September 16, 2024 • 28 mins
Jim Rogers was once ‘captain organised’ when planning overseas trips with his husband Tyler. But after his diagnosis of younger onset dementia, he’s learnt to get Tyler to assist with online check-in, packing and itinerary planning.
And it’s not just setting off overseas that’s changed. Getting around town has become trickier now that Jim’s lost his driver’s licence.
Like Jim, Juanita wishes she could zip over to the shops to do her weekly groceries. But since being diagnosed with frontotemporal dementia, a trip like this needs a bit more planning.
After losing her driver’s licence, Juanita has relied on public transport and taxis to get around town – but she’s figured out some handy ways to maintain her independence.
Discover the tips and tricks you need to get out and about.
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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.
In this episode Juanita discusses how the sunflower lanyard for hidden disabilities has helped her travel independently. You can also watch this Dementia Australia webinar about driving and dementia.
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 recognises 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,
(00:20):
to those First Nationspeople joining us here today.
- Ladies and gentlemen, wehave started our descent...
(00:41):
(aeroplane landing)
- So, we are justchecking in at the hotel,
it's quite crazy in Bangkok airport
and the traffic wascrazy, but now we're here,
(01:02):
and just waiting to go to our room.
I just noticed that when I wastrying to pack all the cases,
(01:25):
it was like they just lookedchaotic like it was just,
normally, I would be very organised,
and have a system of some kind,
but everything was just sortof stuffed in everywhere,
and when I looked at it at theend, I was just sort of like,
you finish it, Ty, becauseit looks, I don't really know
what I was doing, justshoving everything in.
(01:54):
I've always loved travelling.
I love seeing new places,
and having the chance toswitch off and unwind.
I'm so grateful to beable to see the world,
and I've only added moredestinations to my bucket list
since being diagnosed withyounger-onset Alzheimer's.
But that doesn't mean navigating airports
or packing a suitcase is easyfor people with dementia.
(02:15):
And if you lose your licence,
it makes it even harderto get around town.
I'm Jim Rogers, andthis is Hold the Moment,
a podcast from Dementia Australiaabout life after diagnosis
My co-host for this series isjournalist, Hamish MacDonald,
and his father has Lewy body dementia,
so he knows a lot about this as well.
(02:37):
As you've heard, I've just returned
from a holiday overseaswith my husband, Tyler.
So I'm catching up with my friend, Hamish,
to share some of my holidaystories about the trip,
and to talk about how I manage my travel
now I've got dementia.
- Good day, Mate.- Good day, Hamish, so good to see you.
(02:58):
- I mean that was half atried an Australian accent.
I don't know.
- No, there's definitelyno Australian accent there,
It's very British, I cannotlose this accent, but...
- How was the trip?
- It was fantastic. Yeah,we had a really good time,
a lot of fun things, and veryhot, it was very hot there.
- As hot as here?- Hotter.
- So tell me who youwent to Thailand with?
(03:21):
- I went with my husband, Tyler,
and our very closefriends, Caroline and Nat,
who are from Perth.
- Tell me about theaccent, where's it from?
- That's beautiful, isn't it? This accent.
You can't get much worse.
I'm from a town called Redditch,
which nobody would reallyknow unless you're British,
(03:42):
but it's just outside Stratford-upon-Avon,
which is much nicer.
- Is that part of the appetite for travel,
the fact that you are from overseas,
you obviously live on theother side of the world?
- Well, I've alwaystravelled a lot, always,
ever since I was, I alwaystravelled a lot with my parents,
and then travelled a lot as a teen.
(04:04):
And then, you know, I'vealways enjoyed travelling,
and there's a very Britishthing that you want
to get out of the countryto have a holiday.
So when you do come to Australia,
the vastness of the country,we've seen quite a lot of it,
you know, the various cities, et cetera,
but we still have this ideology
(04:25):
that you leave the countryto have a complete break,
and so, there's so many placesthat are out there to see.
- And mentally, what's the thing
for you about being elsewhere?
- Well, I suppose when youleave and you go somewhere else,
it's quite a switch off,
it's as though you just really,totally go into holiday mode
and you leave everything behind,
(04:46):
so you sort of try to put itout of your head a little bit,
and have a break, read and relax.
- Was travelling this timeany different for you?
- It's not hugely different,
but I'm very reliant on Ty for travel now.
I used to be very much at theforefront to go and check in,
(05:07):
and check-in online, all those stuff.
Those things now just,I just can't seem to do,
and I don't feel confident to do now.
So I'm more of a puppythat's just behind him,
also going through chaotic airports,
I don't feel uncomfortableif I'm with him,
because I just, literally,I'm following him.
(05:39):
- When they were in Thailand,Jim relied on his husband, Ty,
plus his friends, Caroline and Nat
to navigate all sorts of things,
making sure he had his passport,
that his medicationswere packed, but also,
simple things like orderingfood and booking a taxi.
- I'm more of a follower now,I'm just happy to just follow.
(05:59):
Even when we go anywhere,you may not even notice,
but I generally am followingwhere you are going.
- I'm doing that on the trip.
- Yeah. (laughs)
- No, I am- Rather than trying to lead the way,
I just prefer to step backand follow where we're going,
and let you pick the table,let you pick the drinks,
even on the menu, I preferfor Tyler to pick the food.
(06:22):
I don't want to think, andsometimes, I keep looking
at the menu, looking, andlooking, and looking, and looking,
and I still can't makea decision or decide,
or work out what I actually want.
So as soon as he choosessomething, I jump on it
and go, "Ooh, that sounds nice!"
And I just copy, really.
(06:47):
- What you were describingabout you're not doing
the online check-in anymorereally, and you're hanging back,
that sounds quite familiarto me with my dad because,
not that he's doing overseas travel,
but there's technical stuffthat I know he can do,
but he seems to be opting not to
unless I'm there helping him with it.
- A hundred percent.
- Can you just explain whatan earth is going on there,
(07:10):
because I find it so frustrating.
I'm like, "I know you can do this."
- Yeah, I fully understand how he feels
and what's happening with him.
I can't explain it. I canonly say that, you know,
what I know, reallyfamiliar with, it's fine,
but anything new or slightly different,
(07:31):
or something I've got to learn,
it's like I can't retain it or store it,
and it's fearful, it'sfearful to me. So...
- Is it that you can't problem solve?
- It's almost as thoughsomeone's squeezing your head
because you just can'tabsorb this new stuff
that you've got to do, it's too hard,
and it sounds dramatic or ridiculous,
(07:53):
but it's just too much.
- Tell me about familiarityof environment though,
because even though you'vebeen to Thailand before,
and you're with peoplethat you know, just explain
what it's like being in areally unfamiliar environment,
living with what you are.
- The worst things are, with this,
(08:14):
comes a lot of sleeplessnights and very poor sleep.
So in the night, when you wake up,
there is a startling 30-seconds
of "where am I?"
Like I want to nip to theloo, how do I get to the loo?
So there's a panic for a minute,
(08:37):
so almost sort of wake and sit
on the side of the bedfor about 30 seconds
to really check where I am.
Ty always make sure there is some form
of light in the room, soit's never pitch black.
If you said to me, "Nip tothe room and get your stuff,"
that would probably be a bit overwhelming
to think, "Okay, what'sthe room number? No idea.
(09:00):
What is the floor of the hotel? No idea.
I know there's 60 floors there,
but I can't rememberwhat floor we were on,"
but it's like if you, you know,
there was on one occasionwhere I was somewhere
and they asked for the room number,
I just had no idea what it was.
Well, that just literally leads to you
(09:22):
just feeling thick and stupid,
because that's how I feel.
I just, because like, howhard is it to remember,
you know, but you,those things just don't,
the information goes in,and then it just drips out,
and you can put it back inagain, and it drips back out,
and it's just frustrating.
(09:42):
- If I were to say, "Gohome and pack your bags,
you're going on a holiday,"
how would you go with that?
- Ty would really be the one
who would take a leadin packing, normally.
So I do those things, but I do find
I'm going to him a lot saying,"What else do we need?"
Or sometimes, getting a bitconfused about what's going in,
(10:04):
and then what I've packed,I've forgotten what's in there.
So definitely, he's got tooversee, to double check.
Truth be told, he probablyneeds to empty out,
and start again and check.
So I think I've done this amazing job,
and I go, "It's all done, done!" You know,
and then he's literallylike, "There's no socks,"
(10:24):
you know, so he'll gothrough an overview thing.
So I think...
- It's Thailand, why do you need socks?
- I don't know, I don't know.
Even inside, if you wear trainers,
you're still going to need some socks.
Hidden ones.
(10:47):
It's so relaxing. I love Koh Samui.
We've had such a nicetime, haven't we, so far?
We're just at a little beachbar just outside the hotel,
right on the waters edge.
We are very blessed to be on this island,
and that view is just to die for,
turquoise water, white sand.
(11:09):
And this is so relaxing andtherapeutic for the mind,
when you do get these moments,makes you feel so grateful.
So cheers to our holiday so far.
(glasses clinking)
(11:35):
- It's not just trips overseas
that are more challenging with dementia.
Just getting around town canbe a logistical nightmare.
Especially if, like Jim,one of the consequences
of your diagnosis is losingyour driver's licence.
- I think I was justspeechless, and I challenged it
and felt very, I was so shocked
(11:57):
and just couldn't understandwhy couldn't I drive?
And apparently, with the formof Alzheimer's that I've got,
it can affect your decisionmaking during your driving,
so I suppose to cut a long story short,
you can take a left whenyou should go right,
you could go through a green light
(12:18):
and believe it's a red light,
or vice versa, whicheverway round that is.
- Where are you at on the wholeidea of being driven around
and being reliant on otherpeople just to do basic things?
- Hate it. I absolutely hate it,
and my kids say you canget Ubers, you know,
you can get a taxi, there's no problem.
(12:39):
Which I can, it's very niceto be picked up and stuff,
but it's not like yougetting behind the wheel
and being in charge of your own journey.
You know, if you want tonip into this coffee shop,
or pop into Woolies, orwherever it might be,
you just, you're reliantalways on someone else.
(13:05):
- Hi, thanks for calling 13CABS.
This is your first call withus, so please listen closely.
To get a taxi now, press one.
To schedule a pre-booking, press two.
(13:25):
- I put my bag in the middleso it's not on my feet.
- This is Juanita, she'stravelling to the studio by taxi.
Juanita lives alone and likemost of us with dementia,
she had to give up herdriver's license when she was
diagnosed with frontotemporaldementia back in 2019.
(13:48):
- I don't mind being on my own a bit,
but I don't like it when I'mon my own for a whole week
and only ever see someone online.
That's a little bit too much alone time.
I'm not a outside,going out sort of person
like my oldest son who's just,
(14:09):
a person he's just met is his friend,
he's that type of person.
I'm the opposite but Istill need some people.
I really only got my licensein my forties, so yeah,
I drove for about 10 yearsbefore I had to give it up.
Even though I didn't drivefor that long, I miss it.
(14:31):
When I moved here with bad knees,
you know, it got moreand more difficult for me
to get to public transport.
When it actually came, it was a shock
because I knew I coulddrive. I had been driving,
and I had been safelydriving because I'd limited
(14:54):
my driving to safeconditions, safe distances.
But it gave me, I could go to the shops,
I could go to the local thingsand gave me independence.
And just to have that suddenly ripped out
away from you is really hard,
when you're used to just beingable, if you feel like going
(15:17):
to Macca's for a coffeeat three in the morning,
well you can, that type of thing.
But now, you've got tohave your weeks planned
when I'm going to do something,
when I've actually gotwheels to get there.
(15:38):
Yeah, so it is hard.
- Without your license,those day-to-day activities
can become a real chore.
- When I do my groceries,I either order them online
or I go with a support worker,
because that's the only way I can do it.
There is buses in the area,
but with my bad knees, walkingto the buses is an issue.
(16:01):
So I can walk up tothe Inala shopping centres,
but I'll have to get a taxiback, I can't do both ways.
You go back, as far asI can remember back,
there was someone in thefamily with dementia.
It goes back to my great-grandfather,
(16:21):
who I met very briefly as a 15-month-old.
My absolute first memory.
- Wow- Is of dementia.
- Wow.
- Yeah, so we didn't findabout the genetic link until
dad had already lost three siblings to it.
- When did you start to experience
(16:41):
your own symptoms of dementia?
When did you start to noticethem yourself? How long ago?
- I found out in 2018that I had the mutation.
At the time, I was being tested,
I was pseudo-thinkingthat it may be happening.
(17:02):
It was just sort oflike, is it or is it not?
It was that was that sort of thing.
- Yeah.
- Enough that I'd actuallytold the genetic counsellor,
I think I might be having symptoms.
Yeah. So it was very,I was very close to it,
and I read just aboutevery scientific article
I could find on thedementia or the mutation.
(17:25):
And funnily, I came acrossthe diagnostic criterias
for the type of dementia I've got.
- Okay.
- What the doctor is actually looking for.
So as soon as I saw that in myself,
- You recognised it.
- I recognised it. It'sworth having it checked out.
Yeah, and at the time,the doctor said to me,
(17:47):
"I've never diagnosed anyone that early."
Just because I was proactive.
- Yeah. What are some of thesymptoms that you would say are
from frontotemporal dementia,the dementia that you've got,
what are the sort of thingsthat you're experiencing now?
- Well, the thing that I first noticed,
(18:08):
and I think it's probablyone of my bigger things now
is ultra distractibility.
Not that I can't concentrate on the task,
but if anything breaks my concentration,
I'll never get back to that task.
- Yeah, I fully understand that
because you go to something, for example,
(18:29):
you think, "I'm goingto water that plant."
You go and get a wateringcan, and then you notice
something else thatyou are thinking about,
and suddenly, you go off and do that,
and you get in a whole newworld of whatever it is
you've gone to do.
- I've had days when I'dget to the end of the day
and had nothing started,let alone completed
because of that.
(18:51):
Yeah.
But you've got a choiceof laughing or crying.
- A hundred percent
- And I've just got to the stage where,
"Oh, I've done it again."
You know, you just laugh at yourself.
- Yeah, I think so. I thinkyou just got to go with it.
- Because when yourealise what you're doing,
then what can you do?
You can't undo what'shappened in your brain,
(19:12):
you've just got to laughat what's happening.
- Sometimes, it is just really hard
to find the lighter side of things.
How did you feel, Juanita,
when you had to hand yourdriver's licence over?
- Oh, it is, you lose your independence.
Instead of being able to dothings when you want to do them,
you've got to plan it a weekahead or two weeks ahead,
(19:35):
not when you need it.
That's so much different.
- And there's also thatfeeling of spontaneity,
and when you want to just do something,
when you want to do it, whereyou want to go on your own,
just as and when.
And it is just, it's avery controlled thing
where you need to havesomebody pick you up
(19:55):
or somebody be with you.
It's just, it changes the whole dynamic
of the way you feel about yourself.
It knocks your confidence alittle bit, do you find that?
- Look, I don't thinkit knocks my confidence.
My confidence is in myself.
- Yeah.
- But it does knock my independence.
I don't have the choice todo it when I need to do it.
I have to choose to go whenI've got somebody else's wheels.
(20:22):
- And how about the actual journey itself?
Do you have to pre-plan quite a bit
to try and make sure you'vegot everything arranged?
Or do you get any sort ofconfusion with where you're going
if you don't pre-plan?
- If I've got, I'm going tobe taking a taxi by myself,
I have to pre-plan whenI'm going to book it
(20:43):
and that sort of thing.
I have to work out timeto get the taxi there,
you know, that type of thing.
- Yeah.
- Of course.
Yeah, it's, there's all,
there's little things likethat you've got to do,
pre-plan, but I think it's more
(21:04):
the one-off things thatyou've got to remember,
what am I going to needtoday when I'm going out,
and what times am I going outfor, and that sort of thing.
- So, you do quite a bit of advocacy work.
When you do travel for your various things
that you are attending to,
(21:26):
is there anything you particularly notice
with airports that couldbe quite difficult?
Or is there anything you find
that helps you during that travel?
- Yeah, well look, untilI found out about this
Hidden Disability lanyard,it was a big issue,
because of not just thedementia, but the arthritis.
(21:47):
You get to the airport, you'vegot to go through screening,
and you're on your feet for,
seems like hours before youget to where you're going.
- Yeah.
- With this lanyard, itmakes such a difference.
The scheme actually came from Europe.
There, it's very widespread,
but in Australia, it'smostly the airports.
But the staff in the airports,
(22:09):
the airline staff know about it.
And what this lanyardsays to them, to those
who are trained, this personhas a hidden disability.
It doesn't say what it is,
it doesn't shout it to anybody else.
But for those who need to help you,
they need to know thatyou have a disability.
- Okay.- That may not be visible.
(22:31):
- Yeah. I had no idea about that.
So that's particularly helpful,
particularly for thosepeople that, you know,
can get lost, or confused,or any disability, really.
- It's any disability thatmight not be visible to someone.
- Yeah.
- At a glance.
- That's amazing.- And the good thing about it,
you can wear it like this, butit's also got the back wear.
(22:53):
You can say what mydisability is, what I need,
who my support person you need to contact,
how to contact them.
- Yeah.
- So when I've got this,I go to the screening.
They'll see I've got a lanyard.
So, one of the staff willcome to me, "What do you need?
Is there something we can help?"
And I just, I'd explain what my needs are.
(23:14):
They'll take you around
so you don't have tostand in the line forever.
- Oh, really?
So they'll almost fast trackyou through a little bit
to help you, you know,not be waiting around.
- Yeah,
- And get fatigued
- It's that sort of thing. Yeah.
So, but also, I often, althoughI'm not wheelchair-bound,
(23:34):
I get a wheelchair just incase I've got to go a long way.
- Yeah.
- And having this lanyard actually
sort of gives that,
makes it such that peopledon't look at you and say,
"why do you need a wheelchair?" You know?
- Yeah, and this is the problem,
a lot of people don't really,
unless it's visible thatdisability instantly,
(23:56):
unless there's some particularthing that they can see.
Often, people don't reallyunderstand that, you know,
there can be more complex issues
behind what that person's experiencing.
So that is a fantastic idea.
- I think that anybody who hasdementia that is travelling
really needs to have it.
It's very useful.
(24:21):
- That Sunflower lanyardis a pretty great tool.
Have you tried one out yet, Jim?
- No, not yet, but Ithink it's a great idea,
and it's ideal for peoplewho are looking to travel.
- We're going to put some more information
on how to get ahold ofone in the show notes.
If you're after morespecialised tips for travel,
you can also call theNational Dementia Helpline,
(24:41):
and talk to an advisor like Kristen.
- If air travel is somethingthat you're used to
and familiar with, it might be quite easy
to consider planning the trip.
If this is your firsttime travelling by air,
it might be helpful tohave a travel companion
come along with you.
(25:03):
Some things to consider whenyou're travelling in an airport
is the time of day that you travel.
You might have a time ofday that's better for you,
where you're feeling more confident
in navigating new situations.
It might also be that theairport you're going to
has a time of day that's a little quieter,
it might make it easierfor you to navigate.
(25:26):
Many airlines and someairports do offer services
such as greeting you, even at the door,
to be able to help younavigate through the airport.
If that's something you thinkwould be helpful for you,
reach out to the airline or the airport
to find out if that'ssomething they offer.
(25:48):
It's really importantthat you're still able
to get out into the community.
And one of those ways mightbe using public transport.
If using public transport is something
that you do regularly,
you may have already built a relationship
with the bus driver,
or you may regularly askfor the same taxi driver
to help you get around.
(26:08):
Those are great strategies for being able
to give you confidence innavigating public transport.
If you're going to be going someplace new,
it might be helpful to trythe route a couple of times
with a friend or familymember that you trust.
It might be helpful to print off a map
or a list of the stops.
(26:30):
At Dementia Australia, we'vegot a webinar that talks about
the impact of not beingable to drive anymore.
And that's something that youcould check out on our website
and get some further ideas for ways to get
where you want to go, and dothe things that you want to do,
even if you are not the one that's able
to drive yourself there.
(26:52):
If you've got any questions
or you'd like support inmaking plans for travelling,
you can contact theNational Dementia Helpline
on 1800 100 500.
We're here 24-hours a day,every day of the year.
(27:14):
- Hold the Moment is a podcastfrom Dementia Australia.
It's produced by Deadset Studios.
You can find more episodes and resources
through the Dementia Australiawebsite, dementia.org au.
Now, don't forget tofollow Hold the Moment
on your podcast app soyou don't miss an episode.
The show is hosted by me, Jim Rogers,
(27:35):
- And by me, Hamish MacDonald.
The executive producers areKelly Ridden and Grace Pashley.
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,
(00:20):
to those First Nationspeople joining us here today.
- Ladies and gentlemen, wehave started our descent...
(00:41):
(aeroplane landing)
- So, we are justchecking in at the hotel,
it's quite crazy in Bangkok airport
and the traffic wascrazy, but now we're here,
(01:02):
and just waiting to go to our room.
I just noticed that when I wastrying to pack all the cases,
(01:25):
it was like they just lookedchaotic like it was just,
normally, I would be very organised,
and have a system of some kind,
but everything was just sortof stuffed in everywhere,
and when I looked at it at theend, I was just sort of like,
you finish it, Ty, becauseit looks, I don't really know
what I was doing, justshoving everything in.
(01:54):
I've always loved travelling.
I love seeing new places,
and having the chance toswitch off and unwind.
I'm so grateful to beable to see the world,
and I've only added moredestinations to my bucket list
since being diagnosed withyounger-onset Alzheimer's.
But that doesn't mean navigating airports
or packing a suitcase is easyfor people with dementia.
(02:15):
And if you lose your licence,
it makes it even harderto get around town.
I'm Jim Rogers, andthis is Hold the Moment,
a podcast from Dementia Australiaabout life after diagnosis
My co-host for this series isjournalist, Hamish MacDonald,
and his father has Lewy body dementia,
so he knows a lot about this as well.
(02:37):
As you've heard, I've just returned
from a holiday overseaswith my husband, Tyler.
So I'm catching up with my friend, Hamish,
to share some of my holidaystories about the trip,
and to talk about how I manage my travel
now I've got dementia.
- Good day, Mate.- Good day, Hamish, so good to see you.
(02:58):
- I mean that was half atried an Australian accent.
I don't know.
- No, there's definitelyno Australian accent there,
It's very British, I cannotlose this accent, but...
- How was the trip?
- It was fantastic. Yeah,we had a really good time,
a lot of fun things, and veryhot, it was very hot there.
- As hot as here?- Hotter.
- So tell me who youwent to Thailand with?
(03:21):
- I went with my husband, Tyler,
and our very closefriends, Caroline and Nat,
who are from Perth.
- Tell me about theaccent, where's it from?
- That's beautiful, isn't it? This accent.
You can't get much worse.
I'm from a town called Redditch,
which nobody would reallyknow unless you're British,
(03:42):
but it's just outside Stratford-upon-Avon,
which is much nicer.
- Is that part of the appetite for travel,
the fact that you are from overseas,
you obviously live on theother side of the world?
- Well, I've alwaystravelled a lot, always,
ever since I was, I alwaystravelled a lot with my parents,
and then travelled a lot as a teen.
(04:04):
And then, you know, I'vealways enjoyed travelling,
and there's a very Britishthing that you want
to get out of the countryto have a holiday.
So when you do come to Australia,
the vastness of the country,we've seen quite a lot of it,
you know, the various cities, et cetera,
but we still have this ideology
(04:25):
that you leave the countryto have a complete break,
and so, there's so many placesthat are out there to see.
- And mentally, what's the thing
for you about being elsewhere?
- Well, I suppose when youleave and you go somewhere else,
it's quite a switch off,
it's as though you just really,totally go into holiday mode
and you leave everything behind,
(04:46):
so you sort of try to put itout of your head a little bit,
and have a break, read and relax.
- Was travelling this timeany different for you?
- It's not hugely different,
but I'm very reliant on Ty for travel now.
I used to be very much at theforefront to go and check in,
(05:07):
and check-in online, all those stuff.
Those things now just,I just can't seem to do,
and I don't feel confident to do now.
So I'm more of a puppythat's just behind him,
also going through chaotic airports,
I don't feel uncomfortableif I'm with him,
because I just, literally,I'm following him.
(05:39):
- When they were in Thailand,Jim relied on his husband, Ty,
plus his friends, Caroline and Nat
to navigate all sorts of things,
making sure he had his passport,
that his medicationswere packed, but also,
simple things like orderingfood and booking a taxi.
- I'm more of a follower now,I'm just happy to just follow.
(05:59):
Even when we go anywhere,you may not even notice,
but I generally am followingwhere you are going.
- I'm doing that on the trip.
- Yeah. (laughs)
- No, I am- Rather than trying to lead the way,
I just prefer to step backand follow where we're going,
and let you pick the table,let you pick the drinks,
even on the menu, I preferfor Tyler to pick the food.
(06:22):
I don't want to think, andsometimes, I keep looking
at the menu, looking, andlooking, and looking, and looking,
and I still can't makea decision or decide,
or work out what I actually want.
So as soon as he choosessomething, I jump on it
and go, "Ooh, that sounds nice!"
And I just copy, really.
(06:47):
- What you were describingabout you're not doing
the online check-in anymorereally, and you're hanging back,
that sounds quite familiarto me with my dad because,
not that he's doing overseas travel,
but there's technical stuffthat I know he can do,
but he seems to be opting not to
unless I'm there helping him with it.
- A hundred percent.
- Can you just explain whatan earth is going on there,
(07:10):
because I find it so frustrating.
I'm like, "I know you can do this."
- Yeah, I fully understand how he feels
and what's happening with him.
I can't explain it. I canonly say that, you know,
what I know, reallyfamiliar with, it's fine,
but anything new or slightly different,
(07:31):
or something I've got to learn,
it's like I can't retain it or store it,
and it's fearful, it'sfearful to me. So...
- Is it that you can't problem solve?
- It's almost as thoughsomeone's squeezing your head
because you just can'tabsorb this new stuff
that you've got to do, it's too hard,
and it sounds dramatic or ridiculous,
(07:53):
but it's just too much.
- Tell me about familiarityof environment though,
because even though you'vebeen to Thailand before,
and you're with peoplethat you know, just explain
what it's like being in areally unfamiliar environment,
living with what you are.
- The worst things are, with this,
(08:14):
comes a lot of sleeplessnights and very poor sleep.
So in the night, when you wake up,
there is a startling 30-seconds
of "where am I?"
Like I want to nip to theloo, how do I get to the loo?
So there's a panic for a minute,
(08:37):
so almost sort of wake and sit
on the side of the bedfor about 30 seconds
to really check where I am.
Ty always make sure there is some form
of light in the room, soit's never pitch black.
If you said to me, "Nip tothe room and get your stuff,"
that would probably be a bit overwhelming
to think, "Okay, what'sthe room number? No idea.
(09:00):
What is the floor of the hotel? No idea.
I know there's 60 floors there,
but I can't rememberwhat floor we were on,"
but it's like if you, you know,
there was on one occasionwhere I was somewhere
and they asked for the room number,
I just had no idea what it was.
Well, that just literally leads to you
(09:22):
just feeling thick and stupid,
because that's how I feel.
I just, because like, howhard is it to remember,
you know, but you,those things just don't,
the information goes in,and then it just drips out,
and you can put it back inagain, and it drips back out,
and it's just frustrating.
(09:42):
- If I were to say, "Gohome and pack your bags,
you're going on a holiday,"
how would you go with that?
- Ty would really be the one
who would take a leadin packing, normally.
So I do those things, but I do find
I'm going to him a lot saying,"What else do we need?"
Or sometimes, getting a bitconfused about what's going in,
(10:04):
and then what I've packed,I've forgotten what's in there.
So definitely, he's got tooversee, to double check.
Truth be told, he probablyneeds to empty out,
and start again and check.
So I think I've done this amazing job,
and I go, "It's all done, done!" You know,
and then he's literallylike, "There's no socks,"
(10:24):
you know, so he'll gothrough an overview thing.
So I think...
- It's Thailand, why do you need socks?
- I don't know, I don't know.
Even inside, if you wear trainers,
you're still going to need some socks.
Hidden ones.
(10:47):
It's so relaxing. I love Koh Samui.
We've had such a nicetime, haven't we, so far?
We're just at a little beachbar just outside the hotel,
right on the waters edge.
We are very blessed to be on this island,
and that view is just to die for,
turquoise water, white sand.
(11:09):
And this is so relaxing andtherapeutic for the mind,
when you do get these moments,makes you feel so grateful.
So cheers to our holiday so far.
(glasses clinking)
(11:35):
- It's not just trips overseas
that are more challenging with dementia.
Just getting around town canbe a logistical nightmare.
Especially if, like Jim,one of the consequences
of your diagnosis is losingyour driver's licence.
- I think I was justspeechless, and I challenged it
and felt very, I was so shocked
(11:57):
and just couldn't understandwhy couldn't I drive?
And apparently, with the formof Alzheimer's that I've got,
it can affect your decisionmaking during your driving,
so I suppose to cut a long story short,
you can take a left whenyou should go right,
you could go through a green light
(12:18):
and believe it's a red light,
or vice versa, whicheverway round that is.
- Where are you at on the wholeidea of being driven around
and being reliant on otherpeople just to do basic things?
- Hate it. I absolutely hate it,
and my kids say you canget Ubers, you know,
you can get a taxi, there's no problem.
(12:39):
Which I can, it's very niceto be picked up and stuff,
but it's not like yougetting behind the wheel
and being in charge of your own journey.
You know, if you want tonip into this coffee shop,
or pop into Woolies, orwherever it might be,
you just, you're reliantalways on someone else.
(13:05):
- Hi, thanks for calling 13CABS.
This is your first call withus, so please listen closely.
To get a taxi now, press one.
To schedule a pre-booking, press two.
(13:25):
- I put my bag in the middleso it's not on my feet.
- This is Juanita, she'stravelling to the studio by taxi.
Juanita lives alone and likemost of us with dementia,
she had to give up herdriver's license when she was
diagnosed with frontotemporaldementia back in 2019.
(13:48):
- I don't mind being on my own a bit,
but I don't like it when I'mon my own for a whole week
and only ever see someone online.
That's a little bit too much alone time.
I'm not a outside,going out sort of person
like my oldest son who's just,
(14:09):
a person he's just met is his friend,
he's that type of person.
I'm the opposite but Istill need some people.
I really only got my licensein my forties, so yeah,
I drove for about 10 yearsbefore I had to give it up.
Even though I didn't drivefor that long, I miss it.
(14:31):
When I moved here with bad knees,
you know, it got moreand more difficult for me
to get to public transport.
When it actually came, it was a shock
because I knew I coulddrive. I had been driving,
and I had been safelydriving because I'd limited
(14:54):
my driving to safeconditions, safe distances.
But it gave me, I could go to the shops,
I could go to the local thingsand gave me independence.
And just to have that suddenly ripped out
away from you is really hard,
when you're used to just beingable, if you feel like going
(15:17):
to Macca's for a coffeeat three in the morning,
well you can, that type of thing.
But now, you've got tohave your weeks planned
when I'm going to do something,
when I've actually gotwheels to get there.
(15:38):
Yeah, so it is hard.
- Without your license,those day-to-day activities
can become a real chore.
- When I do my groceries,I either order them online
or I go with a support worker,
because that's the only way I can do it.
There is buses in the area,
but with my bad knees, walkingto the buses is an issue.
(16:01):
So I can walk up tothe Inala shopping centres,
but I'll have to get a taxiback, I can't do both ways.
You go back, as far asI can remember back,
there was someone in thefamily with dementia.
It goes back to my great-grandfather,
(16:21):
who I met very briefly as a 15-month-old.
My absolute first memory.
- Wow- Is of dementia.
- Wow.
- Yeah, so we didn't findabout the genetic link until
dad had already lost three siblings to it.
- When did you start to experience
(16:41):
your own symptoms of dementia?
When did you start to noticethem yourself? How long ago?
- I found out in 2018that I had the mutation.
At the time, I was being tested,
I was pseudo-thinkingthat it may be happening.
(17:02):
It was just sort oflike, is it or is it not?
It was that was that sort of thing.
- Yeah.
- Enough that I'd actuallytold the genetic counsellor,
I think I might be having symptoms.
Yeah. So it was very,I was very close to it,
and I read just aboutevery scientific article
I could find on thedementia or the mutation.
(17:25):
And funnily, I came acrossthe diagnostic criterias
for the type of dementia I've got.
- Okay.
- What the doctor is actually looking for.
So as soon as I saw that in myself,
- You recognised it.
- I recognised it. It'sworth having it checked out.
Yeah, and at the time,the doctor said to me,
(17:47):
"I've never diagnosed anyone that early."
Just because I was proactive.
- Yeah. What are some of thesymptoms that you would say are
from frontotemporal dementia,the dementia that you've got,
what are the sort of thingsthat you're experiencing now?
- Well, the thing that I first noticed,
(18:08):
and I think it's probablyone of my bigger things now
is ultra distractibility.
Not that I can't concentrate on the task,
but if anything breaks my concentration,
I'll never get back to that task.
- Yeah, I fully understand that
because you go to something, for example,
(18:29):
you think, "I'm goingto water that plant."
You go and get a wateringcan, and then you notice
something else thatyou are thinking about,
and suddenly, you go off and do that,
and you get in a whole newworld of whatever it is
you've gone to do.
- I've had days when I'dget to the end of the day
and had nothing started,let alone completed
because of that.
(18:51):
Yeah.
But you've got a choiceof laughing or crying.
- A hundred percent
- And I've just got to the stage where,
"Oh, I've done it again."
You know, you just laugh at yourself.
- Yeah, I think so. I thinkyou just got to go with it.
- Because when yourealise what you're doing,
then what can you do?
You can't undo what'shappened in your brain,
(19:12):
you've just got to laughat what's happening.
- Sometimes, it is just really hard
to find the lighter side of things.
How did you feel, Juanita,
when you had to hand yourdriver's licence over?
- Oh, it is, you lose your independence.
Instead of being able to dothings when you want to do them,
you've got to plan it a weekahead or two weeks ahead,
(19:35):
not when you need it.
That's so much different.
- And there's also thatfeeling of spontaneity,
and when you want to just do something,
when you want to do it, whereyou want to go on your own,
just as and when.
And it is just, it's avery controlled thing
where you need to havesomebody pick you up
(19:55):
or somebody be with you.
It's just, it changes the whole dynamic
of the way you feel about yourself.
It knocks your confidence alittle bit, do you find that?
- Look, I don't thinkit knocks my confidence.
My confidence is in myself.
- Yeah.
- But it does knock my independence.
I don't have the choice todo it when I need to do it.
I have to choose to go whenI've got somebody else's wheels.
(20:22):
- And how about the actual journey itself?
Do you have to pre-plan quite a bit
to try and make sure you'vegot everything arranged?
Or do you get any sort ofconfusion with where you're going
if you don't pre-plan?
- If I've got, I'm going tobe taking a taxi by myself,
I have to pre-plan whenI'm going to book it
(20:43):
and that sort of thing.
I have to work out timeto get the taxi there,
you know, that type of thing.
- Yeah.
- Of course.
Yeah, it's, there's all,
there's little things likethat you've got to do,
pre-plan, but I think it's more
(21:04):
the one-off things thatyou've got to remember,
what am I going to needtoday when I'm going out,
and what times am I going outfor, and that sort of thing.
- So, you do quite a bit of advocacy work.
When you do travel for your various things
that you are attending to,
(21:26):
is there anything you particularly notice
with airports that couldbe quite difficult?
Or is there anything you find
that helps you during that travel?
- Yeah, well look, untilI found out about this
Hidden Disability lanyard,it was a big issue,
because of not just thedementia, but the arthritis.
(21:47):
You get to the airport, you'vegot to go through screening,
and you're on your feet for,
seems like hours before youget to where you're going.
- Yeah.
- With this lanyard, itmakes such a difference.
The scheme actually came from Europe.
There, it's very widespread,
but in Australia, it'smostly the airports.
But the staff in the airports,
(22:09):
the airline staff know about it.
And what this lanyardsays to them, to those
who are trained, this personhas a hidden disability.
It doesn't say what it is,
it doesn't shout it to anybody else.
But for those who need to help you,
they need to know thatyou have a disability.
- Okay.- That may not be visible.
(22:31):
- Yeah. I had no idea about that.
So that's particularly helpful,
particularly for thosepeople that, you know,
can get lost, or confused,or any disability, really.
- It's any disability thatmight not be visible to someone.
- Yeah.
- At a glance.
- That's amazing.- And the good thing about it,
you can wear it like this, butit's also got the back wear.
(22:53):
You can say what mydisability is, what I need,
who my support person you need to contact,
how to contact them.
- Yeah.
- So when I've got this,I go to the screening.
They'll see I've got a lanyard.
So, one of the staff willcome to me, "What do you need?
Is there something we can help?"
And I just, I'd explain what my needs are.
(23:14):
They'll take you around
so you don't have tostand in the line forever.
- Oh, really?
So they'll almost fast trackyou through a little bit
to help you, you know,not be waiting around.
- Yeah,
- And get fatigued
- It's that sort of thing. Yeah.
So, but also, I often, althoughI'm not wheelchair-bound,
(23:34):
I get a wheelchair just incase I've got to go a long way.
- Yeah.
- And having this lanyard actually
sort of gives that,
makes it such that peopledon't look at you and say,
"why do you need a wheelchair?" You know?
- Yeah, and this is the problem,
a lot of people don't really,
unless it's visible thatdisability instantly,
(23:56):
unless there's some particularthing that they can see.
Often, people don't reallyunderstand that, you know,
there can be more complex issues
behind what that person's experiencing.
So that is a fantastic idea.
- I think that anybody who hasdementia that is travelling
really needs to have it.
It's very useful.
(24:21):
- That Sunflower lanyardis a pretty great tool.
Have you tried one out yet, Jim?
- No, not yet, but Ithink it's a great idea,
and it's ideal for peoplewho are looking to travel.
- We're going to put some more information
on how to get ahold ofone in the show notes.
If you're after morespecialised tips for travel,
you can also call theNational Dementia Helpline,
(24:41):
and talk to an advisor like Kristen.
- If air travel is somethingthat you're used to
and familiar with, it might be quite easy
to consider planning the trip.
If this is your firsttime travelling by air,
it might be helpful tohave a travel companion
come along with you.
(25:03):
Some things to consider whenyou're travelling in an airport
is the time of day that you travel.
You might have a time ofday that's better for you,
where you're feeling more confident
in navigating new situations.
It might also be that theairport you're going to
has a time of day that's a little quieter,
it might make it easierfor you to navigate.
(25:26):
Many airlines and someairports do offer services
such as greeting you, even at the door,
to be able to help younavigate through the airport.
If that's something you thinkwould be helpful for you,
reach out to the airline or the airport
to find out if that'ssomething they offer.
(25:48):
It's really importantthat you're still able
to get out into the community.
And one of those ways mightbe using public transport.
If using public transport is something
that you do regularly,
you may have already built a relationship
with the bus driver,
or you may regularly askfor the same taxi driver
to help you get around.
(26:08):
Those are great strategies for being able
to give you confidence innavigating public transport.
If you're going to be going someplace new,
it might be helpful to trythe route a couple of times
with a friend or familymember that you trust.
It might be helpful to print off a map
or a list of the stops.
(26:30):
At Dementia Australia, we'vegot a webinar that talks about
the impact of not beingable to drive anymore.
And that's something that youcould check out on our website
and get some further ideas for ways to get
where you want to go, and dothe things that you want to do,
even if you are not the one that's able
to drive yourself there.
(26:52):
If you've got any questions
or you'd like support inmaking plans for travelling,
you can contact theNational Dementia Helpline
on 1800 100 500.
We're here 24-hours a day,every day of the year.
(27:14):
- Hold the Moment is a podcastfrom Dementia Australia.
It's produced by Deadset Studios.
You can find more episodes and resources
through the Dementia Australiawebsite, dementia.org au.
Now, don't forget tofollow Hold the Moment
on your podcast app soyou don't miss an episode.
The show is hosted by me, Jim Rogers,
(27:35):
- And by me, Hamish MacDonald.
The executive producers areKelly Ridden and Grace Pashley.
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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