June 30, 2025 • 28 mins
Vicki’s pain wasn’t going away and she couldn’t figure out why.
She was healthy, ate well, exercised regularly...but the pain just wouldn’t let up, even keeping her from sleeping sometimes.
Finally, she realised it might be the culmination of years of stress. She’d cared for her husband, Michael, for over a decade and he’d only just transitioned into permanent residential care.
For the first time, she felt relief – but her body was catching up after years of pushing through exhaustion.
Caring for someone living with dementia can be emotionally and mentally overwhelming but it can take a physical toll too. Find out how Vicki regained her health and how you can implement self-care while caring for someone else.
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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.
[Backround talking]
- All day...
...if they don't comeand get us, we'll move...
[muffled talking in background]
- So just want to welcome youeverybody for being here today
and, and coming to this group.
You know, it's really, reallyimportant space for all of us
(00:45):
and it's one that Emery
and myself feel reallyprivileged to be part of.
- What you're listeninginto right now,
is a peer support group.
It's for carers of peopleliving with dementia.
- So just as a way ofstarting, if we could just
go around the circle, justshare your name, who it is
that you're looking after,if you would like to share...
(01:06):
- Now this group meets every fortnight.
They share stories, theygive each other advice.
And importantly, they listen.
- ...to share how you're feeling today,
and then maybe one thing that supports you
with your own self-care.
- Groups like this one,are invaluable for carers.
(01:27):
Because the emotional tollof caring for someone living
with dementia, can be huge.
And sometimes, you just need to talk
to people who've beenin your shoes, before.
- I'm Julie, and my husband Stewart,
has Frontotemporal Dementiawith aphasia and behaviour and,
but he's been in care for
(01:48):
eight and a half years almost, and...
- Whether it's professionalcounselling, calling up
that one friend who truly gets you,
or joining a peer group likethis one, it's so important
to have as many self-caretools as you can.
- I'm grateful to be here. It'sjust lovely to have support.
(02:10):
[Music]
[Music]
- Hello there. I'm Hamish Macdonald.
And I cared for my dad
after his diagnosis with Lewybody dementia and Parkinson's.
- And I'm Jim Rogers.
And I'm living withyounger onset Alzheimer's.
(02:31):
- This is Hold the Moment, apodcast made by people living
with dementia and their families.
- Hame, how did it feel whenyou were caring for your dad?
Did you feel burnout?
- I absolutely felt burnt out.
I was ruined by the whole thing at times.
Yeah, it was really hard.I think dad was never a
(02:53):
straightforward person in the first place.
And, was always incrediblystrong-willed and determined.
And that changed evenwith his diagnosis, so...
- I wondered where yougot it from. (chuckling)
- But it often meant thatyou were kind of trying
to find this delicatebalance of listening to him
and his needs and supportinghim in what he wanted,
whilst also being superconscious about what was safe
(03:14):
for him, what was availableto him in terms of options.
It was just a really difficult balance.
And, everyone that knew him and saw him
and interacted with him, heardfrom him on those things.
And so you often, fieldingthis kind of ecosystem
of opinions and ideas andthoughts and suggestions.
And, sometimes it wasjust really, really hard
(03:35):
to get it right.
So, I sometimes came away fromthe whole experience thinking
I could just never quite get it right.
You know, he was never happy with
whatever it was we weredoing, even though, you know,
we, I think that we went a long way to try
and meet his needs and,
and give him a good standard of care.
- I think you did, from our chats.
Like you always considered his feelings
(03:56):
what he would've liked.
I think you were veryconsistent in what you did.
It, it was just a sort ofdelicate balance though,
because, what he wantedwas not always safe
or achievable, youknow, he always to go...
- Or realistic.
- Yeah. Like he still, youknow, his Parkinson's
and Lewy body advanced, he was still
wanting to go on holidays on
his own to Queensland.
And, so trying to, havethat conversation with him
(04:19):
and find a compromise thatwould work, maybe going
with a carer or a family member
or something like that, was just really
challenging because he didn't want it.
And so, sometimes youjust had to say "no".
Because it wasn't safe.
And, you know,
frankly he got pretty pissedoff about stuff like that
and would tell people he isbeing held against his will
and he'd been taken captive
(04:40):
and his human rights had beentaken away by his family (chuckling)
So those kind of conversationswhen it was fed back
to you, could be quite distressing (-Yeah)
Because we wereworking really hard to try
and give him a good quality of life.
So, did I feel burned out? Yes.
- Yeah.- And sometimes I swore.
Not really at him.
- Well you swear all the time.
- But like I, you know, you get to a point
(05:02):
where you're like, "Ah, boy",
- Yeah.- I don't know what to do.
- Exhausting.
- So Jim, you had a great chat
with Vicki about thefeelings of being physically
and mentally overwhelmed that can come
with caring. Tell us a bit about her.
- Vicki cared for her husband Michael.
He was diagnosed withyounger onset Alzheimer's
when he was 60.
She was a single mum.
(05:22):
She raised her kids
and they were entering adulthood when she
and Michael met.
As it is for most carers,
it was an extremely trying time.
But for Vicki, the challenges started even
before Michael's diagnosis.
- I'd been a single mum for 12 years.
And, Michael and I, met at work.
(05:46):
We worked at the same placetogether in local government.
So we kind of had that in common
and we just kind of struckup this conversation
and then I thought, "Oh,he's a pretty nice guy."
And he was single and on his own.
And, yeah, we just started, I don't know
how we actually wentout on our first date.
I do remember the date though.
(06:08):
We went to a very cheap Polish restaurant
because of my Polish background.
And, he said that was far too cheap,
I need to take you out again
and we need, you know, I need to...
- Do a proper job.
- Yeah, exactly.
And that's how it went.
- So how were youfeeling about your future
with Michael when you first got married?
(06:30):
- Oh look, you know, Iwas obviously overjoyed
and having been a single mum
and we got married on the beach in Broome.
Had a lot to look forward to.
He didn't have children,he was an only child.
So, my girls were in, youknow, their, I think 12
and 17 at the time.
So, at a good age, were it worked for us
(06:52):
and had a lot to look forward to really.
And, we had a, some reallygood years together.
We went on holiday to Vietnam.
That was a fabulous timethat we had together.
A good adventure.
after doing those hard yards
and just nice to have someoneto share the evenings with.
You know, have a drinktogether, socialise together.
(07:15):
And we had between us good friends
and all of those sortof things. It was good.
- What were these first signs
that you noticed aboutMichael when you started to,
you know, some of thesecognitive difficulties
that he was experiencing?
What were they?
- Well, Michael is a good cook.
And he loved it, his signaturedish was, vegetable stir fry.
(07:37):
And he would chop the vegetables,
[Chopping sounds](-fuck),
I've never seen anyone chopvegetables like he does.
And he would be wantingto get like soy sauce
or something from the pantry or fridge.
And he'd go there to get it and he'd say,
"Where is the, likesoy sauce or where is this?"
(07:59):
I'd go, 'that's odd, it'sright in front of him.'
And then it would be thingslike leaving the keys
behind, glasses and restaurants.
He would be working reallylong hours and I mean
from seven o'clock in themorning till seven at night.
I noticed whenhe was on the computer
and trying to organise it,that he was organising a trip
to base camp with friends,
(08:20):
and, he'd get lost openingup all the windows, and,
he couldn't navigate,you know, the computer
where he was going onthings and landing on things
and getting very confused.
So I started to think, "hmm,there's something going on."
And I couldn't pinpoint it.
And I have to say dementiawasn't on my radar. (-Yeah)
(08:41):
That didn't even come into consideration.
I was actually thinking more sinister.
Like could it be a brain tumour?
I mean, you know, what is this?
But then I did the Google thing.
And the more I Googled, I started
to think it's definitely a cognitive issue
and it's starting tolook a lot like dementia.
- Did you start talking to him about this?
(09:04):
And what happened whenyou tried to talk to him?
- Well, I did talk to Michael about it
and you know, clearlyvery sensitive matter.
But, I raised it with himand it was interesting
because at the time I wasworking for 'Headspace',
the youth mental health.I'd set up the operation
centre at Joondalup.
So, you know, I had a prettygood idea of, you know,
(09:26):
mental health issues and what to expect
in dealing with that sort of thing.
So, incredible sensitivity around it.
But Michael was in absolute denial.
You know, he's the, theguy who played football
and you know, sportingprowess and physical prowess
and that whole male thing.
It was like, how dareI even question...
(09:48):
- A fairly fit guy.
- Oh absolutely.
And no health issues, you know,really fit and healthy and,
and it was really interesting as well
because when I, I wasn'tgetting very far with Michael
then how and where do I get support?
I don't have family.
My siblings live elsewhere
(10:10):
and my parents died when I was very young.
So, pretty much on my own with this.
And then with Michael beingan only child and his mum.
And you know, that had tobe really sensitive as well.
A mother's only son, has,might look like dementia.
So, who and where do I go, for support?
(10:31):
So, I would, reached out to acouple of his very close
friends and confided in them.
I couldn't, the responsewas almost, "how dare you."
Like, I felt like I was being the monster.
And it was disparaging like the, yeah.
So they were absolutely...
- Would've been confronting.
- Yeah, not on board with that.
- Had they known him a long time?
(10:53):
- Of course, 30 odd yearsI'd only known him three.
Like what would I know?
- Yeah.- So how...
- That would've been very hard.
- Absolutely. So, Iactually began to think
that I was losing my mind, like am I
going up the wrong path here? (-Yeah)
Like, have I got this wrong?
So then,
I reached out to a counsellor.
(11:16):
I knew I needed counselling.
And I was really lucky I struck someone
who really knew the dilemma that I was in.
And she actually said,"You know what Vicki,
you don't even have to do this."
"You need to think if this isreally the journey you want
to be on, and how difficult it could be."
And you know, I saw her fora couple of sessions, and in,
(11:37):
and I really had to think hard and fast
and it was really difficult.
Like, our marriage beingso early in the piece,
it really challengedeven our relationship.
You can imagine, I was,felt very isolated.
But the good thing in seeingthe counsellor is I knew
I was on the right track.
So, it gave me a little bit of confidence.
(12:00):
When I had been to Michael's doctor,
to see if he could help.
The response I'd got fromhim was that if Michael
had a problem, he would come and see him
and that I should just gohome and be the good wife.
So he chaperoned me outof his office and said,
(12:20):
"And by the way, I won't chargeyou for the appointment."
Good on you.
After the counselling and you know,
the situation I was in, I thought
just need to get this inthe open and deal with it.
So virtually, sat Michaeldown one afternoon
and I just said, "look, this is the deal,
and it's not negotiable".
(12:42):
And the things were,he had to go to the GP
and go through a process
and we needed to find out whatwas going on so that we knew
what we were dealing with.
And secondly, he would haveto go to counselling on his own
and then we would have togo to counselling together,
to redefine our relationshipif it was going to work
and we were going to go forward.
(13:03):
So, to his credit, he did those.
- And you were quite honest with yourself
after his diagnosis aboutthe fact that your life was,
to be honest, going to change a lot.
- I'd, have given up work and you do.
You have to let go of stuff.
There's, I think, from my observation,
(13:24):
and you know the cohort,we have our own peer
and social support group.
We've got a network of 140 carer couples,
and I've watched many of them struggle
because they want to continue life normal.
And continue to work and not be disrupted.
Well, that's just not going tohappen. It's unrealistic.
So I think, the soonerthat you can come to terms
(13:45):
and you know, be honestabout what's going on
and start to address anddeal with what's going on
and find ways to work in
and around it, you'll be muchbetter off and get educated.
Absolutely. Knowledge is power.
So for me, going to the early programs,
understanding dementia, livingwell with dementia.
(14:05):
The more of that you can get a hold of,
the better you'll be as well.
And we did like all
of Michael's advancedcare planning early up
because I have this, you know,
been working in palliative care
and advanced care planning, I just knew
how important that was.
And I also knew
that I would be the decisionmaker on Michael's behalf
(14:27):
and I wanted to make sure
that if I were makingdecisions on his behalf then
that they were the things thatmattered for him, not for me.
Like, I have very different values
and ideas about what I wantfor end-of-life compared
to Michael, and I didn'twant that to colour
my decision-making aroundwhat he might want.
(14:48):
So, that was reallyimportant to, to know about
what that was for Michael.
- Vicki continued caringfor Michael at home
for almost 12 years after his diagnosis.
Throughout that period,
Vicki attended peer supportgroups like the one you heard at
the beginning of this episode.
(15:10):
But after more than a decademanaging Michael's care,
Vicki needed a serious break.
So when an opportunity totravel to Europe arose,
Vicki had an idea, she wantedto walk the world famous
'Camino de Santiago.'
- I was actually askedto be the bridesmaid
(15:30):
for one of my friends.
He was getting marriedto a Portuguese girl.
So it was a perfect opportunityto just take some time out.
And, I love being ina solitary environment
and I find walking very meditative.
I started out on the walkand it was interesting
because it's a lot of boardwalk.
(15:50):
It's quite slippery, at earlyin the morning with the dew
and the moisture.
And, I hadn't realised,but being in Lisbon
and Porto beforehand,
and walking on the big, wide cobblestones,
my knees had actually got quite a workout
and I don't have goodknees at the best of times.
(16:14):
And it was about three days in on my walk.
And I'm weight bearingwith the pack on my back,
and I'm starting to reallyrealise I'm struggling
with my knees, but I wasdetermined I was going to do it.
And I guess in a way
that's a bit like thejourney with dementia.
You have to be preparedfor anything along the way.
- Absolutely.- And lean in and take things
(16:35):
as they come really.
And be creative and findwork-arounds and lean in
and just, you know, do what you can.
- And you're also starting to notice a
few health issues of your own.
- Well, it wasn't untilyou stopped the caring,
like being on The Caminoand then my knees played up.
And then I developed this myofascial pain
where my whole body started to seize up.
(16:59):
And I really feel that's thataccumulation of the stress
and just being hypervigilant for so long.
You know, you're on, you're on
- Autopilot.
- Yeah, you are. You are functioning at
that level for so long.
It's a bit like when your kids are little
and you're sleep deprived
and you know, you just, I don't know
how you function really,but somehow you do.
(17:20):
And it was kind, it waslike that. It really was.
So, it wasn't until I was in that space
that I just realised the impact for myself
and the, the toll it wasactually taking on my own health.
Not, anything obviousbut those subtleties.
And honestly I would takeme two hours in the morning
(17:40):
to actually limber up and you know,
and I was on painkillers the whole time
and I just thought, this is not good.
I can't keep doing that.
- What were you thinkingabout on that trail?
- That's a really good question.
I think for me, I was at a point
where I realised I wasprobably at the end
(18:02):
of the road with my caring.
My preparedness
and willingness to keep caring
for Michael while supporting him.
And I always promisedmyself that if I ever got
to feel resentful about my role of caring,
then it would be time to stop.
I was starting to think, well,what does the next chapter
(18:23):
of my life look like?
And Mike had been in, he wasin respite care.
For seven weeks.
Which is a big, you know,transition for him too.
So that was a kind of test runas to what that might be like
for him as well.
And for me, able to let go
and looking beyond my caring role.
(18:46):
So, as the days passed,really I had lots of time
to think about what that might look like.
You know, time to getmy life back in order.
And it was really the perfecttime and place to do that.
- And how did it sortof feel when you went
from him being intemporarily residential care?
(19:10):
Talk us through, howdid it form a decision
that this could be a good time
to manoeuvre him into this permanently?
- Well, having been away for seven weeks,
that's quite a long period of time.
And for Michael to be without seeing me.
But in a way I felt that was part
of the plan, was sometimes ifwe put people into
(19:33):
respite care or care,I see people want to go
and visit their loved ones every day.
Well, I think there's really no point to
that if you're going to putthem in for a respite care,
we really need to take the break.
Right? (-Yeah)
So, while I was away, he had had a period
of respite before that
and I'd kind of had this idea
that if I transitioned him slowly.
(19:54):
So it would was two weekperiod, then a five week period.
My sister had actuallydied that year as well.
It was quite aninteresting year that year.
And one daughter moved toBroome, the other to Canberra
and Michael's mother died.
So, I had this whole yearof letting go. (- Big year)
So part of being on The Caminowas also processing the grief
and the letting go.
(20:15):
So, there was a bit more to that story.
- What about your self-care plan now?
Like what do you do tomake Vicki feel good, now?
- Yeah, well after that myofascial pain
and realising how debilitating that was,
I decided to go on the self-imposed
what I call my 'radical self-care plan.'
(20:39):
I started doing yoga,just the subtle stretching
and movement, not high gym work
and high output stuff, just very gentle
yoga exercises.
I go to the, these senior fitness
classes, cause they're cheap.
I go swimming once a week on a Sunday.
I do 1.5km's inthe pool and do the sauna.
(21:02):
The heat seems to really
- Help?
- Yeah, exactly. I do my walking still.
I've always been good atBuddhist practise, so meditation.
My sleep though is stillsomething I haven't been able
to restore, a good sleep pattern.
I think all the nightsof getting up and down
(21:22):
and you know, deescalatingMike and just redirecting him
and things and his hallucinationsthat's taken its toll.
So, I'd probably sleep four hours
solid, and that's about it.
But I seem to function quite well on that.
But that's something thatI'm still working on.
(21:44):
- For people listening,would you offer any advice
and tips as a carer of waysto help prevent that burnout?
- Find time for yourself.
You know, make use whenyou've got the support worker
or those littleopportunities you might get.
Not be afraid to ask for help.
And when you do ask for help,
(22:05):
make sure there's specificrequests so people know
how they can help you.
Otherwise they just won'task and won't offer.
So, certainly looking at what,
who you've got in your network.
Calling in help when youneed it, taking some time
for yourself, and finding thosethings that you really enjoy.
Try and find the enjoyment, the things
(22:27):
that you know you like to do.
- What do I do? I've gotlots of support groups.
I do days for girls, sewingand I've got church groups
and I've got my universitygroup get-together.
- What do I do? I, Ibelong to a photo club,
which meets twice a month.
(22:48):
I always play golf, but I'vesort of taken the extra day
of golf and I've gotthree young grandchildren.
So, I spend a lot of timeminding them, taking them
to soccer training and justhaving some fun with them.
- So I've got lots of things to do.
And coming here as part of
that routine, has been for a long time...
(23:09):
- And then, like I saidbefore, knowledge is power.
So I would say definitelyknow what you're up for.
Don't go blind.
You need to know what you're dealing with
and how you can manage it.
Seek help. There's somuch support out there.
You know, Dementia Australia,Carers Australia, there's
so much help out there,in terms of services.
(23:32):
But it's definitely yourimmediate support group.
And I can tell you nowwithout the peer support group
that we established, Idon't know where I'd be.
We've managed to, we'vebefriended three couples
and we regularly wenton holidays together.
Like we took the train toKalgoorlie, we've been down
to Esperance, we've been toAlbany together, we've swam
(23:53):
with the whale sharksin Exmouth together.
I mean we've, it's been amazing.
So, and
because we get it, it's areally nice way to be in,
at the end of the day,we can just sit and relax
and have a meal together and adrink and that sort of thing.
- And how are you doing now?
How are you feeling now?What's the future look like?
- I have no idea what's ahead of me.
(24:15):
And I guess that's a littlebit of the mystery of life.
I always say there's amastery and mystery to life
and I think, you know, mastering.
I think I've mastered thejourney with dementia pretty well
with Mike and I, I have to say.
And we've done a good jobtogether on that journey.
And, we are in a nice place now where,
where I visit Mike twice a week.
(24:36):
And, I really connect
with Michael on a levelI never thought possible
in any relationship.
And I don't think I would'veexperienced the level
of connection I have with Michael now,
had we have not journeyedtogether with dementia.
Its, I can't evendescribe what that's like.
It's quite profound.
And I never thought I wouldever say that.
(24:58):
You know, when there was a time when I
would've left him, possibly.(- Yeah, of course)
So to get to this stage,is, you know, really
that pleasantpersistence and journey.
- It's achievement in itself.- Yeah, exactly.
So, that feels really good.
And I really look forwardto seeing Michael when,
when we visit and we goout and do things together.
(25:19):
Like, tonight we've got theclosing event for our Odyssey,
our annual art exhibition on Friday.
He's going to lunch at the Angling Club
with his mates, who theywon the premisership
50 years ago, footy.
In Papua New Guinea.
So you know, he's stillconnected to those guys.
So, there's still alot to look forward to.
(25:41):
And look, I don't know
what the future holdsfor me at the moment.
I'm working one day a week,which is nice to be back in,
in the workforce again.
I am looking forward toretirement and taking things easy.
But, when and what that willlook like, I don't know.
I just go day-to-day,
(26:01):
and it's a bit like living with dementia.
I'm totally in the present moment.
- I think that's whatyou got to do. (-Yep)
Be in the present and takeeach day, one day at a time. (-Yeah)
Well, listen, Vicky,it's been such a pleasure
to meet you and thanks forcoming in and chatting.
- Thank you. Thank you, Jim.It's been a pleasure as well.
[Music]
(26:23):
[Music]
[Music]
- Thanks again to Vickifor sharing her story with us.
- Yeah, I know exactly whatVicki means when she
talks about the physical side of things.
Caring can take such abig toll on your mind
and your emotions, but actuallyyou don't often think about
(26:44):
what it does to your body.
It's actually oftenwhen you outsource some
of the physical aspects of caring
that you finally feel whatit's done to your body.
- If you could relate to whatVicki was saying about her
experience caring for Michael.
Or, if you want some tips on looking
after yourself as a carer.
Check out our bonus episodeabout burnout and self-care.
(27:07):
- You'll hear from Kristen whoworks on Dementia Australia's
National Helpline.
She'll give you simple,practical tips for self-care.
And if you want to go a bit deeper,
you can always call the helpline yourself.
- The helpline's free, and available
24/7, every day of the year.
Just call 1800 100 500.
(27:28):
[Music]
Hold the Moment is a podcastfrom Dementia Australia.
Produced by Dead Deadset Studios.
You can find more episodes
and resources on DementiaAustralia's website.
dementia.org.au.
The show is hosted by me, Jim Rogers.
(27:50):
- And by me, Hamish Macdonald.
The executive producers areKellie Riordan and Gia Moylan.
The producers are Madeleine Hawcroft
and Liam Riordan.
Production Manager is Ann Chesterman.
Sound Design by Ryan Pemberton.
A special thanks to the wholeteam at Dementia Australia
and to everyone who sharedtheir stories on this podcast.
[Music]
(28:13):
[Music]
[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.
[Backround talking]
- All day...
...if they don't comeand get us, we'll move...
[muffled talking in background]
- So just want to welcome youeverybody for being here today
and, and coming to this group.
You know, it's really, reallyimportant space for all of us
(00:45):
and it's one that Emery
and myself feel reallyprivileged to be part of.
- What you're listeninginto right now,
is a peer support group.
It's for carers of peopleliving with dementia.
- So just as a way ofstarting, if we could just
go around the circle, justshare your name, who it is
that you're looking after,if you would like to share...
(01:06):
- Now this group meets every fortnight.
They share stories, theygive each other advice.
And importantly, they listen.
- ...to share how you're feeling today,
and then maybe one thing that supports you
with your own self-care.
- Groups like this one,are invaluable for carers.
(01:27):
Because the emotional tollof caring for someone living
with dementia, can be huge.
And sometimes, you just need to talk
to people who've beenin your shoes, before.
- I'm Julie, and my husband Stewart,
has Frontotemporal Dementiawith aphasia and behaviour and,
but he's been in care for
(01:48):
eight and a half years almost, and...
- Whether it's professionalcounselling, calling up
that one friend who truly gets you,
or joining a peer group likethis one, it's so important
to have as many self-caretools as you can.
- I'm grateful to be here. It'sjust lovely to have support.
(02:10):
[Music]
[Music]
- Hello there. I'm Hamish Macdonald.
And I cared for my dad
after his diagnosis with Lewybody dementia and Parkinson's.
- And I'm Jim Rogers.
And I'm living withyounger onset Alzheimer's.
(02:31):
- This is Hold the Moment, apodcast made by people living
with dementia and their families.
- Hame, how did it feel whenyou were caring for your dad?
Did you feel burnout?
- I absolutely felt burnt out.
I was ruined by the whole thing at times.
Yeah, it was really hard.I think dad was never a
(02:53):
straightforward person in the first place.
And, was always incrediblystrong-willed and determined.
And that changed evenwith his diagnosis, so...
- I wondered where yougot it from. (chuckling)
- But it often meant thatyou were kind of trying
to find this delicatebalance of listening to him
and his needs and supportinghim in what he wanted,
whilst also being superconscious about what was safe
(03:14):
for him, what was availableto him in terms of options.
It was just a really difficult balance.
And, everyone that knew him and saw him
and interacted with him, heardfrom him on those things.
And so you often, fieldingthis kind of ecosystem
of opinions and ideas andthoughts and suggestions.
And, sometimes it wasjust really, really hard
(03:35):
to get it right.
So, I sometimes came away fromthe whole experience thinking
I could just never quite get it right.
You know, he was never happy with
whatever it was we weredoing, even though, you know,
we, I think that we went a long way to try
and meet his needs and,
and give him a good standard of care.
- I think you did, from our chats.
Like you always considered his feelings
(03:56):
what he would've liked.
I think you were veryconsistent in what you did.
It, it was just a sort ofdelicate balance though,
because, what he wantedwas not always safe
or achievable, youknow, he always to go...
- Or realistic.
- Yeah. Like he still, youknow, his Parkinson's
and Lewy body advanced, he was still
wanting to go on holidays on
his own to Queensland.
And, so trying to, havethat conversation with him
(04:19):
and find a compromise thatwould work, maybe going
with a carer or a family member
or something like that, was just really
challenging because he didn't want it.
And so, sometimes youjust had to say "no".
Because it wasn't safe.
And, you know,
frankly he got pretty pissedoff about stuff like that
and would tell people he isbeing held against his will
and he'd been taken captive
(04:40):
and his human rights had beentaken away by his family (chuckling)
So those kind of conversationswhen it was fed back
to you, could be quite distressing (-Yeah)
Because we wereworking really hard to try
and give him a good quality of life.
So, did I feel burned out? Yes.
- Yeah.- And sometimes I swore.
Not really at him.
- Well you swear all the time.
- But like I, you know, you get to a point
(05:02):
where you're like, "Ah, boy",
- Yeah.- I don't know what to do.
- Exhausting.
- So Jim, you had a great chat
with Vicki about thefeelings of being physically
and mentally overwhelmed that can come
with caring. Tell us a bit about her.
- Vicki cared for her husband Michael.
He was diagnosed withyounger onset Alzheimer's
when he was 60.
She was a single mum.
(05:22):
She raised her kids
and they were entering adulthood when she
and Michael met.
As it is for most carers,
it was an extremely trying time.
But for Vicki, the challenges started even
before Michael's diagnosis.
- I'd been a single mum for 12 years.
And, Michael and I, met at work.
(05:46):
We worked at the same placetogether in local government.
So we kind of had that in common
and we just kind of struckup this conversation
and then I thought, "Oh,he's a pretty nice guy."
And he was single and on his own.
And, yeah, we just started, I don't know
how we actually wentout on our first date.
I do remember the date though.
(06:08):
We went to a very cheap Polish restaurant
because of my Polish background.
And, he said that was far too cheap,
I need to take you out again
and we need, you know, I need to...
- Do a proper job.
- Yeah, exactly.
And that's how it went.
- So how were youfeeling about your future
with Michael when you first got married?
(06:30):
- Oh look, you know, Iwas obviously overjoyed
and having been a single mum
and we got married on the beach in Broome.
Had a lot to look forward to.
He didn't have children,he was an only child.
So, my girls were in, youknow, their, I think 12
and 17 at the time.
So, at a good age, were it worked for us
(06:52):
and had a lot to look forward to really.
And, we had a, some reallygood years together.
We went on holiday to Vietnam.
That was a fabulous timethat we had together.
A good adventure.
after doing those hard yards
and just nice to have someoneto share the evenings with.
You know, have a drinktogether, socialise together.
(07:15):
And we had between us good friends
and all of those sortof things. It was good.
- What were these first signs
that you noticed aboutMichael when you started to,
you know, some of thesecognitive difficulties
that he was experiencing?
What were they?
- Well, Michael is a good cook.
And he loved it, his signaturedish was, vegetable stir fry.
(07:37):
And he would chop the vegetables,
[Chopping sounds](-fuck),
I've never seen anyone chopvegetables like he does.
And he would be wantingto get like soy sauce
or something from the pantry or fridge.
And he'd go there to get it and he'd say,
"Where is the, likesoy sauce or where is this?"
(07:59):
I'd go, 'that's odd, it'sright in front of him.'
And then it would be thingslike leaving the keys
behind, glasses and restaurants.
He would be working reallylong hours and I mean
from seven o'clock in themorning till seven at night.
I noticed whenhe was on the computer
and trying to organise it,that he was organising a trip
to base camp with friends,
(08:20):
and, he'd get lost openingup all the windows, and,
he couldn't navigate,you know, the computer
where he was going onthings and landing on things
and getting very confused.
So I started to think, "hmm,there's something going on."
And I couldn't pinpoint it.
And I have to say dementiawasn't on my radar. (-Yeah)
(08:41):
That didn't even come into consideration.
I was actually thinking more sinister.
Like could it be a brain tumour?
I mean, you know, what is this?
But then I did the Google thing.
And the more I Googled, I started
to think it's definitely a cognitive issue
and it's starting tolook a lot like dementia.
- Did you start talking to him about this?
(09:04):
And what happened whenyou tried to talk to him?
- Well, I did talk to Michael about it
and you know, clearlyvery sensitive matter.
But, I raised it with himand it was interesting
because at the time I wasworking for 'Headspace',
the youth mental health.I'd set up the operation
centre at Joondalup.
So, you know, I had a prettygood idea of, you know,
(09:26):
mental health issues and what to expect
in dealing with that sort of thing.
So, incredible sensitivity around it.
But Michael was in absolute denial.
You know, he's the, theguy who played football
and you know, sportingprowess and physical prowess
and that whole male thing.
It was like, how dareI even question...
(09:48):
- A fairly fit guy.
- Oh absolutely.
And no health issues, you know,really fit and healthy and,
and it was really interesting as well
because when I, I wasn'tgetting very far with Michael
then how and where do I get support?
I don't have family.
My siblings live elsewhere
(10:10):
and my parents died when I was very young.
So, pretty much on my own with this.
And then with Michael beingan only child and his mum.
And you know, that had tobe really sensitive as well.
A mother's only son, has,might look like dementia.
So, who and where do I go, for support?
(10:31):
So, I would, reached out to acouple of his very close
friends and confided in them.
I couldn't, the responsewas almost, "how dare you."
Like, I felt like I was being the monster.
And it was disparaging like the, yeah.
So they were absolutely...
- Would've been confronting.
- Yeah, not on board with that.
- Had they known him a long time?
(10:53):
- Of course, 30 odd yearsI'd only known him three.
Like what would I know?
- Yeah.- So how...
- That would've been very hard.
- Absolutely. So, Iactually began to think
that I was losing my mind, like am I
going up the wrong path here? (-Yeah)
Like, have I got this wrong?
So then,
I reached out to a counsellor.
(11:16):
I knew I needed counselling.
And I was really lucky I struck someone
who really knew the dilemma that I was in.
And she actually said,"You know what Vicki,
you don't even have to do this."
"You need to think if this isreally the journey you want
to be on, and how difficult it could be."
And you know, I saw her fora couple of sessions, and in,
(11:37):
and I really had to think hard and fast
and it was really difficult.
Like, our marriage beingso early in the piece,
it really challengedeven our relationship.
You can imagine, I was,felt very isolated.
But the good thing in seeingthe counsellor is I knew
I was on the right track.
So, it gave me a little bit of confidence.
(12:00):
When I had been to Michael's doctor,
to see if he could help.
The response I'd got fromhim was that if Michael
had a problem, he would come and see him
and that I should just gohome and be the good wife.
So he chaperoned me outof his office and said,
(12:20):
"And by the way, I won't chargeyou for the appointment."
Good on you.
After the counselling and you know,
the situation I was in, I thought
just need to get this inthe open and deal with it.
So virtually, sat Michaeldown one afternoon
and I just said, "look, this is the deal,
and it's not negotiable".
(12:42):
And the things were,he had to go to the GP
and go through a process
and we needed to find out whatwas going on so that we knew
what we were dealing with.
And secondly, he would haveto go to counselling on his own
and then we would have togo to counselling together,
to redefine our relationshipif it was going to work
and we were going to go forward.
(13:03):
So, to his credit, he did those.
- And you were quite honest with yourself
after his diagnosis aboutthe fact that your life was,
to be honest, going to change a lot.
- I'd, have given up work and you do.
You have to let go of stuff.
There's, I think, from my observation,
(13:24):
and you know the cohort,we have our own peer
and social support group.
We've got a network of 140 carer couples,
and I've watched many of them struggle
because they want to continue life normal.
And continue to work and not be disrupted.
Well, that's just not going tohappen. It's unrealistic.
So I think, the soonerthat you can come to terms
(13:45):
and you know, be honestabout what's going on
and start to address anddeal with what's going on
and find ways to work in
and around it, you'll be muchbetter off and get educated.
Absolutely. Knowledge is power.
So for me, going to the early programs,
understanding dementia, livingwell with dementia.
(14:05):
The more of that you can get a hold of,
the better you'll be as well.
And we did like all
of Michael's advancedcare planning early up
because I have this, you know,
been working in palliative care
and advanced care planning, I just knew
how important that was.
And I also knew
that I would be the decisionmaker on Michael's behalf
(14:27):
and I wanted to make sure
that if I were makingdecisions on his behalf then
that they were the things thatmattered for him, not for me.
Like, I have very different values
and ideas about what I wantfor end-of-life compared
to Michael, and I didn'twant that to colour
my decision-making aroundwhat he might want.
(14:48):
So, that was reallyimportant to, to know about
what that was for Michael.
- Vicki continued caringfor Michael at home
for almost 12 years after his diagnosis.
Throughout that period,
Vicki attended peer supportgroups like the one you heard at
the beginning of this episode.
(15:10):
But after more than a decademanaging Michael's care,
Vicki needed a serious break.
So when an opportunity totravel to Europe arose,
Vicki had an idea, she wantedto walk the world famous
'Camino de Santiago.'
- I was actually askedto be the bridesmaid
(15:30):
for one of my friends.
He was getting marriedto a Portuguese girl.
So it was a perfect opportunityto just take some time out.
And, I love being ina solitary environment
and I find walking very meditative.
I started out on the walkand it was interesting
because it's a lot of boardwalk.
(15:50):
It's quite slippery, at earlyin the morning with the dew
and the moisture.
And, I hadn't realised,but being in Lisbon
and Porto beforehand,
and walking on the big, wide cobblestones,
my knees had actually got quite a workout
and I don't have goodknees at the best of times.
(16:14):
And it was about three days in on my walk.
And I'm weight bearingwith the pack on my back,
and I'm starting to reallyrealise I'm struggling
with my knees, but I wasdetermined I was going to do it.
And I guess in a way
that's a bit like thejourney with dementia.
You have to be preparedfor anything along the way.
- Absolutely.- And lean in and take things
(16:35):
as they come really.
And be creative and findwork-arounds and lean in
and just, you know, do what you can.
- And you're also starting to notice a
few health issues of your own.
- Well, it wasn't untilyou stopped the caring,
like being on The Caminoand then my knees played up.
And then I developed this myofascial pain
where my whole body started to seize up.
(16:59):
And I really feel that's thataccumulation of the stress
and just being hypervigilant for so long.
You know, you're on, you're on
- Autopilot.
- Yeah, you are. You are functioning at
that level for so long.
It's a bit like when your kids are little
and you're sleep deprived
and you know, you just, I don't know
how you function really,but somehow you do.
(17:20):
And it was kind, it waslike that. It really was.
So, it wasn't until I was in that space
that I just realised the impact for myself
and the, the toll it wasactually taking on my own health.
Not, anything obviousbut those subtleties.
And honestly I would takeme two hours in the morning
(17:40):
to actually limber up and you know,
and I was on painkillers the whole time
and I just thought, this is not good.
I can't keep doing that.
- What were you thinkingabout on that trail?
- That's a really good question.
I think for me, I was at a point
where I realised I wasprobably at the end
(18:02):
of the road with my caring.
My preparedness
and willingness to keep caring
for Michael while supporting him.
And I always promisedmyself that if I ever got
to feel resentful about my role of caring,
then it would be time to stop.
I was starting to think, well,what does the next chapter
(18:23):
of my life look like?
And Mike had been in, he wasin respite care.
For seven weeks.
Which is a big, you know,transition for him too.
So that was a kind of test runas to what that might be like
for him as well.
And for me, able to let go
and looking beyond my caring role.
(18:46):
So, as the days passed,really I had lots of time
to think about what that might look like.
You know, time to getmy life back in order.
And it was really the perfecttime and place to do that.
- And how did it sortof feel when you went
from him being intemporarily residential care?
(19:10):
Talk us through, howdid it form a decision
that this could be a good time
to manoeuvre him into this permanently?
- Well, having been away for seven weeks,
that's quite a long period of time.
And for Michael to be without seeing me.
But in a way I felt that was part
of the plan, was sometimes ifwe put people into
(19:33):
respite care or care,I see people want to go
and visit their loved ones every day.
Well, I think there's really no point to
that if you're going to putthem in for a respite care,
we really need to take the break.
Right? (-Yeah)
So, while I was away, he had had a period
of respite before that
and I'd kind of had this idea
that if I transitioned him slowly.
(19:54):
So it would was two weekperiod, then a five week period.
My sister had actuallydied that year as well.
It was quite aninteresting year that year.
And one daughter moved toBroome, the other to Canberra
and Michael's mother died.
So, I had this whole yearof letting go. (- Big year)
So part of being on The Caminowas also processing the grief
and the letting go.
(20:15):
So, there was a bit more to that story.
- What about your self-care plan now?
Like what do you do tomake Vicki feel good, now?
- Yeah, well after that myofascial pain
and realising how debilitating that was,
I decided to go on the self-imposed
what I call my 'radical self-care plan.'
(20:39):
I started doing yoga,just the subtle stretching
and movement, not high gym work
and high output stuff, just very gentle
yoga exercises.
I go to the, these senior fitness
classes, cause they're cheap.
I go swimming once a week on a Sunday.
I do 1.5km's inthe pool and do the sauna.
(21:02):
The heat seems to really
- Help?
- Yeah, exactly. I do my walking still.
I've always been good atBuddhist practise, so meditation.
My sleep though is stillsomething I haven't been able
to restore, a good sleep pattern.
I think all the nightsof getting up and down
(21:22):
and you know, deescalatingMike and just redirecting him
and things and his hallucinationsthat's taken its toll.
So, I'd probably sleep four hours
solid, and that's about it.
But I seem to function quite well on that.
But that's something thatI'm still working on.
(21:44):
- For people listening,would you offer any advice
and tips as a carer of waysto help prevent that burnout?
- Find time for yourself.
You know, make use whenyou've got the support worker
or those littleopportunities you might get.
Not be afraid to ask for help.
And when you do ask for help,
(22:05):
make sure there's specificrequests so people know
how they can help you.
Otherwise they just won'task and won't offer.
So, certainly looking at what,
who you've got in your network.
Calling in help when youneed it, taking some time
for yourself, and finding thosethings that you really enjoy.
Try and find the enjoyment, the things
(22:27):
that you know you like to do.
- What do I do? I've gotlots of support groups.
I do days for girls, sewingand I've got church groups
and I've got my universitygroup get-together.
- What do I do? I, Ibelong to a photo club,
which meets twice a month.
(22:48):
I always play golf, but I'vesort of taken the extra day
of golf and I've gotthree young grandchildren.
So, I spend a lot of timeminding them, taking them
to soccer training and justhaving some fun with them.
- So I've got lots of things to do.
And coming here as part of
that routine, has been for a long time...
(23:09):
- And then, like I saidbefore, knowledge is power.
So I would say definitelyknow what you're up for.
Don't go blind.
You need to know what you're dealing with
and how you can manage it.
Seek help. There's somuch support out there.
You know, Dementia Australia,Carers Australia, there's
so much help out there,in terms of services.
(23:32):
But it's definitely yourimmediate support group.
And I can tell you nowwithout the peer support group
that we established, Idon't know where I'd be.
We've managed to, we'vebefriended three couples
and we regularly wenton holidays together.
Like we took the train toKalgoorlie, we've been down
to Esperance, we've been toAlbany together, we've swam
(23:53):
with the whale sharksin Exmouth together.
I mean we've, it's been amazing.
So, and
because we get it, it's areally nice way to be in,
at the end of the day,we can just sit and relax
and have a meal together and adrink and that sort of thing.
- And how are you doing now?
How are you feeling now?What's the future look like?
- I have no idea what's ahead of me.
(24:15):
And I guess that's a littlebit of the mystery of life.
I always say there's amastery and mystery to life
and I think, you know, mastering.
I think I've mastered thejourney with dementia pretty well
with Mike and I, I have to say.
And we've done a good jobtogether on that journey.
And, we are in a nice place now where,
where I visit Mike twice a week.
(24:36):
And, I really connect
with Michael on a levelI never thought possible
in any relationship.
And I don't think I would'veexperienced the level
of connection I have with Michael now,
had we have not journeyedtogether with dementia.
Its, I can't evendescribe what that's like.
It's quite profound.
And I never thought I wouldever say that.
(24:58):
You know, when there was a time when I
would've left him, possibly.(- Yeah, of course)
So to get to this stage,is, you know, really
that pleasantpersistence and journey.
- It's achievement in itself.- Yeah, exactly.
So, that feels really good.
And I really look forwardto seeing Michael when,
when we visit and we goout and do things together.
(25:19):
Like, tonight we've got theclosing event for our Odyssey,
our annual art exhibition on Friday.
He's going to lunch at the Angling Club
with his mates, who theywon the premisership
50 years ago, footy.
In Papua New Guinea.
So you know, he's stillconnected to those guys.
So, there's still alot to look forward to.
(25:41):
And look, I don't know
what the future holdsfor me at the moment.
I'm working one day a week,which is nice to be back in,
in the workforce again.
I am looking forward toretirement and taking things easy.
But, when and what that willlook like, I don't know.
I just go day-to-day,
(26:01):
and it's a bit like living with dementia.
I'm totally in the present moment.
- I think that's whatyou got to do. (-Yep)
Be in the present and takeeach day, one day at a time. (-Yeah)
Well, listen, Vicky,it's been such a pleasure
to meet you and thanks forcoming in and chatting.
- Thank you. Thank you, Jim.It's been a pleasure as well.
[Music]
(26:23):
[Music]
[Music]
- Thanks again to Vickifor sharing her story with us.
- Yeah, I know exactly whatVicki means when she
talks about the physical side of things.
Caring can take such abig toll on your mind
and your emotions, but actuallyyou don't often think about
(26:44):
what it does to your body.
It's actually oftenwhen you outsource some
of the physical aspects of caring
that you finally feel whatit's done to your body.
- If you could relate to whatVicki was saying about her
experience caring for Michael.
Or, if you want some tips on looking
after yourself as a carer.
Check out our bonus episodeabout burnout and self-care.
(27:07):
- You'll hear from Kristen whoworks on Dementia Australia's
National Helpline.
She'll give you simple,practical tips for self-care.
And if you want to go a bit deeper,
you can always call the helpline yourself.
- The helpline's free, and available
24/7, every day of the year.
Just call 1800 100 500.
(27:28):
[Music]
Hold the Moment is a podcastfrom Dementia Australia.
Produced by Dead Deadset Studios.
You can find more episodes
and resources on DementiaAustralia's website.
dementia.org.au.
The show is hosted by me, Jim Rogers.
(27:50):
- And by me, Hamish Macdonald.
The executive producers areKellie Riordan and Gia Moylan.
The producers are Madeleine Hawcroft
and Liam Riordan.
Production Manager is Ann Chesterman.
Sound Design by Ryan Pemberton.
A special thanks to the wholeteam at Dementia Australia
and to everyone who sharedtheir stories on this podcast.
[Music]
(28:13):
[Music]
[Music]
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