Hold on to connection: How partner, parent and family relationships can change

So much changes when someone you love is diagnosed with dementia and often the most difficult adjustment can be coming to terms with how it affects your relationship. 

You might still be parent-and-child, romantic partners, siblings, but you’ll also have to step into a new role entirely as a carer.  

For Col, this feels like ‘taking his turn’. His wife Shirley took on much of the caring work when they were raising kids together, and now Col and the kids are looking after her.  

For Sanna, who cared for her mother, the relationship shift was much more dramatic. After being diagnosed, Sanna’s mother didn’t recognise her at all and it looked, for a little while, like their connection might’ve disappeared altogether... 

Dementia changes things and it will change your relationship with the person you’re caring for – but you can take steps to ease the change for both of you.  

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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.   

Follow Dementia Australia on Facebook and Instagram or find support resources on our website. 

This episode was produced by Gia Moylan and Liam Riordan, with sound design by Ryan Pemberton. The executive producers are Gia Moylan and Kellie Riordan. Production manager is Ann Chesterman. 

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. 

Episode Transcript

(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, to learn and to teach.
Today, we joined tokeep up that tradition.
So with that in mind, we nowpay our respects to the
traditional owners, toElders past and present,

(00:20):
to those First Nationspeople joining us here today.
- We'd met in 1966, at a dance.
[ Soft piano music]
At the Hurstville Civic Centre.
Every Saturday nightthere was a dance there.
I was 21 and Shirley was 20.

(00:44):
I spotted Shirley in the barn dance.
I watched her and shewas knocking guys back.
[Background Chatter]
So I waited till the last dance.
Walked up, asked fordance, said "yes", "oh, okay."
So yeah, we had a dance and that was that.
And I asked her out.

(01:05):
[Soft Music]
- This is Cole.
He and Shirley have been together
for more than 50 years now.
And believe it or not, they'restill dancing together too.
[Soft Music]
[Soft Music]

(01:28):
Every Tuesday, Cole takes Shirley to
St. Luke's care, so they can sing
and dance with a dementia choir.
Shirley's lived with dementiafor more than eight years now.
And Cole's been her carersince her diagnosis.
- How are we all feeling today?Energised?
- Energised. Come on.

(01:49):
- So let's do "What a wonderful world"...
- Started two years ago.
We've been involved right from the start.
It started with 10 andnow there's about 40.
And it's just, it's fun.
It's the highlight ofa lot of people's week.
I try not to miss it.
Because I think we both get a lot from it.
[Piano Music]

(02:11):
- Here we go. [Piano Music]
[Choir Singing]
Have the advantage too, of being able
to dance, while we are here.
Robert puts us
through our dance routineevery week, and picks a song
and we dance to it.
It just gives you anuplift, for both of us.
I mean I can just watch Shirley.

(02:34):
When we dance, Shirleydoesn't have dementia.
And I can feel that.It's the look on her face.
[Choir Singing]
[Choir Singing]
[Choir Singing]
- [Singing] Oh yeah.

(02:56):
[Whistling & Clapping]
[Upbeat Music]
[Upbeat Music]
- Cole's found that a greatway to hold onto a special part
of his relationship with Shirley,
as her dementia develops.
One of the hardest thingsabout being a carer, can be

(03:18):
watching the person you love,change before your eyes.
Especially if that changes thenature of your relationship.
Hey there, I'm Hamish Macdonald.
And I was taking care of mydad when he was diagnosed
with Lewy body dementia and Parkinson's.
- And I'm Jim Rogers.

(03:38):
I was diagnosed with youngeronset Alzheimer's in 2021.
This is Hold the Moment,a podcast by people living
with dementia and their families.
- So Jim, I've met yourhusband Tyler a few times now.
Great guy. But I'm kind of curious.
How's your relationshipchanged since the diagnosis?

(03:59):
- It does change a little bit, Hamish.
Because, you start to notwithdraw a little bit,
but you rely on the other person.
I also think insocial settings you, start to,
just be aware that, youknow, you have got this
to live with, and you're just mindful.
Tyler will sometimes, in a social setting,

(04:21):
where there's a lot ofconversations, we'll try
to steer the conversation.
For example, if we went out with you
and your husband, we would not try
to have two individual conversations.
Because it's like two radiostations playing at once.
So he would sort of try
and redirect theconversation into, you know,
everybody listening to one person at once.

(04:42):
- And what about the dynamicbetween the pair of you?
Because I know, beforethe diagnosis, you were
very much the driver...(-Yeah)
...of a lot of decisions.
You are very strong on thebusiness side of things.
The investments, the house, the family.
That's had to change, hasn't it?
- Yeah, I think I'mstill the big ideas man.
I've always got a lot ofthings that I want to do

(05:02):
and I've always got these,you know, big dreams still.
But Ty is the one that is,he, he makes it happen.
And, and from a perspectiveof putting it down on paper
or organising it
or the financialperspective, he's the person
that would be in charge of all of that.
Because I've sort oflost that ability now.

(05:22):
- Because you don't do any of the
finances or anything like that anymore?
- No, nothing. And I'm pretty
useless with that sort of stuff.
I could do it, but the less you do it,
the less you sort of bother to do it.
I'm very lucky that he's good at it.
And he's in finance anyway,he's a mortgage broker.
So, that works well for us.
- And that change, does thatcause emotional tension?

(05:43):
- I don't think that is really one
of the most significant things.
I think there is a feelingof independence being lost
that can cause a little tension.
I feel as though sometimesI'm waiting around
for him not to be busy.
So we could go and do stuff,
because I no longer work and I'm retired.
But I don't think it's amassive elephant in the room.

(06:05):
It is just, you know, you have to adjust
and you just got to bepositive and get on with it.
- And of course Jim, we know
that no dementia journeyis the same as any other.
In fact, relationships canchange incredibly quickly when
someone's living with dementia.
Shirley's personalitystarted to change right
after her diagnosis.

(06:26):
- Absolutely. And when they first met,
Cole remembers one thingin particular about her.
- Very confident. She wasa, a very confident woman.
In fact, probably that's one of the things
that attracted me to her.
She was very forthright. Sheknew what she wanted. Quiet.
She was a very quiet person.
In fact, it's funny, that'ssomething I've noticed.

(06:48):
Her personality changehas being incredible.
She was very quiet. But once we had kids,
her personality changed enormously.
You know, like school and that,meeting with other parents
and families and that, shewas far more outspoken.
And once dementia came, it reverted back.
The dementia groups I've beeninvolved with too, that a lot

(07:10):
of people do get,
because they're behind the conversation,
so they're not picking up, so,
they're get quieter and quieterand quieter, you know, so.
- What was it like parenting with Shirley?
- She did all the caring. She was great.
She was a really good carer.
I put herself in thetraditional role of 'my vintage'.
You know, I'm about to turn 80 next year.

(07:31):
- You look amazing for 80.
- Yeah, (laughter) but I...
In that vintage, you did a nine
to five job and that was it.
I used to leave home about 7.30.
I'd get home about seven at night.
So those five days, were allShirley, you know, she was...
- She was the core of the home.
She was, she was running everything.
- Yeah, she was runningthe whole show, you know.

(07:51):
And I say that now, that with dementia,
and I've said it to my kids too, like,
it's now our turn to be carers.
- How has Shirley changed sinceyou started caring for her?
- Shirley didn't sort of,

(08:12):
show enough symptoms at first, you know.
And then as time, Imean eight years now it's,
I'm at the end of the, theline in that sense, (- Mmh)
yeah, there's not much left.But over that period of time.
And it's been that, and it'sthe levels, oh, you'll get,
you'll get your levels ofdrops and then you adjust.
You know as a carer,that's what I find that,

(08:34):
I've got to adjust.
No one can tell me what to do.
It's, it is a, it becomes avery personal thing where you,
you know how to handle things, you know.
And you just pick up on that. Yeah.
And I mean, Shirley'snot the girl I married.
Nothing is left of that, you know.

(08:55):
That's, that's all gone.
- When did it start to feel like you were
becoming her carer then?
That you were startingto take more control over
the day to day running it?
- Yeah, probably, I thinka few years, I'd say.
Shirley wasstill, you know, capable

(09:16):
of doing things... that first.
Yeah. Six years of it, it was progressing.
But, you know, even then, signage,
especially in the earlydays, was very important.
Because Shirley didn'tknow where things went.
Being a graphic designer,I've got it everywhere.
You know, the socks and shoesand da, da, da da, da.
And everything's labelled.But now it means nothing.

(09:40):
- Can you just talk to me, Cole, about
how you now think about yourrelationship with Shirley?
Given that it's, as you say,
you've moved into the carer role.
And I think you weredescribing it earlier as,
you know, there's, there's not a lot of,
the person you first met, left.

(10:00):
How do you hold that in your own mind
and maybe in your own heart?
- Yeah, well it's, it is memories.
Memories are important, I think.
I sum it up by saying that
it was a shared love, back then.
It's now dependent love. Itreally is. It's, it's all me.
Just depending on me, you know?
There's not a lot she can share anymore.

(10:22):
Because she can't, she, there'sno conversation left anymore.
And that's difficult,you know, that is hard.
I remember when she first gotdiagnosed, I thought, well,
I'm not going to sit on my bumand do nothing about this.
It, it was a challengein a sense, you know?
I mean, I've always beeninvolved with things.
Well, this is my new thingI can get involved with, yeah.

(10:43):
And if I can keepShirley happy for the moment.
I mean, the whole life now, is moments.
Do you feel lonely?
- Yes. Yeah. You do. Yeah.
It is, it, lonelinessis a lot to do with it.
I, I, Shirley does twohalf days, daycare now.

(11:04):
And when I first got theoffer to do it, I knocked.
I basically, "oh, I don't need it."
And because I felt I had tobe doing something. (-Yeah)
And it was that, "oh, I'vegot to, if, if I've got
that four hours, I've got todo this, this and this."
And my daughter's who's adoctor said,
"Dad, it's your mind.
It's, it's giving you free mind space."
"You know, Shirley's safe,you know, she's happy there."

(11:26):
- So important. It's likea parent with a young child.
- It is. - You know, theyjust need a break just
to be yourself for a moment.
- Yeah, exactly.
- And not worry about somebody.
- Yeah. Yeah. But when...
But it's funny yesterday, she was in care,
and I was walking by myself
and I thought, "oh, this iswhat it's going to be like."
You know? It's, it's, it's going, yeah.
It's sort of, it's, but you do get lonely

(11:47):
and, and you're grieving.
You are already grieving. Yeah.
[Soft Music]
[Soft Music]
- What would be your takeaway for people
in your position now?
What, what would you advisethem to do, you know,
at this nearest stage

(12:08):
to perhaps, care, full-time?
- I think being involvedwith what they like.
You know, if you can pickwhat they like doing,
you know, keep that going.
I mean, we walk a lot.
Shirley's still swimming.
But I wouldn't trust hernow without the 'noodle'.
And a lot of times shedoesn't want to get in.
It's like, and theylose so much confidence.

(12:31):
That's, I found that, that wasanother thing that, you know,
you know, years ago she, Icould just put Shirley in the
water and off we go.
But now it's, I've got to walkher down the steps, you know.
Have the noodle in position
and then "I'll go, I'll go, I'll go."
You know, just, it's a sortof little push, get in there.
You know, once she'sin she's fine. (-Yeah)
But, and I feelthat from an exercise point

(12:53):
of view and all that, youknow, she's got a crooked knee,
so she can't walk as much as she used to.
She's done at least 25 'Sea to Surfs'.
You know, she used to watch,bring the kids to watch me
and then she started doing it
with me and all that sort of thing.
- Pretty impressive.- And yeah, so that I keep her try
and just keep the involvement going.
It'd be so much easier justto sit back and let it happen.

(13:14):
I've had a couple ofspecialists say to me that,
"Shirley wouldn't be where she
is now, without you being there to,
to, to keep the things going."(-Yeah.)
- It sounds like a big partof what's helping Shirley is
that she's still dancing.
- We've always jived.
And I mean, that's a meetingat a dance, you know?
So, it's always been a passion?

(13:35):
- Yeah, and when Shirley and I jive,
- She got it.
- There is no dementia.
- Interesting.
There really is no... shewill move to the music.
Not as good as she used to.
And I don't as good as I used to.
But, she moves to it, you know?
And we still do it. I mean,we don't, someone say, "oh, go
and go and do dance class"but that won't work.
That's just not, but wedo choir as well now.

(13:57):
And that's brilliant. I just love choir.
And Shirley loves it, you know.
And you put words in frontof her, you start the music
of our vintage, off we go.
And Robert, who brings akeyboard, he's fabulous.
And he, every week heplays a jive song for us.
"C'mon Shirley, up you get."
- Your turn.
- And we jive every week.

(14:21):
- What advice do you give to other people
that find themselves in asituation like yours?
Be patient. Very patient and be positive.
My two 'Ps'.
I mean, that's,you've got to be stay positive.
It's so easy to slip intoit and say, "oh, this is..."
and I think if, with care it's, it's,
it is the easy way out in a sense.

(14:41):
I could see why a lot ofcouples who haven't got
a strong relationship would,would split up, for sure.
Because you know, it'dbe just so much easier.
"Oh, well you go to care,I'll go my way." You know?
And I feel that, you know, that's, yeah.
Because we had this strong relationship,
I'm more than willing to give back.

(15:07):
- Cole, thank you verymuch for talking to us
and obviously well doneon the amazing support
and care that you're given to Shirley.
Yeah. Oh, it's been a pleasure.
- Wow. There's a lot there.
I can only imagine whatit's like for a marriage
to change the way thatCole's did, so rapidly.

(15:27):
But, of course, not allcarer relationships are
involving married couples.For many people, including me.
The relationship that changes, is one
between a parent and a child.
- Yeah. I'm seeing that happenin my life a little bit.
My own kids, who are adults now.
They're alwaystrying to help me out
with little things here and there.

(15:47):
They're always checkingon how I'm feeling.
And it's a bit strange to be honest,
because, that used to be my job to them.
- Yeah. Still is a little bit.
That change can obviously be pretty
destabilising for everyone.
But it's further complicated
by different cultural needs and norms.

(16:08):
[Arabic dialogue]
This is Sana, a Muslimwoman who managed the care
for her mother, wholived with Alzheimer's.
The thing Sana most remembersabout her mum, is her strength.
- Amazing mum. Recentlypassed away three months ago.
Almost three months ago.

(16:30):
She'll always be rememberedas a very strong woman.
She went through a lot,you know, in her life.
- What is it about herchildhood, her beginnings,
that you think made herso tough and so resilient?
Where did she start life?
What, what? Just paint a picture of it.
- Her life was quite hard,
because it was a wartime zone in Lebanon.

(16:52):
And the thing is that my dad had to come
to Australia in order for us to live.
So, he'll send the money over so
that we can live comfortably.
Because there was no work, nothing.
And so, she had to take care offour girls and a little boy.
She had to be quitestrong because of the war.
She had to protect us,because it was very wild.

(17:13):
I mean, I can remember even,we're at a, three years old,
four years old, peopletrying to get into our home.
- This is what, theLebanese civil war is it?
- Yeah. Yeah. And it wasquite, you know, scary.
And the bombs, we can hear them outside.
Her main goal was to protect us.
Like I can, you could feelthat with my mum's protection.

(17:34):
And especially girls, you knowwhat I mean, in our culture,
like, protecting the girls islike the most important thing.
- So how did your mum do that?
When you were a kid
and you were growing upduring the Lebanese civil war,
what did your mum do to protect you?
- I remember waking up andshe would always be awake.
Do you know what I mean? Like, she would
always be on the lookout.
- On guard.- Yeah. And so that's that kind

(17:57):
of protective thing she had,that I can remember that always.
- I guess there's a perception
in the West (- Yeah)of Muslin women being,
maybe suppressed.
Not very strong, but I'vespent a lot of time living
and working in the Middle East, and I
I have a slightlydifferent... (- Of course)
picture...
- Every stereotype of us,

(18:17):
it's just completely different. (Laughing)
- So, paint us a pictureof how tough your mum was.
- She was strict.
But like I said to you,it, it's to protect us.
You know, be strong-minded,make sure no one forces you
to do anything.
Right. So those kind ofvalues was in our upbringing.

(18:39):
You know, we're tough women.
Like, we are tough, but we're also gentle.
That's the thing that she taught us.
So, like, we can get what we want.
But in a respectable way.
Unfortunately, she hada hard time in Lebanon.
But she came to Australia
and also had a hard time.You know, the discrimination
that we went through asa childhood, to this day,

(19:01):
we're still having it.
You know what I mean? So, thatmade her even more stronger
and more stricter with us.
So, I don't remember our mumbeing affectionate as in,
you know, 'lovey-dovey',you know, and 'hugging'
and you know, she wasn't like that.
- So tell me about whathappened once your mum was
diagnosed with dementia.
Whose job was it to look after your mum?

(19:25):
- Well, at that time,before she had the dementia
she was living with my brother.
As soon as we diag- the diagnosisis set. Family meeting.
All right, you got her Monday.
You got her Tuesday, you got her Thur...
You know, like we just spreadthe job of who's taking care of...
- It's very internalised,isn't it? (- Yes)
It's like, it becomes just your problem.
- That's right.
- You tend to push awayany external support.

(19:47):
- We didn't even know this external...
We didn't some, I mean,
I'm talking to the community,they didn't even know
that we can access these supports.
And that's shocking to me.
- So, so how did it work?
Your mum was going from onefamily member to the next?
- Yes. So we were eight obviously.
So, she would go fromone house to another.
So can you imagine
- The trauma of somebody with Dementia?
- Where's the bathroom? But,I was, it's on the left.

(20:09):
So can you imagine how (- No)dementia accelerated?
- Even for me now, it's,it's just to be moving
around too much, its alittle bit overwhelming.
So for her, to be in a different bathroom,
a different bedroom.(- Exactly.)
Would've been very draining.
- And she didn't haveher own room, obviously.
If certain houses had the facility
for her own room, but others, no.
She had to share with grandkids.

(20:31):
- Can you describe whatimpact that had on her?
All that moving from onefamily member to the next.
- Oh, accelerated her dementia.
She was going crazy, literally.
Because, she'll,
suddenly go, loud and violent.
You know what I mean?We wouldn't know like.
"What did we do? What did we do?"
- Something triggered her.- Something triggered her.
And obviously like, whenwe look at, I mean.

(20:53):
My house has got somebric-a-brac everywhere.
And it's got the cultural different kind
of patterns everywhere.
So obviously she was notin the right environment.
- What's the issue with the patterns
and the different shapes?
- Already her brain is in turmoil. Right?
She's trying to, thepattern of the, you know,
the Turkish carpet.
Right. Struggling to try

(21:13):
to put the patterns in,
in the right place. You know what I mean?
- And that would've beenmentally difficult to her.
- Mentally difficult to her.But we weren't seeing that.
We were seeing her gettingangrier and getting violent.
- Because you don'tunderstand what's behind...
- Because we didn't know what's(- Frustration.)
...behind of her, yeah.
Until, I got that training and,
and I said, "Ah, we should get rid of the,
the renter from her home."

(21:35):
"Clear out the wholehouse, no furniture except,
simple, like a bed" you know,in her room.
And, a simple lounge. That's it.
You know, very simplestuff and put her in.
The day my mum,my mum walked into her home.
It was like, she came back, likeliterally, my mum came back.
- Sort of a sigh of relief.(- Yeah)

(21:56):
- And then she worked, andshe goes, "where's my birds?"
Like she knew, because she'sgot Rosella birds all our life.
We were, she was racing them basically.
She was in the, they in the wild birds.
- What are Rosella birds?
- Rosella's. Wild birds wouldcome and feed. (- You know)
- You know, you know thebirds on the biscuit tins?
- Yeah. (- Yeah?) The 'Arnotts'- That's a Rosella.
- Okay. (laughing)- Yeah

(22:16):
- That's my new learn for the day.
- She was like,
and they came like, I'm not kidding you,
it was the beautiful sight.
And she said they justcame and sat on her hands.
- Like they knew.
- Yeah, they knew.(- She's back home)
- Well, I'm not kidding.It was just so beautiful.
And I, and she goes andshe goes, this is my house.
And she knew where thebathroom is straight away.
And this is like, a couple ofyears she hasn't been there.

(22:37):
- So what had happenedto your relationship
with your mum during this time?
Because I know you aremarried to a Palestinian.
- Yes. Yes.
- And the Arabic accents area little bit different. (- Yes)
The Lebanese accent has(- Yes) is pretty distinct.
You use some different words.
- Yes, yes.
- Is it "Shoufi mafi?"
- Yeah. Like even the word "'ah",(- Uh huh)
- You know.
In Lebanese will say"ēh" - Yeah.

(22:57):
- Instead of, you know,like, "ēh". Right. Yeah.
You know, I'll say, "'ah", inPalestinians would say, "'ah",
- So what did this do for your mum?
- She literally deletedme as her daughter.
You know, like every time itwas my turn to come to my mum,
she goes, you're notmy daughter, you know,
and you're, who are you?
And go away, you know?
And it was really hard. That's like...

(23:19):
- That would've beenheartbreaking for you.
- Oh, it was.
Because you see, I can, my,we share videos constantly
of our mum, and I can see how she talks
to my sisters and brothers.
- Warm. - Yeah, I look,sometimes there was not warm.
She's still a tough woman. Iwon't go into detail. (- Yeah).
But, there was still that love there.
There was still that affection.

(23:40):
You know, she wouldallow them to hug them.
You know? I didn't get that.
- You weren't allowed to hug your mum?
- No, she wouldn't let me hug her.
She wouldn't let me kiss her.
- Is that because she feltyou were a stranger? (- Yes).
She just wouldn't accept thatyou were part of the family (- Yes)
Because of that change in dialect.
- In the dialect.- So you were trying
to do things like, changeher clothes? (- Yes)
Feed your mum. (- Yes)
- With a fight all the time.

(24:01):
- Yes. So how did she react?
- I come out with bruisesevery time I come from my mum.
Because she didn't, notlike me to touch her.
- It must be very confrontingwhen you get to that stage
where, you have to be in control and
start caring to the degreewhere you're bathing, feeding.
- That's right.- Especially if there's resistance.
That must be very hard to go through.

(24:22):
- Very, very hard.
It was very depressing to see that.
You see, because my, my intentis, "what can I do for my mum?"
Because this is the time wherewe can get all these rewards
for being good to our parents.
This is payback. You know what I mean?
Like, we feel that, we say
it's, this is time to take care
of her because she took care of us.
And that concept
of our culture saying it's your

(24:43):
responsibility when they grow up, right.
But Islamically, you know.
The first word in our Koranis "Iqra" which means "read."
Right. which means "knowledge."
So, we're supposed to educateourselves with the condition
that we are dealing with.
I mean, I don't knowanything about dementia.
- Now this, it is like the mystery
disease that's (-Yes)behind the curtain (-Yes).

(25:05):
This is why this podcastis so great because
- Exactly.
- It really does give alot of people insight.
- So when someone says "Cancer."
Everyone knows, you know? (- Yep)
They'll go and look up,
"Oh, which cancer does my mum have?"
And they'll get an idea.
- It's really well spoken...- But as soon as dementia,
they wont seek it, they'll say.
"Oh, yeah, its just part of growing old."
- It's so stigmatized (- Yeah) still, isn't it?
- It's considered normal.

(25:27):
- So, tell me what you did about that?
Because you've mentionedgoing to a workshop.
- Yeah.
- What was it? (- Yeah)
And what did you learn and what
difference did that make?
- That was like, the mostamazing experience I've had.
And that was three years before she died.
So, three years previously,was those three years
where I didn't have my mum.
Right. She didn't acknowledge me.

(25:48):
I was like taking care of herfrom a distant kind of, you know.
She'll have hermoments, don't get me wrong.
But it was not enough,you know what I mean?
So, I went to, I found aworkshop in Lakemba.
So, it's all supposed to befor the Muslim community.
And I was the only one that turned up.
- Right?- Yep.
- This was a Dementia Australia workshop.

(26:08):
Dementia Australia FriendsUnited, with Dr. Diana.
So, I had her all to myself.
So, I said to her, "Ah, listen, Diana,"
"Look, I've got this issue with my mum."
"I was hoping you can give me some tips."
She goes, "Look, think ofa way that your mum
remembers you by, when you were little".
Because every person inyour family has said,

(26:29):
"greet her in a differentway," for the, her to
recognize that person,on a constant level.
- So what did you do?- So, (laughing)
I, I loved dancing.
So, when I was little,she'd always put, you know,
music was always there inthe background, in there.
So, she'll put the musicon and she'll say "dance."

(26:51):
So I'll dance...
- This is when you were little.
- When I was little.
- How old?- When I was little.
- How old would you have been?
- Ah, I was dancing sinceI was one. (laughter)
So, I love dancing.
And she, I thought that'sthe only connection
that she knows that about me.
Out of all of, you know, my family, I,
I love dancing, and she knows that.
So, I said, "okay, we'll try it."
So I put the music, I chose an older song

(27:12):
that she would remember in those times.
- Okay.- And I walked in, dancing to her
and she, she looked up straightaway.
And she said, "Sana?"(-Aww)
Yeah. It was like, "she said my name!"
- Wow, so they, 'ch, ch, ch, ch,'
had more information out.
- Yeah, it like, "click,click, click", yeah.
And she said, "Sana?" and sheactually got emotional.

(27:35):
- That's amazing.
She actually said, "I love you."
"Habibi! Darling!"
And she's called me over...
- As though you've beensomewhere for a while.
- Yes. It's as if that,"where have you been?"
"I have seen you in a while."
- What a massive breakthrough.
- Yeah, I know.
And she hugged me and shekissed me and she said,
"Alhamdulillah".
And you know, the wordsof Islamic prayer is

(27:57):
so important to us.
And I never had that for a long time.
- What did having
or reestablishing that connection
with your mum mean, for you?
- I actually got my mum back.
You know, I was ableto, take care of her
and her knowing me, youknow, not a stranger.
Like, oh, someone's coming in.

(28:18):
It reconnected me with my mum.
You know, like I'm now a daughteragain. I'm not a stranger.
Do you know what I mean?I'm actually someone
that's important to her now.
And every time, she'lllose it, and forget me.
Straight away, the music's on.
Straight away, I'll dance and "Oh Sana!"

(28:44):
- There's such a feeling of reward
when it is a loved one.(- Yeah)
And when that barrier's there,
and you can't get to that loved one
because they don't know it's you.
- Exactly.
- It changes the dynamic(- Absolutely)
but to actually get her back.
- Yeah.- And that's why I think
so many people don't realise going
to somewhere like Dementia Australia
to get educated about these tips

(29:04):
and things you can instil in the way
that you care.
- That's right.- Makes so much difference.
- I know, a small tip.- You are a living example of that.
- Yeah. It was just asmall tip that she gave me,
worked wonders.And especially even the colours.
So, every time I went to her house,
I would only be in plain colours.
So she'll, I wouldn't have those days
where she'll scream and ran.

(29:25):
You know? Like she'll get loud
and talking, talking, talking, a hundred.
No, I'd have avery calm time with my mum.
I knew what was happening.
So I know made surethat there's no clothes
that was patterned, anythingthat's in the house.
We actually cleared everything up
because I told my sisters and that.
So, we did everything theyrecommended for her home to be.
You know, clutter free and all that.

(29:51):
- You've talked aboutthis a little bit today,
but when I first met you, whenwe launched the first season
of Hold the Moment, you cameand chatted to me. (- Yeah)
- And you said, "look,it's really important
that you explore what this means
for different cultures."
- Yeah.- Different backgrounds.
- That's right.- And they say that no one dementia story
or journey is the same as any other.

(30:12):
- Yeah, yeah.
- But why is it so importantthat we think about,
and talk about the different ways
that different culturesare maybe coming at a
challenge like this?
- Because, differentcultures, even like Chinese
and the Vietnamese and, and the Greeks.
Like, they're adamant atnot getting outside help.
- Why is that resistance there?

(30:33):
- I still bring it backto, they grew up saying,
"We took care of you when you were little.
It's now your time
to take care of us whenyou are, we're old."
You know what I mean? I think that is very
strong to the culture.
In all of those cultures.
When we were raising you, wedidn't go and get any help.
But, and then hang on aminute, they did have help.

(30:54):
You know, they had the aunties,they had the grandmothers,
we had that social interaction there.
We had those...
- Very strong network.
- Yeah, we had a lot of family and,
and that is part of the support.
- Sana, "Shukran Jazilan."- Thank you,"Ya'tik al-'afiya"
- Thank you so much, you're such a
pleasure to listen to.

(31:14):
- Thank you.
- Jim in Arabic. "Shukran".
- "Shukran". - "Shukran".
[Laughter]
Thank you somuch. Appreciate it.
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(31:37):
- Thanks to both, Sana and Cole,
for sharing their stories with us.
- If you want to know more about how
to manage your changingrelationship as a carer,
we've got a bonus episodeof the podcast for you.
- That's right. Check your podcast feed
for our helpline episodeabout changing relationships.
You'll hear more from Kristen from the
Dementia Australia helpline.
- Kristen will give you some handy tips,

(31:58):
and if you want more info,
you can call the helpline yourself on
1800 100 500.
[Music]
Hold The Moment is a podcastfrom Dementia Australia
produced by Deadset Studios.
You can find more episodes
and resources on DementiaAustralia's website,

(32:19):
dementia.org.au.
The show is hosted by me, Jim Rogers.
- And by me, Hamish Macdonald.
The executive producers areKellie Riordan and Gia Moylan.
The Producers are Madeleine Hawcroft
and Liam Riordan.
Production Manager is Ann Chesterman.
Sound Design by Ryan Pemberton.
A special to the wholeteam at Dementia Australia

(32:41):
and to everyone who sharedtheir stories on this podcast.
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