- Hello, my name is Kevin. 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 joined 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. (Dial Tone) (Phone Ringing) (Music Playing) - Your call is important to us. You are now 22nd in the queue.
(Music Playing) - Now, I'm sure you're familiar with that sound. Whenever you've had to book an appointment, talk to a government agency, or even just change your mobile phone plan. You've probably spent enough time on hold to know that you never want to hear it again. - But if you're caring for someone living with dementia, unfortunately you just can't escape calls like this. In fact, it could become the background noise of your entire caring journey. - Hey there, I'm Hamish Macdonald.
I'm a journalist and I recently helped manage the care for my Dad who was diagnosed with Lewy body dementia and Parkinson's. - And I'm Jim Rogers. I'm living with Younger Onset Alzheimer's. This is Hold the Moment, a podcast from Dementia Australia. And this episode helps you to navigate the healthcare system and access support as a Carer. (Music Playing) - So Jim, is it you waiting on hold, on the phone, or is it your husband Ty, or is it the kids? - It's definitely not me, it'll be Ty.
He does all the nitty gritty of that sort of stuff and it drives him mad. - Do you know how much of it there is? - I know that he spends a lot of time, you know, getting onto these things and it can be quite frustrating. Takes a lot of patience, fortunately he has that. I don't. So, if it was me, I'd just hang up. - Sounds like he's the man for the job. I mean, you can get caught up between Aged Care, myGov, My Aged Care, you can be dealing with Geriatricians, GPs.
I mean there's a kind of whole ecosystem of numbers that you might need to be calling. - Yeah, it's a total minefield. You need to be very organised and somebody's got to do it. So, you need to know who's going to do that for you. What sort of systems did you have in place Ham (Hamish) for this sort of thing? - We actually downsized dad's life as much as possible, which was (That's smart.) a lot of admin at first.
But we kind of culled the additional bank accounts that he didn't need so that it was all in one place. We obviously moved dad into residential care, which meant that we could get rid of all the bills. (Yeah) For example, that were attached to the house. We had mail redirected, we just did anything we could to simplify the arrangements. I mean there was still a heck of a, I was forever paying bills or dealing with... - That is great advice for people. - But it was actually really worthwhile.
I mean, even still, you know, I'd need to call dad and say, "I've got to log into this thing". "They're going to send a one-time passcode to your phone". "Can you read the pin from your phone"? And that was always a nightmare. I'd always have to go and get a carer to go into his room, and you know, these systems are not set up for these sorts of situations. But, you do find workarounds and simplification, is key. - Yeah, sounds smart. - Experience vlog. So, my mum had to get...
We had to inquire about getting a reassessment for ACAT, and... - This is Nick. He's caring for his mum, who's living with Alzheimer's. He spent so much time navigating the healthcare and dementia support system that he started tracking his own journey with it. - Haven't heard anything, so called yesterday on the 20th of March. - What you're hearing now are snippets of the video diaries that Nick's recorded since taking on carer duties.
- Yeah, again, just another one of those frustrations where you hear about this when you're sort of like, look, I thought we'll follow the process, you got to get on the phone again, talk to more people and work out how... (fades) There is so much information. Like that was an absolute, it was really valuable, but it was just like a landslide of information. And I could just see... (fades) - Nick's in his early thirties and he's pretty young compared to most carers.
And as an Engineer, he's about as tech savvy as they come. But even still, Nick's been struggling to access support for his mum since moving home to look after her. - I suppose mum's condition was, was manageable. And, it was really about start ticking the boxes, you know, going through 'My Aged Care', getting assessed. Working out what support at home services might look like. And, from that it just sort of kept evolving.
And I think, the more I reflect on it, is there wasn't a single part of it where it was like, I was a carer or all of a sudden you're, you're helping with getting dressed or you're helping with personal care. It's just little things over time when all of a sudden you're like, "Oh my God" "Look at all the things that I'm doing". Then it was like, okay, well what do we need to do now? I can't fix the problem with my mum. But as an engineer I can, I can problem solve.
I can take control of all the other bits and pieces and I can start trying to get things moving and start advocating for her and giving her a voice when she couldn't necessarily, you know, convey her thoughts or know how to navigate part of the system. - When my Dad first started to be diagnosed. And even prior to that when we knew something was wrong.
It seems like there's this kind of, avalanche of information and systems and processes that is quite hard to get your head around even if you're not suffering from some kind of neurological disease. - What was it like suddenly being thrust into the complexity of the healthcare system? - It's, it feels like such a blur. Like the, I sort of put it, I feel like I've lived a hundred lives in the past 18 months.
But definitely at the beginning our, our specialist geriatrician was sort of fantastic in those initial steps. She was like, "Get assessed". She sort of gave us tips because she was like, "It's 'painful". Like, "I'm going to just sort of lay it out there". "It's hard". "You're going to be waiting 9-12 months to get services". So, having a little bit of certainty in the fact that this isn't going to be a quick thing, helped me at least have an appreciation for what the road ahead looks like.
And, then I also just started doing my own research about what the assessment process looks like, what the things I might be asking for. One other thing, there has been an underlying trend of that, is whenever I ask people for anything or I, you know, do a bit of research, have all these questions. A lot of the time, I reckon 50% of the time they'll say, I actually dunno the answer to that. No-one's ever asked me that before.
And it's just... (fades) I, I remember starting to research at the time when it was the ACAT or whatever the assessment is. Like, what are they going to ask about? What am I going to need to know about my mum and her current condition, to make sure that we're giving an accurate picture to them. But, also knowing in the future, that 9-12 months could be till you start getting those services. because you have to wait for a provider become available and a whole lot of things.
We also needed to make sure that by the time that comes, we, we're going to have either enough, enough funding or the right services coming in. - How easy would it be to navigate all of this if you weren't particularly digitally literate? - I don't know how people do it. And they are the stories I, I hear, I hear. I go to support groups and you get this referral code. And, they don't realise it's on them to go find a provider.
And then they lapse and then all of a sudden they're going, but I thought you guys were going to contact the home care provider. And, then you get put on wait lists because if you do fully managed packages, then they need to have their own carers and they're all understaffed. There isn't enough services, especially in rural and regional Australia. I went down the self-managed route, which saves me a certain percentage of fee, but I take on all the responsibility.
- A lot of people struggle to handle that, you know, and put in that effort and it must took a lot of your time. Fortunately, you are that sort of very organised individual that could do it, but a lot of people can't. - I know. And I, I think that's the real challenging thing that we're going to have to, as a government, as a nation, solve, "Is how do we make this easier for people to get those services?".
And I did a, a presentation to one of my support groups on self-managed and at the end of it I, I put this sort of slide, I said, "These are all the digital skills and skills that I've used". And everyone just said, like, "We, we can't, not, (not possible) not possible".
And, you know, there's, I just think there's a, there's a really big divide and a, a big gap we're going to have to somehow solve to get people to be able to do this with little or no or have choice in how they navigate the system. (Music) - Do all of the different parts of the system talk to each other well? - No. (laughing) And I, I think it's sort of, in the design of it, unfortunately. There's a new aged care data and digital strategy. And one of the things that came out of that.
Was, 'Tell your story once'. That was a big theme. I experienced it recently at the hospital, when I told my story 10 times in three days. They just don't have it. Like where is that information? And, and the question I sort of thought to myself when we went to hospital, I'm like, "Where is my mum's story"? Like it's, it's piecemeal. The assessment was done 18 months ago. Specialist was done six months ago. You know, it lives in my head.
There is no cohesive story that sort of follows you through this journey. It is different pieces of the puzzle. - Do you know though, I saw a geriatrician with dad earlier this year and he had a new AI tool and it was a 'voice-to-text' thing. But the AI tool actually generated a document version of Dad's story. It was quite incredible. And, I actually found, as the person supporting him, It was very useful, because I could then share that with my siblings. - And a reference too.
- Yeah, and say look, this is where things are at, this is what the geriatrician is saying about, you know, the near future. You know, maybe familiarise yourself with this and if you have questions now's the time to, to kind of dive into that. It was a really good, available thing... - Because, not only in your position going to all those appointments. But for yourself to relay it to siblings. And other people, it's draining.
You know, you've got to keep going over it and it's very hard to remember everything and pull the whole thing together. - Well I, I definitely feel that, even this, my recounting of the story changes depending on how I'm feeling on the day. - Of course. - What's going on in your life. And those tools, they're really powerful. Like, I remember, and definitely one of the other things is, is getting copies of reports.
And keeping like that 'Bible' as live as you can and keeping hard copies of things. Obviously, I do it digitally. But, it all of a sudden when there is a crisis You don't have any of the information and you've got to start remembering, you know. It just adds to the stress, and the overall turbulence of going through that experience because you just can't get it.
- One of the first things that has to happen when you are in the carer or support role, is that you have to do the legal stuff that enables you to do that. There's 'Enduring Power of Guardianship'. 'Enduring Power of Attorney'. What is that? How does that happen? And how complex is that? - We were a little bit lucky as I suppose you could say, my mum before a diagnosis, had just happened to set up, the Enduring Guardianship and Enduring Power of Attorney.
And I, the way I sort of put it, is in the 'Enduring Guardianship' is about decisions about life, and 'Power of Attorney' about financial decisions. On that, I recently had an experience where it turns out our power of attorney, which we've had for two years wasn't operational, because of one of the clauses. And, I got told that from the bank. I was just, I was gobsmacked. I was like, I've had this document, I've given it to people. No one's told me this.
(That's crazy.) - Yeah I had to get, you know, then another GP appointment. Another letter that's got to get written. The other thing just on, you know, being an authorized representative, I think is such an undervalued piece of the puzzle. It's sort of the one thing I learned was, any system, government organization, just become an authorised representative on it. Like, I myself, have a 'My Age Care' number and I have direct access to my mum's account as a support network.
And that to me, means, I can go in and see that obviously it helps having, I can log in on the myGov but instead of doing two-factor authentication and then my mum having to be on the phone and the confusion all around that. - I mean I don't do any of that now. Ty does all of it. And, when we started this process, I was learning about all of it like yourself, but it's just drained away now. And I can't remember, I can't even remember the terminology that you just recited.
- But, I mean, when you sit and hear Nick explaining all of this. You know you're aware that, your husband and your daughter are doing all of these things (Mm-hmm) for you How does that feel? How does it sound to you when you are hearing the level of detail and complexity that's involved? - Um, I think now, I've come to terms with it more. I've struggled at first because I'm so independent don't, I don't like the idea of any of that now, but, I've sort of become at peace with it.
And, I just accept that I just can't store that information anymore and I struggle with looking at any of that stuff on the screen. Something you would do easily. For me, I just, it's just too overwhelming. The more I haven't done it, the less I'm interested in doing it. In fact, I can't even tell you the last time I ever looked at a bank or an account or ever, we, I couldn't, wouldn't even withdraw money from an ATM. I, I've no idea, with that.
And, I just pay as you go. (chuckles) - And what's a, I mean the at the core of that is trust, right? - A hundred percent. - Yeah. So can you describe what it's like to sort of give that trust to someone that's in your life? because that's so, total, you know, what you are doing. - I'm so fortunate that I would trust them with my life anyway. I'll have no qualms at all. At hundred percent, I know they have my best interests at heart so I'm very at peace with that.
But, it would be awful if you had a tumultuous type of relationship where you weren't so relaxed with the person that was going to be in charge of you. So, I'm very, very grateful that I don't have that worry. You know, bigger fish to fry. I don't worry about it. I could borrow it from you if I ran out. (laughing) (Music) (Music) - So Nick, it sounds like you're trying to come at this as an engineer. You're very sensible and thoughtful obviously about processes and timelines.
But, this is also your mum that we're talking about. It's an emotional experience. How do you balance the emotion with the responsibility side of caring? - It took me a while to go from being an organiser, just the day-to-day things to actually saying I, I identify as a carer and I need to look after myself. So, I reached out through the Carer Gateway to seek out counselling services through them and you know, I thought they were going to sit down. I was like, I don't want strategies.
I don't want to sit down and you tell me or do these things. And I remember this one counsellor sat down and said, these are all the things I can do. And one of them was, "I can just sit here and listen".
And you know, every fortnight or whenever we had the appointments, no matter how much could be going on and I'm so busy with organising and caring, those sessions were so important just to sit down, unload on, on an impartial party and have some of my thoughts reflected back and help me process some of what I was going through. - And Dementia Australia also offers counselling services. So, we will put links to both of those resources in our episode notes.
But Nick, what was the impact of that counselling for you? How did it help people listening might be in your situation? They might have so much on their plate that they don't necessarily feel like it's an immediate priority? - I feel like it just freed up the, the mental and emotional state to keep going. Really for me, just having that, that person there, having that hour, that was just for me.
I'd always leave like I'd released a burden and then I could reset and I could get back on with whatever disaster you're trying to solve at that day. (laughs) That day, week, month. - And Nick, you are also very young as a carer. You're in your thirties. How does being a carer impact your social life? - When I was sort of going through this, I was getting counselling and I was going to support groups. That, that was my life.
That was so much was, having these conversations and getting support from people in similar situations who had been through it. And, I would obviously keep my friends up to date when I'd saw them. But, for me personally, I almost sort of said, I'll give you the update but I just want us to be friends. I want me to be 30 again (yeah) I don't need to be reliving it every time I saw them, and I was just trying to find other avenues and other areas for me to get that emotional support.
- What top tips would you recommend were put in place to help people in your position who've got to take control and and help somebody who's now diagnosed? - Oh, so many. (laughter) I think there's probably a few key ones. I think always ask questions, always be thinking ahead and you're the expert in the care of your loved one or the person you're caring for. And a lot of the time, from my experience, you'll have someone come in and they'll do an assessment that takes half an hour.
And that might not necessarily capture some of the things that, that you might want or you might not understand what, what services they can offer. So, always asking the question about, you know, what else, what else can we get? What else can we get in the home, to really sort of tease out, they might not capture some of the things that have been discussed in that little half an hour assessment.
The other big one is, again, different for everyone, but try and keep a record of who you're talking to and the dates (that's key) and the people that's... - A dedicated book just for this. - Yeah. And I call my mum's file the 'Bible' and everything goes... - We that's that's.. - You've got one too. (laughter) - I've got one, high five. Yeah.
And that's what I call like everything goes, goes into that because you just so quickly get overwhelmed with the the numbers you're calling, the people you're talking to - And everybody changes as well. You get a different person who doesn't know the backstory and you've got to, you're constantly reviewing everything that's happened. - How do you articulate what that function is and what that role is when you're helping your mum interact with the health system?
- I, I don't really know how I'd, I'd term it. But, what I used to sort of say to my mum, I was like, "Mum, you just focus on living" "And I'll sort out all the administrative burden". Obviously, communicated a lot during our sessions with our specialist. And they helped us maybe identify future needs.
And you know, when things were getting more difficult at home, there were just times I had to have those conversations with my mum and I was like, you know, this is about helping you but it's also about helping me. Because you know, what we're really trying to do is keep you here at home as long as possible. So, sometimes I had to sort of just almost ask her, "Can you please accept more help" because it's going to help me, and we can keep in this situation.
- If you look back on the whole experience now. What have you learned about caring? - That it's hard. Every time I look back on it, that I go, "Oh yeah, God, I forgot about that". "That was silly", or that was, "I can't believe that thing happened". But I don't think there's any, nothing necessarily that, that I've learned from it.
Apart from one reflection that I always do have when I read back through, through the report is you grow up and you get into a career and it's about, for me, you know, the promotion and it's just, you're trying to create a sense of accomplishment in everything you're doing.
And I found that when I went to a caring role and I'm trying to do all these things, but you never had that sense of accomplishment because it's just the next thing, it's, it's this never ending list of things that you have to, to go through. And to me, that was, at the time quite, it was so disheartening and it's something whenever I look back on it, I just remember thinking, you get to the thing and you almost want someone to call you and go, "Hey! Good job". "You got your package". You know.
- And also a little bit of that is that, you know, that's usually the role of your mum, you know, that would be there for you to go, "Hey mum", "This is where I'm at". And but instead, sadly that's taken away from you and that role as we we discussed has been reversed now. And so, you sort of, you miss out on that a little bit. - Definitely like, you know, when I, when I was working my, my mum would be like, "How's the boss going"?
"How's the project going"? You know, you would have those conversations and then all of a sudden it's almost that part of life where conditioned to sort of just evaporates and you just get stuck in this big mess of things you need to do with no end point with what is really, diminishing returns at the end of the day. Sadly with my mum, with her quite, quick decline. (Music) - So, some pretty big changes recently for your mum and I guess consequently for you. What's happened, what's changed?
- So, my mum had Covid a couple of months ago. And that made her really quite unwell as it did all of us. She hadn't had Covid at all. And, went to the GP, ended up going to emergency. Everything was, was clear. And then over the course of about three days, following her recovering from Covid. The decline was unbelievably rapid. I mean multitudes, than the previous day. The mobility, the paranoia, the confusion.
My mum can sleep through a storm, now she's getting up at night asking, "What are we doing"? "What's going on"? "Where am I"? One minute, you know, I can't leave her because I give her security. The next minute, I mean, I'm enemy number one. And then over the course of three days we were sort of waiting to talk to a specialist or a GP about permanent care. And had a chat to a really good family friend. And she just said, "Look, this is an acute decline Hos, you needed to go to hospital".
That's, that's what it is. It was just so surprising that I needed someone to tell me that. It was like I wasn't going to make that decision myself. Luckily, I, a speech therapist was there that day as well and she just said, I can see how scared and frightened you are like in your facial expressions. It must be horrifying being in your mind and body right now. And, had a chat to mum and she was happy to take an ambulance. And now we are looking at placing her in permanent care.
She was very adamant she never wanted to go, into care. And she was always, you know, that was in the back of her mind, "Just don't put me in a home. Don't put me in a home". But after discussing with the specialist, my sister and I just made the proactive decision to just start looking at places to get a feel for, for what they are. So, when the time comes we can have that discussion with my mum.
And, thankfully or luckily, you know, we had looked at a few places, but, for me personally to sort of desensitize myself, I actually volunteered through the Aged Care Volunteer Visitors Scheme. And you go into a nursing home and or someone at at home and you just visit them for an hour. - That's fantastic. That gave you a genuine insight as well. - Yeah. And also, insight into the homes in the area. Getting people's opinion I think is important.
There's never going to be a right or wrong answer. But I just find for me the more information I can get, the more informed decision I, I can make. - Now that the time has come for this. How are you feeling about your mum going into permanent residential care? - I feel, a large part of me, wants to take her home and try and care for her, at home just a little bit longer. Because she's currently having to transfer to respite before we potentially get a bed.
And I have to keep telling myself like, "No", like "I can't provide that support". But mum, my mum is also aware enough that she realises that she does need that round-the-clock care and that's something that can't be provided at home. She's obviously up, upset about it. But, I'm trying to look at the glass half full. And I think that she will have a, a fuller life in a home that is designed to, to stimulate and to keep... - Support her, completely.
- Instead of her just being at home and not being active and me not being able to give her what she needs. - What do you remember most fondly about your mum? - Isn't it strange? I knew this question would come up. And do you know what's really hard. And I think it's probably the hardest thing to process, is the last 18 months. It's probably the longest I've spent with my mum since I was a child. And that's so much all I can remember of her.
And I find it so hard to think back to what she was before. That question of what, what my mum was like. I get a lot of it through her, her friends. And, you know, my, one of my really good mates came over and he was like, oh, your mum was so quick-witted and, and funny and that, that helps me remember. That helps remind me of, of who she was because I do just have this real visceral feeling of the person she is now because that is what I've lived for, for what feels like forever.
- I think obviously. Well done Nick. You've looked after him mum beautifully by the sound of things. - Thank you. (Music) - As Nick pointed out, he's about as digitally literate as it gets, but if you're not an engineer or a technology whiz, what do you do? Kaele Stokes is the Executive Director of Services, Advocacy and Research at Dementia Australia. She's worked with countless families trying to access care and support, and she's worked with the agencies that offer that care and support.
So, she knows how tough it is for new carers. - I think Nick's story really does reflect the challenges that lots of family carers have when it comes to supporting a person living with dementia. We've spoken to thousands of carers over the last few years and the fundamental challenges that they experience tend to be the same, which is not knowing what they should even be looking for. Not knowing what services are out there that are available for people that are living with dementia.
Not knowing whether services are general or more specific to people living with dementia. We, we hear all these sorts of stories. And, unfortunately we've still got a long way to go before we have a really integrated system that allows people to move through healthcare, disability, aged care in a, in a seamless way. It's sort of the, the 'holy grail' of service provision, but we've got a long way to go.
- It, it strikes me though, that the reason why someone might have reached a point of diagnosis, is that they're struggling with things and so, suddenly someone that is finding it hard to make decisions or hard to plan or is having difficulty processing things in front of them, is being presented with the biggest wave of decisions and new information that they might have experienced in some time. Is there any way around that? - You're absolutely right, Hamish.
We do tend to hear from people, particularly when there's a point of crisis. And a lot of the work that Dementia Australia is doing, is trying to work with people to pre-empt those well or avoid those crises altogether. So, having a much more planned conversation around what's going to happen, the sorts of conversations that Jim, you've been talking about in, in previous episodes where, it's around understanding the trajectory of, of dementia.
What sort of challenges might come up but also knowing who to talk to at the times where things do escalate or change in a, in a more sudden way. Because we know that that does happen as, as part of a dementia trajectory. It's not a a steady trajectory. It's got spikes and, and changes that can occur pretty quickly. - That's so right. I think it's really difficult when you come to terms with somebody becoming a carer or even to look at yourself as a carer.
Even Ty said on the way here today, you know, he still doesn't consider himself to be my carer. And I said, "Well, you do care for me and it's care and support". So it's a 'Segway' in, isn't it? You know? - It is. Yeah, it is. And I think, you know, it does take people a little while to, to adjust to that. And you know, that can also be reflected in the way that people engage with each other as well.
So, there's that shift in dynamic or shift in communication that that can be really awkward at the beginning and, and challenging to, to have that sort of conversation where you're ultimately responsible for somebody else. - Not to be too boring about it, but what's the shopping list of platforms and gateways and services that you're going to hear about if you're going through this, now and you're maybe at the start of the journey?
- Probably the first port of call is talking to your healthcare professional. So your GP, around the changes that you're experiencing. They may or may not refer you to a specialist and that could be a neurologist, a geriatrician, a psychogeriatrician, some kind of specialist that has dementia in their, in their specialisation. And, that can be part of a, a hospital system. It might be a private practise. So, getting a formal diagnosis through, through those means can be really important.
And then often we do hear that people can live pretty well at home before they need any formal support services. So, it might be the accessing post diagnostic support programmes like the ones that Dementia Australia has, can be useful for, for planning and thinking about the future. But often there is a, a, you know, sustained period of time where people can live independently and continue to, to do the things that they've been doing.
Where care needs do start to change, depending on the age of the person, and I hate the phrase "care recipient", (laughs) but depending on the age of the person, it might be that someone has to apply for supports through the National Disability Insurance Scheme. So there is a, an assessment process that they go through to access those supports.
If they're over the age of 65, then they would be directed to My Aged Care, which is the, the federal government platform for all aged care services, whether they're delivered in the home or in a residential care setting. All of those services, irrespective of whether it's the National Disability Insurance Scheme or My Aged Care, require an assessment from, from independent staff that will look at the, the care needs of, of the individual and then, you know, plan from there.
- So when we went through this, I was told, you need to get your codes. You're sort of smirking at that question, what does that mean? - Unfortunately people who work in the system tend to forget that the system is completely incomprehensible to anybody not working in the system. So, understanding the different components of, of an aged care assessment and under understanding, you know, the results and how that translates into care.
Should be supported by the aged care system or the, or the disability system to help people understand it. But it can be really complicated and people often do speak another language.
So, that can be really challenging and that's where organisations like Dementia Australia can be helpful because, whilst we are not directly involved in doing assessments through the age care system, et cetera, we do have the ability to support people to go through the assessment process and help them understand what it actually means in 'lay people's' terms. - So what sort of progress do you think is happening to make those services more cohesive for people? Can you see steps of progression?
- I think there is steps and I, I have been around the sector for longer than I care to think about, and it's slow. And you know, often people talk to me about the fact that you know, they've been trying to see change for a, for a long time and their time's running out right. And they want to see change and it really slow because we're talking about legislative systems that have to talk to each other.
The Department of Health and Aged Care does have a reform branch that's looking at all of the different aged care reforms, including how legislation "harmonizes", I think is the word they you use with other parts of the system, including healthcare, hospitals, disability. But, you know, it's slow going. - Just from a personal point from my experience. It is so lonely, you're so isolated once you get that diagnosis because you just don't know where to begin.
I think what Dementia Australia provides, I think you are in it, so you forget how amazing it is. And from what I've seen, like it is just such a fantastic crutch for people to lean on. Even to be advised to come and be soothed, by our podcast, which which gives you so many tidbits and so much info. - Yeah. - Like those things are so invaluable to anybody who's moving into that care (Yeah) situation. You know, it feels very lonely.
- Yeah. And Nick and other carers talked about you know, just the amount of information. (he was amazing) they try to absorb in, in understanding their caring role and what they need to do. And he was fortunate that his geriatrician was well informed about the system and able to provide some initial guidance.
But lots of people don't necessarily have that or they have conversations where it's like, well you've got a diagnosis of dementia, you know, we'll see you, you when you, when you need formal care and good luck. - Exactly. - And there's so much more that can be done in that, you know, in that so good intervening period - On that, when I get approached and asked questions about it, I'm always encouraging people to, to sort of get help and guidance and assistance early.
But a lot of the feedback is, well, we'll cross that bridge when we come to it. There's a kind of feeling that unless we're right in the worst of it, we're just kind of hands off for now. Is there a time that's right to start seeking some of this assistance? - Having conversations as early as possible, even if they are uncomfortable and a bit, you know, 'squirmy', is important because it can take the heat off at times where there are decisions to be made.
And you know, family carers will often talk about their reassurance in having conversations earlier because even if care needs change and a person with dementia can't be part of the conversation in the way that they used to, the family members feel that they've got a good sense of what that person wanted because they've spoken to them about it as opposed to guessing and thinking, oh, I hope that's what you know, they would've wanted if they were able to to talk about it.
- Kaele, thank you very much. - Thank you. That's - Such great advice. Thanks for coming in. - Thank you. (Music) (Music) - If you do want some really nitty gritty, practical advice, make sure you listen to our Companion Helpline episode. - You'll hear from Kristen.
She's one of the advisors on Dementia Australia's free helpline, and the helpline's available 24/7 So if you need somebody to talk to, - You can find the bonus helpline episode wherever you listen to podcasts or on the Dementia Australia website. You can also call the helpline directly for tips and advice. It's 1800 100 500. - Hold the Moment is a podcast from Dementia Australia produced by Deadset Studios.
You can find more episodes and resources on Dementia Australia's website: dementia.org.au. The show is hosted by me, Jim Rogers - And by me Hamish McDonald. The executive producers are Kellie 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 whole team at Dementia Australia and to everyone who shared their stories on this podcast. (Music) (Music) (Music)