August 19, 2024 • 32 mins
“I was diagnosed early, so I got what I call my ‘active dying plan’ out of the way. And now I’m on my ‘active living plan’ and my adventure with dementia.”
Pam was diagnosed with primary progressive aphasia in her late 50s. Although the diagnosis at such a young age was a shock, Pam wasted no time making arrangements for her own funeral so that when the time comes, her family can celebrate her life the way she prefers.
For Hold the Moment co-host Jim Rogers, the process of getting his paperwork in order started with a long, reflective walk around the Glebe foreshore in Sydney with his husband Tyler. But once the big picture was planned, how did Jim start the necessary legal processes to make sure that big picture would come to life?
Professor Nola Ries can help. She’s a co-founder of the Dementia Law Network. She explains the common (and sometimes confusing) terms you’re likely to hear as you start getting your affairs in order.
Dementia Australia also has a webinar on Future Planning you can watch online, plus other resources to help get your affairs organised.
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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 Liam Riordan. Sound design by Sean Holden. The executive producers are Grace Pashley 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.
Dementia Australia acknowledges and appreciates the support of the Australian Government for this initiative.
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Transcript
Episode Transcript
Available transcripts are automatically generated. Complete accuracy is not guaranteed.
(00:00):
- Hello, my name is Kevin.
I am a First Nations advocatewith Dementia Australia.
For more than 50,000 years,we have come together
to trade knowledge, tolearn, and to teach.
Today, we joined tokeep up that tradition.
So with that in mind,we now pay our respects
to the traditional owners,to Elders past and present,
to those First Nationspeople joining us here today.
(00:31):
- Good day guys. Goodmorning. How are you?
- Yeah, well, thank you.
- Yeah. Morning.
- How do you feel being back in Sydney?
- Raises quite a lotof emotion, I suppose,
because you contemplate on the decisions
you made to make a move.
But yeah, we love Sydney,made a lot of good friends
in Sydney as well.
- Yeah, it takes a few yearsto get established in a place,
(00:53):
and so, we're in Brisbane now,
and we've been therejust under two years now.
- So just explain to me,who the hell are you?
- I'm Tyler, so I'm Jim's husband.
We've been married for 11 years.
- When I was diagnosed
with younger-onset Alzheimer's in 2021,
(01:13):
I was living in Sydneywith my husband Tyler.
We knew straight away we hadsome big decisions to make,
like whether to stay inSydney or move to Brisbane,
so our kids and grandkids could be closer.
There's so many life changingthings you have to think
through when you get a dementia diagnosis.
You have to totally rearrange your life
(01:34):
to new circumstances, whichcan feel pretty overwhelming.
That's why Ty and I would usually
head to our favourite park,just to pause and take stock.
- You got your coffees. How was the walk?
- It was good.- Yeah, yeah.
Bit over cars, but still a beautiful walk.
- Glebe foreshore is abeautiful spot, obviously,
(01:54):
and this must bring backa lot of memories for you.
I know when my dad wasdiagnosed, that was, you know,
a prompt for us to move him up to Sydney,
and to be closer to thecare that he needed.
For you guys, are you sort of reflecting
on that moment in timenow that you're back here?
- Yeah, I think, certainly,when we lived in Sydney,
(02:16):
we used to do this walk every single day.
So it was really, certainlykey and pivotal for us
prior to Jim's diagnosis,
but also, more so post the diagnosis.
- Can you describe what it'slike when you are confronted
with some really big anddifficult news like this
(02:37):
to then have to make a whole bunch of
really consequential life decisions
that might shape therest of your existence?
- I think we were lucky in the fact
that we had done major moves prior,
so we'd done internationalmoves and interstate,
(02:59):
so we'd had a bit ofapprenticeship for it.
- What about the wills,and the power of attorney,
and power of guardianship, all that stuff?
- That's just horrific, whenyou are young, as I feel,
when you are young, tobe sat down and told,
"You need to get your affairs in order,
(03:20):
and do it sooner rather than later,
because there's nopredictability about the amount
of time you have that youcould lose that ability."
It's just really confronting.
It's just something you don't think
you're going to have to do,
and it was really hard, wasn't it,
(03:40):
to actually think how to doit, who to involve in it.
One of the big things you'retold after your diagnosis
is to go and get your affairs in order,
but what does that even mean?
And how'd you go about it? I'm Jim Rogers.
- And I'm Hamish MacDonald.
(04:01):
This is Hold the Moment, apodcast from Dementia Australia.
It's full of real storiesabout life after diagnosis.
We are looking at howto make planning your
future with dementia,things like your will,
power of attorney or advancedcare a bit more empowering.
You're going to meet a woman named Pam,
who's designed her very ownbright blue custom coffin
(04:21):
as part of her "active dyingplan", as she calls it.
You'll also hear from alegal expert who's going
to break down thepaperwork process for you
and make that a bit simpler,including what your options are
if you don't have close family around
to help navigate your affairs.
I know that's somethingwe've had to do with my dad
following his diagnosiswith Lewy body dementia,
but I often wonder what happens
(04:43):
if he didn't have closefamily or friends around
to help him with that stuff?
- And I'll tell you what thishas looked like for me so far.
Let's go back to the partwhere my husband, Tyler and I,
had a lot of these big conversations.
- When we had thediagnosis from the doctor,
(05:06):
and then we were given healthspecialists to, you know,
help us navigate throughthe next steps, you know,
and I think I remembergetting a sort of checklist
which had the steps andthings that you need to do.
It seemed very straightforward,
we'd already done our wills to a degree,
but we sort of finalised those with...
(05:27):
- I think it was just very emotional
because it just felt very real.
- Are there particularquestions or particular things
you had to think about thatreally stood out for you?
- I think the worst thingfor me was at what stage
would you go into care,or what stage would,
when you feel as thoughit would be appropriate
(05:49):
for them to say, "Weare not coping anymore,
he needs to go into a home."
And also, who would sign off on that?
Those confronting discussions were
it just felt a bit out of body experience,
as though it wasn't real,
and I think you're in denialfor a long time. Truly.
(06:10):
- How did you have that conversation?
- I think we had it with Daisy, didn't we?
- Daisy's your daughter?
- Yeah.
And so, she's listed as well,
so I think it was very challenging
to talk about somebody that'swas clearly, at the time,
(06:32):
in good health in the respect of,
you know, when you look at that person,
there's nothing wrong with them.
It's not like when somebody,you know, has cancer
or something like that wherethey've gone through chemo,
and you can visually see theimpacts, I think where we,
we had to kind of take a stock check,
(06:54):
I think, almost, forwant of a better word,
around talking about something that we
didn't even want to contemplate,
so that was the challenging part,
because you are talkingabout, "Okay, well, you know,
if James gets to the pointwhere you can't swallow anymore,
do you have the DNR in place?
The do not resuscitate at thatpoint? When does it kick in?"
(07:15):
So, there's all these differentelements when it comes to
the impacts that Alzheimer'sdisease has on somebody,
and what that will looklike in the future.
- And it's very hardto convey it to anybody
unless you really go through it.
So for me, anybody whogets this diagnosis,
or somebody who caresfor somebody who's going
(07:39):
through this diagnosis,it's just horrific.
That's the only word I can really use,
and that emotionalrollercoaster it sends you on
is devastating.
- How do you navigate, Ty, the emotional,
and the, you know, the obvious feelings
that you would have associatedwith decisions like that,
and the practical, the pragmatic?
(08:00):
- I think I'm quite an emotional person,
so anytime we sort of spoke about it,
you know, it's upsetting.
And so, with that emotion comesthe tears and what have you,
so I think with the pragmaticside, when we looked at
doing the wills and the power of attorney,
(08:22):
and the enduringguardianship, we decided to do
an injuring power ofattorney so that, you know,
James can carry on as normalfor as long as he can,
and then when he can't,I can just step in.
- Now that you have hadsome years to think about it
and settle with these ideas,
how do you think todayabout the possibility
that at some point,Jim might actually need
(08:45):
to be in residential care?
- Again, across that bridgewhen we come to it, I kind of,
I don't think aboutthings like that too much.
I don't dwell on things.
I think we enjoy what time that we've got,
and it's important about today,
like we're here in Sydney today.
- You would never have thoughtin a million years we would
(09:06):
be sat here talking to Hamish about this,
and a diagnosis like it's so far fetched,
it's just too ridiculous.
And I think also a lot of these things
we don't really explore too much now,
because we are so focusedon trying to enjoy the now,
and I think we're over the moon,
because I'm doing so well at the moment.
(09:27):
So I think we thought, shit,this is going to really happen
you don't know the speed of it.
So I feel really good,
and I'm doing everything I possibly can,
vitamins, and sleep, and meditation,
and everything you cando to try and stay good,
so I think we're just tryingto enjoy the now, aren't we?
(09:56):
- My name is Pam Eid.
I live in a small countrytown called Granya, in rural
Victoria with my husbandBrian, who is my carer,
and absolutely wonderful, andI'm so very lucky to have him.
Next month, we've been married 43 years.
- Pam was diagnosed with aform of younger-onset dementia
(10:17):
after a friend noticed her word recall
wasn't what it used to be
- Every day, he wouldcomment on my speech,
and my husband finishingmy sentences for me.
And I said, "You be together 40 odd years,
you too can talk like this."
And then after he left, we hadfriends travelling through,
and on the second day, she said,"Can I ask you a question?"
And I went, "Yes."
(10:39):
She said, "Would you likeme to finish your sentences
for you, or wait untilyou can find the words?"
It was very confronting.
And then, I immediately, that day, rang
and made an appointmentwith my GP who understood
after I'd also had a periodof apathy earlier in the year,
where nothing gave me anypleasure, I had no sense of joy,
(11:03):
whether it be food, or surroundings, or,
anyway, we put two and two together,
and he got me a referralto the cognitive memory
and dementia area in Albury,
and a speech pathologist came out,
and she was heavily pregnant,
and she said to me when she left that,
(11:23):
"When I get back from maternityleave, I will see you."
I thought, "Oh, she'spicked up on something."
I'm 60 now.
- Yeah. So, how old were you when...?
- 58. So, and to be honest,
I'd never heard of younger-onset dementia.
I'd never heard of primaryprogressive aphasia,
(11:46):
so it was all new territory to me.
So yeah, so I got thediagnosis and that was it,
but I'm very lucky becauseI was diagnosed early,
I find that as an advantage
because that allowed me todo what I did to get my,
I call "my active dyingplan" out of the way,
(12:06):
and now, I'm on my active living plan,
and my adventure with dementia.
- Which is a great slogan.
- I like it. I think well,I'm going through territory
that I've never been through before,
so why not have an adventure with it?
The progression of primaryprogressive aphasia, for me,
(12:29):
means that my languageskills will deteriorate,
my comprehension willgo, my ability to read,
to actually comprehend what I'm reading,
to form the memories of whatI'm reading, and looking at,
and experiencing will go.
And then, it will progress to a stage
(12:50):
where I honestly don't want to be at.
I was given the wrong information, not
by Dementia Australia,but by my GP at the start,
and by other people whosaid three to five years,
you won't be able to talk, youwon't be able to communicate,
and all these things that go along
with my line of dementia.
So I had a penultimate 60thbirthday party, which was huge,
(13:12):
and I was surprised how manyof my friends didn't know
what penultimate meant.
So I got all these 60th birthday cards
and it's like, "I'm only 59 this year."
But it did, it allowed meto explore all the options,
and that's what I said,getting my active dying plan
together, and I don't have to worry
because that, to me, isthe only thing I can give
my loved ones, my carers at the end
(13:34):
because I won't be able todo anything to help them,
so I can help them by nothaving to worry about any
of those things that need to be done.
- You mentioned what youcall the active dying plan.
What do you mean?
- Getting all my affairs in order,
I had my advanced care plan done,
my best friend is a nurseand teaches nursing,
(13:56):
and she and I sat down, andwe spent quite a few hours
doing the advanced care plan,
which I recommend everybodygetting done, no matter what age
or whether a dementia diagnosis or not.
- What's involved in that?- Is looking at everything
that you want done, andalso, if you're hospitalised,
whether you want to bekept on life support,
(14:16):
if it is a matter of when you come out
of, say, having a stroke,if you're going to retain
what you had prior to having a stroke,
or if you are really impacted,
and will have no quality of life after.
So all those things that actually,
whether you want music in your room,
whether you want to apriest, minister come in
(14:38):
and administer to you,to give you last rights,
everything is covered inthe advanced care plan,
and lodged that with my doctor,it goes on to the record,
and therefore, anywhere,if I have a car accident
and something comes up,
then they know exactly what I want done.
So I got my will, my enduringpower of attorney done.
(15:02):
- What prompted you to actually go ahead
and organise this advanced care plan?
Was it something yourneurologist said to you,
or was it something thatyou were advised to do?
Or did you get that diagnosis
and just go, "Right,what am I going to do?"
How did you come to that decision?
- Because my best friendwith her nursing background,
(15:23):
she knew exactly what peoplego through at the end,
you know, in really severecases of, not just dementia,
so as I said, whether it bea car accident, or any way,
and it was like, really,
it would be best that you do this now
while you are still capable of doing that,
because as we know, with VADin Victoria, once you are
diagnosed with a neurologicaldegenerative disease,
(15:47):
you can no longer make those decisions.
- And also there's a timescale where you don't know
how long you've got to make that decision.
You don't know, I wastold three to five years
I wouldn't be able to verbalise,
I wouldn't be able to comprehend things.
So. that was quite a quickdecline that I was expecting,
and I'm declining very slowly,which I'm very grateful.
(16:10):
- And there's a lot of anxietythat comes with that initial,
you know, concept of thinking, "Christ!"
- Very quickly, I'm not goingto get to my 70th birthday,
I'm not going get to my50th wedding anniversary,
which was really important to me.
I want to get to my 50thwedding anniversary,
and I want to be able toremember it and to celebrate,
but knowing that I won't is hard,
(16:32):
and my husband doesn'tdeserve to go through
what he's goes through.
And in my opinion, people, the carers,
the loved ones of those withdementia go through so much,
and they need so muchsupport that isn't given,
or they can't reach out to orit's difficult, the government
- Or don't know where to reach- Or don't know where to.
(16:54):
That's where, once again, Ifound Dementia Australia great
because they can put you intouch with the places that
are necessary.
So yeah, so getting that all together,
and also, having a solicitorthat knows this is what
you'll need to do so thatwe can get financial power
of attorney, or whatever it'scalled, and all that organised
because now, I can sit back and say,
(17:15):
"I've got everything done.
You don't have to do anythingwhen the time comes."
- So one of the things you'veorganised ahead of time
is your coffin. Tell us about that.
My niece's now fiance isa scrap metal merchant,
and goes to Melbourne, andhe pulled up at a place,
and there was this huge $8,000coffin with a dented lid,
(17:38):
and sent a picture and said,
"Would Auntie Pam like this?"
And Auntie Pam's gone,"Yes, yes, yes please,"
- But decoration wise, youwere showing us photos before,
can you describe it?
- So he took all the lining out
and all the rubber sortof ceiling sections,
and everything out, and we tookit into him as a bare bones,
if you'll excuse the pun.
(17:59):
(Laughs)
And he painted it for me,and that was his gift to me.
And anyway, we got a beautiful,
my husband found, atSpotlight, this blue velure,
Royal blue velure.
But one day, we were in Kmart,
and we saw this cushionthat says "reserved",
so I had to get that,so that's in my casket,
(18:22):
and what I did for the handles,I left the handles the gold,
because this is a metal casket,
and this casket weighs, I think 110 kilos,
and I know when I get in it,I won't be weighing that much,
and I don't now, by the way,
but he's been a Melbournefootball club supporter
longer than I've been alive,
(18:43):
so I've got the end handlespainted red for him,
and he didn't know that,
so when we went to pick it up,he was really very chuffed,
but that was my homage to him.
So we took it home andre-lined it, and set it all up,
and yeah.
(19:04):
- Do you feel as though,because you've done a bit of
that process, your housekeeping's in order
and you feel a bit incontrol and on top of things?
- Yes, yes, definitely.And when I look at it,
it's covered by a royal red blanket,
and when I lift theblanket up to look at it
and open the door and justsee the beauty of the colour,
it makes me smile.
(19:25):
I know it might sound silly,but knowing that's there,
and knowing that that iswhat I will be in, I'm happy.
- Why are you unafraid to look at
the very end of this?
Because for many people,I imagine that's something
that they might prefer to look away from.
- My mother had an incident once
(19:46):
where she had a near death experience,
and she said that shesaw all her loved ones
on the other side of a river,picnicking and being together,
and they said, "It's not your time",
so she came back, andshe relayed that to me.
And I like to think thatwhen I die, I'll be reunited
(20:09):
with all the loved ones that I've lost.
And I think the only way tolook at it is, hopefully,
if nothing else, I'll be somewhere
where I won't be suffering,
where there will be no suffering,
and I'm a heathen atheist,
I'm not a religious person at all,
but I just like the thoughtthat I'll get to see those
(20:30):
I love again and not be,
and I will be able to talk, I will be able
to verbalise what I want to say, so yeah.
- A lot of that as wellcomes from the positivity you
exude really, thatyou've turned this into,
instead of dwelling too heavilyon all the bad side of it,
you found a way to focuson, again, taking a bit
(20:52):
of control really, and beingin charge of the process.
- I think if you let theprocess take control of you,
you are going to get terribly,terribly bogged down.
- You spiral- Yeah, you'll spiral.
And it's easy enough to do.
And yes, every day isn't a brilliant day,
but if you can focus on one thing,
(21:15):
and as I said, if you knowthat whatever makes you happy,
if you look at that andjust allow yourself,
even if it's a minute to be happy,
because we all deserve to be happy.
Just because we get dementiadoesn't mean that we should
be locked away and, you know, forgotten.
And that we should liveamongst and let people know
(21:36):
because, really, I seeit's such a taboo subject.
You see so much on breastcancer and cancers,
and everything else,because there's a cure.
Dementia, there's no cure. Sowhy should we talk about it?
Why should we not lock peopleaway so we can't see them?
So we don't know that they're struggling,
we don't know that they need help.
(21:57):
We don't know that they liveamongst us, which we do.
- I am Nola Ries, and I'm aprofessor in the faculty of law
at University of Technology, Sydney.
I'm also a co-founder ofthe Dementia Law Network,
(22:19):
and I also lead research
with an ageing researchcollaborative at UTS.
- Throughout thisepisode, we've heard lots
of legalistic terms.
So Nola, let's start with some explainers.
I guess we all know what a will is,
but what does it actually do?
- The will is the documentafter a person has died,
indicates how their assets and properties
(22:41):
should be distributed to beneficiaries.
- And so, why exactly is that important?
- The importance of doing itearly is to avoid problems
after a person has died,
so if a person dies without a will,
then legislation steps in, basically,
and says, "According to thelaw, this is how your assets
(23:02):
will be distributed to people."
So it might be that theperson would really like
to make different arrangements.
There are particular charitiesthey might like to make sure
that they make donations to them.
They want to make sure particularpeople within their family
or friend network are beneficiaries.
So it just makes sure the persongets their own choice about
(23:25):
how their assets aredistributed after their death,
and means that governmentbodies don't need to come in
and deal with that.
- And what is an enduringpower of attorney?
- An enduring power ofattorney typically refers
to financial power of attorney.
So that, an enduring meansthat the person appointed into
(23:46):
that role acts even after
the person has lost the capacity
to make particular financial decisions.
So it's an enduringfinancial power of attorney
is someone you would trust tomanage your money and assets
for you in the future, in the event
that you are not able to do that.
- And what might that meanin the case of someone
(24:08):
living with dementia?
- It might mean that theenduring financial power
of attorney helps to manage money,
if the person with dementianeeds home care services,
for example, the financialpower of attorney
would make arrangements tomake sure those services,
the fees are paid.
(24:28):
It might mean managing billsfor other kinds of things,
insurances, if a personperhaps would want a home sold,
insurances, if a personperhaps would want a home sold,
if they might need tothink about moving into
a residential accommodation,
then a financial power ofattorney would deal with all
of those kinds of matters.
(24:49):
- And what about an enduring guardian?
- The term for this rolewill vary across the states
and territories, but theenduring guardian is somebody
who would makehealthcare-related decisions
for an individual who's notable to make those decisions.
- What do we mean when wetalk about advanced planning?
(25:09):
- Advanced planning refers toa broader range of decisions
a person might make, thinkingahead to their future,
so coming from a legal background,
I'm interested in legal planning.
So legal planning can includethings like naming people you
trust to be your decision maker,
(25:31):
should you lack capacity in the future
to make particular decisions,
so that can be an enduringfinancial power of attorney,
an enduring guardian who wouldmake healthcare decisions.
It can also mean makingadvanced directives,
which often are more about care,
so that fits into care planning.
(25:51):
It can also mean lookingahead and making a will,
thinking ahead to whatone might want in terms
of funeral arrangements and so on.
So there's a broad range of
future decisions a person can think about,
and then make legal documentsthat express what their wishes
and preferences are.
(26:12):
- So I imagine if you arereceiving a diagnosis,
that you're living withsome form of dementia,
that there's a lot tothink about all at once.
Do you need to make all ofthese decisions immediately,
because, I guess, one of thethings you might be considering
is how long have I got tothink this all through in a way
that is, I guess, smartand going to be right,
(26:35):
and in my own best interest?
- Getting that timely recommendation
to do planning is really important.
People who do the planningsooner rather than later
often find it an easier process,
and they've got more time to do it.
At the same time, itcan be daunting to think
about all of these decisions,
(26:55):
so any task that'soverwhelming, it's good just
to think about breaking itdown into smaller components,
but then also think aboutwhat's the point of doing all of
this legal planning, goingoff and seeing a solicitor?
And it is really about supportingthe person's own choice,
their control over the future.
(27:16):
So there's, we know that whenlegal planning is done well,
it has so many benefits.
People feel relieved that they've done it,
that the person living withdementia as well as those
around them, and it doesavoid problems in the future.
So it does avoid unwanted medical care.
It does reduce the risk of the person
(27:37):
being financially exploited byan enduring power of attorney
who should never have beenappointed into that role,
or who doesn't understand their role.
It can also avoid disputes over a will.
So, after a person has passed away,
there can be quite difficultlegal problems within families.
(27:57):
So the more the legal planningis done well at the time,
the more it avoids allof these future problems.
- A question I've oftenasked myself, you know,
as we've gone through things with my dad,
is what happens if youdon't have four kids
that can play these roles?
Like what do people do whenthey don't necessarily have a
close circle they can relyon to play these functions?
(28:22):
- I hear time and again howpeople in those circumstances,
they're not able to takeup their legal rights
because they don't havesomeone they trust.
So, in that instance,it is helpful to think
of broader networks that people have,
to think about friendshipsthat, there may be somebody
(28:42):
who would be a suitable personto take on some of those
roles in terms of thefinancial decision making
and management, that issomething that professionals,
a legal or accountingprofessional may act in those
kinds of roles.
So it is really important for people
to think more broadly about options
(29:05):
- And what aboutcommunication of your wishes,
or whatever it is thatyou've put down on paper,
because people might on somelevel think, yeah, I'm happy
to do that, but not necessarilyunderstand what's going to
be involved. Whose responsibility is that?
- That is certainly somethingthat the legal professional
should be encouragingthe their client to do,
(29:28):
to go away and have those conversations
with those key people,
especially the people appointedinto those legal roles.
And within interactions withhealthcare professionals,
there are opportunities to do that.
There are systems like myhealth record, and a person can,
(29:49):
if they have made an advancedcare directive, for example,
upload their care directiveto that online resource,
so that a care directive is available
to health professionalswho may need access
to it in the future.
Particularly down the track,if the person is admitted
to hospital in more ofan urgent situation,
(30:10):
then healthcare providers knowthey can look at the health
record, they can find theperson's care directive
if they have made one.
- That was really helpful to hear
that information from Nola.
It can be really overwhelming
to think about all thedifferent paperwork at once,
(30:32):
but it's good to know there'speople like her out there
making it accessible.
- Yeah, and Dementia Australiaactually has some great
resources on the website around this,
including a webinar on future planning
that you can sign up for,
we'll link to that in the show notes.
- And if you feel likeyou just need to talk
to someone about it all,
you can call the NationalDementia Helpline on 1800 100 500,
(30:55):
and speak with a trainedadvisor about your situation.
They're available 24-hours aday, every day of the year.
- Or you can just call Jim,Jim will take your call.
- Hold the Moment is a podcastfrom Dementia Australia.
(31:17):
It's produced by Deadset Studios.
You can find more episodes and resources
through the Dementia Australiawebsite, dementia.org au.
And don't forget to follow Hold the Moment
in your podcast app, soyou don't miss an episode.
The show is hosted by me, Jim Rogers,
- And by me, Hamish MacDonald.
The executive producers areKelly Ridden and Grace Pashley.
(31:41):
The producer is Liam Ridden,sound design by Sean Holden.
A special thanks to the wholeteam at Dementia Australia,
and to all the advocates
who shared their stories on this podcast.
- Hello, my name is Kevin.
I am a First Nations advocatewith Dementia Australia.
For more than 50,000 years,we have come together
to trade knowledge, tolearn, and to teach.
Today, we joined tokeep up that tradition.
So with that in mind,we now pay our respects
to the traditional owners,to Elders past and present,
to those First Nationspeople joining us here today.
(00:31):
- Good day guys. Goodmorning. How are you?
- Yeah, well, thank you.
- Yeah. Morning.
- How do you feel being back in Sydney?
- Raises quite a lotof emotion, I suppose,
because you contemplate on the decisions
you made to make a move.
But yeah, we love Sydney,made a lot of good friends
in Sydney as well.
- Yeah, it takes a few yearsto get established in a place,
(00:53):
and so, we're in Brisbane now,
and we've been therejust under two years now.
- So just explain to me,who the hell are you?
- I'm Tyler, so I'm Jim's husband.
We've been married for 11 years.
- When I was diagnosed
with younger-onset Alzheimer's in 2021,
(01:13):
I was living in Sydneywith my husband Tyler.
We knew straight away we hadsome big decisions to make,
like whether to stay inSydney or move to Brisbane,
so our kids and grandkids could be closer.
There's so many life changingthings you have to think
through when you get a dementia diagnosis.
You have to totally rearrange your life
(01:34):
to new circumstances, whichcan feel pretty overwhelming.
That's why Ty and I would usually
head to our favourite park,just to pause and take stock.
- You got your coffees. How was the walk?
- It was good.- Yeah, yeah.
Bit over cars, but still a beautiful walk.
- Glebe foreshore is abeautiful spot, obviously,
(01:54):
and this must bring backa lot of memories for you.
I know when my dad wasdiagnosed, that was, you know,
a prompt for us to move him up to Sydney,
and to be closer to thecare that he needed.
For you guys, are you sort of reflecting
on that moment in timenow that you're back here?
- Yeah, I think, certainly,when we lived in Sydney,
(02:16):
we used to do this walk every single day.
So it was really, certainlykey and pivotal for us
prior to Jim's diagnosis,
but also, more so post the diagnosis.
- Can you describe what it'slike when you are confronted
with some really big anddifficult news like this
(02:37):
to then have to make a whole bunch of
really consequential life decisions
that might shape therest of your existence?
- I think we were lucky in the fact
that we had done major moves prior,
so we'd done internationalmoves and interstate,
(02:59):
so we'd had a bit ofapprenticeship for it.
- What about the wills,and the power of attorney,
and power of guardianship, all that stuff?
- That's just horrific, whenyou are young, as I feel,
when you are young, tobe sat down and told,
"You need to get your affairs in order,
(03:20):
and do it sooner rather than later,
because there's nopredictability about the amount
of time you have that youcould lose that ability."
It's just really confronting.
It's just something you don't think
you're going to have to do,
and it was really hard, wasn't it,
(03:40):
to actually think how to doit, who to involve in it.
One of the big things you'retold after your diagnosis
is to go and get your affairs in order,
but what does that even mean?
And how'd you go about it? I'm Jim Rogers.
- And I'm Hamish MacDonald.
(04:01):
This is Hold the Moment, apodcast from Dementia Australia.
It's full of real storiesabout life after diagnosis.
We are looking at howto make planning your
future with dementia,things like your will,
power of attorney or advancedcare a bit more empowering.
You're going to meet a woman named Pam,
who's designed her very ownbright blue custom coffin
(04:21):
as part of her "active dyingplan", as she calls it.
You'll also hear from alegal expert who's going
to break down thepaperwork process for you
and make that a bit simpler,including what your options are
if you don't have close family around
to help navigate your affairs.
I know that's somethingwe've had to do with my dad
following his diagnosiswith Lewy body dementia,
but I often wonder what happens
(04:43):
if he didn't have closefamily or friends around
to help him with that stuff?
- And I'll tell you what thishas looked like for me so far.
Let's go back to the partwhere my husband, Tyler and I,
had a lot of these big conversations.
- When we had thediagnosis from the doctor,
(05:06):
and then we were given healthspecialists to, you know,
help us navigate throughthe next steps, you know,
and I think I remembergetting a sort of checklist
which had the steps andthings that you need to do.
It seemed very straightforward,
we'd already done our wills to a degree,
but we sort of finalised those with...
(05:27):
- I think it was just very emotional
because it just felt very real.
- Are there particularquestions or particular things
you had to think about thatreally stood out for you?
- I think the worst thingfor me was at what stage
would you go into care,or what stage would,
when you feel as thoughit would be appropriate
(05:49):
for them to say, "Weare not coping anymore,
he needs to go into a home."
And also, who would sign off on that?
Those confronting discussions were
it just felt a bit out of body experience,
as though it wasn't real,
and I think you're in denialfor a long time. Truly.
(06:10):
- How did you have that conversation?
- I think we had it with Daisy, didn't we?
- Daisy's your daughter?
- Yeah.
And so, she's listed as well,
so I think it was very challenging
to talk about somebody that'swas clearly, at the time,
(06:32):
in good health in the respect of,
you know, when you look at that person,
there's nothing wrong with them.
It's not like when somebody,you know, has cancer
or something like that wherethey've gone through chemo,
and you can visually see theimpacts, I think where we,
we had to kind of take a stock check,
(06:54):
I think, almost, forwant of a better word,
around talking about something that we
didn't even want to contemplate,
so that was the challenging part,
because you are talkingabout, "Okay, well, you know,
if James gets to the pointwhere you can't swallow anymore,
do you have the DNR in place?
The do not resuscitate at thatpoint? When does it kick in?"
(07:15):
So, there's all these differentelements when it comes to
the impacts that Alzheimer'sdisease has on somebody,
and what that will looklike in the future.
- And it's very hardto convey it to anybody
unless you really go through it.
So for me, anybody whogets this diagnosis,
or somebody who caresfor somebody who's going
(07:39):
through this diagnosis,it's just horrific.
That's the only word I can really use,
and that emotionalrollercoaster it sends you on
is devastating.
- How do you navigate, Ty, the emotional,
and the, you know, the obvious feelings
that you would have associatedwith decisions like that,
and the practical, the pragmatic?
(08:00):
- I think I'm quite an emotional person,
so anytime we sort of spoke about it,
you know, it's upsetting.
And so, with that emotion comesthe tears and what have you,
so I think with the pragmaticside, when we looked at
doing the wills and the power of attorney,
(08:22):
and the enduringguardianship, we decided to do
an injuring power ofattorney so that, you know,
James can carry on as normalfor as long as he can,
and then when he can't,I can just step in.
- Now that you have hadsome years to think about it
and settle with these ideas,
how do you think todayabout the possibility
that at some point,Jim might actually need
(08:45):
to be in residential care?
- Again, across that bridgewhen we come to it, I kind of,
I don't think aboutthings like that too much.
I don't dwell on things.
I think we enjoy what time that we've got,
and it's important about today,
like we're here in Sydney today.
- You would never have thoughtin a million years we would
(09:06):
be sat here talking to Hamish about this,
and a diagnosis like it's so far fetched,
it's just too ridiculous.
And I think also a lot of these things
we don't really explore too much now,
because we are so focusedon trying to enjoy the now,
and I think we're over the moon,
because I'm doing so well at the moment.
(09:27):
So I think we thought, shit,this is going to really happen
you don't know the speed of it.
So I feel really good,
and I'm doing everything I possibly can,
vitamins, and sleep, and meditation,
and everything you cando to try and stay good,
so I think we're just tryingto enjoy the now, aren't we?
(09:56):
- My name is Pam Eid.
I live in a small countrytown called Granya, in rural
Victoria with my husbandBrian, who is my carer,
and absolutely wonderful, andI'm so very lucky to have him.
Next month, we've been married 43 years.
- Pam was diagnosed with aform of younger-onset dementia
(10:17):
after a friend noticed her word recall
wasn't what it used to be
- Every day, he wouldcomment on my speech,
and my husband finishingmy sentences for me.
And I said, "You be together 40 odd years,
you too can talk like this."
And then after he left, we hadfriends travelling through,
and on the second day, she said,"Can I ask you a question?"
And I went, "Yes."
(10:39):
She said, "Would you likeme to finish your sentences
for you, or wait untilyou can find the words?"
It was very confronting.
And then, I immediately, that day, rang
and made an appointmentwith my GP who understood
after I'd also had a periodof apathy earlier in the year,
where nothing gave me anypleasure, I had no sense of joy,
(11:03):
whether it be food, or surroundings, or,
anyway, we put two and two together,
and he got me a referralto the cognitive memory
and dementia area in Albury,
and a speech pathologist came out,
and she was heavily pregnant,
and she said to me when she left that,
(11:23):
"When I get back from maternityleave, I will see you."
I thought, "Oh, she'spicked up on something."
I'm 60 now.
- Yeah. So, how old were you when...?
- 58. So, and to be honest,
I'd never heard of younger-onset dementia.
I'd never heard of primaryprogressive aphasia,
(11:46):
so it was all new territory to me.
So yeah, so I got thediagnosis and that was it,
but I'm very lucky becauseI was diagnosed early,
I find that as an advantage
because that allowed me todo what I did to get my,
I call "my active dyingplan" out of the way,
(12:06):
and now, I'm on my active living plan,
and my adventure with dementia.
- Which is a great slogan.
- I like it. I think well,I'm going through territory
that I've never been through before,
so why not have an adventure with it?
The progression of primaryprogressive aphasia, for me,
(12:29):
means that my languageskills will deteriorate,
my comprehension willgo, my ability to read,
to actually comprehend what I'm reading,
to form the memories of whatI'm reading, and looking at,
and experiencing will go.
And then, it will progress to a stage
(12:50):
where I honestly don't want to be at.
I was given the wrong information, not
by Dementia Australia,but by my GP at the start,
and by other people whosaid three to five years,
you won't be able to talk, youwon't be able to communicate,
and all these things that go along
with my line of dementia.
So I had a penultimate 60thbirthday party, which was huge,
(13:12):
and I was surprised how manyof my friends didn't know
what penultimate meant.
So I got all these 60th birthday cards
and it's like, "I'm only 59 this year."
But it did, it allowed meto explore all the options,
and that's what I said,getting my active dying plan
together, and I don't have to worry
because that, to me, isthe only thing I can give
my loved ones, my carers at the end
(13:34):
because I won't be able todo anything to help them,
so I can help them by nothaving to worry about any
of those things that need to be done.
- You mentioned what youcall the active dying plan.
What do you mean?
- Getting all my affairs in order,
I had my advanced care plan done,
my best friend is a nurseand teaches nursing,
(13:56):
and she and I sat down, andwe spent quite a few hours
doing the advanced care plan,
which I recommend everybodygetting done, no matter what age
or whether a dementia diagnosis or not.
- What's involved in that?- Is looking at everything
that you want done, andalso, if you're hospitalised,
whether you want to bekept on life support,
(14:16):
if it is a matter of when you come out
of, say, having a stroke,if you're going to retain
what you had prior to having a stroke,
or if you are really impacted,
and will have no quality of life after.
So all those things that actually,
whether you want music in your room,
whether you want to apriest, minister come in
(14:38):
and administer to you,to give you last rights,
everything is covered inthe advanced care plan,
and lodged that with my doctor,it goes on to the record,
and therefore, anywhere,if I have a car accident
and something comes up,
then they know exactly what I want done.
So I got my will, my enduringpower of attorney done.
(15:02):
- What prompted you to actually go ahead
and organise this advanced care plan?
Was it something yourneurologist said to you,
or was it something thatyou were advised to do?
Or did you get that diagnosis
and just go, "Right,what am I going to do?"
How did you come to that decision?
- Because my best friendwith her nursing background,
(15:23):
she knew exactly what peoplego through at the end,
you know, in really severecases of, not just dementia,
so as I said, whether it bea car accident, or any way,
and it was like, really,
it would be best that you do this now
while you are still capable of doing that,
because as we know, with VADin Victoria, once you are
diagnosed with a neurologicaldegenerative disease,
(15:47):
you can no longer make those decisions.
- And also there's a timescale where you don't know
how long you've got to make that decision.
You don't know, I wastold three to five years
I wouldn't be able to verbalise,
I wouldn't be able to comprehend things.
So. that was quite a quickdecline that I was expecting,
and I'm declining very slowly,which I'm very grateful.
(16:10):
- And there's a lot of anxietythat comes with that initial,
you know, concept of thinking, "Christ!"
- Very quickly, I'm not goingto get to my 70th birthday,
I'm not going get to my50th wedding anniversary,
which was really important to me.
I want to get to my 50thwedding anniversary,
and I want to be able toremember it and to celebrate,
but knowing that I won't is hard,
(16:32):
and my husband doesn'tdeserve to go through
what he's goes through.
And in my opinion, people, the carers,
the loved ones of those withdementia go through so much,
and they need so muchsupport that isn't given,
or they can't reach out to orit's difficult, the government
- Or don't know where to reach- Or don't know where to.
(16:54):
That's where, once again, Ifound Dementia Australia great
because they can put you intouch with the places that
are necessary.
So yeah, so getting that all together,
and also, having a solicitorthat knows this is what
you'll need to do so thatwe can get financial power
of attorney, or whatever it'scalled, and all that organised
because now, I can sit back and say,
(17:15):
"I've got everything done.
You don't have to do anythingwhen the time comes."
- So one of the things you'veorganised ahead of time
is your coffin. Tell us about that.
My niece's now fiance isa scrap metal merchant,
and goes to Melbourne, andhe pulled up at a place,
and there was this huge $8,000coffin with a dented lid,
(17:38):
and sent a picture and said,
"Would Auntie Pam like this?"
And Auntie Pam's gone,"Yes, yes, yes please,"
- But decoration wise, youwere showing us photos before,
can you describe it?
- So he took all the lining out
and all the rubber sortof ceiling sections,
and everything out, and we tookit into him as a bare bones,
if you'll excuse the pun.
(17:59):
(Laughs)
And he painted it for me,and that was his gift to me.
And anyway, we got a beautiful,
my husband found, atSpotlight, this blue velure,
Royal blue velure.
But one day, we were in Kmart,
and we saw this cushionthat says "reserved",
so I had to get that,so that's in my casket,
(18:22):
and what I did for the handles,I left the handles the gold,
because this is a metal casket,
and this casket weighs, I think 110 kilos,
and I know when I get in it,I won't be weighing that much,
and I don't now, by the way,
but he's been a Melbournefootball club supporter
longer than I've been alive,
(18:43):
so I've got the end handlespainted red for him,
and he didn't know that,
so when we went to pick it up,he was really very chuffed,
but that was my homage to him.
So we took it home andre-lined it, and set it all up,
and yeah.
(19:04):
- Do you feel as though,because you've done a bit of
that process, your housekeeping's in order
and you feel a bit incontrol and on top of things?
- Yes, yes, definitely.And when I look at it,
it's covered by a royal red blanket,
and when I lift theblanket up to look at it
and open the door and justsee the beauty of the colour,
it makes me smile.
(19:25):
I know it might sound silly,but knowing that's there,
and knowing that that iswhat I will be in, I'm happy.
- Why are you unafraid to look at
the very end of this?
Because for many people,I imagine that's something
that they might prefer to look away from.
- My mother had an incident once
(19:46):
where she had a near death experience,
and she said that shesaw all her loved ones
on the other side of a river,picnicking and being together,
and they said, "It's not your time",
so she came back, andshe relayed that to me.
And I like to think thatwhen I die, I'll be reunited
(20:09):
with all the loved ones that I've lost.
And I think the only way tolook at it is, hopefully,
if nothing else, I'll be somewhere
where I won't be suffering,
where there will be no suffering,
and I'm a heathen atheist,
I'm not a religious person at all,
but I just like the thoughtthat I'll get to see those
(20:30):
I love again and not be,
and I will be able to talk, I will be able
to verbalise what I want to say, so yeah.
- A lot of that as wellcomes from the positivity you
exude really, thatyou've turned this into,
instead of dwelling too heavilyon all the bad side of it,
you found a way to focuson, again, taking a bit
(20:52):
of control really, and beingin charge of the process.
- I think if you let theprocess take control of you,
you are going to get terribly,terribly bogged down.
- You spiral- Yeah, you'll spiral.
And it's easy enough to do.
And yes, every day isn't a brilliant day,
but if you can focus on one thing,
(21:15):
and as I said, if you knowthat whatever makes you happy,
if you look at that andjust allow yourself,
even if it's a minute to be happy,
because we all deserve to be happy.
Just because we get dementiadoesn't mean that we should
be locked away and, you know, forgotten.
And that we should liveamongst and let people know
(21:36):
because, really, I seeit's such a taboo subject.
You see so much on breastcancer and cancers,
and everything else,because there's a cure.
Dementia, there's no cure. Sowhy should we talk about it?
Why should we not lock peopleaway so we can't see them?
So we don't know that they're struggling,
we don't know that they need help.
(21:57):
We don't know that they liveamongst us, which we do.
- I am Nola Ries, and I'm aprofessor in the faculty of law
at University of Technology, Sydney.
I'm also a co-founder ofthe Dementia Law Network,
(22:19):
and I also lead research
with an ageing researchcollaborative at UTS.
- Throughout thisepisode, we've heard lots
of legalistic terms.
So Nola, let's start with some explainers.
I guess we all know what a will is,
but what does it actually do?
- The will is the documentafter a person has died,
indicates how their assets and properties
(22:41):
should be distributed to beneficiaries.
- And so, why exactly is that important?
- The importance of doing itearly is to avoid problems
after a person has died,
so if a person dies without a will,
then legislation steps in, basically,
and says, "According to thelaw, this is how your assets
(23:02):
will be distributed to people."
So it might be that theperson would really like
to make different arrangements.
There are particular charitiesthey might like to make sure
that they make donations to them.
They want to make sure particularpeople within their family
or friend network are beneficiaries.
So it just makes sure the persongets their own choice about
(23:25):
how their assets aredistributed after their death,
and means that governmentbodies don't need to come in
and deal with that.
- And what is an enduringpower of attorney?
- An enduring power ofattorney typically refers
to financial power of attorney.
So that, an enduring meansthat the person appointed into
(23:46):
that role acts even after
the person has lost the capacity
to make particular financial decisions.
So it's an enduringfinancial power of attorney
is someone you would trust tomanage your money and assets
for you in the future, in the event
that you are not able to do that.
- And what might that meanin the case of someone
(24:08):
living with dementia?
- It might mean that theenduring financial power
of attorney helps to manage money,
if the person with dementianeeds home care services,
for example, the financialpower of attorney
would make arrangements tomake sure those services,
the fees are paid.
(24:28):
It might mean managing billsfor other kinds of things,
insurances, if a personperhaps would want a home sold,
insurances, if a personperhaps would want a home sold,
if they might need tothink about moving into
a residential accommodation,
then a financial power ofattorney would deal with all
of those kinds of matters.
(24:49):
- And what about an enduring guardian?
- The term for this rolewill vary across the states
and territories, but theenduring guardian is somebody
who would makehealthcare-related decisions
for an individual who's notable to make those decisions.
- What do we mean when wetalk about advanced planning?
(25:09):
- Advanced planning refers toa broader range of decisions
a person might make, thinkingahead to their future,
so coming from a legal background,
I'm interested in legal planning.
So legal planning can includethings like naming people you
trust to be your decision maker,
(25:31):
should you lack capacity in the future
to make particular decisions,
so that can be an enduringfinancial power of attorney,
an enduring guardian who wouldmake healthcare decisions.
It can also mean makingadvanced directives,
which often are more about care,
so that fits into care planning.
(25:51):
It can also mean lookingahead and making a will,
thinking ahead to whatone might want in terms
of funeral arrangements and so on.
So there's a broad range of
future decisions a person can think about,
and then make legal documentsthat express what their wishes
and preferences are.
(26:12):
- So I imagine if you arereceiving a diagnosis,
that you're living withsome form of dementia,
that there's a lot tothink about all at once.
Do you need to make all ofthese decisions immediately,
because, I guess, one of thethings you might be considering
is how long have I got tothink this all through in a way
that is, I guess, smartand going to be right,
(26:35):
and in my own best interest?
- Getting that timely recommendation
to do planning is really important.
People who do the planningsooner rather than later
often find it an easier process,
and they've got more time to do it.
At the same time, itcan be daunting to think
about all of these decisions,
(26:55):
so any task that'soverwhelming, it's good just
to think about breaking itdown into smaller components,
but then also think aboutwhat's the point of doing all of
this legal planning, goingoff and seeing a solicitor?
And it is really about supportingthe person's own choice,
their control over the future.
(27:16):
So there's, we know that whenlegal planning is done well,
it has so many benefits.
People feel relieved that they've done it,
that the person living withdementia as well as those
around them, and it doesavoid problems in the future.
So it does avoid unwanted medical care.
It does reduce the risk of the person
(27:37):
being financially exploited byan enduring power of attorney
who should never have beenappointed into that role,
or who doesn't understand their role.
It can also avoid disputes over a will.
So, after a person has passed away,
there can be quite difficultlegal problems within families.
(27:57):
So the more the legal planningis done well at the time,
the more it avoids allof these future problems.
- A question I've oftenasked myself, you know,
as we've gone through things with my dad,
is what happens if youdon't have four kids
that can play these roles?
Like what do people do whenthey don't necessarily have a
close circle they can relyon to play these functions?
(28:22):
- I hear time and again howpeople in those circumstances,
they're not able to takeup their legal rights
because they don't havesomeone they trust.
So, in that instance,it is helpful to think
of broader networks that people have,
to think about friendshipsthat, there may be somebody
(28:42):
who would be a suitable personto take on some of those
roles in terms of thefinancial decision making
and management, that issomething that professionals,
a legal or accountingprofessional may act in those
kinds of roles.
So it is really important for people
to think more broadly about options
(29:05):
- And what aboutcommunication of your wishes,
or whatever it is thatyou've put down on paper,
because people might on somelevel think, yeah, I'm happy
to do that, but not necessarilyunderstand what's going to
be involved. Whose responsibility is that?
- That is certainly somethingthat the legal professional
should be encouragingthe their client to do,
(29:28):
to go away and have those conversations
with those key people,
especially the people appointedinto those legal roles.
And within interactions withhealthcare professionals,
there are opportunities to do that.
There are systems like myhealth record, and a person can,
(29:49):
if they have made an advancedcare directive, for example,
upload their care directiveto that online resource,
so that a care directive is available
to health professionalswho may need access
to it in the future.
Particularly down the track,if the person is admitted
to hospital in more ofan urgent situation,
(30:10):
then healthcare providers knowthey can look at the health
record, they can find theperson's care directive
if they have made one.
- That was really helpful to hear
that information from Nola.
It can be really overwhelming
to think about all thedifferent paperwork at once,
(30:32):
but it's good to know there'speople like her out there
making it accessible.
- Yeah, and Dementia Australiaactually has some great
resources on the website around this,
including a webinar on future planning
that you can sign up for,
we'll link to that in the show notes.
- And if you feel likeyou just need to talk
to someone about it all,
you can call the NationalDementia Helpline on 1800 100 500,
(30:55):
and speak with a trainedadvisor about your situation.
They're available 24-hours aday, every day of the year.
- Or you can just call Jim,Jim will take your call.
- Hold the Moment is a podcastfrom Dementia Australia.
(31:17):
It's produced by Deadset Studios.
You can find more episodes and resources
through the Dementia Australiawebsite, dementia.org au.
And don't forget to follow Hold the Moment
in your podcast app, soyou don't miss an episode.
The show is hosted by me, Jim Rogers,
- And by me, Hamish MacDonald.
The executive producers areKelly Ridden and Grace Pashley.
(31:41):
The producer is Liam Ridden,sound design by Sean Holden.
A special thanks to the wholeteam at Dementia Australia,
and to all the advocates
who shared their stories on this podcast.
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