May 26, 2025 • 34 mins
Rachel Corbett couldn’t afford to put her life on hold, even when her mother was diagnosed with Alzheimer’s disease. She was in her 20s, her career wasn’t established and she wanted to have kids, so spent the next few years looking after her mum while juggling everything else in life.
Then her dad was diagnosed with Lewy body dementia.
Rachel would go on to spend her 30s supporting and caring for her parents.
“I did have a difficult time with both my parents because of this, but it connected us in a way that might not have ever happened if they were both well.”
Caring for someone living with dementia can be overwhelming, but you’re not alone.
Hold the Moment is a podcast by people living with dementia and their families, and season two is all about people who are caring for loved ones with dementia.
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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):
- 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 now pay our respects
to the traditional owners, to Elders past
and present, to those First Nations people
(00:22):
joining us here today.
(Indistinct background chatter)
- I knew something wasn't right
and I kept saying to my GP,"I'm having issues,
getting confused, constant fogginess".
Well, the memory clinic, theystart off by doing a series
(00:44):
of testing, cognitive testing.
All sorts of things that you fill out.
General discussions with you.
Psychologists chats to youabout your experiences.
You then go on to theirfindings from the
cognitive investigations.
Then I went for an MRI.
(01:07):
They then sent me for a PET scan.
Then finally, that led to the appointment
with the Neurologist.
I was truly hoping that theywere going to say,
"Look, you've got somesort of cognitive issue".
"We can do this medication".
"We can do this."
"Let's get this done while sorted."
(01:28):
and "Let's move along"and "See you later".
and "Off you go".
And when they said, "We'vereviewed your PET scans et cetera
and, unfortunately, wecan see that you have
Younger Onset Alzheimer's".
You literally could haveknocked me off my chair.
(01:50):
It's as though timestood still, for a moment.
(Music)
(Music)
Hey, my name's Jim.
I was diagnosed withYounger Onset Alzheimer's.
(02:12):
And as you might expect,
life's changed quite alot for me since then.
I was never much into exercise before.
But now it's a huge part of my routine
and I'm trying to keep my body
and my brain as healthy aspossible for as long as I can.
I've also been doingquite a bit of travelling.
(02:32):
My neurologist, once Iwas diagnosed, told me
to create a bucket list andstart ticking things off.
So, that's one of thethings we've been doing.
We went to Ko Samui recently.
We've got a, a cottage in Maleny.
So, we've been having family times there.
So, we've been trying to getthese things
that we want to do andwe've also been focusing
(02:54):
on this podcast, whichI'm now hosting with you.
- What a bucket listitem that is. (laughing)
- I'm, Hamish Macdonald,this is Hold the Moment.
It's a podcast from Dementia Australia.
In the first series,
Jim and I spoke with peopleliving with dementia.
We heard about the challengesthat they face, like what
to do when you're firstdiagnosed, how to deal
with the medical stuff
(03:15):
and the legal paperworkof which there is plenty.
And, how your sleep mightbe affected over time.
- I also shared a lot aboutmy own journey with dementia
and we even had a chatwith my husband Tyler,
to get his perspective onproviding care and support for me.
- Even though he doesn'tlike being called a Carer.
- Absolutely Hamish.- So, in this new series,
we're going all in on carers.
(03:37):
It's a topic close to my heart.
I looked after a lot of my dad's care.
He was diagnosed with Lewybody dementia and Parkinson's.
He passed away at the end of last year.
- Caring for people living
with dementia can be really tough.
It's a logistic nightmareand it can be mentally
and physically exhausting.
- And I know you've said this,
(03:57):
I know I've experienced it too,
as a Carer, it can be really isolating.
If you're looking aftersomeone living with dementia,
you might be spending a lotof time at home with them.
You might be the onlyperson in your social circle
that's going through anything like this.
- I would obviously keep my friends up
to date when I'd saw them,
but for me personally,I almost sort of said,
(04:17):
I'll give you the update, butI just want us to be friends.
I want me to be 30 again.
- It can also be emotionally turbulent.
Dementia can change people
and that's really hard to watch happen.
- Shirley's not the girl I married,nothing is left of that.
Yeah, that's, that's all gone.
- So, on this season, weare hearing from Carers.
(04:43):
So, how do you feel aboutpeople caring for you?
And calling them carers?
- Yeah, I, I, I, it'sreally difficult for me
Because, I feel pretty good in myself.
And, some of the people that I've met
through Dementia Australiahave declined a little bit
more than I feel I have, so I still don't
(05:03):
feel as though I'm that fardown the road
so that I need carers, but I'm aware
that I do need support in certain areas.
So, Ty's resistant onbeing called a Carer.
- And is there a frictionpoint for you with Ty or,
or with your, your kids?
- I think so.
I think they still very much think of
(05:24):
'just me' as dad, and Ido a few clumsy things.
And Ty's much the same.
I think it is, it's quite adifficult thing to actually
change the name to 'a carer'.
How about you with your Dad?
Did you find it difficult whenyou suddenly went from son
to Carer?
- Yeah. I mean, I guess it was gradual.
Like all of these things.
(05:44):
But yeah, there was certainlya point where I realized that
Even though dad is pretty cognitive
and can have really smartconversations about things,
he just can't actually land on a decision.
- Yeah (laughs).- And...
- That's a bit me now.
- Yeah, and that was a reallycomplicated thing to navigate
because you don't want to override someone
(06:04):
that has clear intention and will
and can tell you what they don't want.
At the same time, you knowthat in their interests
and for their safety, somedecisions have to be made.
(Yeah)
And, it was quite, it wasreally challenging to sort
of feel that you werebasically forcing their hand.
(06:24):
And you know, I used to try
and think of everythinglike a dropdown menu.
If this, then that, ifnot that, then that.
And it just didn't work.
You'd go around in circles with that.
I remember with gettingbutchers paper out at one point.
Trying to sort of put a map of all the
decisions in front ofDad, so that he could get
to a decision at the end.
But even doing that,
We'd go back to the beginning (chuckles)
And he'd say, oh no, well,I'll just stay here at home.
(06:46):
And it's like, no, no Dad, we,we've gone through that.
- That's not an option.
- You know, that that'snot an option anymore.
- For me as well, I'm starting to find,
making decisions are more difficult
and also planning is difficult for me.
So, Ty steps up in those areas.
I think the, the kids arealso aware that, you know,
if they leave it to me
(07:07):
to plan it now, it's not going to happen.
So they, they sort of step up with that.
- I always expected it to be difficult,
but it was way more complicatedthan I ever imagined.
Something that was really useful
for me was actually talkingquite a lot to a colleague.
Someone that I sit on the desk
with at "The Project" frequently,
and who had experienceddementia with both her parents.
(07:30):
- I'm Rachel Corbett.
And I am, what am I? (laughing)
I'm a media presenter. I'm a podcaster.
I'm somebody who runs podcast networks.
I'm a 'jack-of-all-trades'.- And a mum.
- And a mum, I am a mum. That's true.
- Tell us what yourrelationship is with dementia.
- So, both my parents havehad it in different forms.
(07:53):
My mum had Alzheimer's, myfather had Lewy body dementia.
Prior to that I hadn't reallyhad any experience in
dementia at all.
But I feel, very
much like it has becomea big part of my life,
but there's still a lot Idon't understand about it.
(08:13):
Which considering it'staken up over a decade
and I've been heavily involved in that,
that surprises me, you know?
- And it's, for you, obviouslybeen a big part of your life.
Has it been overwhelming at times?
What's the (Yes) impactit's had on your life?
- Massively overwhelming. Yeah.
I think my situation withmy mum, she had Alzheimer's
(08:35):
and it was very,
at the end it was really, bad.
Like it was, you know, I sayoften people think it's like,
Oh you, I guess you justforget your car keys.
And, it was just so much morethan that for my mother.
And one of the hardest things was
that she was still very present.
(08:55):
Even in a really smallway, right till the end.
So the way that I would feelabout it when I looked at her
was that like I, I could see her in there.
It was almost like Iwas watching this person
who was (trying to get out)
Trying to get and she was, far away
from me distance wise,
even though she was standingright in front of me.
But she knew me, and she knew that
(09:17):
something like what was happening to her.
Not, she couldn't articulate it.
She couldn't speak about it,
but she knew somethingwasn't right the whole way.
- So you could almostfeel her frustration.
You could feel it.
- Yes, yes.
Every single time I sawher, it was that sort
of "get me out of here"feeling, this isn't me.
And that to watch, withsomebody that you love
(09:39):
and you can't do anything about that.
I think I found really, really hard. Yeah.
- Just take us back a littlebit to when you first started
to notice some of the, the signs
that things weren't right with her?
- Yeah, she kept it a secretfrom me and my sister.
She knew something wasn'tright earlier than she let
(10:00):
anybody kind of know.
So, we didn't really know a lot.
I remember asking her todrive me into work one day.
And she was like, "Oh, Ican't, I can't do that".
I was like, "Why"? (chuckles)"You're available".
(chuckling) "You have acar, you know how to drive",
"So, why wont you just get inthe car and drive me to work"?
(10:22):
And she kind of couldn't giveme an explanation for why.
But in her mind she was like,
I don't know if I can get there
and I dunno if I can get back, you know.
And I'm just aware thatsomething is happening here.
And I'm just not confident anymore.
So, little things like that would happen.
But she wasn't kind of saying,"I don't feel confident".
(10:43):
And when you're, you know, mumjust won't drive you to work.
And you think, "Gee, whyis, what is your problem"?
(Background laughter)
- What have I done?
- Yeah, exactly. "Whydon't you love me anymore"?
Like, "what's your issue"?It's those kind of things
that you just can't kind ofwork out why they're sort
of doing things, but fromtheir perspective it's all
a lack of confidence. (Yeah)
You know, it's just that
(11:04):
they don't feel confidentdoing things anymore.
And they also don't want to say, that.
- Once you did know, (Mm) What changed?
How did the dynamic shift?
- I mean, ultimately with my mum,
her and I had had, not adifficult relationship.
But, I mean, kind of happenedwhile she was sick as well.
(11:24):
She did like to keep upappearances. (laughing)
And there were some things in our life
that I really wanted herto be honest with me about.
Just in terms of myexperience of certain things.
I, I really just wanted her to, to kind of
- Open up.- Open up.
Take some accountability for some things.
You know, some stuffhad happened in our life
(11:45):
and I, I felt like I was kind of speaking
to a different script than she was.
And, so in my mind I'm like, "Is this?
like, am I going crazy here"?
Like, "I feel like", and soshe wouldn't kind of own up
to a lot of stuff and that,
and I found that very frustrating.
And then, when she started,you know realised "Okay this
is serious, this issomething." She really started
to open up to me about some things that
(12:07):
we never talked about, that were allI really needed
to hear from her, really, because I think
she realised, "Okay, what'sthe point?" (chuckling)
You know, like, let's,let's pull the charade away.
Let's have a real conversation about this.
And so, for me, I remember sheactually had that conversation
with me, the night before I was going
to move overseas for two years.
And, the only reason Iwas going overseas was
(12:28):
because of a lot of these things.
I just wanted to run away really.
And she had this conversation with me,
And it was like, "now Idon't need to go". (laughs)
And I'm about to get on a plane tomorrow.
And, so I think that distancewas hard for me then
because all I wanted todo was be around her.
And by the time I got back, you know.
Time, things are different.
(12:50):
But as things worsened, wespent a lot of time together.
And, it was really healing for her and I.
It changed mefundamentally as a person.
I think a lot of the,the communication issues
that I'd had early on where,you know, some of the things
that I felt were true weren'tbeing kind of validated.
That makes you think thatyou're the problem, as a person.
(13:11):
And then when that validation happens
And you're like, "Okay,it's not me." (Yeah)
Like, we experienced this together.
Like, you are on my side.
- That means a lot.
And, and do you thinkthat, that diagnosis sort of
made her review life in itself
and, sort of, speak to you differently
(13:31):
than she previously had?
Like you said, keeping upthis, this facade a little bit.
- Yes.- And let her put a guard down.
Because she realised thisis it, you know? (Yeah).
- Yeah. I do think that happened to her.
And I'm so gratefulhonestly that it did happen
because, it really didchange our relationship.
It changed me. She gave methe biggest gift.
Like, I feel after she passed away,
coming through that time.
(13:53):
I've never been happier, honestly.
Like, because it really helpedme to see myself differently.
And I also think being withsomebody like that, you know,
who needs help and who is afraid
and who feels safe aroundyou, it makes you start
to feel really positiveabout yourself too. (Yeah)
- Because, you can bethat for that person.
(14:14):
- So there was a silver lining really.
- Yes, definitely.- Brought you closer in a way.
- Definitely. I do think,
I am very, very grateful for that time.
I wish, to get that, my motherdidn't have to experience
what she did, because Ithink I benefited from, from
that relationship and that experience.
(14:35):
By what she gave me.
- Just explain that.
- I just mean because how it adjusted
our relationship, how it gave me the
opportunity to be therefor her, in that way.
I think that was a real privilege.
And, just the way it mademe feel about myself.
I came out the otherside of that, feeling,
(14:56):
just grateful to have beenable to be there for her.
- See, these things are soemotional, they're so raw.
We should have had abig box of tissues...
- I know, right?
- Which we did not get to do, Rachel.
- I'm, and I'm, I'm a blubber.I love a cry. I love a cry.
- I think that...
- I think we have to work together
and they have to keep abox of tissues on standby (laughing)
for her and her makeup artists.
(15:16):
- I know, I know.
- It would be a nightmare for her. (Yeah)
- Tell me about what you, actually watched
happen to your mum, over time.
- To be honest, it was kindof slower than I thought.
You know, I, I rememberpeople saying, you know,
it's probably about 10 years
between, when somebody's diagnosedand when they pass away.
(15:37):
And even close to that10 years, I thought,
"This doesn't seem likesomebody who's going to
die in two years."
You know? And then at the end it kind
of progressed pretty rapidly.
But, I mean, thetimeline's a little fuzzy.
But, towards the end, it just really
spiralled pretty quickly.
And, you know, it was a lot of,
she became quitedifficult to keep at home.
(15:59):
My stepfather was having tocall the ambulance quite a lot.
She was very violent.
You know, she had nothad a great upbringing
and a lot of those memorieswere coming back to her.
You know, when I wouldspend time with her,
she would sometimes takemy hand and, you know,
and say things to me
and I was like, oh, you think you're a,
you think you're a little kid again.
(16:22):
She was kind of having a lotof memories from that time.
And, that was also really hard I think
because, you know, to be takenback to a time for her which
was so difficult.
And to have no control over,
It's not like you say, "You know what"?
"I'll go and distractmyself with something else".
Like your brain is rippingyou back into that time
and you are stuck there.
(16:43):
And I think for her that was really hard.
So, seeing some of that,that stuff was really tough.
And yeah, it was really just,I think just watching the
out-of-controllness ofit for me, you know.
My father's situation was very different.
It was a quieter experience.
But my mother's was very, aggressive.
(17:05):
It was very much like she was being ripped
around in this situation.
It was physical.
She, you know, would kindof bundle up in the corner
and sort of rock back and forth.
She would be violent.
She would, you know, shereally did feel like somebody
who was being torn from left to right
and was just stuck in the middle of it.
(17:25):
- Was your mum violent towards you?
- Yeah, yeah. She didn'tmean to be. (Yeah)
In, in her mind,
I think it was just like she,it, it all felt involuntary.
You know? It all just felt like shewas just doing
whatever her body was telling her to do.
And, you could see that she regretted it.
You know, she knew who I was.
She didn't want to be doing that to me.
(17:47):
But, that was kind of howit was manifesting for her.
- And often the nearest anddearest is the one that you (yes)
lash out at.
- Of course.
- Did you, did you have anyparticular techniques
that you thought were good
as a calming influence on herat those moments when she was
at her most stressed and angry?
(18:07):
- I'm pretty good at a comedic left field
you know, (laughing).
In the weirdest of terrible moments.
(Yeah) I'm pretty good at going out with
something that...
- The gallows humor (with the)
- Yes, the gallowshumour (that's it, yeah).
And my mum was very muchthe same type of person. (Right)
And, sometimes, depending on
where (it worked) shewas, it would work. (Yeah)
(18:30):
And a lot of times inthose moments, you know,
I would say something
and she still, she stillhad humour till the end.
(Music)
- I don't know how youthink about this now.
I guess, you know, whenwe are recording this,
my Dad died just a few weeks ago.
And I think I'm only just starting to
(18:51):
maybe recognise the, amount
that this was weighing onme emotionally and mentally.
And really only just in the process.
Right at this minute, takingstock of all of that.
How do you, with thebenefit of some hindsight,
at least in relation toyour mum, think about it?
- I, I dunno how I stillmanaged to get everything done.
(19:14):
Because one of the things I, I thought
and a lot about my mum
and my dad, is that my mumwas sort of, you know,
it was late twentiesand through my thirties.
My father was through mythirties into my early forties.
- God, you had a lot.- Yeah, I, I used
to say a lot during that time.
I am living the life ofa 60-year-old, right now.
Because I'm taking, you know,I'm taking care of both,
(19:35):
you know, I was the onlyperson here for my father.
My mum did live in adifferent state and had care.
But I was, you know,constantly kind of there, and,
and thinking about her, you know?
And I think that mental energy.
I feel like the bestnight's sleep I had was
the night she passed away.
Because, I felt like Icould just relax (Yeah).
She's okay. She's all right.
Every day, up to that point, Ididn't feel she was safe.
(19:58):
I didn't feel she was okay.
I didn't feel like, you,I knew she wasn't okay.
And, you know, so thatwas really hard because
you're, you're alsofeeling incredible guilt
for being away, and not being there
a 100% of the time.
But I was really tryingwith both my parents,
to, manage my life,
(20:20):
as best I could through that time, because
I was conscious, and Ihad seen a lot of people
in that situation wherethey do give everything up.
And I feel like that isan amazing thing to do, but I
was conscious that Iwas, I'm in my late twenties,
my early thirties.
My career is not established.
Financially, I need to build stuff up.
I want to have a family.
(20:41):
At that stage I was like, I want to try
and, you know, meet somebody.
So I was like, I have totry and do all this stuff.
- This is crucial stuff (Yes).
- It's crucial because what I...
- You get this wrong.
- That's it.
- It does just change everything.
- And I did not want to getto the end of, my mum passing
and my dad passing andthink, it, now I have to start
and resent them for that time. (Yep)
(21:02):
I wanted to be like, it's fine.
This has been a reallyhellish juggle for me
that I've almost not made it through,
but it has been worthlike doing everything
at the same time.
Because, then when both ofthem passed away, I was like,
Okay, I've done everything I could there.
But also, I'm like, I can go on.
I can earn an income.
(21:23):
I can have my child.
I can, you know, do all that stuff and
I think after coming through10 plus years of that,
I needed a bit of time.
I really wanted to have a kid.
But I was like, I actuallyneed a few years off
because I've spent over a decadelooking after other people
and I don't want to look aftersomebody else right now.
And, if I had not have done allthat stuff during that time,
(21:44):
I probably wouldn't havebeen financially able
to have this kid by myself.
You know, there was a lotthat I kind of felt like I had
to keep 'up in the air' to make sure
that I didn't 'crash' whenit all sort of ended.
- You've had a lot on your shoulders.
- Yeah. It's been 'effing' exhausting.
I've got to be honest, it's so tiring.
I'm like, it is a lot, and thereis a real sense of relief.
(22:06):
You feel terrible for saying that.
But honestly, after my mumpassed I was relieved mostly
because it was just like,that was really harrowing for her.
For my father, like I had spent the last,
you know, eight years of my life,
five years when he wasin my care, still at home,
but in my care.
You know, and then when
he was in "Care", it was exhausting.
- How do you suggestJim thinks about this?
(22:28):
Because he's worried about his beautiful
daughters and his son. (Mm)
- And there's a lot of love. (Mm).
And there's this desire to help,
but then there's also a desireto, not burden people.
- Yes
I don't want to speak for you, but
- That's what you talked about.
- What we've talked about is together...
- And Ty, your husband as well.
- Yeah, that's exactly how I feel.
- I think the fact thatyou feel that way is in
(22:50):
and of itself enough, to begin with.
Because sometimes, likemy father, bless him.
Loves a guilt trip, wasn'tthe kind of person that was,
"Let me not burden you". (chuckling)
You know, was very much thekind of guy that's like,
I feel like your, (norcan you) Yeah, exactly.
I feel like you're supposedto be burdened by me.
So, if you could (Yeah, I get that.)
give up everything else, you know.
So, my mother on the otherhand, was fighting something
(23:11):
that was really had a grip of, of her
and she was always trying her best.
And in that environment you're like,
I'll do whatever youwant, to be here for you.
So, I think that outlook in
and of itself is likeamazing for somebody.
The only thing that I would say
that has been incrediblyhelpful, my mother was like this,
but she kind of couldn't do as much.
My father was completely theopposite of this. Is like,
(23:34):
"Do what you can to help themto do what they need to do".
For example, with my father,would not have a conversation
about even thinking about
(a) getting people in during the day
on the days that I couldn't be there just
for me to have somebody to check on him.
"No, not interested inopening the door to somebody.
No, I don't want anybody to be here.
I only want you to be here."
(23:55):
So, that then puts an incredible amount of
pressure on you as aperson because you're like,
Okay, well should I do,should I be going to work?
Should I be there with youall the time? Is it okay?
You know? And then of course at the end
of the conversation whenhe finally lets somebody in
and he thinks they'relovely and he's like,
why didn't we do this before?
And I'm like, thanks forthe nine years of punish. (Yeah)
- It's all your fault.(background laughter)
- So, it's taken me toget to the point where
(24:15):
you're like, you see,"I'm not going to send a
serial killer in tohere to look after you".
I'm not going to like, justhelp me, help you. (Yeah).
And communication in thatregard, like you feel
so connected to your parents.
Like you seem like avery open, honest person.
I didn't have a huge amount of
communication with my parents.
I wish my father had been like,
(24:36):
Oh, I'm really struggling with it.
Like the moments I feel wefelt most connected was when he
would tell me, "I'm scared".
- And when he needed you, I suppose.
- Exactly. And there were a few moments
where he would be really vulnerable
and he would show me he's really scared.
- That's what breaks myheart with a lot of it,
and, and some of the storiesyou told us about with your Dad
and seeing your Dad when hewas so sad at times, you know,
(24:59):
and frightened, and asa child, then you have
to become the adult in thesituation and comfort them.
I think that's so sad to hear about
and to, to watch for people.
- I know, and I get thatyou wouldn't want to do that,
like to your kids, because I feel the
same way, you feel likeyou want to protect them
but, at the same timeit's, it is a privilege.
(25:20):
It is a privilege. (Yeah). It really is.
Like, and I feel like yourkids would feel the same thing.
You want to be the person that is there
for somebody in thissituation that they love.
Like, it's genuinely one of the things
I'm most proudest ofdoing in my life. (Mmhmm)
So, I think that's an importantthing for your kids to have.
(Music)
(25:44):
- Tell me about your Dad.
- Oh, good old Ronnie C, Mate, mate.
- God, dementia gave youa good kick-in didn't he?
- Tell you what. Oh.
Sometimes he would behave in certain ways
and people would be like,oh, it's the dementia.
I'm like, mate, he's beenlike this since 1937. (laughing)
So no, it's not the dementia. Yeah.
(26:05):
- It's funny you say that.because I'd tell mum about
my, my parents were not togetherfor a very long time. (Yes)
And I'd tell mum aboutthings dad was doing or saying
or what they were sayingabout the illness.
And mum was like, he was
like that when I was married to him.
- Correct. (laughing)
That's the thing. They'refundamentally still the same
person, you know.
And some of the stuff, like my dad,
(26:25):
- You do have to use it to youradvantage though sometimes,
because I do say to Ty,
"Its the Alzheimer's", youknow? (Yeah) (Laughing)
- When, when it's appropriate.
- Yes. So, my Dad...
- He's going to hear this.
- I know he will.
- Truly, but my Dad, I mean right
until the bitter end, could guilt trip
like nobody's business.
And I'm like, oh, you'reforgetting a lot of stuff,
but not how to really dig the
(26:46):
heal in on the guilt, you know?
So, yeah, Dad, it wasalmost honestly the day
that my mum passed away my,
I said my Dad picked up the slack.
- Yeah, right.
- And, you know at that point
I think he was more aware of the fact
that he was kind of not managing things.
But, also it was quite hard because my
Dad was very much, a'stick my head in the sand'
(27:06):
kind of person.
So, I couldn't really work out whether
'Are the bills not getting paid'?
because dad just lovesto shut the door on life
and go like, "that'll sort itself out".
Or are they not being paid?
because dad doesn't knowhow to pay the bills.
So yeah, then we sort ofwent through the process of,
of getting him testedand that kind of stuff.
And, his was a much quieterexperience than my mother.
(27:27):
Like, I mean, he was alwaysa very solitary person,
you know, liked his own company.
And when we, even when wemoved him into the home,
Everybody, the people kepttrying to pull him out
and get him to do activities
because of course, you know, they don't
want anybody sitting in their room.
And I was like, "Actuallythat's the happiest
place that he could be, you know"?
- He just likes it.
And, and sure enough, anytime
that they dragged him outthere, he'd turn around
(27:48):
and say to them, "Whyhave you brought me out
with all these old people"? (laughing).
It was like, look atthe mirror mate. (Yep).
- So he was kind of,quite, it was really more a,
a difficult thing for me emotionally
because he was just ahard person to care for.
And, I think sometimes when you're looking
after people that you love,
(28:10):
relationships are complex.
You know, it's not like, "Ohwow, we've had such a close,
wonderful, bonded relationship for years
and now I'm stepping into do for you what you...,
- That's the dream, yeah.- What you exactly did for me."
You know, sometimes you'restepping into a situation
where you're like, well, I'm turning up
and I'm going to do this for you.
But, sometimes I wonder, doyou deserve it?
(28:32):
- You'd do it for me.
- Yeah, exactly.
- Well, there's, there'sobviously a lot going on here,
different parents, differentkinds of relationships
with both of them.
And obviously you're trying tomake sure that you're looking
after yourself in the midst of all of it.
How did you cope? How didyou get through it all?
- Honestly, I do feellike I have a very high
(28:52):
threshold, for what I can manage.
What's the like, functioning,alcoholic version of this? (laughing)
- Yeah. You're a functioning carer.
- Yeah, I'm a functioning carer.
You know, like I, I just cankeep getting things done.
I think if, if they justneed to happen, well, it just
needs to happen, you know?
And that's not to saythat I'm not exhausted
(29:14):
But I don't think I, I'mnot really one that sort
of sits there and wallows in the situation
and is like, it is what it is, you know.
And there are also,you know, as I mentioned,
there are benefits to doing this.
And I think the valuesof the person that I am.
I do remember having aconversation with my therapist.
I had many over the years asI was going through this time.
And that I would alsosay is one of the things
(29:36):
that got me through, massively.
- Getting support.
- Getting support, a 100%.
- Which Dementia Australia provides,
is an incredible supportline that you can call
24/7 and you can get accessto counselling through that.
- Yes. Having a professionalto talk to throughout all
of this period, for mewas really important.
Particularly, the stuff withmy dad because I found,
(29:57):
because that was my responsibility.
I was the sole person lookingafter all of that stuff.
But I remember I had acouple of conversations
about opportunities to potentially move
for work, for life, for those things.
And honestly, I said to mytherapist, like, I do feel like
I'm really giving up a lot here.
(30:18):
And, I don't have any, like,
I don't have much choicein terms of what I can do.
Like I could, if I've had some
great opportunity open up overseas.
- You couldn't really take it.
- I couldn't really take it.
To be honest, I couldn'treally go on holidays
for a long time, becauseI didn't have anybody
here to look after dad while I was gone.
So, I didn't really go anywhere.
And, there was a part ofme, I said to him like, Oh,
(30:39):
I feel like it, he, hedoesn't deserve it sometimes.
Like, does he reallydeserve me "canning" this
part of my life? (Mm).And she said something...
- I mean, it is the prime,that prime time? (Yes, yes).
- And she said somethingto me that really, really,
resonated, and that was,
"It's not about whathe deserves, it's about
what your values are".
And your values are,
(31:00):
you could not leave somebody like this.
And go and do something like that because
you would never forgiveyourself for doing that.
So, it doesn't matter thathe doesn't deserve it.
It doesn't matter that he drives you nuts.
It doesn't matter that he makes you
guilty every day for doing this.
You are the person that wants
to keep showing up despite that.
And to say, "I can keepgoing through this".
(31:21):
- In hindsight now, looking back. (Mm)
Would you have changed anything?
- No. Nothing. Nup.
I'm really glad for everything.
I cannot, the one thing I cannot deal
with in my life is regret.
Because you can't do anything about it.
You can't go back in time.
And I was like, I cannot regret anything
because then I will hang ontothat for the rest of my life.
(31:42):
But if I give this 150%
and they both go, I canmove on with my life.
And that is what has happened.
I, I just feel like it is a privilege.
I honestly, I have no single regret.
I don't wish, I mean, do I wish,
I had a differentrelationship with my parents?
Maybe, but like, we couldhave, maybe we'd never talk
and I wouldn't have anyrelationship with them
(32:03):
and things could have beenfundamentally different.
Like I did have a difficulttime with both my parents
because of this, but it was,it connected us in a way
that I might not have everhad if they were both well.
(Music)
- Thanks again to Rachelfor sharing her experience
of caring for her parents.
(32:24):
- Yeah. I didn't expect Rachelto get quite so emotional.
I mean, I knew it hadbeen a tough time for her, but
- Incredible.
- She's such a together person.
- When I see her at work, younever really contemplate
how much someone's dealingwith something like this
outside of work hours.
- She just lifts you up,just the way she talks, you know?
- And be able to keep a sense ofhumour throughout it as well.
(32:46):
- Absolutely. I thinkyou've got to hold onto
that humour the whole way through.
- Yeah. Critical.
(Music)
Now, if you can reallyrelate to Rachel's story
and you want some practicaladvice about caring,
there's actually a bonus episode
which goes with this episode.
- You'll hear from Kristen.
One of our advisors on DementiaAustralia's free helpline.
(33:08):
Kristen and her colleaguesare always keen to help out.
And helpline's available 24/7.
So, if you need someone to talk to.
- They're the people to ask.
But you can also find
that bonus helpline episodewherever you listen to podcasts
or on the Dementia Australia website.
You can also call the helplinedirectly for tips and advice.
It's 1800 100 500.
(33:30):
That's 1800 100 500.
- Make sure you arefollowing Hold the Moment
so you don't miss any ofour episodes on Caring.
You can also go back andlisten to series one, anytime.
(Music)
Hold the Moment is a podcastfrom Dementia Australia
(33:51):
produced by Dead Set 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 Macdonald.
The Executive Producers areKellie Riordan and Gia Moylan.
The Producers are Madeleine Hawcroft
(34:11):
and Liam Riordan.
Production Manager is Ann Chesterman.
Sound Design by Ryan Pemberton.
A special thanks to the wholeteam at Dementia Australia
and to everyone who sharedtheir stories on this podcast.
(Music)
(Music)
(34:33):
(Music)
- 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 now pay our respects
to the traditional owners, to Elders past
and present, to those First Nations people
(00:22):
joining us here today.
(Indistinct background chatter)
- I knew something wasn't right
and I kept saying to my GP,"I'm having issues,
getting confused, constant fogginess".
Well, the memory clinic, theystart off by doing a series
(00:44):
of testing, cognitive testing.
All sorts of things that you fill out.
General discussions with you.
Psychologists chats to youabout your experiences.
You then go on to theirfindings from the
cognitive investigations.
Then I went for an MRI.
(01:07):
They then sent me for a PET scan.
Then finally, that led to the appointment
with the Neurologist.
I was truly hoping that theywere going to say,
"Look, you've got somesort of cognitive issue".
"We can do this medication".
"We can do this."
"Let's get this done while sorted."
(01:28):
and "Let's move along"and "See you later".
and "Off you go".
And when they said, "We'vereviewed your PET scans et cetera
and, unfortunately, wecan see that you have
Younger Onset Alzheimer's".
You literally could haveknocked me off my chair.
(01:50):
It's as though timestood still, for a moment.
(Music)
(Music)
Hey, my name's Jim.
I was diagnosed withYounger Onset Alzheimer's.
(02:12):
And as you might expect,
life's changed quite alot for me since then.
I was never much into exercise before.
But now it's a huge part of my routine
and I'm trying to keep my body
and my brain as healthy aspossible for as long as I can.
I've also been doingquite a bit of travelling.
(02:32):
My neurologist, once Iwas diagnosed, told me
to create a bucket list andstart ticking things off.
So, that's one of thethings we've been doing.
We went to Ko Samui recently.
We've got a, a cottage in Maleny.
So, we've been having family times there.
So, we've been trying to getthese things
that we want to do andwe've also been focusing
(02:54):
on this podcast, whichI'm now hosting with you.
- What a bucket listitem that is. (laughing)
- I'm, Hamish Macdonald,this is Hold the Moment.
It's a podcast from Dementia Australia.
In the first series,
Jim and I spoke with peopleliving with dementia.
We heard about the challengesthat they face, like what
to do when you're firstdiagnosed, how to deal
with the medical stuff
(03:15):
and the legal paperworkof which there is plenty.
And, how your sleep mightbe affected over time.
- I also shared a lot aboutmy own journey with dementia
and we even had a chatwith my husband Tyler,
to get his perspective onproviding care and support for me.
- Even though he doesn'tlike being called a Carer.
- Absolutely Hamish.- So, in this new series,
we're going all in on carers.
(03:37):
It's a topic close to my heart.
I looked after a lot of my dad's care.
He was diagnosed with Lewybody dementia and Parkinson's.
He passed away at the end of last year.
- Caring for people living
with dementia can be really tough.
It's a logistic nightmareand it can be mentally
and physically exhausting.
- And I know you've said this,
(03:57):
I know I've experienced it too,
as a Carer, it can be really isolating.
If you're looking aftersomeone living with dementia,
you might be spending a lotof time at home with them.
You might be the onlyperson in your social circle
that's going through anything like this.
- I would obviously keep my friends up
to date when I'd saw them,
but for me personally,I almost sort of said,
(04:17):
I'll give you the update, butI just want us to be friends.
I want me to be 30 again.
- It can also be emotionally turbulent.
Dementia can change people
and that's really hard to watch happen.
- Shirley's not the girl I married,nothing is left of that.
Yeah, that's, that's all gone.
- So, on this season, weare hearing from Carers.
(04:43):
So, how do you feel aboutpeople caring for you?
And calling them carers?
- Yeah, I, I, I, it'sreally difficult for me
Because, I feel pretty good in myself.
And, some of the people that I've met
through Dementia Australiahave declined a little bit
more than I feel I have, so I still don't
(05:03):
feel as though I'm that fardown the road
so that I need carers, but I'm aware
that I do need support in certain areas.
So, Ty's resistant onbeing called a Carer.
- And is there a frictionpoint for you with Ty or,
or with your, your kids?
- I think so.
I think they still very much think of
(05:24):
'just me' as dad, and Ido a few clumsy things.
And Ty's much the same.
I think it is, it's quite adifficult thing to actually
change the name to 'a carer'.
How about you with your Dad?
Did you find it difficult whenyou suddenly went from son
to Carer?
- Yeah. I mean, I guess it was gradual.
Like all of these things.
(05:44):
But yeah, there was certainlya point where I realized that
Even though dad is pretty cognitive
and can have really smartconversations about things,
he just can't actually land on a decision.
- Yeah (laughs).- And...
- That's a bit me now.
- Yeah, and that was a reallycomplicated thing to navigate
because you don't want to override someone
(06:04):
that has clear intention and will
and can tell you what they don't want.
At the same time, you knowthat in their interests
and for their safety, somedecisions have to be made.
(Yeah)
And, it was quite, it wasreally challenging to sort
of feel that you werebasically forcing their hand.
(06:24):
And you know, I used to try
and think of everythinglike a dropdown menu.
If this, then that, ifnot that, then that.
And it just didn't work.
You'd go around in circles with that.
I remember with gettingbutchers paper out at one point.
Trying to sort of put a map of all the
decisions in front ofDad, so that he could get
to a decision at the end.
But even doing that,
We'd go back to the beginning (chuckles)
And he'd say, oh no, well,I'll just stay here at home.
(06:46):
And it's like, no, no Dad, we,we've gone through that.
- That's not an option.
- You know, that that'snot an option anymore.
- For me as well, I'm starting to find,
making decisions are more difficult
and also planning is difficult for me.
So, Ty steps up in those areas.
I think the, the kids arealso aware that, you know,
if they leave it to me
(07:07):
to plan it now, it's not going to happen.
So they, they sort of step up with that.
- I always expected it to be difficult,
but it was way more complicatedthan I ever imagined.
Something that was really useful
for me was actually talkingquite a lot to a colleague.
Someone that I sit on the desk
with at "The Project" frequently,
and who had experienceddementia with both her parents.
(07:30):
- I'm Rachel Corbett.
And I am, what am I? (laughing)
I'm a media presenter. I'm a podcaster.
I'm somebody who runs podcast networks.
I'm a 'jack-of-all-trades'.- And a mum.
- And a mum, I am a mum. That's true.
- Tell us what yourrelationship is with dementia.
- So, both my parents havehad it in different forms.
(07:53):
My mum had Alzheimer's, myfather had Lewy body dementia.
Prior to that I hadn't reallyhad any experience in
dementia at all.
But I feel, very
much like it has becomea big part of my life,
but there's still a lot Idon't understand about it.
(08:13):
Which considering it'staken up over a decade
and I've been heavily involved in that,
that surprises me, you know?
- And it's, for you, obviouslybeen a big part of your life.
Has it been overwhelming at times?
What's the (Yes) impactit's had on your life?
- Massively overwhelming. Yeah.
I think my situation withmy mum, she had Alzheimer's
(08:35):
and it was very,
at the end it was really, bad.
Like it was, you know, I sayoften people think it's like,
Oh you, I guess you justforget your car keys.
And, it was just so much morethan that for my mother.
And one of the hardest things was
that she was still very present.
(08:55):
Even in a really smallway, right till the end.
So the way that I would feelabout it when I looked at her
was that like I, I could see her in there.
It was almost like Iwas watching this person
who was (trying to get out)
Trying to get and she was, far away
from me distance wise,
even though she was standingright in front of me.
But she knew me, and she knew that
(09:17):
something like what was happening to her.
Not, she couldn't articulate it.
She couldn't speak about it,
but she knew somethingwasn't right the whole way.
- So you could almostfeel her frustration.
You could feel it.
- Yes, yes.
Every single time I sawher, it was that sort
of "get me out of here"feeling, this isn't me.
And that to watch, withsomebody that you love
(09:39):
and you can't do anything about that.
I think I found really, really hard. Yeah.
- Just take us back a littlebit to when you first started
to notice some of the, the signs
that things weren't right with her?
- Yeah, she kept it a secretfrom me and my sister.
She knew something wasn'tright earlier than she let
(10:00):
anybody kind of know.
So, we didn't really know a lot.
I remember asking her todrive me into work one day.
And she was like, "Oh, Ican't, I can't do that".
I was like, "Why"? (chuckles)"You're available".
(chuckling) "You have acar, you know how to drive",
"So, why wont you just get inthe car and drive me to work"?
(10:22):
And she kind of couldn't giveme an explanation for why.
But in her mind she was like,
I don't know if I can get there
and I dunno if I can get back, you know.
And I'm just aware thatsomething is happening here.
And I'm just not confident anymore.
So, little things like that would happen.
But she wasn't kind of saying,"I don't feel confident".
(10:43):
And when you're, you know, mumjust won't drive you to work.
And you think, "Gee, whyis, what is your problem"?
(Background laughter)
- What have I done?
- Yeah, exactly. "Whydon't you love me anymore"?
Like, "what's your issue"?It's those kind of things
that you just can't kind ofwork out why they're sort
of doing things, but fromtheir perspective it's all
a lack of confidence. (Yeah)
You know, it's just that
(11:04):
they don't feel confidentdoing things anymore.
And they also don't want to say, that.
- Once you did know, (Mm) What changed?
How did the dynamic shift?
- I mean, ultimately with my mum,
her and I had had, not adifficult relationship.
But, I mean, kind of happenedwhile she was sick as well.
(11:24):
She did like to keep upappearances. (laughing)
And there were some things in our life
that I really wanted herto be honest with me about.
Just in terms of myexperience of certain things.
I, I really just wanted her to, to kind of
- Open up.- Open up.
Take some accountability for some things.
You know, some stuffhad happened in our life
(11:45):
and I, I felt like I was kind of speaking
to a different script than she was.
And, so in my mind I'm like, "Is this?
like, am I going crazy here"?
Like, "I feel like", and soshe wouldn't kind of own up
to a lot of stuff and that,
and I found that very frustrating.
And then, when she started,you know realised "Okay this
is serious, this issomething." She really started
to open up to me about some things that
(12:07):
we never talked about, that were allI really needed
to hear from her, really, because I think
she realised, "Okay, what'sthe point?" (chuckling)
You know, like, let's,let's pull the charade away.
Let's have a real conversation about this.
And so, for me, I remember sheactually had that conversation
with me, the night before I was going
to move overseas for two years.
And, the only reason Iwas going overseas was
(12:28):
because of a lot of these things.
I just wanted to run away really.
And she had this conversation with me,
And it was like, "now Idon't need to go". (laughs)
And I'm about to get on a plane tomorrow.
And, so I think that distancewas hard for me then
because all I wanted todo was be around her.
And by the time I got back, you know.
Time, things are different.
(12:50):
But as things worsened, wespent a lot of time together.
And, it was really healing for her and I.
It changed mefundamentally as a person.
I think a lot of the,the communication issues
that I'd had early on where,you know, some of the things
that I felt were true weren'tbeing kind of validated.
That makes you think thatyou're the problem, as a person.
(13:11):
And then when that validation happens
And you're like, "Okay,it's not me." (Yeah)
Like, we experienced this together.
Like, you are on my side.
- That means a lot.
And, and do you thinkthat, that diagnosis sort of
made her review life in itself
and, sort of, speak to you differently
(13:31):
than she previously had?
Like you said, keeping upthis, this facade a little bit.
- Yes.- And let her put a guard down.
Because she realised thisis it, you know? (Yeah).
- Yeah. I do think that happened to her.
And I'm so gratefulhonestly that it did happen
because, it really didchange our relationship.
It changed me. She gave methe biggest gift.
Like, I feel after she passed away,
coming through that time.
(13:53):
I've never been happier, honestly.
Like, because it really helpedme to see myself differently.
And I also think being withsomebody like that, you know,
who needs help and who is afraid
and who feels safe aroundyou, it makes you start
to feel really positiveabout yourself too. (Yeah)
- Because, you can bethat for that person.
(14:14):
- So there was a silver lining really.
- Yes, definitely.- Brought you closer in a way.
- Definitely. I do think,
I am very, very grateful for that time.
I wish, to get that, my motherdidn't have to experience
what she did, because Ithink I benefited from, from
that relationship and that experience.
(14:35):
By what she gave me.
- Just explain that.
- I just mean because how it adjusted
our relationship, how it gave me the
opportunity to be therefor her, in that way.
I think that was a real privilege.
And, just the way it mademe feel about myself.
I came out the otherside of that, feeling,
(14:56):
just grateful to have beenable to be there for her.
- See, these things are soemotional, they're so raw.
We should have had abig box of tissues...
- I know, right?
- Which we did not get to do, Rachel.
- I'm, and I'm, I'm a blubber.I love a cry. I love a cry.
- I think that...
- I think we have to work together
and they have to keep abox of tissues on standby (laughing)
for her and her makeup artists.
(15:16):
- I know, I know.
- It would be a nightmare for her. (Yeah)
- Tell me about what you, actually watched
happen to your mum, over time.
- To be honest, it was kindof slower than I thought.
You know, I, I rememberpeople saying, you know,
it's probably about 10 years
between, when somebody's diagnosedand when they pass away.
(15:37):
And even close to that10 years, I thought,
"This doesn't seem likesomebody who's going to
die in two years."
You know? And then at the end it kind
of progressed pretty rapidly.
But, I mean, thetimeline's a little fuzzy.
But, towards the end, it just really
spiralled pretty quickly.
And, you know, it was a lot of,
she became quitedifficult to keep at home.
(15:59):
My stepfather was having tocall the ambulance quite a lot.
She was very violent.
You know, she had nothad a great upbringing
and a lot of those memorieswere coming back to her.
You know, when I wouldspend time with her,
she would sometimes takemy hand and, you know,
and say things to me
and I was like, oh, you think you're a,
you think you're a little kid again.
(16:22):
She was kind of having a lotof memories from that time.
And, that was also really hard I think
because, you know, to be takenback to a time for her which
was so difficult.
And to have no control over,
It's not like you say, "You know what"?
"I'll go and distractmyself with something else".
Like your brain is rippingyou back into that time
and you are stuck there.
(16:43):
And I think for her that was really hard.
So, seeing some of that,that stuff was really tough.
And yeah, it was really just,I think just watching the
out-of-controllness ofit for me, you know.
My father's situation was very different.
It was a quieter experience.
But my mother's was very, aggressive.
(17:05):
It was very much like she was being ripped
around in this situation.
It was physical.
She, you know, would kindof bundle up in the corner
and sort of rock back and forth.
She would be violent.
She would, you know, shereally did feel like somebody
who was being torn from left to right
and was just stuck in the middle of it.
(17:25):
- Was your mum violent towards you?
- Yeah, yeah. She didn'tmean to be. (Yeah)
In, in her mind,
I think it was just like she,it, it all felt involuntary.
You know? It all just felt like shewas just doing
whatever her body was telling her to do.
And, you could see that she regretted it.
You know, she knew who I was.
She didn't want to be doing that to me.
(17:47):
But, that was kind of howit was manifesting for her.
- And often the nearest anddearest is the one that you (yes)
lash out at.
- Of course.
- Did you, did you have anyparticular techniques
that you thought were good
as a calming influence on herat those moments when she was
at her most stressed and angry?
(18:07):
- I'm pretty good at a comedic left field
you know, (laughing).
In the weirdest of terrible moments.
(Yeah) I'm pretty good at going out with
something that...
- The gallows humor (with the)
- Yes, the gallowshumour (that's it, yeah).
And my mum was very muchthe same type of person. (Right)
And, sometimes, depending on
where (it worked) shewas, it would work. (Yeah)
(18:30):
And a lot of times inthose moments, you know,
I would say something
and she still, she stillhad humour till the end.
(Music)
- I don't know how youthink about this now.
I guess, you know, whenwe are recording this,
my Dad died just a few weeks ago.
And I think I'm only just starting to
(18:51):
maybe recognise the, amount
that this was weighing onme emotionally and mentally.
And really only just in the process.
Right at this minute, takingstock of all of that.
How do you, with thebenefit of some hindsight,
at least in relation toyour mum, think about it?
- I, I dunno how I stillmanaged to get everything done.
(19:14):
Because one of the things I, I thought
and a lot about my mum
and my dad, is that my mumwas sort of, you know,
it was late twentiesand through my thirties.
My father was through mythirties into my early forties.
- God, you had a lot.- Yeah, I, I used
to say a lot during that time.
I am living the life ofa 60-year-old, right now.
Because I'm taking, you know,I'm taking care of both,
(19:35):
you know, I was the onlyperson here for my father.
My mum did live in adifferent state and had care.
But I was, you know,constantly kind of there, and,
and thinking about her, you know?
And I think that mental energy.
I feel like the bestnight's sleep I had was
the night she passed away.
Because, I felt like Icould just relax (Yeah).
She's okay. She's all right.
Every day, up to that point, Ididn't feel she was safe.
(19:58):
I didn't feel she was okay.
I didn't feel like, you,I knew she wasn't okay.
And, you know, so thatwas really hard because
you're, you're alsofeeling incredible guilt
for being away, and not being there
a 100% of the time.
But I was really tryingwith both my parents,
to, manage my life,
(20:20):
as best I could through that time, because
I was conscious, and Ihad seen a lot of people
in that situation wherethey do give everything up.
And I feel like that isan amazing thing to do, but I
was conscious that Iwas, I'm in my late twenties,
my early thirties.
My career is not established.
Financially, I need to build stuff up.
I want to have a family.
(20:41):
At that stage I was like, I want to try
and, you know, meet somebody.
So I was like, I have totry and do all this stuff.
- This is crucial stuff (Yes).
- It's crucial because what I...
- You get this wrong.
- That's it.
- It does just change everything.
- And I did not want to getto the end of, my mum passing
and my dad passing andthink, it, now I have to start
and resent them for that time. (Yep)
(21:02):
I wanted to be like, it's fine.
This has been a reallyhellish juggle for me
that I've almost not made it through,
but it has been worthlike doing everything
at the same time.
Because, then when both ofthem passed away, I was like,
Okay, I've done everything I could there.
But also, I'm like, I can go on.
I can earn an income.
(21:23):
I can have my child.
I can, you know, do all that stuff and
I think after coming through10 plus years of that,
I needed a bit of time.
I really wanted to have a kid.
But I was like, I actuallyneed a few years off
because I've spent over a decadelooking after other people
and I don't want to look aftersomebody else right now.
And, if I had not have done allthat stuff during that time,
(21:44):
I probably wouldn't havebeen financially able
to have this kid by myself.
You know, there was a lotthat I kind of felt like I had
to keep 'up in the air' to make sure
that I didn't 'crash' whenit all sort of ended.
- You've had a lot on your shoulders.
- Yeah. It's been 'effing' exhausting.
I've got to be honest, it's so tiring.
I'm like, it is a lot, and thereis a real sense of relief.
(22:06):
You feel terrible for saying that.
But honestly, after my mumpassed I was relieved mostly
because it was just like,that was really harrowing for her.
For my father, like I had spent the last,
you know, eight years of my life,
five years when he wasin my care, still at home,
but in my care.
You know, and then when
he was in "Care", it was exhausting.
- How do you suggestJim thinks about this?
(22:28):
Because he's worried about his beautiful
daughters and his son. (Mm)
- And there's a lot of love. (Mm).
And there's this desire to help,
but then there's also a desireto, not burden people.
- Yes
I don't want to speak for you, but
- That's what you talked about.
- What we've talked about is together...
- And Ty, your husband as well.
- Yeah, that's exactly how I feel.
- I think the fact thatyou feel that way is in
(22:50):
and of itself enough, to begin with.
Because sometimes, likemy father, bless him.
Loves a guilt trip, wasn'tthe kind of person that was,
"Let me not burden you". (chuckling)
You know, was very much thekind of guy that's like,
I feel like your, (norcan you) Yeah, exactly.
I feel like you're supposedto be burdened by me.
So, if you could (Yeah, I get that.)
give up everything else, you know.
So, my mother on the otherhand, was fighting something
(23:11):
that was really had a grip of, of her
and she was always trying her best.
And in that environment you're like,
I'll do whatever youwant, to be here for you.
So, I think that outlook in
and of itself is likeamazing for somebody.
The only thing that I would say
that has been incrediblyhelpful, my mother was like this,
but she kind of couldn't do as much.
My father was completely theopposite of this. Is like,
(23:34):
"Do what you can to help themto do what they need to do".
For example, with my father,would not have a conversation
about even thinking about
(a) getting people in during the day
on the days that I couldn't be there just
for me to have somebody to check on him.
"No, not interested inopening the door to somebody.
No, I don't want anybody to be here.
I only want you to be here."
(23:55):
So, that then puts an incredible amount of
pressure on you as aperson because you're like,
Okay, well should I do,should I be going to work?
Should I be there with youall the time? Is it okay?
You know? And then of course at the end
of the conversation whenhe finally lets somebody in
and he thinks they'relovely and he's like,
why didn't we do this before?
And I'm like, thanks forthe nine years of punish. (Yeah)
- It's all your fault.(background laughter)
- So, it's taken me toget to the point where
(24:15):
you're like, you see,"I'm not going to send a
serial killer in tohere to look after you".
I'm not going to like, justhelp me, help you. (Yeah).
And communication in thatregard, like you feel
so connected to your parents.
Like you seem like avery open, honest person.
I didn't have a huge amount of
communication with my parents.
I wish my father had been like,
(24:36):
Oh, I'm really struggling with it.
Like the moments I feel wefelt most connected was when he
would tell me, "I'm scared".
- And when he needed you, I suppose.
- Exactly. And there were a few moments
where he would be really vulnerable
and he would show me he's really scared.
- That's what breaks myheart with a lot of it,
and, and some of the storiesyou told us about with your Dad
and seeing your Dad when hewas so sad at times, you know,
(24:59):
and frightened, and asa child, then you have
to become the adult in thesituation and comfort them.
I think that's so sad to hear about
and to, to watch for people.
- I know, and I get thatyou wouldn't want to do that,
like to your kids, because I feel the
same way, you feel likeyou want to protect them
but, at the same timeit's, it is a privilege.
(25:20):
It is a privilege. (Yeah). It really is.
Like, and I feel like yourkids would feel the same thing.
You want to be the person that is there
for somebody in thissituation that they love.
Like, it's genuinely one of the things
I'm most proudest ofdoing in my life. (Mmhmm)
So, I think that's an importantthing for your kids to have.
(Music)
(25:44):
- Tell me about your Dad.
- Oh, good old Ronnie C, Mate, mate.
- God, dementia gave youa good kick-in didn't he?
- Tell you what. Oh.
Sometimes he would behave in certain ways
and people would be like,oh, it's the dementia.
I'm like, mate, he's beenlike this since 1937. (laughing)
So no, it's not the dementia. Yeah.
(26:05):
- It's funny you say that.because I'd tell mum about
my, my parents were not togetherfor a very long time. (Yes)
And I'd tell mum aboutthings dad was doing or saying
or what they were sayingabout the illness.
And mum was like, he was
like that when I was married to him.
- Correct. (laughing)
That's the thing. They'refundamentally still the same
person, you know.
And some of the stuff, like my dad,
(26:25):
- You do have to use it to youradvantage though sometimes,
because I do say to Ty,
"Its the Alzheimer's", youknow? (Yeah) (Laughing)
- When, when it's appropriate.
- Yes. So, my Dad...
- He's going to hear this.
- I know he will.
- Truly, but my Dad, I mean right
until the bitter end, could guilt trip
like nobody's business.
And I'm like, oh, you'reforgetting a lot of stuff,
but not how to really dig the
(26:46):
heal in on the guilt, you know?
So, yeah, Dad, it wasalmost honestly the day
that my mum passed away my,
I said my Dad picked up the slack.
- Yeah, right.
- And, you know at that point
I think he was more aware of the fact
that he was kind of not managing things.
But, also it was quite hard because my
Dad was very much, a'stick my head in the sand'
(27:06):
kind of person.
So, I couldn't really work out whether
'Are the bills not getting paid'?
because dad just lovesto shut the door on life
and go like, "that'll sort itself out".
Or are they not being paid?
because dad doesn't knowhow to pay the bills.
So yeah, then we sort ofwent through the process of,
of getting him testedand that kind of stuff.
And, his was a much quieterexperience than my mother.
(27:27):
Like, I mean, he was alwaysa very solitary person,
you know, liked his own company.
And when we, even when wemoved him into the home,
Everybody, the people kepttrying to pull him out
and get him to do activities
because of course, you know, they don't
want anybody sitting in their room.
And I was like, "Actuallythat's the happiest
place that he could be, you know"?
- He just likes it.
And, and sure enough, anytime
that they dragged him outthere, he'd turn around
(27:48):
and say to them, "Whyhave you brought me out
with all these old people"? (laughing).
It was like, look atthe mirror mate. (Yep).
- So he was kind of,quite, it was really more a,
a difficult thing for me emotionally
because he was just ahard person to care for.
And, I think sometimes when you're looking
after people that you love,
(28:10):
relationships are complex.
You know, it's not like, "Ohwow, we've had such a close,
wonderful, bonded relationship for years
and now I'm stepping into do for you what you...,
- That's the dream, yeah.- What you exactly did for me."
You know, sometimes you'restepping into a situation
where you're like, well, I'm turning up
and I'm going to do this for you.
But, sometimes I wonder, doyou deserve it?
(28:32):
- You'd do it for me.
- Yeah, exactly.
- Well, there's, there'sobviously a lot going on here,
different parents, differentkinds of relationships
with both of them.
And obviously you're trying tomake sure that you're looking
after yourself in the midst of all of it.
How did you cope? How didyou get through it all?
- Honestly, I do feellike I have a very high
(28:52):
threshold, for what I can manage.
What's the like, functioning,alcoholic version of this? (laughing)
- Yeah. You're a functioning carer.
- Yeah, I'm a functioning carer.
You know, like I, I just cankeep getting things done.
I think if, if they justneed to happen, well, it just
needs to happen, you know?
And that's not to saythat I'm not exhausted
(29:14):
But I don't think I, I'mnot really one that sort
of sits there and wallows in the situation
and is like, it is what it is, you know.
And there are also,you know, as I mentioned,
there are benefits to doing this.
And I think the valuesof the person that I am.
I do remember having aconversation with my therapist.
I had many over the years asI was going through this time.
And that I would alsosay is one of the things
(29:36):
that got me through, massively.
- Getting support.
- Getting support, a 100%.
- Which Dementia Australia provides,
is an incredible supportline that you can call
24/7 and you can get accessto counselling through that.
- Yes. Having a professionalto talk to throughout all
of this period, for mewas really important.
Particularly, the stuff withmy dad because I found,
(29:57):
because that was my responsibility.
I was the sole person lookingafter all of that stuff.
But I remember I had acouple of conversations
about opportunities to potentially move
for work, for life, for those things.
And honestly, I said to mytherapist, like, I do feel like
I'm really giving up a lot here.
(30:18):
And, I don't have any, like,
I don't have much choicein terms of what I can do.
Like I could, if I've had some
great opportunity open up overseas.
- You couldn't really take it.
- I couldn't really take it.
To be honest, I couldn'treally go on holidays
for a long time, becauseI didn't have anybody
here to look after dad while I was gone.
So, I didn't really go anywhere.
And, there was a part ofme, I said to him like, Oh,
(30:39):
I feel like it, he, hedoesn't deserve it sometimes.
Like, does he reallydeserve me "canning" this
part of my life? (Mm).And she said something...
- I mean, it is the prime,that prime time? (Yes, yes).
- And she said somethingto me that really, really,
resonated, and that was,
"It's not about whathe deserves, it's about
what your values are".
And your values are,
(31:00):
you could not leave somebody like this.
And go and do something like that because
you would never forgiveyourself for doing that.
So, it doesn't matter thathe doesn't deserve it.
It doesn't matter that he drives you nuts.
It doesn't matter that he makes you
guilty every day for doing this.
You are the person that wants
to keep showing up despite that.
And to say, "I can keepgoing through this".
(31:21):
- In hindsight now, looking back. (Mm)
Would you have changed anything?
- No. Nothing. Nup.
I'm really glad for everything.
I cannot, the one thing I cannot deal
with in my life is regret.
Because you can't do anything about it.
You can't go back in time.
And I was like, I cannot regret anything
because then I will hang ontothat for the rest of my life.
(31:42):
But if I give this 150%
and they both go, I canmove on with my life.
And that is what has happened.
I, I just feel like it is a privilege.
I honestly, I have no single regret.
I don't wish, I mean, do I wish,
I had a differentrelationship with my parents?
Maybe, but like, we couldhave, maybe we'd never talk
and I wouldn't have anyrelationship with them
(32:03):
and things could have beenfundamentally different.
Like I did have a difficulttime with both my parents
because of this, but it was,it connected us in a way
that I might not have everhad if they were both well.
(Music)
- Thanks again to Rachelfor sharing her experience
of caring for her parents.
(32:24):
- Yeah. I didn't expect Rachelto get quite so emotional.
I mean, I knew it hadbeen a tough time for her, but
- Incredible.
- She's such a together person.
- When I see her at work, younever really contemplate
how much someone's dealingwith something like this
outside of work hours.
- She just lifts you up,just the way she talks, you know?
- And be able to keep a sense ofhumour throughout it as well.
(32:46):
- Absolutely. I thinkyou've got to hold onto
that humour the whole way through.
- Yeah. Critical.
(Music)
Now, if you can reallyrelate to Rachel's story
and you want some practicaladvice about caring,
there's actually a bonus episode
which goes with this episode.
- You'll hear from Kristen.
One of our advisors on DementiaAustralia's free helpline.
(33:08):
Kristen and her colleaguesare always keen to help out.
And helpline's available 24/7.
So, if you need someone to talk to.
- They're the people to ask.
But you can also find
that bonus helpline episodewherever you listen to podcasts
or on the Dementia Australia website.
You can also call the helplinedirectly for tips and advice.
It's 1800 100 500.
(33:30):
That's 1800 100 500.
- Make sure you arefollowing Hold the Moment
so you don't miss any ofour episodes on Caring.
You can also go back andlisten to series one, anytime.
(Music)
Hold the Moment is a podcastfrom Dementia Australia
(33:51):
produced by Dead Set 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 Macdonald.
The Executive Producers areKellie Riordan and Gia Moylan.
The Producers are Madeleine Hawcroft
(34:11):
and Liam Riordan.
Production Manager is Ann Chesterman.
Sound Design by Ryan Pemberton.
A special thanks to the wholeteam at Dementia Australia
and to everyone who sharedtheir stories on this podcast.
(Music)
(Music)
(34:33):
(Music)
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