Episode: Hold on to travel
Navigating planes, trains and automobiles with dementia
Whether it’s ticking off overseas travel bucket lists or simply travelling across town, getting around can take a bit of extra planning when you’re living with dementia. Hear stories of travel adventures and strategies for getting about independently while living with dementia.
Transcript
[BEGINNING OF RECORDED MATERIAL]
Kevyn: Hello, my name is Kevyn. I am a First Nations Advocate with Dementia Australia. For more than 50,000 years we have come together to trade knowledge: to learn and to teach. Today we join to keep 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 joining us here today.
Airplane announcement: Ladies and gentlemen, we have started our descent.
[Music and traffic noises.]
Jim: We're just checking in at the hotel. It was quite crazy in Bangkok airport and the traffic was crazy. But now we're here and just waiting to go to our room.
[Music and sound of door unlocking]
I just noticed that when I was trying to pack all the cases, it was like they just looked chaotic. Like it was just - normally I'd be very organised and have a system of some kind, but everything was just sort of stuffed in everywhere. And when I looked at it at the end, I don't really know what I was doing shoving everything in. I've always loved travelling, I love seeing new places and having the chance to switch off and unwind. I'm so grateful to be able to see the world and I've only added more destinations to my bucket list since being diagnosed with younger onset Alzheimer's. But that doesn't mean navigating airports or packing a suitcase is easy for people with dementia. And if you lose your licence, it makes it even harder to get around town. I'm Jim and this is Hold the Moment: a podcast from Dementia Australia about life after diagnosis. My co-host for this series is journalist, Hamish. And his father has Lewy body dementia, so he knows a lot about this as well. As you've heard, I've just returned from a holiday overseas with my husband, Tyler. So I'm catching up with my friend Hamish to share some of my holiday stories about the trip and to talk about how I manage my travel, now I've got dementia.
Hamish: G'day mate.
Jim: G'day Hamish. So good to see you.
Hamish: I mean that was half a try at an Australian accent. I don't know.
Jim: No, there's definitely no Australian accent there: it's very British. I cannot lose this accent.
Hamish: How was the trip?
Jim: It was fantastic. Yeah, we had a really good time. A lot of fun things and very hot. It was very hot there.
Hamish: As hot as here?
Jim: Hotter.
Hamish: So tell me who you went to Thailand with?
Jim: I went with my husband, Tyler, and our very close friends Caroline and Nat, who are from Perth.
Hamish: Tell me about the accent? Where is it from?
Jim: It's beautiful isn't it, this accent? You can't get much worse. I'm from a town called Redditch, which nobody would really know, unless you're British. But it's just outside Stratford-upon-Avon, which is much nicer.
Hamish: Is that part of you know, the appetite for travel, the fact that you are from overseas, you obviously live on the other side of the world?
Jim: Well, we've... I've always travelled a lot, always, ever since I was... I always travelled a lot with my parents and then travelled a lot as a teen. And then, you know, I've always enjoyed travelling, and there's a very British thing that you want to get out of the country, to 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, etcetera. But we still have this ideology that you leave the country to have a complete break. And so, there's so many places that are out there to see.
Hamish: And mentally, what's the thing for you about being elsewhere?
Jim: Well, I suppose when you leave 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. So you sort of try to put it out of your head a little bit and have a break, and read and relax and...
Hamish: Was travelling this time any different for you?
Jim: It's not hugely different, but I'm very reliant on Ty for travel now. I used to be very much at the forefront to, you know go check in, and check in online - those things I just, I just can't seem to do and I don't feel confident to do now. So I'm more of a puppy that's just behind him. Also going through chaotic airports, I don't feel uncomfortable if I'm with him, because I just literally, I'm following him.
Hamish: 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 medications were packed. But also simple things: like ordering food, booking a taxi.
Jim: I'm more of a follower now, just happy to just follow. Even when we go anywhere, you may not even notice, but I genuinely am following where you're going.
Caroline: I'm doing that in the trip. [Laughter] No, I am.
Jim: Rather than trying to lead the way, I just prefer to step back and follow where we're going and let you pick the table, let you pick the drinks, even on the menu. I prefer for Tyler to pick the food. I don't want to think. And sometimes I keep looking at the menu - looking and looking and looking and looking - and I still can't make a decision or decide or work out what I actually want. So soon as he chooses something, I jump on it and go "ooh, that sounds..." I just copy really.
Hamish: What you were describing about you're not doing the online check in anymore, really, and you're hanging back. That sounds quite familiar to me with my dad, because (not that he's doing overseas travel), but there's technical stuff that I know he can do. But he seems to be opting not to, unless I'm there helping him with it.
Jim: A hundred percent.
Hamish: Can you just explain what on earth is going on there? Because I find it so frustrating. I'm like, I know you can, I know you can do this.
Jim: Yeah, I fully, fully understand what he how he feels and what what's happening with him. I can't explain it, I can only say that, you know, what I know, really familiar with is fine. But anything new or slightly different or something I've got to learn. Like, it's like I can't retain it or store it and it's fearful. It's fearful to me. So...
Hamish: Is it that you can't problem-solve?
Jim: It's like, it's like, it's almost as though someone's squeezing your head. Because you just can't absorb this new stuff that you've got to do. It's too hard. And it sounds dramatic or ridiculous. But it's just, it's just too much.
Hamish: Tell me about familiarity of environment, though. Because even though you've been to Thailand before, and you're with people that you know, just explain what it's like being in a really unfamiliar environment, living with what you are.
Jim: The worst things are, with this comes a lot of sleepless nights 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 the loo'. 'How do I get to the loo?' So there's a panic, for a minute. So almost sort of wake and sit on the side of the bed for about 30 seconds to really check where I am. Ty always makes sure there is some form of light in the room. So it's never, never pitch black. If you said to me nip to the room and get your stuff, that would probably be a bit overwhelming to think, 'okay, what's the room number? No idea. What is the floor of the hotel? No idea.' I know there's 60 floors there, but I can't remember what floor we were on. But it's like, if you, you know, there was on one occasion where I was somewhere and they asked for the room number and I had just had no idea what it was. Well, that just literally leads to you just feeling thick and stupid. That's how I feel. Because how hard is it to remember it? You know, but you those things just don't. It's the information goes in. And then it just drips out and you can put it back in again and it drips back out. And it's just frustrating.
Hamish: If I were to say, go home and pack your bags, you're going on a holiday, how would you go with that?
Jim: Ty would really be the one who would take a lead in 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 bit confused about what's going in and then what I've packed: I've forgotten what's in there. So definitely he's got to oversee, to double check: truth be told probably needs to empty out and start again and check. So I think I've done this amazing job, but and I go "it's all done, done" you know and then he's literally like "there's no socks". So he'll go through and overview things. So, I think...
Hamish: It's Thailand. Why do you need socks?
Jim: I don't know. I don't know. Even inside if you wear trainers you still gonna need some socks - hidden ones. [Music plays.] So relaxing, I love Koh Samui. We've had such a nice time, haven't we so far? We're just at a little beach bar just outside the hotel, right on the water's edge. We're very blessed to be on this island. And that view is just to die for: turquoise water, white sand. And this is so relaxing and therapeutic for the mind, when you do get these moments. Makes you feel so grateful. So cheers, to our holiday so far. [Glasses clink.]
Hamish: It's not just trips overseas that are more challenging with dementia. Just getting around town can be a logistical nightmare. Especially if, like Jim, one of the consequences of your diagnosis is losing your driver's licence.
Jim: I think I was just speechless. And I challenged it and felt very... I was so shocked and just couldn't understand why couldn't I drive? And apparently, with the form of Alzheimer's that I've got, it can affect your decision-making, during your driving. So, I suppose, to cut long story short, you can take a left when you should go right. You could go through a green light and believe it's a red light, or vice versa, whichever way around that is.
Hamish: Oh, where are you at on the whole idea of being driven around and being reliant on other people just to do basic things?
Jim: Hate it. I absolutely hate it. And my kids say "you can get Ubers" you know, "you can get a taxi''. "There's no problem," which I can. It's very nice to be picked up and stuff. But it's not like you getting behind the wheel and being in charge of your own journey. You know, if you want to nip into this coffee shop or pop into Woollies, or wherever it might be. You just, you're reliant always on someone else.
[Recorded voice.] "Hi, thanks for calling 13cabs. This is your first call with us, so please listen closely. To get a taxi now, press one; to schedule a pre-booking, press two."
Juanita: I'll put my bag in the middle so it's not on my feet.
Jim: This is Juanita. She's travelling to the studio by taxi. Juanita lives alone and like most of us with dementia, she had to give up a driver's licence when she was diagnosed with frontotemporal dementia back in 2019.
Juanita: I don't mind being on my own a bit, but I don't like it when I'm on my own for a whole week and only ever see someone online. That's a little bit too much alone-time. I'm not like, I'm not a outside going-out sort of person like my oldest son, who's just, a person he's just met is his friend. He's that type of person. I'm the opposite. But I still need some people. I really only got my licence in the, in my 40s. So yeah, I drove for about 10 years before I had to give it up. Even though I didn't drive for that long it was... I miss it. When I moved here, with bad knees, you know it was, it got more and more difficult for me to get to public transport. When it actually came, it was a shock, because I knew I could drive. I had been driving and I had been safely driving because I'd limit my driving to safe conditions, safe distances. But it gave me... I could go to the shops, I could go to the local things and it gave me independence. And just to have that suddenly whipped out away from you is really hard. When you're used to just being able, if you feel like going for, go to Maccas for a coffee at three in the morning, well you can – that type of thing. But now, you've got to have your weeks planned, when I'm going to do something. When I've actually got wheels to get there. Yes. So, it is hard.
Jim: Without your licence, those day-to-day activities can become a real chore.
Juanita: 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, walking to the buses is an issue. So, I can walk up to the Inala shopping centres, but I'll have to get a taxi back. I can't do both ways. [Music plays.] You go back (as far as I can remember back) there was someone in the family with dementia: goes back to my great grandfather, who I met very briefly as a 15 month older. My absolute first memory...
Jim: Wow.
Juanita: ...is of dementia.
Jim: Wow.
Juanita: Yes, so we didn't find about the genetic link until Dad had already lost three siblings to it.
Jim: When did you start to experience your own symptoms of dementia? When did you start to notice them yourself? How long ago?
Juanita: I'd found out in 2018 that I had the mutation. At the time I was being tested. I was pseudo-thinking that it may be happening. It was just sort of like, is it or is it not? It was that sort of thing.
Jim: Yeah.
Juanita: Enough that I'd actually told the genetic counselors that I think I might be having symptoms. Yeah, so it was very, I was very close to it. And I read just about every scientific article I could find on the dementia, or the mutation. And funnily, I came across the diagnostic criteria's for the type of dementia I've got.
Jim: OK
Juanita: What the doctor is actually looking for. So as soon as I saw that in myself...
Jim: You recognised it.
Juanita: I recognised it: it's worth having it checked out. Yeah. And at the time, the doctor said to me, I've never diagnosed anyone that early. Just because I was proactive.
Jim: Yeah. What are some of the symptoms that you would say, are from frontotemporal dementia? The dementia that you've got? What are the sorts of things that you're experiencing now?
Juanita: Well, the thing that I first noticed, and I think is probably one of my bigger things now, is ultra-distractibility. Not that I can't concentrate on a task, but if anything breaks my concentration, I'll never get back to that task.
Jim: Yeah, I fully understand that. Because you go to something, for example, you think "I'm gonna water that plant". You go and get a watering can. And then you notice something else that you're thinking about. And suddenly you go off and do that, and you get in a whole new world of whatever it is you've gone to do.
Juanita: I've had days when I'd get to the end of the day, and had nothing started, let alone completed because of that. Yeah. But you've got a choice of laughing or crying.
Jim: A hundred per cent.
Juanita: And I've just got to the stage where “oh: I'll do it again - ha ha”. You know, you just laugh at yourself.
Jim: Yeah, I think so. You've just got to go with it.
Juanita: Because when you realise what you're doing, then what can you do? You can't undo what's happened in your brain, you've just got to laugh at what's happening.
Jim: Sometimes it's just really hard to find a lighter side of things. How did you feel Juanita when you had to hand your driver's licence over?
Juanita: Oh! It is... you lose your independence. Instead of being able to do things when you want to do them, you've got to plan it a week ahead or two weeks ahead. Not when you need it. That's so much different.
Jim: And there's also that feeling of spontaneity of when you want to just do something, when you want to do it, where you want to go, on your own, just as and when - and it's just it's a very controlled thing where you need to have somebody pick you up or somebody be with you. It's just, it changes the whole dynamic of the way you feel about yourself: it knocks your confidence a little bit. Do you find that?
Juanita: Look, I don't think it knocks my confidence. My confidence is in myself.
Jim: Yeah.
Juanita: But it does knock my independence. I don't have the choice to do it when I need to do it, I have to choose to go when I've got somebody else's wheels.
Jim: And how about the actual journey itself? Do you have to pre-plan quite a bit to try and make sure you've got everything arranged? Or do you get any sort of confusion with where you're going, if you don't pre-plan?
Juanita: If I've got, I'm going to be taking a taxi by myself, I have to pre-plan when I'm going to book it and that sort of thing. I have to work out time to get the taxi there. You know, that type of thing?
Jim: Yeah.
Juanita: Of course. Yeah, it's, there's all little things like that you've got to plan, but I think it's more the one-off things that you've got to remember. "What am I going to need today when I'm going out? And what times am I going out for" and that sort of thing.
Jim: So you do quite a bit of advocacy work. When you do travel for your various things that you're attending to, is there anything you particularly notice with airports that could be quite difficult? Or is there anything you find that helps you during that travel?
Juanita: Yeah, well look, until I until I found out about this 'hidden disability' lanyard, it was a big issue. Because of not just the dementia, but the arthritis. You get to the airport, you got to go through a screening and you’re on your feet for it seems like hours before you get to where you're going. Yeah. With this lanyard, it makes such, much a difference. The scheme actually came from Europe: there, it's very widespread. But in Australia, it's mostly the airports. But the staff in the airports, the airline staff know about it. And what this, this lanyard says to them, to those who are trained: this person has 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 that you have a disability.
Jim: Okay.
Juanita: That may not be visible.
Jim: Yeah, I had no idea about that. So that's, that's particularly helpful, particularly for those people that you know, can get lost or confused. Or any disability really.
Juanita: It's any disability that might not be visible to someone.
Jim: Yeah.
Juanita: At a glance.
Jim: That's amazing.
Juanita: And the good thing about it, you can wear it like this, but it's also got the back where you can say what my disability is, what I need, who my support person you need to contact, how to contact them.
Jim: Yeah.
Juanita: So when I've got this, I go to the, you know, the screening: they see I've got a lanyard, and one of the staff will come through and ''what do you need, is there something we can help?'' and I'd explain what my needs are, they'll take you around so you don't have to stand in the line forever.
Jim: Oh, really? So they're almost fast-track you through a little bit to help you, you know, not be waiting around and get fatigued.
Juanita: Yeah, that sort of thing, yeah. So, but also, I often, although I'm not wheelchair-bound, I get a wheelchair, just in case I've got to go a long way.
Jim: Yeah.
Juanita: And having this lanyard actually sort of gives it, makes it such that people don't look at you and say “what do you need a wheelchair?”, you know?
Jim: Yeah, and this is the problem a lot of people don't really, unless it's visible that disability instantly unless there's some particular thing that they can see, often people don't really understand that, you know, there can be more complex issues behind what that person is experiencing. So, that that is a fantastic idea.
Juanita: I think anybody who has dementia that is travelling really needs to have it. It's very useful.
Hamish: That sunflower lanyard's a pretty great tool - have you tried one out yet, Jim?
Jim: No, not yet. But I think it's a great idea and it's ideal for people who are looking to travel.
Hamish: We're going to put some more information on how to get a hold of one in the show notes. If you're after more specialised tips for travel, you can also call the National Dementia Helpline and talk to an advisor like Kristin.
Kristin: If air travel is something that you're used to and familiar with, it might be quite easy to consider planning the trip. If this is your first time travelling by air, it might be helpful to have a travel companion come along with you. Some things to consider when you're travelling in an airport is the time of day that you travel. You might have a time of day that's better for you where you're feeling more confident in navigating new situations. It might also be that the airport you're going to has a time of day that's a little quieter; might make it easier for you to navigate. Many airlines and some airports do offer services such as greeting you, even at the door, to be able to help you navigate through the airport. If that's something you think would be helpful for you, reach out to the airline or the airport to find out if that's something they offer. It's really important that you're still able to get out into the community. And one of those ways might be 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 ask for the same taxi driver to help you get around. Those are great strategies for being able to give you confidence in navigating public transport. If you're going to be going someplace new, it might be helpful to try the route a couple of times with a friend or family member that you trust. It might be helpful to print off a map or a list of the stops. At Dementia Australia, we've got a webinar that talks about the impact of not being able to drive anymore. And that's something that you could check out on our website and get some further ideas for ways to get where you want to go and do the things that you want to do. Even if you're not the one that's able to drive yourself there. If you've got any questions or you'd like support and making plans for travelling, you can contact the National Dementia Helpline on 1800 100 500. We're here 24 hours a day, every day of the year.
Jim: Hold the Moment is a podcast from Dementia Australia. It's produced by Deadset Studios. You can find more episodes and resources through the Dementia Australia website dementia.org.au and don't forget to follow Hold the Moment on your podcast app, so you don't miss an episode. The show is hosted by me Jim and…
Hamish: …by me, Hamish . The executive producers are Kellie Riordan and Grace Pashley. The producer is Liam Riordan; sound designed by Sean Holden. A special thanks to the whole team at Dementia Australia and to all the advocates who shared their stories on this podcast.
[END OF RECORDED MATERIAL]
Bonus episode: getting around with dementia
Helpful resources and tips for getting around town while living with dementia, from National Dementia Helpline staff.
Transcript
[BEGINNING OF RECORDED MATERIAL]
Jim: There's something special about travelling, experiencing a whole new world, with different sights, sounds and smells. But since my diagnosis of younger onset Alzheimer's, finding my way around airports and train stations is a challenge. And then, there's also the dilemma of getting around town if you've lost your driver's licence, too. I'm Jim Rogers, and this is Hold the Moment, a podcast from Dementia Australia. You can listen to our full episode on Travelling in your podcast app right now. Maybe have a friend or family member help you access the episode if you need. This is a bonus episode, to help with tips on how to get around town or take a trip. You can get advice from the National Dementia Helpline 24 hours a day, any day of the year.
Kristin: I'm Kristin, an advisor on the National Dementia Helpline. When you call us, you'll speak to someone like me. It can be frustrating coming up with new routines when you've been diagnosed with dementia. Because you might remember a time when you could just decide to go to the shops and grab everything on your way out the door. It might take a little more planning now, you might need to book the taxi in advance for the time that you want to be picked up. And if there's a time of day where you know that you can better organise yourself, that might be a good time to put the bags by the front door. You might put your grocery list in your shoes, so that you really find it easier to take things with you. One other trick is to keep things visible. So if you keep your grab bags in a place where you're likely to see them on your way, you're more likely to grab them as you go. If you're no longer able to drive after a diagnosis of dementia, it can feel like you've lost a piece of your identity; a piece of your spontaneity. And there's a grief involved with that. There's also the important part of being out in the community, having your independence, being able to still engage in the things that you want to do. In order to do that, you might need to make other plans. At Dementia Australia, we've got a webinar that talks about the impact of not being able to drive anymore. And that's something that you could check out on our website and get some further ideas for ways to get where you want to go and do the things that you want to do. Even if you're not the one that's able to drive yourself there. It's really important that you're still able to get out into the community and one of those ways might be 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 ask for the same taxi driver to help you get around. Those are great strategies for being able to give you confidence in navigating public transport. If you're going to be going someplace new, it might be helpful to try the route a couple of times with a friend or family member that you trust. It might be helpful to print off a map or a list of the stops. It might also be helpful to plot ahead of time. If you do get lost, how will you get back to where you're going? Things always happen on public transport. You might get off at the wrong stop, or not quite be sure of what's going on. You can always ask for help: look for someone in a transport uniform or a high-vis vest and just let them know you're not sure about what's going on. People are always willing to help: you just have to ask. If air travel is something that you're used to and familiar with, it might be quite easy to consider planning the trip. If this is your first time travelling by air, it might be helpful to have a travel companion come along with you. Some things to consider when you're travelling in an airport is the time of day that you travel. You might have a time of day that's better for you, where you're feeling more confident in navigating new situations. It might also be that the airport you're going to has a time of day that's a little quieter. Many airlines and some airports do offer services such as greeting you, even at the door, to be able to help you navigate through the airport. If that's something you think would be helpful for you, reach out to the airline or the airport, to find out if that's something they offer. It can be helpful to bring the tools that you use in your day-to-day life with you along on your travels, to help you navigate a new situation. If there are things that make you feel comfortable at home: a familiar pillowcase, or a watch that always works for you, you want to make sure that you pack those. If you use a nightlight to help you navigate to the bathroom at night, if you leave doors propped open, you might want to pack a nightlight, or a doorstop to help you continue to use the tools that you do at home while you're out on an adventure. If you've got any questions or you'd like support in making plans for travelling, you can contact the National Dementia Helpline on 1800 100 500. You'll get to speak to an advisor: someone like me. We're here 24 hours a day, every day of the year.
[END OF RECORDED MATERIAL]
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