicitly,
but my impression is
that he feels like the wholething's very undignified,
and he's an incrediblyproud man, always has been.
And I just, my sense of it is
that he feels humiliatedby what he's living with,
and the situation thathe's found himself in.
(27:46):
And so, I always just approach everything
with trying to give him as muchdignity around it as I can.
So make sure he's alwaysgot nice clothes to wear,
something that he would like.
You know, just trying to make sure that,
(28:07):
the doctors are good, that attention
is being paid to all the small details,
because it's very easy forsomeone in this situation
just to be kind of lostin the system, I think.
You know, people living with dementia,
they need love, and they need support,
but they need advocates as well.
They need people that will go in with them
(28:28):
to the appointments, or followup after the appointments,
or read the detail in theletters from the doctors,
or see the bit of medicationthat's missing, or you know,
just actually getting your head around
the really fine detail ofwhat someone's needs are,
and being able toadvocate on their behalf.
I never expected thatwould be part of this,
(28:51):
but I think it is.
Hold the Moment is a podcastfrom Dementia Australia.
(29:11):
You can find it in all podcast apps.
Don't forget, there aremore resources available
on the Dementia Australia website as well.
And help is at hand via thefree National Dementia Helpline.
You can call it 24-hours a day,
every day of the year on 1800 100 500.
- And we also have a bonusepisode of Tips for You
(29:32):
from the helpline, too.
You'll find it in your podcast app now.
So, if your family needshelp on navigating life
now you have a diagnosis,download it right now.
- Hold the Moment isproduced by DeadSet Studios
for Dementia Australia.
This episode was producedby Madeline Hawcroft,
sound design by Sean Holden.
(29:53):
The executive producers atGrace Pashley and Kelly Rearden.
The production manager is Anne Chesterman.
- Hello, my name is Kevin.
I am a First Nations advocatewith Dementia Australia.
For more than 50,000 years,we have come together
to trade knowledge, tolearn, and to teach.
Today, we joined tokeep up that tradition.
So with that in mind,we now pay our respects
to the traditional owners,to Elders past and present,
to those First Nationspeople joining us here today.
(00:38):
- Hey Mag, should we go andget the coloured Play-Doh out?
- Yep.
- Which colours do you like?
- The green.- The green? Where's the green?
- Here.
- Okay, what is it you're doing?
- Putting this, putting green in here.
- Okay, how do you do it?- Like this.
(00:59):
- Ah, what's happened?- It's all mixed in!
- Pink and what other colour?
- Pink and green. It's a lollipop!
- Looks like a lolly. Youcould make a round bit
and put it on the top.
Roll that up with your hands.
Do you remember how to rollit into a ball? That's clever.
(01:20):
- Now put on here for me, this is easy.
- That's Jim Rogers doingwhat so many grandparents love
(01:42):
to do, caring for histhree-year-old granddaughter.
Her name's Maggie, excepthis situation is a little
different from most.
Jim is living withyounger-onset Alzheimer's.
I'm Hamish MacDonald, andthis is Hold the Moment.
It's a podcast from DementiaAustralia about dealing
with life after a diagnosis of dementia.
(02:05):
Across this series, you've been hearing
from people living withdementia, and how they're dealing
with some of the changesthey're faced with,
whether it's adjusting toa new exercise routine,
grappling with disturbances to sleep,
coping with changes toyour close relationships
with family and friends.
It's something my familyhas had to deal with too.
My own dad has Parkinson'sand Lewy body dementia,
(02:28):
and you'll hear more aboutthat later in this episode,
and I'm hosting thisseries with my friend, Jim.
- Good day, Hame. How are you?
- I'm very well, thankyou. Good to see you.
I know you are really closewith your entire family,
and they've been critical toevery stage of your journey;
but just tell me a littlebit about the Rogers clan.
(02:49):
- Well, the Rogers clan areamazing, but I'm biassed.
So I've got my husband, Ty,who is an amazing human.
We've been togetherfor 25 years next year.
My oldest daughter, Millie,my youngest daughter, Daisy,
and also my son, Harvey,who's in the Gold Coast.
So yeah, they're a pretty amazing bunch
(03:11):
and love them to bits.
- Alright, let's meet yourdaughters Millie and Daisy.
- I am Millie, I am33, and I'm the eldest,
and I have two littlekids, Maggie and Rocky.
- I'm Daisy, I'm 30, Ihave two little boys,
(03:35):
and I'm Jim's youngestdaughter, the favourite one.
- Are you?
- Yes I am.
- Is she really the favourite?
- Don't tell the other one.
- I think so, it changes.- Yeah, it depends on the day.
- Yeah, it depends on the day.
- And so, have you alwayshad that kind of big sister,
little sister dynamic? What's the vibe?
- Yeah, I reckon we areway closer now than we were
(03:56):
when we were teenagers,
but we are prettyinseparable at the moment,
like see each other, talk toeach other, every single day.
- Yeah, I would alwayslook up to Millie as like,
not only a sister, but amotherly figure as well,
because, obviously, we lostour mum when we were younger,
so that's always been really nice for me.
- Because you guys were pretty
(04:17):
young when your mum died, right?
- Yep, I had just turned five.
- Yeah.
- I don't remember too muchof her at all, to be honest.
- Yeah, I remember bits, but not a lot,
but I remember dad tellingus, and that day was vivid.
I remember every single detail.
I remember our grandparentsjust took us to a park,
(04:38):
and we were just playing,and then we'd get home,
and I remember dad was wearingthis bright green jumper
with a red letter on it,
yeah, then he sat down and told us,
and we just didn't believe him,
and I ran around thehouse trying to find her,
thought he was joking,
and then pretty quicklyrealised it wasn't a joke,
and yeah, it was pretty full on.
(05:00):
- And what was your dad like at that time?
- So strong. So strong.
We never saw the hard side of it
because he was just a brave face.
- He used to take us to school,
and all of our hair would be perfect,
our lunches would be packed,our clothes would be perfect,
and he would walk us to school,and just have a brave face,
(05:23):
and then go home, and justclose the curtains and cry,
or be upset, and you know,reality would sink in.
But yeah, we never were awareof how hard it was for him.
- Can we go back a few steps?
Millie, how did you find out that your dad
had received this dementia diagnosis?
(05:44):
- So I was in Brisbane at this point,
and my family were in Sydney.
And I remember hearing bits and pieces
about how dad had these scans,
but they were really underplayed,
"Oh, I'm just going in for this thing."
And I just, yeah, so when he told me,
I remember standing outside Maggie's room.
- This is your daughter?
- Yeah, and I was cleaning or something,
(06:05):
and I was on the phone, and yeah,
I followed up about these scans
and then dad just, dad said,"Well, I've been diagnosed
with early-onset Alzheimer's",and I just froze,
and felt like the floor hadjust been ripped under my feet,
and just couldn't believewhat he was saying.
I didn't know the severity of it.
(06:26):
And I remember thenGoogling it and just being,
I had to communicate it to my husband,
and I was just like, this is unbelievable,
like actually unbelievable,I just couldn't believe it.
- What you are reading,did that match up with
what you saw in your dad? I guess?
- No, no.
And then I thought, what haven'tyou've been telling us dad?
(06:47):
Because I thought, you know,
he must not be tellingus certain things about
what he's remembering.
And then he said, youknow, when he went into one
of the meetings, he was on his phone,
and couldn't rememberhow to put it on silent,
or something that everyonejust knows how to do.
So yeah, it was just wild,I just couldn't believe it,
(07:09):
and also went just really numb,
and then, went down a bit of a rabbit hole
of finding out about it,
and we were all educatingourselves together,
because no, we didn'tknow anyone who's had it.
Not a grandparent, nota cousin, or an auntie,
like no one, no one in our family,
and he just got it, andit's just bizarre to us.
(07:33):
- Do you advise the DrGoogle path? Is it helpful?
Is it, I mean I've spentso many hours reading
everything I can find,
I'm just not entirelysure how useful it is.
- I think information iskey, for me, personally.
I feel more comfortable with something
the more that I know about it,
can learn about it, readabout it, can relate to it,
(07:55):
hear people talking about theexperiences that I'm going
through, you know, just sortof, it's comforting for me.
- Whereas I found it like themore I read, the worse it got.
And I just remember Ty beingso incredible with advice,
and videos, and things he had seen,
and he'd shared them with us,
and that was really helpful to me.
(08:17):
And then hearing throughdad's professionals as well,
and dad communicating it with us.
- How involved have you guys been with all
of the decision makingthat's come along with this
period of your dad's life?
Because there's a lot ofreally confronting decisions
that can be quite difficult.
How much have you been part of that?
- I'm power of attorneywith Ty, and I have to,
(08:39):
you know, make executivedecisions like that for him.
If dad had to go into, you know,
get additional support, or in a care home,
or something like that, thenthat's the responsibility
that we would have make together,
and make those decisionsfor him, the best for him.
(09:01):
- Are you daunted by that?- Not really, actually.
I think it's a big responsibility
but you know, all I wantis the best for him,
and all I care about ishis happiness, his health,
what's most comfortable for him.
So I feel happy to be onboard making those decisions.
(09:24):
I think it's reallyimportant to be prepared
and have some sort of idea,
and not make a decision based on emotion.
Because once they've declined,
it's just incredibly raw and sad,
you don't want to be making a decision
based off those feelings.
You sort of just haveto start preparing of
(09:44):
what you're wanting to bedoing now, whilst you can,
- Obviously, your dadlives for the grandkids.
- Mm.- Yep.
- How much of that can he still do,
and how are you managingthat as things evolve?
- Yeah, he's definitelyan amazing granddad
and is so present,
and you know, justgives 150% all the time.
(10:08):
- Yeah. Amazing granddad, mykids are just obsessed with him
and Ty, and yeah, so much effort.
Even dad will go a weekwithout seeing Maggie,
after three days, he'sFaceTiming her saying,
"I miss you so much grand,"
they call him grand, "We'llsee you really soon."
And yeah, he just puts in so much effort,
(10:29):
but we're just really mindful,
yeah, sometimes, we have tosay, "Go and have a rest,"
or the four kids all together,
like he loves everyone being all together,
but it's also a lot, and abit of a sensory overload,
so it's like we just makesure there's not music on,
and yeah, go for a little walk outside.
So it just breaks it up a bit,
(10:50):
and have that one-on-one withthe kids is better for him.
- He used to have thekids on dedicated days.
So, for example, he'dhave Maggie on a Tuesday,
Archie on a Thursday,and things like that,
or Maggie would sleepover, and things like that.
But I think Millie and Iare very conscious of him
becoming tired, and it's quitedraining for him now, so...
(11:12):
- Which he finds really hard
because he wants to take themto their cottage for a week
and do all those things,
and I really hope we can make that happen,
but at the same time, we might not.
- Yeah, it's hard to accept those things.
Definitely. You know, like he'llsay wait till they're older
and we'll all be going on holidays,
(11:34):
or you know, we're going to get bunk beds,
and they'll all come forsleepovers, and we'll watch movies,
and it's so incredible tohear and think in your head,
but it's like the other side of that is,
"Is that really what'sgoing to happen?" You know,
and you hope and you pray,but you just never know,
so it's double-edged sword in a way.
(11:54):
- Your dad said to methat when your mum died,
when Lorna died, hekind of went into a bit
of a super dad mode, thatwas his response to it.
And he compared that withnow, and learning the news,
and wanting to give you guys
an impression of everythingthat it was all okay.
(12:17):
Can you see that parallel?
- Yeah, as soon as you justsaid that, I'm thinking,
"Oh my God, he's done the samething with our grandkids."
- I, for sure, agree with that.- Like super granddad.
- Yeah.
- 150% all the time, everyday, to protect them,
but also for us, becausehe puts on a brave face
for us as well, definitely.
- Yeah, he definitely putson a brave face. Yeah.
(12:38):
Like we kind of forget whathe's going through, in a way,
because we don't talk about it that often.
And he's doing so well that,
I mean, sometimes, we even forget,
and then we just did a memorywalk, and we all got together,
and that was really confronting,
because we don't do these things
where we sit and talk about it.
(12:59):
We just, we try to put ona brave face too, for him,
and just live normally.
- I imagine for a lot of thepeople listening to this,
it's kind of going to bea similar experience of,
"Okay, we want to makethe best of this time",
but there's also somereally tough bits of this,
so to the extent that you're happy to,
(13:19):
can you just share a bit about that?
- Yeah, I think it's, youknow, you put one foot in front
of the other every day, andyou try and live a normal life
and be there for him, andthings like that, but yeah,
you have moments whereI'll just not stop crying,
and just fall into my husband's arms,
and then, I literallywiped the tears away,
(13:40):
and I'm like, "No, I'mfine now, let's go."
And I did that for another few months,
and then, I only did itrecently with a friend,
and my friend's like, "Are you okay?"
And I'm like, "Yeah, this is just wild,
because people ask you how he's going,
and he's going so well, but when you think
about what the future'sgoing to bring, it's scary.
- When you have those moments,
(14:01):
what is it that you're thinking about?
- My biggest thing is my daughter.- Mag.
- What are you doing? Mag.- Eating lollipop
- Eating the lollipop.
- I pretend I'm a bird.- And you are a little bird?
- And him not knowing who she is,
(14:25):
because they're just so close,
and she just lights up his life,
all the grandkids do.
But I think Maggie's agirl and she was the first,
so she has this reallyspecial connection with dad,
so, for me, it's that.
I think I will be ableto find a way to be okay.
I will, but for her it's,
(14:47):
that's what's really killing me, yeah.
- Dad and I are super close.
He's like my best friend so it's like,
I just can't imagine nothaving him to talk to,
or you know, ask questions,
because I literally leanon him for everything.
Like what pillow should I buy?
It's a joke. It's ridiculous. You know.
(15:07):
- They do talk, I'm like,"Dad can you answer my phone?"
"Sorry I was on the phone toDaisy, can I have a minute?"
- Yeah, but you know, mypartner makes fun of me
because he's like, "Oh,are we allowed to get,
not allowed, but it will be,"Should we get this pasta,
or you know, do you haveto ask your dad first?",
that sort of thing, so we aresuper, super, super close,
and I talk to him about everything.
So yeah, the thought ofnot having that is just
(15:31):
it's so hard to comprehend, and yeah,
I lock away those feelings
because I don't want to deal with it.
It's tough. It's really hard.
- I know you're cautious in what you say
because your dad will belistening to this, g'day, Jim.
- Hi dad.- And there's obviously stuff
(15:52):
that's difficult to talk about.
What do you want him toknow that you kind of
haven't been able to say, or...?
- I want him to know thatit's okay to talk about it,
and it's okay to be,
I don't want to say, Idon't know the words...
- Vulnerable.- Vulnerable, yeah.
(16:13):
It's okay to be vulnerable,
and it's okay to use us for support,
and not always put on abrave face to protect us,
because we, at this point in our lives,
like all we want to do is protect him.
We just want to make sure thathe's happy and comfortable,
and anything that we cando to make him feel better,
we'll do.
(16:34):
- What about you, Millie?
- Oh, just that he'sthe most amazing person
and the greatest dad.
- He is. Yep.
- And yeah, like Daisysaid, let us help you.
We have kids of our own now,
so it's like, we knowthat we are his babies,
but it's like, let us helpyou, we just adore you,
(16:56):
and yeah, he's just one of the greats.
(17:18):
- Okay, Hamish. You've had thechance to dig into my family.
So now, it's my turn toturn the tables on you.
- Great.
You are not used to being interviewed,
so it's going to be interesting
to put you in the chair, I think.
- Yeah, do your worst.
- Firstly, I just wanted to go back
and chat a little bit about your dad,
(17:39):
and ask you what qualities you think
you might have got from him?
- Probably a fair degree ofstubbornness and iron will.
Dad's also very independent,
and has always been very independent,
and I think I've probablygot that from him,
like independent thinking.
- Yeah.
(18:00):
- I don't think dad issomeone that ever likes
being told what to do,or even feeling like
he's just going along with the pack,
so maybe I've got that from him.
Dad loves the outdoors andhas always been very active
and sporty, and I've got that too.
(18:21):
So yeah, maybe I've got some of the good
and some of the bad.
- Let's hope more of the good.
But you, since discovering his dementia,
have you noticed any of those qualities
that you talk about, hisindependence, being affected?
- Yeah, I mean, absolutely.
I guess one of the thingsabout dad's situation is
(18:44):
that he's lost all of his independence,
and I think that's what'sbeen particularly confronting
for him, but also challengingin terms of trying to help him
deal with it, and be caredfor in the right way.
So dad was initially diagnosedwith Parkinson's disease,
and then Lewy body dementia.
And so, he has,
(19:07):
I think, always struggledwith that diagnosis.
You know, he's a pharmacist
so he knows all about the medication.
He's able to talk very cognitively,
and in great detail about that side of it,
but then, will really lackinsight into what his needs are,
(19:28):
and what his limitations are.
So all the way through thisprocess, it's been a real,
I guess, point of frictionfor him with his family
about what he is and isn't able to do.
- How frustrating.
- Oh, he's hugely frustrated, you know,
he still wants to live on his own.
(19:49):
He still wants to moveto Queensland, like you.
He wants to live in a flaton his own in Queensland,
he has wanted that right theway through this process,
even though he can'tcook or care for himself,
he can't now use a phone or a laptop.
He couldn't take moneyout of a cash machine,
and that's been a sort ofsteady decline, I suppose.
(20:10):
but this whole experience has meant
that I've had a more kindof intimate relationship
with Dad than what Iwould ever have expected,
because you sort of haveto get to know parts
of your parent, you know,
and their life in a way thatyou would never anticipate,
and even see themsobbing on a bed, crying,
(20:34):
or sort of talkingabout wanting their life
to be over, and things like that...
- Things you never reallyexpect to hear from the parents,
sort of that role reversal.
- Totally, but just also not even
the parent-child part ofthe relationship, just,
it's not really him tokind of be like that.
you know, he's alwaysbeen this force of nature.
(20:58):
Very determined, veryScottish, you know, that kind
of like hard Presbyterian work ethic,
and all that kind ofthing, kind of dower guy.
And yeah, so to see someone like that
in a really deeply vulnerable situation
is quite confronting.
- I can imagine. Just takeme back a little bit just to
(21:22):
when was he diagnosed,
and what were the signs thatsort of led to that diagnosis?
- It was a fairly gradualprocess, actually.
So, I come from a place called Jindabyne,
in the snowy mountains of New South Wales,
that's where I grew up,
and dad remained thereup until a few years ago.
(21:43):
Our house was out of town,
in a little hamlet called East Jindabyne,
and my parents have not beentogether for a long time.
So dad was living therefor many years on his own,
and it was obvious to me,it had been obvious to me
for some time that hewas not really himself,
that things were declining a bit.
(22:04):
There was no diagnosis.
But for someone that hadalways been so physical
and so active, and so disciplined,
it seemed like thatwas falling away a bit.
His clothes would kind of not fit,
or his trousers would befalling down, you know,
there'd be more bathroom incidents.
(22:25):
He was clearly, I guess, forgetful
or, you know, his long-termmemory would be brilliant,
but then there would bemore obvious, recent stuff
that was sort of not all fitting together.
The big thing that stood out to me was
that he was just increasinglyunable to maintain the home.
(22:46):
- And prior to that, washe always very organised,
very on the ball, you know?
- Yeah, like he was nevertechnological, so, you know...
- Very tidy and...- Yes
and very kind of just on point with stuff.
- Yeah.- But it wasn't like that.
I'd go down and the housewould sort of look like,
(23:06):
I used to describe it as being like,
it looked like the Unabomber lived there.
- Yeah.- So, I think he was coping
or adapting to whateverwas going on for him by
putting everything thathe needed out on benches,
rather than away in drawers.
So, all of the cutlery that he used
would be kept on the bench.
(23:27):
- So, visible.
- Yeah. Or he couldn't usethe window blinds properly,
- Yeah. Or he couldn't usethe window blinds properly,
so they'd have like post-itnotes clipped to them,
showing him where to raise them to.
- Like he had a backupplan for everything to try
and make everything simplified.
- Kind of, yeah.
And I actually watched astory on the 7:30 report
(23:49):
about an author in Englandthat was living with dementia,
and she was doing something very similar.
So, I guess I had some kind of inkling,
but there was no diagnosis.
Anyway, the GP fromJindabyne rang me and said,
"We think you probably need to come down,
and come to an appointment with him
(24:10):
so we can just talk aboutwhere things are at."
And Jindabyne's a smallcommunity, it's really tight knit.
Dad had been the pharmacythere for many, many years,
so he knows most people in town.
But basically, the substanceof this appointment
or meeting was, youneed to go to hospital,
but you need to be testedfor a whole bunch of things,
because, really, the community'sbeen supporting you a lot,
(24:35):
but it's kind of becoming too much.
And so, it turned out he was reliant
on people for lots of things,more so than we even knew.
People were helping himchange his bedsheets,
or helping him bathroom,
or, you know, it wasmore than just kind of
neighbourly, friendly help.
(24:55):
And so, when he was in hospital,
he was diagnosed with Parkinson's.
It was subsequent to thatthat he was then diagnosed
with Lewy body dementia,
which is not disconnectedfrom Parkinson's.
They're often describedas being on a spectrum,
and so, he's been livingwith that ever since.
(25:16):
- So, who goes with yourdad to his appointments now?
- I go to a lot of them.
My big sister sometimes takes him
to his skin specialist appointments.
Thankfully, we have a GP that visits him
in the aged care residentialsetting that he's in.
(25:37):
And you know, gradually,
he's going out to lessand less appointments,
because it's become toodifficult for him, actually.
- Can it be tricky nownegotiating who does what
with the siblings?
- Yeah, I mean, I thinkany family will have great
challenges dealing with a relative
that's living with dementia.
(25:57):
And I think it's, one ofthe things I've learnt
through this is just thevalue of communicating,
having open conversations really early on,
whether you have dementiain your life or not,
but for adult children ofparents to talk to them about
what they want, and what their wishes are,
what the arrangements are going to be,
(26:17):
and vice versa for theparents who are ageing
to have those conversations as well.
Even though some of thestuff might be confronting,
or difficult, or emotional, Ijust think it's so much better
to have those chats when you can,
and when there's not theearly on, yeah, totally.
- And do you tend to agreeall of you on the same thing?
How do you come to an agreement?
(26:42):
- We don't, really. Yeah.
So yeah, it's been really difficult,
and obviously, you wantto be respectful of others
and you know...
- It's tough, all of this istough on a family, isn't it?
- It absolutely is. You know,
people talk about dementia, rightly so,
(27:03):
and focus on the person thatis living with that condition,
but actually, I think when that happens,
the condition impactseveryone in that, you know...
- It does, yeah.
In that little ecosystem.
And the way I've approached it all along
is just to try and give him dignity.
(27:24):
Not that he's said this explicitly,
but my impression is
that he feels like the wholething's very undignified,
and he's an incrediblyproud man, always has been.
And I just, my sense of it is
that he feels humiliatedby what he's living with,
and the situation thathe's found himself in.
(27:46):
And so, I always just approach everything
with trying to give him as muchdignity around it as I can.
So make sure he's alwaysgot nice clothes to wear,
something that he would like.
You know, just trying to make sure that,
(28:07):
the doctors are good, that attention
is being paid to all the small details,
because it's very easy forsomeone in this situation
just to be kind of lostin the system, I think.
You know, people living with dementia,
they need love, and they need support,
but they need advocates as well.
They need people that will go in with them
(28:28):
to the appointments, or followup after the appointments,
or read the detail in theletters from the doctors,
or see the bit of medicationthat's missing, or you know,
just actually getting your head around
the really fine detail ofwhat someone's needs are,
and being able toadvocate on their behalf.
I never expected thatwould be part of this,
(28:51):
but I think it is.
Hold the Moment is a podcastfrom Dementia Australia.
(29:11):
You can find it in all podcast apps.
Don't forget, there aremore resources available
on the Dementia Australia website as well.
And help is at hand via thefree National Dementia Helpline.
You can call it 24-hours a day,
every day of the year on 1800 100 500.
- And we also have a bonusepisode of Tips for You
(29:32):
from the helpline, too.
You'll find it in your podcast app now.
So, if your family needshelp on navigating life
now you have a diagnosis,download it right now.
- Hold the Moment isproduced by DeadSet Studios
for Dementia Australia.
This episode was producedby Madeline Hawcroft,
sound design by Sean Holden.
(29:53):
The executive producers atGrace Pashley and Kelly Rearden.
The production manager is Anne Chesterman.
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Crime Junkie
Does hearing about a true crime case always leave you scouring the internet for the truth behind the story? Dive into your next mystery with Crime Junkie. Every Monday, join your host Ashley Flowers as she unravels all the details of infamous and underreported true crime cases with her best friend Brit Prawat. From cold cases to missing persons and heroes in our community who seek justice, Crime Junkie is your destination for theories and stories you won’t hear anywhere else. Whether you're a seasoned true crime enthusiast or new to the genre, you'll find yourself on the edge of your seat awaiting a new episode every Monday. If you can never get enough true crime... Congratulations, you’ve found your people. Follow to join a community of Crime Junkies! Crime Junkie is presented by audiochuck Media Company.