June 16, 2025 • 28 mins
Caring for someone living with dementia requires you to learn so much so quickly. From navigating a complex healthcare system, to managing family dynamics, to balancing caring duties with paid work – you’ll have to become an expert in a lot of areas very fast.
But what do you do with all that knowledge after the person you cared for passes away?
Miriam’s mum lived with dementia and, in her community in the Northern Territory, the condition wasn’t well understood and rarely talked about. But Miriam’s first-hand experience as a carer, as well as a Family and Community Coordinator for Dementia Australia, made her the go-to person on the subject.
Miriam shares her story and explains why she’s so passionate about passing wisdom on to her community and the next generation of carers.
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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.
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Transcript
Episode Transcript
Available transcripts are automatically generated. Complete accuracy is not guaranteed.
(00:00):
- Hi, I'm Miriam Cleary.
I'd like to take a momentto acknowledge Aboriginal
and Torres Strait Islanders.
The traditional custodians of this land.
I pay my respect toElders past and present.
This land has been home tostorytelling, knowledge sharing,
and culture for thousands ofyears, and always will be.
It is an absolute honour andprivilege to be here today.
(00:22):
And I do so with gratitude and respect.
I hope you enjoy my story.
[Music]
Mum tried her hardest tokeep the family together.
She's part of the stolen generations.
[Music]
She was taken away when she was four.
(00:44):
From a place called, Kalkarindji.
Which is in Wave Hillin the Northern Territory.
And, she was sent with others
to a Methodist Mission in Croker Island,
which is an island just out of Darwin.
[Music]
- This is Miriam.
(01:05):
Miriam cared for her mother,who lived with dementia.
- I'm an Aboriginal womanfrom Northern Territory.
My mother's side isGurindji, from Wave Hill.
And my father's is East Arrerntefrom Alice Springs.
- Miriam, who you just heard,works for Dementia Australia.
Up in the Top-End.
(01:26):
She's a family and community coordinator.
So she's sharing knowledgefrom both her personal caring
experience and her professional expertise.
[Music]
[Music]
- Hey, I'm Jim Rogers.
And I'm living withyounger onset Alzheimer's.
(01:46):
- And I'm Hamish McDonald.
I cared for my dad who was living
with Lewy body dementia and Parkinson's.
- And this is Hold the Moment.
A podcast made by people living
with dementia and their families.
Miriam's role as a careris very complicated.
- She's got a great passionfor sharing knowledge.
(02:06):
And that came from her mum.
- Education was important.
And particularly with our background
being Aboriginal people.
Statistics show thatAboriginal people have a less
opportunity for education, housing.
All those sorts of things.
I could, the list goes on.
So, mum did all that she couldto provide all those things
(02:28):
for us, and encouraged us.
- A lot of people who were part
of the stolen generations,had lifelong difficulty
with authorities and institutionsand even professions.
What was your mum'srelationship like with doctors
and their health system?
Because obviously, with adementia diagnosis,
she would've had to interact
(02:49):
a huge amount with that.
What was the dynamic?
- Mm huh. Very interesting one.
When we noticed that mum wasshowing signs of memory loss,
and they were quite obvious
that she was having a lot of difficulties.
There was one incidentwhere she came out home.
(03:09):
We lived out at DarwinRiver, which is a rural area
of Darwin.
And, mum came to visitus one day with my niece.
We had a wonderful day, andthen she got in the car and,
and she said, "Hey Mim, when I get
to the main highway, which way do I turn?"
I went, "Oh, okay."
(03:33):
The very next day, I went around, and
I took the day off from work.
I worked with stolengenerations at the time.
I went around to see mum.
I said, "Hey mum, are you due
for your general checkupsoon with the doctor?"
And she said, "Ah, yes, I think I am."
I said, "Hey, how about Igive your doctor a call,
(03:55):
and we can go around and get that done?"
And she said, "Yeah, allright. That's no worries."
I said, "Do you mind if I ringup and book that appointment?"
And she said, "Yeah, of course."
So when I rang, mum alreadyhad a very good relationship
with her doctor, her GP.
And, it was a lady.
And she was around mum's age.
(04:16):
So, I think that had asignificant difference for mum.
For being able to, you know,talk to her about things.
And they had a goodrapport with each other.
I know, now, I was prettyblessed with that situation,
getting mum to the doctor
and for them to do those,just those cognitive tests.
(04:37):
But once that happened,they referred mum over
to the specialist, overto the memory service.
Then that became a challenge.
Everywhere else was a challenge.
Because they were newpeople, she didn't know them.
Even though it was inearlier stages of dementia,
she still didn't trust.
There was no trust there.
(04:57):
For hospital staff,
anyone working in that, in that area.
So she insisted that I bewith her and/or my brother
or my sister or my husband.
She just said, "Mim, youhave to be there for me."
And that went all the wayuntil her very last breath.
(05:17):
I had to be there for her.
Which was, very challenging for me.
Confronting.
But, it was obvious that I wasthe one that had to do that.
And, looking back now, Iwouldn't have it any other way.
- So how did the wider family respond
(05:39):
to your mum living with dementia?
What was the dynamic?
- Augh, It was...
- You're shaking your head at me.
Like, why are we going here?
- Oh, it's a very tryingtime. (-Yeah.) Extremely.
And, because people
react differently to different situations.
(06:01):
Some are fearful, some want to know more
and do research.
Others just don't want tohave anything to do with it.
And I think it's important to note that...
Sometimes you can struggle with
that if you are the primary carer.
And, until you relax yourself
(06:25):
and take a moment to understand
that people do react differently.
And they have different capabilitiesin situations like that.
And they have different skills.
And their emotions are different too.
- It can be quite hard to accept that.
- Absolutely. It's like if you witness,
you're a first respondent, andyou've seen a car accident.
(06:47):
Not everyone, there'sfive people in the car.
Not everyone's going torun to the scene to help.
Some people may freeze, somepeople might get on the phone,
and, and call emergency services.
- Everyone's different.- Yes, everyone's different.
And, I felt if I had thatapproach to things,
and I know that, one of the family members
(07:08):
might be really good at doing
the budgeting side for mum.
Another person might be good at, you know,
enjoying walks with mum.
Someone might beinterested in helping out
with the medications, allthose sorts of things.
We all have a role to play.
So that goes back to,yes, I'm the former carer.
But, it takes more than just me to look
after our loved one, our mum.
(07:30):
- How did the kids cope?
Because there's grandkidsas well in the scene.
- My children lived athome, the last three.
And, it was really difficult for them.
At first, "Oh, great, Nana's coming to
live with us", you know.
And because, mum interacted
with them in a differentway, in the early stages
(07:51):
and prior to havingher dementia diagnosis.
As mum's dementia progressed,it became harder for everyone.
Mum became a, a bitaggressive, well, she did.
She was aggressive and incidentshappened along the way.
- Can you tell me aboutwhat happened in the pool?
(08:12):
- From the front of the houseis a veranda that opens out
and, and then into the pool.
And the children were playing.
And, Nan decided that it wastime for them to get out.
And they decided, "No,it's not time, Nana."
"Nana we're not ready to get out."
And yeah, my mum decidedto get a few heavy objects
(08:34):
and throw it at the children. (Chuckling)
[Splash]
And they were fearful of that, so...
- Sounds like a verygood tactic. (Laughter)
- What were they, what were they saying?
- Oh, they were just saying,"Hey Nana, what are you doing?"
"It's okay, it's okay."
And they were trying to calm her down.
It didn't work.
And then, eventually myself and my husband
(08:58):
came out, and calmed mum down.
Mum and I went inside thehouse, distracted her.
Was distraction, was avery good thing. (-Yes.)
- And you use that a lot as a tool.
[Music]
But that night, the children reacted.
They, they locked their doors.
Because they were concernedthat Nan would come in.
(09:20):
And knowing that mum wasjust the most beautiful,
amazing person, but herpersonality was changing
and changing dramatically.
So, I sat with my husband
and I said, "Look, whatare we going to do here?"
And there were otherincidents of course, too.
And many, many more.
But I said, "What arewe going to do here?"
(09:41):
So, we decided to ringDementia Australia, actually.
And they were very supportiveand had some hints and tips
and all those sorts of thingsthat helped us along the way.
- They, they had a PDFon grandmothers throwing
things into the pool. (Laughter)
- No, had calming situations.
- They usually got a PDFon everything (Laughing)
(10:02):
We must tell them.
- Yes. Oh, that was anincident, absolutely.
But, they were very supportive.
But what helped us
with mum staying an, anadditional eight months is...
There's a wonderful trainerat Dementia Australia
and he was able to have just
(10:23):
a very short time with thechildren, a few hours.
And had 'EDIE', whichis our training tool.
And, and it simulates what it's like
to have a person having dementia, and...
- How old were thechildren at this, this age?
- I'd say the youngest would've been about
four or five.
(10:45):
- Wow, that would've beenfascinating for them to see.
- Yes. And it was greatthat, that information came
to them when, when it was needed. (-Yeah.)
- It helped them, you know, we got home
and mum was, like I said,she was able to stay
for about another eight months
before she went into residential care.
And of course I would always have
that support from Dementia Australia.
(11:06):
But I also had that supportfrom the memory service.
And that helped, from myfamily and from the community.
But navigating that system is ridiculous.
- Very hard.
[Music]
- There was a transition toresidential care for your mum.
What was that like?
(11:28):
- I said, we were goingto visit someone.
Ahh...and go and asksomeone about, you know,
if there's a room there.
Because it was respite, and would you like
to have, just a small holiday.
And I'll come and visit you.
And she said, "Oh, I don'treally want a holiday.
(11:48):
I want to stay with you."
And I said, "Well, youknow, you might enjoy it."
"Let's just go and have a look."
So we went through the front door.
And as we're coming up thehall, to start thinking,
"Nah, I'm not going in this place."
Because it was very clinical, you know.
It just doesn't look like a...
- Your home.
(12:08):
- ...a home, yes. It, itwas difficult for me.
Because re-remembering now,
I was, you know, trying
to hold back the tears andall that sort of stuff.
- It must have been so traumatic for you.
You know, when you'vegot to go to that step of,
of actually placing somebodyinto that care, it's,
it must be so hard.
(12:29):
- Yes, it was.
Especially when, you know,you go through that guilt.
And you get riddled with it. (-Yeah.)
- And I, I've heard it said
before by family members thatwe have to look after mum.
She has to stay at home.
There's no way she's going into a home.
But, sometimes you realise
(12:52):
that you're unable to do that.
And, and so it came atime where I realised
I couldn't do that andneither could my family.
So, took mum there
and that was the turning point.
When I left, I was bawling my eyes out
and I felt like the worstdaughter in the world.
(13:13):
My husband was wonderful and amazing.
He would often provide counselling for me.
I know that wasn't reallythe right thing to do, but,
that's how it was at the time.
And I would visit quite a lot.
And that meant breakfast,that meant lunch and dinner.
(13:33):
- That was a lot.- And sometimes sleeping.
A lot of things happened withinthe residential setting.
Mum often said, you know,
"There's too many men in this area."
"I only want to be with the women"
and "I only want women to touch me,
I don't want the men to touch me."
And culturally it's not appropriate.
(13:56):
But, even though we, you know,
you complete the personal care form
and things like that,I don't think people really
read those things.
Care, residential carers.
And I would like to see themreally look at the care plan.
And know the personwell. Well enough to know
that they don't likeVegemite on their toast.
(14:17):
They prefer jam.
You know, those simplethings that make life
so beautiful and easier.
- What, what's the cultural view
of putting a parent into aged care within
indigenous culture?
- Well, I know within my familystructure, you don't do it.
(14:38):
And, usually it's the oldest child.
The sibling, older sibling,that is responsible
for these things to happen.
Mum, being a female, of coursethere had to be a fair, one of
the sisters or thedaughters to look after her.
And, so originally it started off
(15:00):
with my younger sister looking after mum.
And then it went onto, onto me.
And, so it had to be oneof us girls to look after mum.
My brother, our brother could not look
after mum the way that we are expected to.
I know it's differentfor different families.
But this is our, how wewere structured and taught.
(15:23):
- When you say you don't doit, what's the perception then?
Socially and culturally, if you do?
If you are in a situation
where you do need to take that step?
- You're criticized.
And, the criticism comesmostly from your family.
And, it's soul destroying and damaging.
And it was very hard for me to,
(15:46):
cope on a daily basis
with that extra criticism
and judgement.
I can't believe I'm here today
to tell the story. I'm glad I am.
- We are glad you are too.- Yes.
(16:07):
- Do you believe, in hindsight,that it was the right thing?
- Absolutely. (-Yeah.)
Absolutely, because there was time.
There's ages and stages.
And mum was at that stage where
she needed that type of help and support.
Which I could not give her. (-Yes.)
I couldn't give her that.
- It's in her interest, right?- Yes.
(16:27):
- I know she didn't like hospitals at all.
She had a fall in the carehome and hurt her hip.
- Yes.
- Tell us a bit aboutthat. (-Yeah.) What happened?
- Mum was taken to the hospital.
I think they actually got me on the phone.
(16:49):
I said, "Can you please put my mum on?"
"I want to talk to my mum."And they said, "Yes. Okay."
And I said, "Mum, how are you feeling?"
And she goes, "I'm inpain, it hurts, it hurts".
"Come here."
I said, "I can't, I have tosee you at the hospital."
"No, I don't want thesepeople touching me."
And I said, "I will meetyou at the hospital."
(17:10):
"I promise mum, I'll be there."
And then they took the phone off her
because she was in a, youknow, she was in a state
where she couldn't calm down.
She was frightened, she was angry.
And she was, she was quite violent.
(17:31):
But when I got there,she didn't know who I was.
In any case, we got her up to the room.
And she was settling in.
That night,
I don't know whether it wasa temperature change or drop
or what it was, but mum woke up.
And she was awake,
but she was saying, [WordsEchoing] "Run, run, run."
(17:54):
"Hide, hide, don't let them catch you."
But she was screaming(-Mm.) this out and I'm,
and I was listening to her
and I was thinking, Oh, wonderwhy she's going through that.
Wonder why she's saying those things.
And she kept repeating that.
And then she grabbed me
(18:14):
and then she was holding mereally, really tight, like
my, pressing into my arm and,
and trying to pull me down to hide.
And, it took a little while,like a couple of seconds
to think, hang on, I'veheard this story before. (-Mm.)
They say that people thatare living with dementia
do go back to their pastmemories, that moment.
(18:38):
And mum was living it,and it was so vivid.
- Oh God, yeah.- It was like I was with her.
And experiencing that, on,in that particular time.
And it just blew my mind.
I thought, Oh my goodness,this is what's happening.
Mum's reliving when she was stolen.
When she was four years old.
(18:58):
And I think being in ahospital setting too,
because it's an institution in itself.
I don't know what triggered mum.
I don't know.
Like I said, it might be the temperature,
drop in temperature.
It might've been that she woke up
and she thought, "Oh, where am I?"
Sort of thing, very clinical situation.
Atmosphere, all that sort of stuff.
Oh, hang on, "I'm lonely.Where, where's my family?"
(19:20):
We knew all the stories.
So that's how I could identify,
Hey, this is what'shappening, this is the story.
- You, you obviously learned a huge amount
through this period with your mum,
and as you've mentioned, there'slots of different cultural
perceptions, viewpoints, andeven obligations for family.
(19:40):
Have you found yourselfnow being able to kind
of share that knowledge and understanding?
They sound like trickyconversations to be having.
So are you doing that?
- Yes, to the best ofmy ability. (Chuckles)
Some days, it depends onwho I'm speaking with. (- Mm.)
(20:03):
And if I've met them before.
If they're completestrangers, it's hard to have
that rapport with people.
In a large setting, it's difficult.
In a one-on-one, or a tight family group,
its a lot easier.
But I feel that if I share mystory, people are more willing
and more relaxed to share theirs. (- Mm.)
(20:24):
I think embarrassment, yeah,
is one of the main reasonswhy people don't want
to share their story.
- What's the embarrassment?
That someone has got dementia
or the way it's respondedto by the family?
- It's so stigmatized.
- Yes, it is, yeah.
And particularly when youcome from a background
(20:45):
where you don't normally talk about it.
I understood.
I, I completely understood whysome people take a step back.
- They drift.- Because they can't deal
with it themselves, within themselves.
It's purely something thatthey have to deal with.
It's, it's not what I'm doing
and wasn't what my mum was doing.
And so awareness, information
(21:07):
and education is so, so important.
Once we all start talking about it openly.
It becomes a lot easier for families
and people living with dementia.
- So do you have practical advice, tips?
Suggestions that you give people?
- I think first and foremost,you need to take a couple
of big deep breaths. (Laughter)
Yeah. Because thatinformation is new and it's...
(21:30):
- Overwhelming.
- Yes. And then if youare able to sit down and,
and talk to family members
and your loved one, about the situation
and how you're going to do things
or how they want us to do things.
[Music]
Are you a carer? You needto ask yourself that.
(21:53):
So I had to ask myself, "AmI a carer? Can I do this?"
I have four children.I have grandchildren.
I know how to be loving,gentle, caring, considerate.
All those things.
So can I apply that to my mum, and
show her respectfullyhow I can care for her?
(22:15):
My answer was yes.
What that looked like, I, I wasn't sure.
What was involved, Iwasn't completely sure.
So, I felt I had to reach out
and find out a lot more aboutwhat dementia was about.
[Music]
(22:36):
The other thing is, I thinkyou need to look at is:
Whether you have the skillsto care for someone else.
You would do a better job if you know
that you have some of those skills.
But if you don't have those skills,
you still can be a good carer
because you can do other things
that will help them and support them.
(23:00):
You don't have to be able to be the one
that showers the person.
You don't have to be theone that takes them out
for dinner or prepare the dinner.
You might not know how to cook.
There are other familymembers that know how
to do those things.
- You now work with Dementia Australia.
What's your job involve?What are you doing?
(23:23):
- Working with family and community.
My priority is working with Aboriginal
and Torres Islander people.
But, I just love being outin the community.
Speaking to people and listening.
Listening is really important.
And I find that if I listenmore than, than I am talking
I, I learn a lot more.
(23:44):
I remember being in thatsituation. I truly do.
And I know how challenging it was.
Every day, every minute,every second of the day.
And it consumes you, as a carer.
That's all you're thinking of. (Chuckles)
How can I do something better?
(24:04):
I hope that I'm helping others
in the community with that.
Whether it be referrals.
Whether it be navigating the system
and helping them.
Whether it be just sitting there
and having a cup of tea.
And that's so important to dois just to slow it all down.
And, talk through things andknow that you're not alone.
(24:25):
There's so many people thathave experienced what we have,
as a carer, and they'regoing through it right now.
And it's good to know that you know,
you're not alone. It really is.
- You've got a picture ofyour mum here today. (-Mm.) Why?
- Mum's always with me.
(24:47):
And, she's my Elder.
So Hamish, I'm trying to not,
I'm trying to hold back the tears now.
It's because she's always been a mentor.
I looked up to her for knowledge, hope,
(25:12):
respect. All those things.
And she had given it to me.
And I believe that shestill does that today.
It's just a cute reminder.
- What's the bit ofknowledge that you think
of when you think of your mum?
- It's not only her knowledgethat she learned along the way.
(25:32):
And that she gathered from her families
and others in her circumstanceswith the stolen generations.
It's also what she taught us.
Strong morals and ethics.
And, they provide a path for the decisions
that you make in your life.
(25:57):
When I think of my mum,that's what I think of.
To still be a good person.
And, the knowledge she had
and the experiences shegave me along the way,
is what I'm going touse in my everyday life.
And that'll include my work life too.
- That's her legacy.- Yeah, absolutely.
(26:18):
But that's what it's allabout, isn't it? (- Absolutely.)
- Passing down that knowledge. (- Yeah.)
- To our children,grandchildren and so forth.
We're lucky enough forgreat-grandchildren.
- Miriam, thank you very much.
- Thank you so much.
- Thank you.
[Music]
[Music]
(26:42):
[Music]
- If you are new to caring,
then people like Miriam who've been
where you are now are always keen to help.
And if you're listening tothis and you've been a carer
before and now, you've accumulatedall of this knowledge,
but you're not really actively using it.
Maybe you could be the personthat helps out new carers.
(27:03):
- If you want to learn moreabout sharing knowledge
as a carer, jump into ourbonus Helpline episode.
You'll hear some handy tips
and ideas from Kristen
who works on DementiaAustralia's free helpline.
And if you want more info
after listening to that, youcan call the helpline yourself.
- I should just give people your
number, Jim, they can call you.
You're ready to chat anytime.
(27:24):
- Ha, ha, more like yours. (Chuckles)
- The helpline, the actualhelpline, not Jim's number,
Is available 24 hours a day, every day.
1800 100 500.
[Music]
[Music]
- Hold The Moment is a podcastfrom Dementia Australia
(27:46):
produced by Deadset Studios.
You can find more episodes
and resources on DementiaAustralia's website.
dementia.org.au.
The show is hosted by me, Jim Rogers
- And by me, Hamish McDonald.
The executive producers areKelly Riordan and Gia Moylan.
The producers are Madeleine Hawcroft
(28:06):
and Liam Riordan.
Production Manager is Ann Chesterman.
Sound designed by Ryan Pemberton.
A special thanks to the wholeteam at Dementia Australia.
And to everyone who sharedtheir stories on this podcast.
[Music]
[Music]
[Music]
(28:29):
[Music]
- Hi, I'm Miriam Cleary.
I'd like to take a momentto acknowledge Aboriginal
and Torres Strait Islanders.
The traditional custodians of this land.
I pay my respect toElders past and present.
This land has been home tostorytelling, knowledge sharing,
and culture for thousands ofyears, and always will be.
It is an absolute honour andprivilege to be here today.
(00:22):
And I do so with gratitude and respect.
I hope you enjoy my story.
[Music]
Mum tried her hardest tokeep the family together.
She's part of the stolen generations.
[Music]
She was taken away when she was four.
(00:44):
From a place called, Kalkarindji.
Which is in Wave Hillin the Northern Territory.
And, she was sent with others
to a Methodist Mission in Croker Island,
which is an island just out of Darwin.
[Music]
- This is Miriam.
(01:05):
Miriam cared for her mother,who lived with dementia.
- I'm an Aboriginal womanfrom Northern Territory.
My mother's side isGurindji, from Wave Hill.
And my father's is East Arrerntefrom Alice Springs.
- Miriam, who you just heard,works for Dementia Australia.
Up in the Top-End.
(01:26):
She's a family and community coordinator.
So she's sharing knowledgefrom both her personal caring
experience and her professional expertise.
[Music]
[Music]
- Hey, I'm Jim Rogers.
And I'm living withyounger onset Alzheimer's.
(01:46):
- And I'm Hamish McDonald.
I cared for my dad who was living
with Lewy body dementia and Parkinson's.
- And this is Hold the Moment.
A podcast made by people living
with dementia and their families.
Miriam's role as a careris very complicated.
- She's got a great passionfor sharing knowledge.
(02:06):
And that came from her mum.
- Education was important.
And particularly with our background
being Aboriginal people.
Statistics show thatAboriginal people have a less
opportunity for education, housing.
All those sorts of things.
I could, the list goes on.
So, mum did all that she couldto provide all those things
(02:28):
for us, and encouraged us.
- A lot of people who were part
of the stolen generations,had lifelong difficulty
with authorities and institutionsand even professions.
What was your mum'srelationship like with doctors
and their health system?
Because obviously, with adementia diagnosis,
she would've had to interact
(02:49):
a huge amount with that.
What was the dynamic?
- Mm huh. Very interesting one.
When we noticed that mum wasshowing signs of memory loss,
and they were quite obvious
that she was having a lot of difficulties.
There was one incidentwhere she came out home.
(03:09):
We lived out at DarwinRiver, which is a rural area
of Darwin.
And, mum came to visitus one day with my niece.
We had a wonderful day, andthen she got in the car and,
and she said, "Hey Mim, when I get
to the main highway, which way do I turn?"
I went, "Oh, okay."
(03:33):
The very next day, I went around, and
I took the day off from work.
I worked with stolengenerations at the time.
I went around to see mum.
I said, "Hey mum, are you due
for your general checkupsoon with the doctor?"
And she said, "Ah, yes, I think I am."
I said, "Hey, how about Igive your doctor a call,
(03:55):
and we can go around and get that done?"
And she said, "Yeah, allright. That's no worries."
I said, "Do you mind if I ringup and book that appointment?"
And she said, "Yeah, of course."
So when I rang, mum alreadyhad a very good relationship
with her doctor, her GP.
And, it was a lady.
And she was around mum's age.
(04:16):
So, I think that had asignificant difference for mum.
For being able to, you know,talk to her about things.
And they had a goodrapport with each other.
I know, now, I was prettyblessed with that situation,
getting mum to the doctor
and for them to do those,just those cognitive tests.
(04:37):
But once that happened,they referred mum over
to the specialist, overto the memory service.
Then that became a challenge.
Everywhere else was a challenge.
Because they were newpeople, she didn't know them.
Even though it was inearlier stages of dementia,
she still didn't trust.
There was no trust there.
(04:57):
For hospital staff,
anyone working in that, in that area.
So she insisted that I bewith her and/or my brother
or my sister or my husband.
She just said, "Mim, youhave to be there for me."
And that went all the wayuntil her very last breath.
(05:17):
I had to be there for her.
Which was, very challenging for me.
Confronting.
But, it was obvious that I wasthe one that had to do that.
And, looking back now, Iwouldn't have it any other way.
- So how did the wider family respond
(05:39):
to your mum living with dementia?
What was the dynamic?
- Augh, It was...
- You're shaking your head at me.
Like, why are we going here?
- Oh, it's a very tryingtime. (-Yeah.) Extremely.
And, because people
react differently to different situations.
(06:01):
Some are fearful, some want to know more
and do research.
Others just don't want tohave anything to do with it.
And I think it's important to note that...
Sometimes you can struggle with
that if you are the primary carer.
And, until you relax yourself
(06:25):
and take a moment to understand
that people do react differently.
And they have different capabilitiesin situations like that.
And they have different skills.
And their emotions are different too.
- It can be quite hard to accept that.
- Absolutely. It's like if you witness,
you're a first respondent, andyou've seen a car accident.
(06:47):
Not everyone, there'sfive people in the car.
Not everyone's going torun to the scene to help.
Some people may freeze, somepeople might get on the phone,
and, and call emergency services.
- Everyone's different.- Yes, everyone's different.
And, I felt if I had thatapproach to things,
and I know that, one of the family members
(07:08):
might be really good at doing
the budgeting side for mum.
Another person might be good at, you know,
enjoying walks with mum.
Someone might beinterested in helping out
with the medications, allthose sorts of things.
We all have a role to play.
So that goes back to,yes, I'm the former carer.
But, it takes more than just me to look
after our loved one, our mum.
(07:30):
- How did the kids cope?
Because there's grandkidsas well in the scene.
- My children lived athome, the last three.
And, it was really difficult for them.
At first, "Oh, great, Nana's coming to
live with us", you know.
And because, mum interacted
with them in a differentway, in the early stages
(07:51):
and prior to havingher dementia diagnosis.
As mum's dementia progressed,it became harder for everyone.
Mum became a, a bitaggressive, well, she did.
She was aggressive and incidentshappened along the way.
- Can you tell me aboutwhat happened in the pool?
(08:12):
- From the front of the houseis a veranda that opens out
and, and then into the pool.
And the children were playing.
And, Nan decided that it wastime for them to get out.
And they decided, "No,it's not time, Nana."
"Nana we're not ready to get out."
And yeah, my mum decidedto get a few heavy objects
(08:34):
and throw it at the children. (Chuckling)
[Splash]
And they were fearful of that, so...
- Sounds like a verygood tactic. (Laughter)
- What were they, what were they saying?
- Oh, they were just saying,"Hey Nana, what are you doing?"
"It's okay, it's okay."
And they were trying to calm her down.
It didn't work.
And then, eventually myself and my husband
(08:58):
came out, and calmed mum down.
Mum and I went inside thehouse, distracted her.
Was distraction, was avery good thing. (-Yes.)
- And you use that a lot as a tool.
[Music]
But that night, the children reacted.
They, they locked their doors.
Because they were concernedthat Nan would come in.
(09:20):
And knowing that mum wasjust the most beautiful,
amazing person, but herpersonality was changing
and changing dramatically.
So, I sat with my husband
and I said, "Look, whatare we going to do here?"
And there were otherincidents of course, too.
And many, many more.
But I said, "What arewe going to do here?"
(09:41):
So, we decided to ringDementia Australia, actually.
And they were very supportiveand had some hints and tips
and all those sorts of thingsthat helped us along the way.
- They, they had a PDFon grandmothers throwing
things into the pool. (Laughter)
- No, had calming situations.
- They usually got a PDFon everything (Laughing)
(10:02):
We must tell them.
- Yes. Oh, that was anincident, absolutely.
But, they were very supportive.
But what helped us
with mum staying an, anadditional eight months is...
There's a wonderful trainerat Dementia Australia
and he was able to have just
(10:23):
a very short time with thechildren, a few hours.
And had 'EDIE', whichis our training tool.
And, and it simulates what it's like
to have a person having dementia, and...
- How old were thechildren at this, this age?
- I'd say the youngest would've been about
four or five.
(10:45):
- Wow, that would've beenfascinating for them to see.
- Yes. And it was greatthat, that information came
to them when, when it was needed. (-Yeah.)
- It helped them, you know, we got home
and mum was, like I said,she was able to stay
for about another eight months
before she went into residential care.
And of course I would always have
that support from Dementia Australia.
(11:06):
But I also had that supportfrom the memory service.
And that helped, from myfamily and from the community.
But navigating that system is ridiculous.
- Very hard.
[Music]
- There was a transition toresidential care for your mum.
What was that like?
(11:28):
- I said, we were goingto visit someone.
Ahh...and go and asksomeone about, you know,
if there's a room there.
Because it was respite, and would you like
to have, just a small holiday.
And I'll come and visit you.
And she said, "Oh, I don'treally want a holiday.
(11:48):
I want to stay with you."
And I said, "Well, youknow, you might enjoy it."
"Let's just go and have a look."
So we went through the front door.
And as we're coming up thehall, to start thinking,
"Nah, I'm not going in this place."
Because it was very clinical, you know.
It just doesn't look like a...
- Your home.
(12:08):
- ...a home, yes. It, itwas difficult for me.
Because re-remembering now,
I was, you know, trying
to hold back the tears andall that sort of stuff.
- It must have been so traumatic for you.
You know, when you'vegot to go to that step of,
of actually placing somebodyinto that care, it's,
it must be so hard.
(12:29):
- Yes, it was.
Especially when, you know,you go through that guilt.
And you get riddled with it. (-Yeah.)
- And I, I've heard it said
before by family members thatwe have to look after mum.
She has to stay at home.
There's no way she's going into a home.
But, sometimes you realise
(12:52):
that you're unable to do that.
And, and so it came atime where I realised
I couldn't do that andneither could my family.
So, took mum there
and that was the turning point.
When I left, I was bawling my eyes out
and I felt like the worstdaughter in the world.
(13:13):
My husband was wonderful and amazing.
He would often provide counselling for me.
I know that wasn't reallythe right thing to do, but,
that's how it was at the time.
And I would visit quite a lot.
And that meant breakfast,that meant lunch and dinner.
(13:33):
- That was a lot.- And sometimes sleeping.
A lot of things happened withinthe residential setting.
Mum often said, you know,
"There's too many men in this area."
"I only want to be with the women"
and "I only want women to touch me,
I don't want the men to touch me."
And culturally it's not appropriate.
(13:56):
But, even though we, you know,
you complete the personal care form
and things like that,I don't think people really
read those things.
Care, residential carers.
And I would like to see themreally look at the care plan.
And know the personwell. Well enough to know
that they don't likeVegemite on their toast.
(14:17):
They prefer jam.
You know, those simplethings that make life
so beautiful and easier.
- What, what's the cultural view
of putting a parent into aged care within
indigenous culture?
- Well, I know within my familystructure, you don't do it.
(14:38):
And, usually it's the oldest child.
The sibling, older sibling,that is responsible
for these things to happen.
Mum, being a female, of coursethere had to be a fair, one of
the sisters or thedaughters to look after her.
And, so originally it started off
(15:00):
with my younger sister looking after mum.
And then it went onto, onto me.
And, so it had to be oneof us girls to look after mum.
My brother, our brother could not look
after mum the way that we are expected to.
I know it's differentfor different families.
But this is our, how wewere structured and taught.
(15:23):
- When you say you don't doit, what's the perception then?
Socially and culturally, if you do?
If you are in a situation
where you do need to take that step?
- You're criticized.
And, the criticism comesmostly from your family.
And, it's soul destroying and damaging.
And it was very hard for me to,
(15:46):
cope on a daily basis
with that extra criticism
and judgement.
I can't believe I'm here today
to tell the story. I'm glad I am.
- We are glad you are too.- Yes.
(16:07):
- Do you believe, in hindsight,that it was the right thing?
- Absolutely. (-Yeah.)
Absolutely, because there was time.
There's ages and stages.
And mum was at that stage where
she needed that type of help and support.
Which I could not give her. (-Yes.)
I couldn't give her that.
- It's in her interest, right?- Yes.
(16:27):
- I know she didn't like hospitals at all.
She had a fall in the carehome and hurt her hip.
- Yes.
- Tell us a bit aboutthat. (-Yeah.) What happened?
- Mum was taken to the hospital.
I think they actually got me on the phone.
(16:49):
I said, "Can you please put my mum on?"
"I want to talk to my mum."And they said, "Yes. Okay."
And I said, "Mum, how are you feeling?"
And she goes, "I'm inpain, it hurts, it hurts".
"Come here."
I said, "I can't, I have tosee you at the hospital."
"No, I don't want thesepeople touching me."
And I said, "I will meetyou at the hospital."
(17:10):
"I promise mum, I'll be there."
And then they took the phone off her
because she was in a, youknow, she was in a state
where she couldn't calm down.
She was frightened, she was angry.
And she was, she was quite violent.
(17:31):
But when I got there,she didn't know who I was.
In any case, we got her up to the room.
And she was settling in.
That night,
I don't know whether it wasa temperature change or drop
or what it was, but mum woke up.
And she was awake,
but she was saying, [WordsEchoing] "Run, run, run."
(17:54):
"Hide, hide, don't let them catch you."
But she was screaming(-Mm.) this out and I'm,
and I was listening to her
and I was thinking, Oh, wonderwhy she's going through that.
Wonder why she's saying those things.
And she kept repeating that.
And then she grabbed me
(18:14):
and then she was holding mereally, really tight, like
my, pressing into my arm and,
and trying to pull me down to hide.
And, it took a little while,like a couple of seconds
to think, hang on, I'veheard this story before. (-Mm.)
They say that people thatare living with dementia
do go back to their pastmemories, that moment.
(18:38):
And mum was living it,and it was so vivid.
- Oh God, yeah.- It was like I was with her.
And experiencing that, on,in that particular time.
And it just blew my mind.
I thought, Oh my goodness,this is what's happening.
Mum's reliving when she was stolen.
When she was four years old.
(18:58):
And I think being in ahospital setting too,
because it's an institution in itself.
I don't know what triggered mum.
I don't know.
Like I said, it might be the temperature,
drop in temperature.
It might've been that she woke up
and she thought, "Oh, where am I?"
Sort of thing, very clinical situation.
Atmosphere, all that sort of stuff.
Oh, hang on, "I'm lonely.Where, where's my family?"
(19:20):
We knew all the stories.
So that's how I could identify,
Hey, this is what'shappening, this is the story.
- You, you obviously learned a huge amount
through this period with your mum,
and as you've mentioned, there'slots of different cultural
perceptions, viewpoints, andeven obligations for family.
(19:40):
Have you found yourselfnow being able to kind
of share that knowledge and understanding?
They sound like trickyconversations to be having.
So are you doing that?
- Yes, to the best ofmy ability. (Chuckles)
Some days, it depends onwho I'm speaking with. (- Mm.)
(20:03):
And if I've met them before.
If they're completestrangers, it's hard to have
that rapport with people.
In a large setting, it's difficult.
In a one-on-one, or a tight family group,
its a lot easier.
But I feel that if I share mystory, people are more willing
and more relaxed to share theirs. (- Mm.)
(20:24):
I think embarrassment, yeah,
is one of the main reasonswhy people don't want
to share their story.
- What's the embarrassment?
That someone has got dementia
or the way it's respondedto by the family?
- It's so stigmatized.
- Yes, it is, yeah.
And particularly when youcome from a background
(20:45):
where you don't normally talk about it.
I understood.
I, I completely understood whysome people take a step back.
- They drift.- Because they can't deal
with it themselves, within themselves.
It's purely something thatthey have to deal with.
It's, it's not what I'm doing
and wasn't what my mum was doing.
And so awareness, information
(21:07):
and education is so, so important.
Once we all start talking about it openly.
It becomes a lot easier for families
and people living with dementia.
- So do you have practical advice, tips?
Suggestions that you give people?
- I think first and foremost,you need to take a couple
of big deep breaths. (Laughter)
Yeah. Because thatinformation is new and it's...
(21:30):
- Overwhelming.
- Yes. And then if youare able to sit down and,
and talk to family members
and your loved one, about the situation
and how you're going to do things
or how they want us to do things.
[Music]
Are you a carer? You needto ask yourself that.
(21:53):
So I had to ask myself, "AmI a carer? Can I do this?"
I have four children.I have grandchildren.
I know how to be loving,gentle, caring, considerate.
All those things.
So can I apply that to my mum, and
show her respectfullyhow I can care for her?
(22:15):
My answer was yes.
What that looked like, I, I wasn't sure.
What was involved, Iwasn't completely sure.
So, I felt I had to reach out
and find out a lot more aboutwhat dementia was about.
[Music]
(22:36):
The other thing is, I thinkyou need to look at is:
Whether you have the skillsto care for someone else.
You would do a better job if you know
that you have some of those skills.
But if you don't have those skills,
you still can be a good carer
because you can do other things
that will help them and support them.
(23:00):
You don't have to be able to be the one
that showers the person.
You don't have to be theone that takes them out
for dinner or prepare the dinner.
You might not know how to cook.
There are other familymembers that know how
to do those things.
- You now work with Dementia Australia.
What's your job involve?What are you doing?
(23:23):
- Working with family and community.
My priority is working with Aboriginal
and Torres Islander people.
But, I just love being outin the community.
Speaking to people and listening.
Listening is really important.
And I find that if I listenmore than, than I am talking
I, I learn a lot more.
(23:44):
I remember being in thatsituation. I truly do.
And I know how challenging it was.
Every day, every minute,every second of the day.
And it consumes you, as a carer.
That's all you're thinking of. (Chuckles)
How can I do something better?
(24:04):
I hope that I'm helping others
in the community with that.
Whether it be referrals.
Whether it be navigating the system
and helping them.
Whether it be just sitting there
and having a cup of tea.
And that's so important to dois just to slow it all down.
And, talk through things andknow that you're not alone.
(24:25):
There's so many people thathave experienced what we have,
as a carer, and they'regoing through it right now.
And it's good to know that you know,
you're not alone. It really is.
- You've got a picture ofyour mum here today. (-Mm.) Why?
- Mum's always with me.
(24:47):
And, she's my Elder.
So Hamish, I'm trying to not,
I'm trying to hold back the tears now.
It's because she's always been a mentor.
I looked up to her for knowledge, hope,
(25:12):
respect. All those things.
And she had given it to me.
And I believe that shestill does that today.
It's just a cute reminder.
- What's the bit ofknowledge that you think
of when you think of your mum?
- It's not only her knowledgethat she learned along the way.
(25:32):
And that she gathered from her families
and others in her circumstanceswith the stolen generations.
It's also what she taught us.
Strong morals and ethics.
And, they provide a path for the decisions
that you make in your life.
(25:57):
When I think of my mum,that's what I think of.
To still be a good person.
And, the knowledge she had
and the experiences shegave me along the way,
is what I'm going touse in my everyday life.
And that'll include my work life too.
- That's her legacy.- Yeah, absolutely.
(26:18):
But that's what it's allabout, isn't it? (- Absolutely.)
- Passing down that knowledge. (- Yeah.)
- To our children,grandchildren and so forth.
We're lucky enough forgreat-grandchildren.
- Miriam, thank you very much.
- Thank you so much.
- Thank you.
[Music]
[Music]
(26:42):
[Music]
- If you are new to caring,
then people like Miriam who've been
where you are now are always keen to help.
And if you're listening tothis and you've been a carer
before and now, you've accumulatedall of this knowledge,
but you're not really actively using it.
Maybe you could be the personthat helps out new carers.
(27:03):
- If you want to learn moreabout sharing knowledge
as a carer, jump into ourbonus Helpline episode.
You'll hear some handy tips
and ideas from Kristen
who works on DementiaAustralia's free helpline.
And if you want more info
after listening to that, youcan call the helpline yourself.
- I should just give people your
number, Jim, they can call you.
You're ready to chat anytime.
(27:24):
- Ha, ha, more like yours. (Chuckles)
- The helpline, the actualhelpline, not Jim's number,
Is available 24 hours a day, every day.
1800 100 500.
[Music]
[Music]
- Hold The Moment is a podcastfrom Dementia Australia
(27:46):
produced by Deadset Studios.
You can find more episodes
and resources on DementiaAustralia's website.
dementia.org.au.
The show is hosted by me, Jim Rogers
- And by me, Hamish McDonald.
The executive producers areKelly Riordan and Gia Moylan.
The producers are Madeleine Hawcroft
(28:06):
and Liam Riordan.
Production Manager is Ann Chesterman.
Sound designed by Ryan Pemberton.
A special thanks to the wholeteam at Dementia Australia.
And to everyone who sharedtheir stories on this podcast.
[Music]
[Music]
[Music]
(28:29):
[Music]
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