Dementia Daycare | A gift for everyone in the sandwich generation | Club Sandwich
She used to let everyone else win. Now nobody's safe at bowls.
Ageing parents? You've got them. We've got you.
JOIN THE CLUB: Visit clubsandwich.community to join the tribe, access resources, and find our private Facebook community.
SEND US YOUR QUESTION: hello@clubsandwich.community
In this episode: Sarah visits a dementia day programme run by ECH in Adelaide to meet Gina, who's living with dementia; her husband David; and daughters Marie and Michelle. Gina has become more competitive, more outgoing and more herself since her diagnosis. Vanessa Stanley-Gordon, who runs ECH's programmes, explains why that's not as unusual as it sounds.
Topics covered in this episode:
- Dementia day programmes as respite and quality of life
- Personality change after a dementia diagnosis, masking and early signs
- How relationships with pets can be an 'early warning system'
- Carer guilt, and why taking a break isn't abandonment
- Why vascular dementia isn't the worst news you can hear
- Commonwealth Home Support and user-pays access routes
Featured in this episode:
Sarah Macdonald — Veteran broadcaster and host.
Gina — Living with dementia, and thriving.
Marie and Michelle — Gina's daughters.
Vanessa Stanley-Gordon — Runs ECH's day programmes.
Meet the regular Clubbers:
Melissa Reader — CEO of Vera and expert on Australia's ageing crisis.
Jo Lamble — Clinical psychologist specialising in guilt and family dynamics.
Dr Ginni Mansberg — GP and women's health advocate who tells it straight.
Dr Stephanie Ward — Geriatrician helping you understand when "old" becomes a crisis.
Kerry Milligan — Gogglebox star bringing humour and honesty to the sandwich generation.
This episode was supported by Australian Unity, home health and care services — australianunity.com.au/clubsandwich.
Vera is your candid companion as you care for an ageing parent. Have a look at https://vera.guide.
FACES (Families for Aged Care Equity and Support) is a family-led campaign asking for one honest count of the number of people waiting for their aged care funding and the people who die while they're waiting. Add your name at vera.guide/faces.
Put The Kettle On — Vera's free conversation guide: the five questions worth asking your ageing mum or dad, at putthekettleon.com.au
Credits:
Sarah Macdonald – Host + Executive Producer
Melissa Reader – Commissioning Editor, Executive Producer + Clubber
Justin McArthur – Executive Producer + Editor for P. Zinner Pods (https://pzinner.com.au)
Thanks and kudos to Sean Wayland for our theme music 'Club Sandwich' — hear more at https://seanwayland.com
See omnystudio.com/listener for privacy information.
Transcript
This podcast was recorded on Kaurna Land. We recognise elders past and present. Always was, always will be Aboriginal land. Club Sandwich is brought to you by Australian Unity Home Health and Care, helping Australian families keep their parents well, independent and at home for longer. Visit australianunity.comauclubsandwich. Welcome to Club Sandwich. Now this is the podcast for you. If you now love and care for someone who once took you off to daycare or to school, and if that loved one now has dementia, this episode is for you. Today I discovered we do have special dementia daycare or day programs in Australia. And I visited a centre run by ECH in Adelaide. And there I met Gina and David. Now, Gina is living with dementia. David is her husband and he dropped her off and she did all these activities and had a fabulous time and helped direct and run those activities, let's face it. So I want to talk about her life, the love and the care around her. And we're also going to get some expert advice about helping a parent with dementia, how you interact with them and how life can be full of joy, as well as some big challenges. So joining me is Gina's daughter, Marie and Michelle. Hello to both of you.
Hello.
Hello.
We also have Vanessa Staley Gordon, who's in charge of ECH's programs. Hi, Vanessa.
Hello there.
Now, I want to start with Gina. We're going to start with Gina because she is the star of this show. So I just want to show you a bit of your mum this morning. Let's have a listen.
Because I can still see everybody and I can talk to them. I know it'll change. Who knows, years later, I don't know. But right now I want to encourage people not to be so sad about it, accept it. We are who we are. I've never laughed so much in a long time coming here. I can sing, we can do everything. I love winning. I never used to. Winning wasn't my thing. I wanted to make sure everybody else won in games. Yeah. Something I've never been in my life.
That is your mom. She is so. She's so. Such a great spirit, isn't she?
She is.
And I love that. Straight out of the horse's mouth. Cause we say how much she loves winning. So for her to actually say it as well.
Oh, yeah.
But she never used to like winning.
No. She was the grandparent who always let the children win or let us win at games. We'd be like, we don't do that.
She would tell us off to this day. Cause Marie and I, we're Very. We get the side from dad. Very competitive. No, we're not letting our kids win. When you win, you'll, you know, you'll have earned that and. Oh, it would devastate Mum. No, you've got to let the children win. But now look at her.
She has Rebecca and the ech stuff. They engrave little trophies.
Trophies.
Even when she's a loser, they engrave loser on it for her. Just to let her know that sometimes you can't win everything.
That's so interesting. So you said she's changed on that. How else has she changed? Since she was diagnosed with dementia, she's
sort of the opposite to what she was as a mum. She's very. Like I said, she laughs all the time. She's very focused on going in the garden, eating, but not the right things to eat. She's very focused on junk food. Her full life. She just wants a full life. She's constantly laughing and wanting to do things and keep people happy. It's in craft. Craft is.
Craft is her life at the moment. She's hooked on Kmart. Silly Solly's choice. Look out, Mum's coming. She's taken over a room at Marie's full of craft. She loves decoupage and only because she likes the word. She likes to say the word.
We all love her. She does like doing it, but she loves the word.
Right.
Yeah.
She's very outgoing now.
She is.
She wants to try everything and do everything. Whereas before, as our mum, she'd be sort of pushing us along to do things and she'd be in the background. Whereas now she wants, like, the lead role sort of thing.
Yeah, well, she was a bit of a star today. She was moving the chairs. She was. I can't talk for long, Sarah. I've just got to go over and help someone there. She doesn't look very happy. So she's sort of an extra star member to you, isn't she, Vanessa? Yes.
Whether you want one or not.
No, I think it's just. It's really important to recognise that when someone's attending something like a day program, it's not about just participating in an activity, it's about them bringing that program to life. And the way they can do that is by meaningful participation. So when she's helping us, she's helping us for a reason. And we want people to participate in that way where they actually own their club, their space, you know, that's really important.
And is it often the way that somebody's personality seems to really change? Like Gina's has or is it about a reclaiming of a personality that they've had before or can. You never know.
You know, it could be both, I think, to say that we see changes in personality, that is not uncommon. And I think the fearful element is that people are worried that the change they're going to see is an adverse one. But, you know, is that necessarily the case here? No.
I mean, not at all.
I think it's lovely that Mum's competitive and that she's outgoing and maybe that's something that, as a function of being that older person and living in the generation that she lived in, where you set those things aside, you know, Whereas perhaps what we're seeing is her just being more of her and maybe not. You know, I don't. I don't think. Do we need to question it?
Because I think if we're saying, oh, that's, you know, maybe a side of her that was suppressed or something, you know, she was like that as a child. And I think, okay, but if the aggression or violence comes in, is that meant, you know, we can't say. That's a representation. So it's really like, just be in the moment.
Yeah, yeah.
So you two have both worked in aged care?
Yeah.
So you know that things can get pretty tricky.
See the end stages, because that's in
the aged care facilities. Whereas your mum's still living.
Absolutely. They're very lucky. They bought a house a few years ago. Keeping in mind that down the track, Mum and Dad might move there. I mean, it happened a little bit earlier than we expected, but they're very lucky. So Mum and Dad are very close, living next door to Marie and John, which is amazing.
We're very fortunate that we get the good stuff with Mum. And before she presumes, you'll go into aged care at some point, but we get all these valuable years that we didn't see when we worked in aged care. You only see the last part of someone's life and sometimes they could only be in aged care for a matter of months. You know, people going to aged care later and later now, so.
That's right.
That scared more and more hell out of us.
Yes.
And I think for a lot of people, when we think dementia or when a parent first gets a diagnosis, they might think they're going to have to go into aged care. They don't have to necessarily, Vanessa.
Look, not necessarily. I think it's about what sort of level of support do we have for that person in the community? What do they have around Them naturally as part of their own networks, you know, people like yourselves. That's quite a fortunate situation. It's not always the case. And that changes the dynamic and the progression to some degree in the way in which they're going to experience that dementia. Because ultimately those changes will impact how they participate and their experience and how they live and how safely they can live. So it'll be different for everyone. But you know, ideally we would see people staying in the community. Ideally we would stay at home as
long as possible, which is the government policy now, isn't it? Absolutely.
And you know, 2/3 of the people with dementia at the moment are living in the community, so it's not uncommon.
Okay, tell me about. She's got this lovely personality which she's always had as well, even though she was more withdrawn and quiet before. And now she's a bit of a goer. But how is she? She, she, she mentioned to me your dogs, Maria, that she loves. So how have the, how do the dogs help with the care?
We have a beautiful Rottweiler called Yogi. He's five years old. Mum's always loved him since she's lived with me, mum and dad lived with us for two years now. She's always loved going to play with Yogs. She goes out every morning, you know, chucks, whatever. But as I suppose as we started to notice something wasn't quite right with mum, Yogi stopped wanting her to want, stopped wanting her to play with him. He would just sit because he's got a little run. She's on one side of the fence. He would just sit next to the fence, just letting her hold his paw. He didn't want to run, didn't want to play. And then after about a week of that, he'd be like, okay, yeah, we're good now we can play. So. And now we notice every time there's some change in mum, he seems to notice it before we notice it. He's like a, like a flashing light of something's going to change because he has to sit down and she has. He just gives her his paw.
He's your only early warning.
He's like an early warning system. Something's not quite right. Which is beautiful because she loves yolks. But it's just, it was weird because, you know, rottweilers are quite scared perceived quite scary dogs. Then you've got this big 60 kilo dog holding a 73 year old woman's hand because he can see something's up with her. It's, it's Beautiful. Because she. Yeah, she absolutely loves him. And he loves her, obviously, and he's in tune with her. It's. I like. It's amazing. The other two dogs, not so much, but, yeah, he. He is.
What can we learn from yogi, Vanessa, as carers for parents with dementia?
You know, I think the message there is being present in the moment, and I think that's, you know, we underestimate probably the sensitivity that animals have. And maybe that sensitivity is literally just the fact that they have that connection and they are very connected to the present and to that moment. And I think one of the risks for people who are informal carers, for those with dementia is that you are doing so much. You are fitting so much into the day, into every minute of the day, that that ability to stop, pause, breathe and just be present with that person is something that we lose because of the time that we have or the limited time that we have.
Yeah.
Whereas rushing and the animal doesn't.
No, he doesn't.
Doesn't need to.
Yeah, Yogi's not rushing.
No, no, not at all.
Yeah. Yeah. We need to all be like, Yogi, just hold a. Poor. Hold a hand. That's made me really think about it.
Just be in the moment.
Be in that moment and hold their hand. And sometimes, well, talk to us about. Yeah, sometimes talking too much is too much.
Absolutely.
Mum can find that overwhelming, especially with a group in the family situation. We're all there. We can be quite loud.
You should hear my family.
Holy heck.
We talk through walls. That was like. She gets overwhelmed.
If you're all there together. Yeah, that's overwhelming for her now. Too many and, you know, you'll often have little side conversations going on without realizing. And, yeah, she can't. I think that's just too much for her to kind of process now. So, yeah, just remembering women with Mum, just really one voice at a time. Keep it on the same topic. Don't be too loud.
She can't do the multitasking of conversations, like, you know, as a woman, more so I think you can tend to listen to three or four different conversations. You're across all of them. Mum, she tries but then gets confused. So, yeah, we just have to learn to adapt to what Mum wants, don't we? Really?
You've learned so much. We have a big learning curve and
still so much more, but I guess you just learn as you go.
Yeah. We have a WhatsApp group, though, don't we? Like, we've got lots of what's up groups. Well, like, there's me, Michelle and Dad in it. So at least we can all be on the same page. If there's anything we need to know about mom or anything we've noticed, you can let the other two know straight away, I think without having to discuss it in front of Mum. At least we can have those little side conversations of, okay, Mum's doing this. Does anybody else notice that? Yeah. So it keeps us all on the same page. No one has to miss out. Because I think that in the early stages, that was a bit hard, say, for Michelle, because of Mum and Dad living with me. So we have the group.
Yes.
I was the youngest child. I was a little bit. Oh, I'm gonna miss out on all these things with my mum.
Yeah. You got over it, though.
I did get over it and it's the best place to be with you guys. But I was a bit jealous.
Yeah. But she comes silly at my age
to you now, right?
She comes to you for a yes. Yeah. She'll come home for a sleepover and I take her out, spend the day together and that. But no, definitely having the group helps us all stay on the same page
with Mum because you also don't want to upset your mum with any family dynamics.
That's exactly right.
The little and the older sister.
And we're pretty open and honest with each other as it is anyway, so that's good. But, yeah, it's nice being able to have the conversations about Mum without her needing to know that they're going on.
Yeah.
Vanessa, I think that's something I really learned today too, is that people with dementia, especially when they're still living at home and they're still functioning in the community and they're having a great time, they can often mask it very well because they're socially fabulous like Gina is. So this has made me really think about things. So how often do we not notice and not realise that perhaps a parent or a loved one is getting dementia because they're socially fabulous?
I think to quantify it might be a bit difficult, but I think there are things that will resonate with us when we go, that's not quite right. You know, it's that you just sort of something might jar. So, you know, we do see people who have that ingrained, highly rehearsed method of engaging, and they really are fabulous in the way they do it. But I think then what you might find is that slight shift or that slight misstep, and it's those things that I think we might go, don't know why Mum said That, that didn't quite make sense, you know. And is that, you know, heralding dementia or is it heralding she didn't have a good night's sleep at the end of the day, it's time that will tell. And I think it's just the sort of thing that you recognise and perceive upon reflection.
You go, wow, hindsight's a wonderful thing, isn't it? Just you look back now and think, oh, gee, we should have been more like yogi and realised what was going on.
There's definitely. When we look back now, there are definitely times where we've gone, oh, yeah, like with Mum's taste buds changing all of a sudden, getting a taste for wine. Mum was never a drinker. Then all of a sudden, oh, yeah, I'll have a glass of wine. Oh, I like that.
What?
Oh, Mum, try this. Oh, yeah, I like that. Was that the beginning of something?
Yeah, because she'd never drank before, she'd never eaten really sweet stuff. Now that's her passion, is junk food. It's. But you, you like, say it takes some noticing. You just think it's just a one off and then obviously, oh, okay. No, this isn't Mum. This isn't how you normally do things or what we would normally have.
That's really useful for people. Cause if they're listening and they've noticed their parents, things have changed. Such as their different likes and dislikes have changed. Or perhaps they're disengaging from social occasions. Cause it's all too much. They can really be signs that there might be.
Yes. Like Christmas a few years ago at your house and Mum took herself away from the group. Our family group. Mum would never do that. All about the family, be around the family. And at the time, oh, Mum's just tired. Or it kind of did.
You know, there was that little.
Hang on, that's a bit strange. But you don't go to, oh, Mum's getting dementia. Or Mum.
No. So Mum's tired. It's been busy. But whatever it's you. You can always find another reason for it, I think, can't you? Because my mom's only in the 70s. Didn't expect that she would get dementia. I don't think we get. We didn't think she'd get it at all.
She's only 73.
73 now, yeah. Would not have expected her to have got it this young. I suppose so I gu.
I guess it's more and more. I think the biggest thing that dad knows, she got completely disorientated, dropped her off to get a blood test. You wouldn't know, but there's a place called Bobby Triangle. Mum's been there a million times to the Benson's to get the blood test done. Dad's dropped her off, he was going to go somewhere, come back and Mum said she just all of a sudden, where the hell am I?
She had no clue.
I don't know this place. Why am I here? What started to panic, walked out, didn't recognize anything, called dad. And then, you know, kind of said to Dad, I don't know where I am.
What?
Like what's going on? And dad said, just stay where you are and I'll come and ask where she was.
No, she didn't carried a walking.
She kept walking. But it's like, you know, she's been around Marbury and Tea Tree Plaza her whole life, yet she was looking at, she. I was looking at these buildings and they meant nothing.
Oh my gosh, we got lost coming here.
But that's.
Well, we weren't familiar with.
We were all talking.
Yeah, she knew where she was going. And so these are those that early signs that often they're covered up by politeness and kind of things that people should really be looking at and thinking about very much so I think there's
certainly in terms of the change in taste, that's something that we do see in that sort of, I guess, stronger taste preference. It will be individual. We're all as individual as little snowflakes. And it'll be definitely dependent on the person, but not an uncommon one. I think the other thing that's really interesting around that change where, you know, that moment of almost like a, you know, rabbit in headlights, oh my gosh, where am I? You can have that experience anyway. It's the ability to manage that experience which is the challenge and, and that sort of exposes for us that ability to solve the problem for ourselves, you know, and that's where you start saying, hey, you know, I think we might just go and have a chat with our gp.
That's what Mum said. It was the panic. Yeah, the pure panic. Whereas for us there's no panic. Okay, we're not sure where we are or. But that, that's fine, we'll figure this out. Whereas yeah, for Mum, like you were saying, it wasn't. She didn't have the skills and the ability to problem solve that it was just like, oh my God, what's going on here?
Yeah.
And in and of themselves, we're not, you know, we're not saying that as you know that one moment in time. It's that constellation of signs and stuff,
lots of different signs. But yeah, and hindsight is a wonderful thing, obviously. Let's back to the actual program where she goes a couple of days a week and she has this day with you at ech. Vanessa, this is not just about her, is it?
No, not at all. You know, I think it's. Realistically we know that it's a great day, it's a great moment in time. They have, it's their club. We offer lots of different experiences and different activities but in reality it's about a carer break because you cannot function on empty. And the caring role is very demanding, very rewarding, very special. Usually it's for a loved one but sometimes it's not, you know, sometimes it's just for a person that you have a significant connection or meaningful connection with. You could be a neighbour and offering and participating in that caring role. And I think we, we often forget that it's not just about those people that we care for. You need to have a break because if you don't being able to care for someone and keep going and keep pushing through, your health is going to decline.
That's what we're trying to help people with on Club Sandwich. And that's exactly what happens. You forget about yourself and you often don't ask for help because you're just in such a freeze moment. So you found out about this program?
I'm trying to think how we found out about it but I know it was when they started going to the doctors and dad was just looking as the places where mum could go to just give us some extra support.
He didn't even think about was about him at that stage.
No, it was just about what can I do for her that's gonna make her happy Because. Yeah, because she changed and she didn't want to do the normal things. And then he had just found local places in the area and he spoke to a lady who. I really can't remember who, where she's from but he spoke to her and she found that there was quite a few place his mum could go to close to home. And because dad's now the only driver for add the two of them, he wanted somewhere close.
Yes.
Which is where the Smithfield Ech came into it. Yeah. And he sort of said to her, well, we'll go and have a look. If you don't like it, you don't have to go. It's. It's fine. It's entirely up to you.
And now she runs.
Oh, now she's it. She's. She's the boss. As far as she's concerned, she's the boss.
And she's definitely doing the singing and she's running the morning tea.
She loves it. I got to go there a few months ago. I was on school holidays and went to see Mum and. Oh, I just honestly can't put into words. I got there and I was like, I see why Mum loves this place. The staff were just amazing. The setup, it's like a. It's very homely. Like the kitchen, where they cook, like, they sit down at a proper dining table. The kitchen's there. You see them cooking.
It's all very.
Yeah.
Oh, it's just amazing. I was like, I. Yeah, I really see why Mum loves it. And as a family, knowing she's safe, she's gonna be looked after and cared for. It's such a relief, like, you don't have to worry about it.
It's.
Yeah.
Well, for you both and for your dad, like, he was like, yep, I'm gonna go and play some golf or sometime watch a movie or he does a bit of Lego or he said, sometimes I just have a sleep. And I'm like, oh, God, preach, David, preach. Yeah, like, just silence.
Just that silence from bum singing and dancing, whistling. Because she's a brilliant. Yeah. She has a whistling competition because she knows he can't whistle, so she feels that she is the winner every day.
Right.
This is that competitiveness.
Yeah.
So he really needs it.
He does. He found that hard to admit it at first because Dad's a very reserved. Doesn't show him. Or he shows more emotion now, but he's never been very emotional. So he found out that he was letting Mum down. I think he thought at first by needing the break, but you can see how much she's thriving.
It replenishes.
He knows it's the best thing for her and him and for him 100% for him.
Do you find that a lot, Vanessa? Do people in the sandwich or the carer, the loved one, the partner or the neighbour or whoever's helping someone with dementia, do you often find that they feel that they shouldn't, you know, that it's an abandonment or that they should feel guilty from getting some respite?
Absolutely. It's really the resistance, in many cases is actually the carer because it's, you know, for some it might be relinquishing control. For others, it's fear. You know, are they going to be all right? And in Some cases it's actually feeling that your needs are important enough to say, actually I need to do this for me. And we're not very good at that at all, you know, so it is essential self care. There's no two ways about it. And I think that's one of the other advantages we've got in terms of certainly two of our sites where we can offer in reach, where we facilitate appointments at the same time. So podiatry can be done, physio can be done and then, you know, they can go back to the day program.
I don't think people think about respite. I don't think they think about. Doesn't occur to them. People often don't know these things are out there.
No, definitely not.
Yeah, little bit of. And it could open up a whole new world. I mean, often though people will not want to go or they might be resistant. Have you got any. I mean that was a good strategy of David's, wasn't it? Like, let's just try it once. Absolutely. And I can stay with you. Did he stay with her?
No, I don't think he did. I think the first sort of said, I'll be fine.
Well, the first time they went in, met with Rebecca, had a bit of a conversation. But then I think her first proper
day, she saw it as David says, this is what I'm doing today.
Yeah.
So I'll just give it a go for David more. So then of course she loves it. So now she sort of. She knows that's what she's doing. She talks about on the calendar, she's got her days that she goes to. Ech. She'll sometimes say she's going to work and she's, you know, getting a work close where you're like, you're not quite going to work, mum, but. But that's how she. It's just part of her day to day routine.
Go away. And I think she said to dad or Maria, which one of you? So I need to put in for some leave from work.
So she says it as a job.
Yeah, she loves it.
Perfect.
She loves. She thinks it's great. But yeah, she, she doesn't want to let them down by her not being.
Oh God, love. But you know, purpose is, you know, comes back to purpose. Giving people things to do that is purposeful and important.
Absolutely. Exposing them to new experiences and new people and yeah,
Gina has dementia and this morning I watched her run the room at a day program in Adelaide, handing out advice, collecting the trophies. Her husband David got a few Hours to himself. Now her daughters aren't too far away. Two thirds of Australians living with dementia are in the community, not in residential care. And days like Gina's are a big part of what makes that possible. It's the same idea behind Australian Unity's home health and care. The right support around your mum or dad, delivered by a local team. So life keeps moving for everyone in the family. Visit australianunity.comauclubsandwich if you are waiting on a home care package, you know how hard that waiting is. 10 months on average and nothing funded in the meantime. It's hard on everyone, on them and on you. Now Vera is building something that lets eligible families start care straight away. And it's looking for a small number of families to build this with. If your parent owns their own home, email helloira guide and you can be part of it. We've mentioned senses and taste and stuff, and I noticed there was a bit around that today, like activating the senses.
I think it's really important that we take the person as they are and we find out as much as we can about that person and their interests and we build on that. And in our experiences, some of the most fundamental elements of that might be. If we're baking scones today, doesn't that smell fantastic? Doesn't it taste amazing? You know, look at how we're mixing the dough or whatever. It's not as simple as that, but that's some of the elements of engaging with an exceptional. An experience that helps us use our minds. And that's what we want to do. We want to use the mind and our senses drive that, you know, and that when you think about it and stop for but a moment, you know, how delicious is it having a warm piece of bread with salty butter? You know, it's for some people, of course, but may not be. But it's. It's a sensory thing. Allowing yourself to experience that is an opportunity to activate the mind and activate the brain. And we build on that when we participate in activities, especially, for example, horticultural therapy. You know, we have a horticultural therapist who. It's not just about gardening, it's about. Have a look at the leaf. Have a look at how the light penetrates that leaf. Can you look at. See how the little veins are there, the color, how it's changed, you know, from green to a golden brown because it's autumn, you know, and smell. This is a rose, for example. Smell it. Can you smell that?
It's almost mindfulness and awareness. It is similar principle.
It is in Fact, the other day,
we do it together, can't we?
You can. Picking up a carnation. I hadn't thought of it, but our horticultural therapist said to me, you know, what can you smell? And I'm like, fruit, mince pies, you know, and you don't. It's different for everyone, but it's like, wow, you know, I hadn't thought of it like that. It is a special experience and it's important.
And there's often a lot of disengagement that goes with dementia. We're withdrawing. And this is a. Is this kind of also an attempt to stop that social isolation and withdrawal as well? Because she seems very popular there, chatting to people, you know, connection, having a good laugh together.
Absolutely. And in fact, when we were talking before about some of those masking behaviours where someone might be, well, socially rehearsed, the opposite to that is someone who starts to withdraw and doesn't participate as much as they did because they're worried about making a mistake. They're worried about saying the wrong thing or the same thing over and again. If they've been caught out, for example, they don't want to make that error, so they withdraw. And by withdrawing, you're losing that opportunity to engage and activate the mind. And in doing that, we're perpetuating a problem.
I think mums still will do that on occasion. Not with us, obviously, but if she's out or meeting someone that perhaps she hasn't seen for a while, she'll say. She'll try not to talk or say too much. I mean, obviously it doesn't happen often, but she really tries to suppress that because she's worried I'm going to say something silly or. No, I don't want to embarrass myself.
Yeah. Isn't she? And she's getting more tired, probably.
Yeah.
Yeah. But here she. That's what she said. She said, I can be really myself,
absolutely, completely and utterly herself.
Because, of course, some people. Because Mum can present as quite a unaffected person. She does. People will say to her, well, you haven't got dementia. I can't say. I can't tell you. What is she supposed.
She can't drive her car, you know, she can't do her finances or cook a full meal. They don't see all that, though. They just see this woman, the woman
that she's presented herself as.
Yeah.
Walking, talking normally.
Yeah. What have you learned from this? From people like Vanessa and Rebecca and the people that work there about. That's really helped you with your mum? And this stage of her life and your life and your dad's, I suppose
you said there's people out there, there's places for people like Mum in the early stages to go and obviously later on, but to go and be herself. Enjoy. Enjoy a full day doing whatever she wants to do. She's now decided she wants to take up flower pressing because of the horticulturists. It's not going to end well, but that's what she wants to do next. So, you know, it's giving her all these things to talk about and, and. And people that she cares about. She's, you know, she comes home with stories of all the other clients.
Stimulation.
And that's just beautiful. Yeah. She thinks about still having a full life. Yes, she is.
You think you hear dementia and you're like, oh, end stage. That's the end. No, it's very far from that.
But Mum has been brilliant so far.
It has.
She's really loving it. She's. She really is, I think, living her best life.
It's a great, fun version of Mum.
Yeah.
Yeah. So right now it's.
That's.
Yeah, it's pretty good. People say, you know, how's Mum right now? Things are really good, actually.
It's.
Yeah.
Someday she'll be like. Because the program recently changed, the men's group was back and she could go. She's like, I could go like four days a week. She says I could even go on Men's Day because sometimes it won't mind if I'm there. So she likes to plan that at some point she'll be there all week. She's decided she's happy to go. And that's wonderful to know that if. If it got too much for dad or if he was unwell or something, that she has that opportunity to go for a full week. And she'. She's looked after and. Yes, she's fed well.
Yeah.
And she does all these exciting things that she then comes home and tells us all about. Yeah, that's lovely.
Stimulation. You've learned to let go for her to have that experience. And Michelle, what have you learned? Because it was interesting, you said right at the beginning, because you've worked in aged care, you know how bad this can end up. But what have you learned about, you know, not going there with your brain so much? From your mum?
Yeah, like from the initial diagnosis and Mum telling me, and I was all I could focus on. Great. Well, you know, how long till I've lost my mum? How long till this is over? When's there going to be, oh, great, next year. This isn't going to be like this. I'm learning. It's still very much so. I have to remind myself just to live in the moment, enjoy the moment, stop worrying about what's going to happen because you're going to miss, you know, what's happening now. So that's probably the biggest takeaway. Live in the bloody moment.
Make the most of Mum now and whatever phase she's at. It's because, yeah, you don't want to be. Have those regrets when she's gone or when she's declined. You want to have the memories for that. So, yeah, it's. It's a big learning curve.
It is.
But I think how lucky we are. I initially was saying, I hope you have a brain tumor.
Yeah.
No, because then, I know that sounds awful. I'm not.
But, you know, the conversations we have,
you know, because you think at least when you succumb, when you die from that, you're gone by. Whereas now I think, how awful would that be, though, watching someone go through treatment and everything? There's so many. There's so many awful things out there and dementia actually isn't one of the worst.
And being told she's got vascular dementia. She was over the moon when she got. When she went to the geriatrician and they said, just letting you know you've got vascular dementia, we won't need to have any more appointments because there's nothing more we can do. And she was like, great, I don't have to go for an mri, I don't have to go for this. I don't have to do that. I can just. I can just be me. And she saw that as a. That's okay. I can get on with things now. I don't have to worry about what's around the corner because there is no. There's nothing that can be done, so what's the point in worrying about it? She was very positive. She was a lot more positive than we were, but she just like, yeah, it's fine.
Be here now.
Yeah, be here now.
Be with them. Yeah, yeah. Anything else, Vanessa, that you would advise for people who are at this stage with their parent?
I think, be kind to yourself as a carer.
Get respite.
Get respite. Be kind to yourself. You know, many of our carers, their stats will tell us that they rate their own health as being poorly. The likelihood of chronic disease impacting the carer is higher as a function of the caring role. You need to look after yourself. It is so important. And accessing quality respite is a very good way of doing this. And whether it's in the home or in a day program, it is a very good way to make sure that person's experience is positive, their brain is activated, but also it's looking after you.
And I should ask this because if people are waiting for an aged care package, they can access day programs through another mean, can't they?
You can certainly if you have Commonwealth Home support. That's an entry level.
So you can use this with Commonwealth
Home support, or there's a user pays option. Yeah.
Right.
Okay.
There are various different ways in which people can access the care, pay for it.
It might be the best investment in your week.
Absolutely.
Keeps them.
If you can reach out to people,
I think would be. Get help. Yeah. Will we give her the last word? Will I play you another bit of what she said today? Okay. Watch this.
Okay.
What's the one thing you'd like people who look after a parent with dementia
to know is just speak to them as you've always done. Keep questioning or saying, I've told you that once. Why? Because it's just more upsetting. You just treat them as they are. It's your parent, your father, they'll still love you. And especially you had encourage them and thank them for everything. Because you only get that chance once and don't regret it later in life.
So we all love them, but we
may have different ways of showing it.
So.
Yeah, just stay strong and find somewhere like this.
Yeah.
You are a fountain of wisdom. Thank you.
Oh, great. That's going to be. She's telling me that tonight. She's a fountain of wisdom. Thank you.
But that's. I mean, yeah, I mean, it was funny because Vicki, who was filming that, was crying when she was saying that.
Yeah.
It's so wise and it's so genuine as well. That is exactly what she thinks it's,
you know, but so wise. That's what she was saying. You know, don't correct them, be with them, love them. I mean, it's kind of obvious, really. Why do we have to be told?
Yeah. But it's hard at the same time, though, to.
Yeah.
To remember that that's. You're not supposed to correct them because it's automatic. If it was one of your children or one of your friends telling you the story twice, you'd be correcting that.
You would.
That's right. So it's hard to just remember, just whatever you say goes.
But you're not doing it in. You're not saying it too, you know.
Oh.
Remember, you've got dementia. Haven't you remembered this? It's just.
Yeah, you do have to stop yourself.
Yeah.
Well, we've given her the last word, I think, and she's a lovely mum. And you know why? I mean, we say this at the end of every podcast. You are doing a great job. You are. And so are you at ECH and getting help and taking her to this program is enriching all of your lives and you're learning so much. So I want to thank you all for teaching me so much, too. It's really made me think a lot about this.
Thank you for doing this and helping. This is helping take. Take the stigma away from dementia. I think so. Thank you.
Yeah. We've got to try not to be. I mean, there's a lot of fear around it, isn't there? There certainly is, but there's a lot of people living with it, and I think it's our number one cause of death in Australia. So we've got to get better at this.
We do.
So well done with your mum. Who knows what's ahead.
Right.
But right now, things are going to
be a fun journey.
Yeah. Well, I tell you, one thing I've really learned is take the good times when you've got them.
Yes.
But you don't know what's around the corner.
That's right.
Yeah. Yeah. Thank you so much.
Thank you.
Thank you.
Thank you.
Do let us know if you would like to suggest an episode idea for us at helloubsandwich.com follow us on the socials. Give us a review. Send this episode to a friend who has a parent, someone they love or someone they care for, who they think may be developing dementia or who has it and is still living independently and may be able to go to a program like this and get some respite. Take a break for yourself. I think that's the big message from this episode because as we say, you've got them and we have got you. Today's episode was supported by Australian Unity Home Health and Care, Proactive local care that helps your parents stay independent and living well at home. Visit australianunity.com auclubsandwich.
You make one phone call to get help for your aging mum or dad and suddenly you are drowning in Akron house acronyms and waiting lists. The aged care system.
It's a bit of a wall of
these acronyms, phone calls, waiting lists, and nobody's really giving you a map or a guide. Well, we see you. We want you to know that you're not behind. You haven't left it too late. And wherever you're starting from is the right place to start. You don't have to hold all of this in your head on your own. And you can keep what matters most to your ageing mum or dad right at the centre of every decision. That's what Vera is here for, any time of the day or night at Vera Guide. It's free, safe and secure, built right here in Australia with families and the experts who know this journey.