Will you remember me?

Power to Care Radio continues to hold space for the real and often complex experiences of carers—sharing stories that reflect both the love and the weight of caring.

In this episode, Kristine Rawlinson and co-host Michelle Willoughby are joined by Marg Berry, who speaks openly about her journey as a carer for her husband living with dementia. Together, they explore the evolving nature of caring as needs change over time, and the emotional realities that come with it.

Marg shares her experience of facing one of the most difficult decisions many carers encounter—transitioning a loved one into residential care. This conversation gently unpacks the layers of that decision: love, responsibility, grief, relief, guilt, and the ongoing connection that remains even when care arrangements change.

Episode 4 offers insight, compassion, and reassurance for anyone navigating similar paths, highlighting that these decisions are never simple—but they are often made with deep care and courage.

Power to Care Radio continues its mission to ensure carers are seen, supported, and valued—through every stage of their journey.

Transcript

SPEAKER_02 0:57

This is a space for honest conversations about unpaid caring, the parts we don't always say out loud. Before we go any further, I want to acknowledge the traditional custodians of the lands on which we're broadcasting and listening to today. We pay our respects to elders, past and present, and we acknowledge Aboriginal and Torres Strait Islander carers whose caring roles are deeply connected to culture, community, and country. We also want to acknowledge unpaid carers because that's what our program is all about. They are both visible and invisible, full-time or just beginning. This program exists for you to hold space for the hard stuff and to remind you that you're not alone. Now, who the hell are we? I'm Christine Rawlinson and this is my mate. Who are you? I'm Michelle Willoughby. Wait your turn. You're yeah, you're you're not too later. You're not too later. So Michelle is a um is just like me. You're a carer, aren't you?

SPEAKER_00 2:05

I am a carer, yep. How long were you a carer for? Uh I oh that's really hard to say. Um, but I do have lived experience with family members who have Huntington's disease, which is a neurodegenerative terminal illness, um genetic, it's passed on through family, it's very complex. So yeah, plenty of lived experience in this space.

SPEAKER_02 2:34

Okay, and you um are doing some work in community that supports carers as well now. So that's great that you've you made the leap from your expertise in media to to working in the carer sphere to help unpaid carers get a better life. So thank you for that. And um people hear me talk a lot. So I'm Christine and I've been a carer since my husband got sick and got meningia crockwall back in 2017 and had his limbs amputated and lots of brain injury, and um my son's also autistic with an eating disorder, so he needs lots of support. Today we have got a special guest, Mark. Hello, Chris.

SPEAKER_01 3:19

It's nice to be with you today. We met about how long ago? I don't know, it's it'll be uh about six years ago, perhaps, and we've only seen each other once before, but we correspond a lot, don't we, and chat to each other. So it's it's lovely to meet up in person again today.

SPEAKER_02 3:41

It's just amazing when two people connect, and I think Michelle and I had this connection. Um it's you know, one of the terms of uh jargon that we often warn against is that that source of peer support is that Marg and I connect because we've got similar stories. Our stories are both very different, but we've got very similar stories at the same time.

SPEAKER_01 4:06

We have. I have uh uh with my husband uh who has Alzheimer's and uh my close cousin who um her husband uh became a quadriplegic one day, went up on the roof to turn the aerial around, fell down, and her life just changed in an instant.

SPEAKER_02 4:26

So you've got two stories there, one's one started over time.

SPEAKER_01 4:30

And I think we all know I can name five people who are caring from people in my sphere. I don't know about you, you probably know.

SPEAKER_02 4:39

It's one in it's one, what is it, 12%? 12% of the people.

SPEAKER_01 4:46

Yes, yes, you can see that, and uh and you don't hear a lot about them, do you? They're just doing it very quietly behind the scenes. Yeah.

SPEAKER_00 4:53

We imagine there's a lot more than 12% who don't buy. Hey Mark, I want to impress people.

SPEAKER_02 5:00

So can I just do a little bit of um stuff about dementia that I looked up online? Oh, yes, yes, yeah, so that I act like I'm intelligent for a moment. Um, because you're going to talk a little bit about your husband having dementia.

SPEAKER_01 5:17

Yes, Alzheimer's dementia, yes.

SPEAKER_02 5:19

Particularly, he has Alzheimer's. Um, the things that we do know about dementia, which is an umbrella term, and Alzheimer's is the type that he has. Dementia is a leading cause of disability and dependency in Australia. Most of the people who have dementia live at home and they're supported by an unpaid carer. So have a think about what that means for people who are unpaid carers and what that means for the economy and how much money the government is saving because of people who are at home, but what that means for the people who have that role of an unpaid carer and the impact on their life. People who care for someone with dementia provide more hours of care than almost any other group. And I imagine that's because people with dementia have round the clock support needs.

SPEAKER_01 6:13

Well, 24-7, once they get to the stage where they're not sleeping well at night, and you can get up in the night and move around the house, and you're dealing with them all day as well. Yeah. And then that happens. It's uh lack of sleep, I think.

SPEAKER_02 6:27

It tells me here that someone who's a carer of someone with dementia experiences high rates of exhaustion, depression, and isolation. Because I imagine that with what you've just described, you wouldn't get much sleep. And anxiety. You'd be, yes, yep, you'd be on edge the whole time. And because of your 24-7 role, you wouldn't be able to keep up with family and friends and have a social life. You'd be just stuck to the home and looking after the person that you're you're there to look after. Yes. Um, dementia is a leading cause of carer crisis due to safety risks, and this is a beautiful segue into your story. But before we go into your story, we are going to go into your song. Now you've chosen two songs today from the carers mix tape.

SPEAKER_01 7:19

Yes.

SPEAKER_02 7:19

Now, the first one you're going to do a cover because both of your songs today are by Bill Withers. But the first one is a cover, and you've chosen the covers by um oh Michael Bolton.

SPEAKER_01 7:32

Michael Bolton. I liked his version. Yeah.

SPEAKER_02 7:34

So what's the name of the song and why did you choose it? It was Lean on Me.

SPEAKER_01 7:48

Lean on Me.

SPEAKER_02 7:49

What made you think of that song?

SPEAKER_01 7:51

Well, I think David always provided very well for me, and I think when he got his illness, um yes, you can I can say that it's your turn to lean on me now, and I have to try and run the family. And um that's what I did.

SPEAKER_00 8:10

Good choice. That's lovely, Mark.

SPEAKER_05 8:38

Always in God when you're not small, I'll be your friend.

SPEAKER_03 9:01

I'll help you carry off. You help me love me somebody to leave, swallow your mind. If I have that, you need to fight.

SPEAKER_02 11:59

Now, tell us a bit about your life before dementia entered it.

SPEAKER_01 12:06

Well, probably David got early onset dementia, um, because he was roughly, I think, about sixty-two when we first noticed signs. Yeah. And he was running a um a very successful business with uh quite a staff of about 30 people. Um and life was going along well. I think the children had grown up by then and and left home. We had a daughter living in Germany, and another daughter that lived close by and was raising three young children, and I was a big part of her daily life while David was still running the business. And my daughter's husband also worked at the business, uh, which was terrific. Um because as the trip through dementia went, he was there to help my husband and manage my husband when my husband was at work. How did that go down? Well, I was very lucky to have my son-in-law there because um their behaviour can become quite challenging at work, and they could be sued for some of the things they do and say inappropriate things that they say to staff members. They've got no filter.

SPEAKER_02 13:34

Did he realise that he was inappropriate?

SPEAKER_01 13:36

No, no. He thought it was alright to say something or uh things that you can't do today. And so my son-in-law was there to manage him at work. Uh David might have called a meeting when they had a meeting, it might have gone for an hour and a half and all went well. And then an hour's time he came out and we said we'll have that meeting now, and wanted to call another meeting because he had no memory of um saying it before. Um, and then he was also David was in charge of the money for the company and doing things on computers. So they had to make changes where two people had to sign off with any money transactions just so they could always check what was what was being done. Uh David was starting to forget passwords and things like that. In the probably the four years uh prior to going in into care. He's been in care now for six years, but that four years, probably two years in the company, might have even been a bit longer, and then with COVID, he had to stay home. It's age of him, you can't go to work because we just said, because of your age, you can't go to work. And he'd already lost his licence because he kept on going through um signs word slow down to 40 than the school zones, and he'd bring it back to 45, and then he'd get pinged by the red light camera, and he'd he'd do the same thing every day, and so he lost his licence, which we were very pleased about.

SPEAKER_02 15:21

So, how different was his personality to the David that you fell in love with and married and raised children with? Like did you did you like how how quick was the progression from the man?

SPEAKER_01 15:34

Well, it it it it just happens very slowly, so we're starting to you you can't really put your finger on it, but you you just think they're they're stressed, um things. Yes, you explain things away and and just think, oh, there's a reason for that. He'd had a major heart attack back 20 years before that, and they didn't expect him to live, and he made a terrific recovery from that and went back to running the business. But I often wonder if something like that might have even triggered something in his brain. I don't know, but anyway, we had a very happy life prior to um him becoming ill uh without the children, grandchildren. Um my parents were still alive and his mother lived to a great age too. Uh so it was a big change when things started to go downhill.

SPEAKER_02 16:35

So, what what were the trigger points when you started saying, oh, this this has changed, this has changed our lives and and I'm no longer safe. He's no longer safe. Things need to things need to change.

SPEAKER_01 16:50

Possibly. He wasn't bad during COVID for those two years that he was home because it was very simple without a lot of outside stimulation. He didn't have to go to work, which probably was stressing him by then, but he couldn't tell me. He always he had no insight into his condition. Some people have insight, some don't. He had no insight.

SPEAKER_02 17:13

He didn't actually know what his limitations were.

SPEAKER_01 17:16

No, and he no, he didn't try and put anything in place because of what the the doctor said. He just said, Oh what Ratino, if there's nothing the matter with me, I'm perfectly fine. And so during COVID things went along fairly well because we had a very simple routine and a lot of outside stimulation. But then it after COVID, he decided yes, he would go back to work, and it just became more difficult. He was also so became type 1 diabetic. He had no insight into that condition as well.

SPEAKER_02 17:53

That would have been hard to manage.

SPEAKER_01 17:55

Yes, because he he didn't get it till later in life, but the endocrinologist said no, it is type 1. So he just had no idea about levels of sugar and testing, and I more or less had to take that over and the insulin and and he wanted to go to work, and then sometimes he'd come back from work in a bed with his lunch and his um briefcase, and you think, oh, he's he hasn't had enough food today, but he didn't realise or take it seriously, he couldn't absorb it.

SPEAKER_02 18:27

So, as far as you being his carer, what sort of things were you responsible for? So you were responsible for his medication for his diabetes. Yes. And for keeping his sugar levels that are safe with. Keeping those safe, yes. What else were you responsible for?

SPEAKER_01 18:43

Well, he was on quite a bit of medication for his heart as well. Um I I ran the home completely and then I ended up taking on more and more of his jobs, just sort of came over to me. He always managed the money at home and paid the bills and did all that. And then he'd make up excuses. Oh, I'm so busy at work, you're just going to have to do this. So I yeah, so I took that over. And there were jobs like that, but yes, um travelling became an issue. He liked to go overseas, he loved to go over to the open in Scotland. That was his one thing that he loved to do each year, and he would drive, and I realized at one stage he couldn't really read a map anymore. He told me how he was very good at map reading, but I could see him becoming very confused one day with the map, and then there were a couple of incidents with his driving I didn't like, and then he couldn't remember where he parked the car. So it became a bit of a worry when you were away and he was out of your zone. He became worse. And I had to keep an eye on him more.

SPEAKER_02 20:01

So that's that's the role of being a carer too, because uh the the the term keeper came to mind, but you're you're having to look out for his welfare all of the time. All of the time. Having to be hyper-vigilant to check that he's not going to get himself in a pickle. Yes, or put you at danger of the colour.

SPEAKER_01 20:18

He put his credit card down, he put his wallet on the table and um at the airport once he put his wallet in one of the baskets there and then didn't go back and retrieve it, and lost it with the cards in. So you you had to yes, you had to be very vigilant and managing all the time. In fact, when he went out for dinner in the end, he couldn't make a decision with the menu. He'd pass me the menu and just say, Oh, you decide, you know what I like.

SPEAKER_00 20:50

Yeah.

SPEAKER_01 20:51

And just make normal.

SPEAKER_00 20:53

Yes. I was just going to ask, at this point, did it feel like his personality had changed?

SPEAKER_01 21:01

Yes, I think particularly after COVID, when he went back to work and he was under stress, he didn't last long at work. Uh yes, very volatile. You'd never say no to him because that would trigger something. You had to think a way around not saying no. Yes, it had to be. Yes, you were walking on eggshells. Yes. And that would be scary, wouldn't it? He'd wake you up in the middle of the night at two o'clock, and he'd want to discuss business for a couple of hours. And then off he'd go to sleep again, and I'd be left thinking of the business.

SPEAKER_02 21:43

Did he have did he understand that it was the middle of the night?

SPEAKER_01 21:47

He did. I think when during the day he was occupied with diversions, and I'd say we had four hours to discuss the business before we went to why do we have to do this now?

SPEAKER_00 22:02

Sleep disturbances a bit.

SPEAKER_01 22:04

Sleep disturbances and he'd pace up and down, upstairs, along the passageway, up and back and up and back. Weird sort of things. Yes, now I look back.

SPEAKER_02 22:14

It's amazing that you did the did this affect your health?

SPEAKER_01 22:18

Yes, it did. Because you're walking on eggshells, you don't know what mood they're in, what they're going to save, what they're going to blame you for. All as a way of having nothing reflect on themselves. Um and uh I I was lucky I could make up my sleep in the daytime if I needed to, and but it becomes very stressful um watching out for them all the time. And the mistakes, yeah.

SPEAKER_00 22:49

Sorry. I was just going to ask, at what point did you seek the diagnosis?

SPEAKER_01 22:55

Well, we had the diagnosis probably four years prior to COVID. Uh we had been to see a neurologist uh each year, and David also had a defibrillator, so he could never have an MRI. He had to have a PET scan, which was a dual thing. So anyway, but the the neurologist said I'm pretty sure it's Alzheimer's, and you do a three-hour test each year, and so they could see the progression there from the his answers, and then when you had the PET scan, it was confirmed. But as I said, David never ever admitted that there was anything wrong.

SPEAKER_02 23:37

It was everyone else.

SPEAKER_01 23:38

It was everyone else, and you know, my memory was worse than his, and yes, he he could never conceive.

SPEAKER_02 23:46

So can you share us uh are you are you feeling brave enough to share the toughest time? The the time when you had to make a really tough decision about him moving out of home?

SPEAKER_01 23:59

Well, there were sort of incidents before because you can imagine drinking, drinking socially if you'd go down to the club. He'd come home so drunk, I'd say, What's the matter? But what I didn't realise was he had no recollection of how many drinks he'd had. He'd have one drink and someone offer him another, and we'd be tabbing them up in our head and thinking, No, he wasn't so just kept drinking. So he'd be an absolute mess. And then he was a an avid golfer, and then my brother-in-law said to me, just played golf with Dave. If he didn't know him, he'd suspect he's cheating. Because he said he he can't add up the numbers, he he's putting down the wrong numbers and couldn't add them up.

SPEAKER_00 24:46

So it was a short-term memory deficit.

SPEAKER_01 24:48

Short term at first, yes, but we're not and his long term was probably long-term wasn't bad, yes. His long term wasn't bad.

SPEAKER_00 24:57

Yeah.

SPEAKER_01 24:58

And uh then it came to a point where he was becoming um more volatile, and after a volatile incident, he had no memory five minutes later of doing or saying anything. It just went completely from his memory. So we had a few of those issues at home. Driving in the car was a concern for me. We were a bit isolated, and then one day we were at home and he became very volatile and he threw the coffee table up in the air. I thought, oh, this this is not good. And after he didn't touch me, but he walked out to his study, and I thought, nah, that's it. I ran straight over to a neighbour and explained to her, and she'd been a nurse, and uh she said, hide in the back there, and he was looking for me, and um, but I think by then he'd probably forgotten what had happened. And I said, No, I'm not going back.

SPEAKER_02 26:07

I hundred percent support your decision, and I'm so glad you do that, but I can only imagine that there would have been some people who judged you for it because they would have thought that you had to stand by your man and look after him no matter what.

SPEAKER_01 26:20

Yes, now there comes a point when you know you're in danger because you know they haven't got capacity for their decision-making spawn and they're not rational. So you have to make that call for your own safety. And the luckiest thing for me was having a GP that had known me for a long time and and knew David, and had been following this, and she backed me 100% and said it's time.

SPEAKER_02 26:56

So then, can you just talk us through what happened next?

SPEAKER_01 26:59

Well, we had to get him into um uh Monash um site, which we were able to do, and he was very volatile there because he was in out of his zone, wondered where I was, and he was very dependent on me. And they had to put a guard on his door. He was so volatile. Like a human guard, is that we got it? A human guard got to sit there, and then after ten days, we had a big round table conference with my daughters and um and the doctors there, and they asked me if I'd take take him home again, and I said, no, I will not have him home again. I'm sorry, I've just got to make that call.

SPEAKER_02 27:50

I'm just thinking, this is a facility that because they're looking after the rights of their staff and the public, yes, have had a human guard out the front of the send him home with you for 10 days, whereas you've been whatever age by yourself with him for however many years, are then saying, Oh, by the way, can he go home now? Can it can can people tell can you tell in my voice why I don't even understand why I'm in shock that this sort of stuff goes on people's heads?

SPEAKER_01 28:23

My GP said to me, Margaret, you've got to be very sure don't back down because they will send him home if they think you will take him. And I said, No, I can't, I won't be safe. He has to go into care.

SPEAKER_02 28:40

And why did they want to send him home so he wasn't their problem anymore? That's exactly right.

SPEAKER_01 28:44

Oh, I'm getting cranky. Yes, yes. They said, Oh no, we have him on proper medication now, and I thought, no, I can't take that risk. I've come this far, I've done my best, and I can't do it anymore. And I'm so lucky that the transition went so well with him in the care.

SPEAKER_00 29:07

So you have a lot of support from your immediate family, your children in that decision, Mark. How did that go?

SPEAKER_01 29:14

Uh, yes, I did. They'd had him for 24 hours prior to him going in, and they could see how volatile he was and irrational. And were they worried about you? And yes, I think they were worried about me. They were worried about him too, because uh he was a danger to himself um driving and on the roads and and in this state of mind because they gave him his license back.

SPEAKER_02 29:40

Oh my goodness.

SPEAKER_01 29:41

I contacted them and I said, David has got Elson as he's not a good driver, he can't really make decisions well. And no, out he went and he got the license again, and I I was very angry at that. So you've you've really you've got to look after yourself so that you can look after others. We found a facility that's only 10 minutes away from um where I live, so I can go down three or four times a week to visit. Um, I employ a niece who walks him three times a week, takes him out for an hour and a half walking. Um physically, he's fantastic still. But mentally, no, he's lost his short-term memory and most of his long term now. Um but the staff manage him well, he's very compliant down there, which I'm very I'm amazed at that he's never tried to escape because he knows the area. Um but I'm able to say things to him that you're here for treatment, and when the treatment is, then you can come home again. But he's come to the stage now where he's very confused and and uh he's very compliant, but he's very happy. He came here Christmas Day, um he he sort of enjoyed it, but I think there was probably too much stimulation around for him, and about three o'clock he came over to me and said, I want to go home now. Okay, so that's his home. So that's his home now.

SPEAKER_02 31:16

And and it's more of a structure and a predictable region.

SPEAKER_01 31:19

Exactly, exactly.

SPEAKER_00 31:21

Is that hard to hear, Mark, that he thinks that is his home, or do you feel like you've accepted it?

SPEAKER_01 31:28

Oh, I've accepted it, yes, because yes, anything rather than uh what you were going through. Yeah. My daughter is very soft-hearted with a father underwater. Uh she even she can see she used to like to take into every family function and do this with them and take him there into the football, all the things you used to love. But there comes a time when they just can't take all that stimulation anymore.

SPEAKER_02 31:58

So you are still living the life of a carer, you're still seeing him regularly and probably negotiating a lot of the support for him and all that. But you are getting to do other things that are fun as well now, which you weren't seeing. Oh, exactly.

SPEAKER_01 32:12

Yes. I had to make some very big light decisions during that time because I had to virtually take over the business, which I hadn't been in that business, but I became responsible for the business. Um, and our um premier acquired the uh business premises for her underground tunnel. So we had to sell the the uh the premises of the business to the government. We we had no, I mean we had to find the place for the business to go. I had to take on all these decisions with my lawyer, my accountant, my son-in-law, and the help of professional people to help us get to this period. Um so much that had to be signed off on and done, but the best thing that we had done, or David had done, is he did have a succession plan when he was in his right mind. So when I was given, and I was given all the powers of attorney, so grateful for because I had to make all these big decisions. And uh my solicitor said, Margaret, I've got four or five people like David on my books, and the family can't do anything about them. They're running these businesses and they really have not capacity.

SPEAKER_02 33:45

Do you know what you've just really clearly illustrated? We talked about this a while ago. Do you remember, Michelle? Is that nobody ever sort of has the ambition that they're going to be a carer? Oh, when I grow up I want to be an unpaid carer. Um, and also people think that being a carer just involves, you know, a bit of showering and feeding. But it's a vast and changeable role. You you became a business manager. I had to do that. Yeah, you dealt with the politics of uh of um your your land being appropriated by the government and all of this. And that's because of your caring role. It's it's it's it's a huge role because you just don't know where it's going to take you.

SPEAKER_01 34:30

No, I was just so lucky I had such good people around me to to navigate me through it all, and uh then I had to sell a house and find somewhere else to live, uh, because I didn't need it, you know, a big house anymore. So all those things that new things, when you're getting older and you it's not as easy for you to do those things.

SPEAKER_02 34:56

Yeah, yeah. And and we talked about it, um, you know, this is radio again, so it's a bit hard, but you're an educated, intelligent white woman, English is your first language, so you are quite privileged in that way. So there are probably people out there who are in a caring role where English might not be their first language, they might not be as educated as you, they might not have the support that you have, who will have be more disadvantaged. So um I'm not saying that it's it was hard for you, but for my so lucky because I had people to do things to help me.

SPEAKER_01 35:36

David had to when he went into care, we were self-funded. But if you have to navigate all these government systems for carers, um And if you don't speak the same language as the people who run it, imagine that. That's right.

SPEAKER_02 35:50

I can I can't imagine how they because I speak English and I'm I'm one of the people who used to design the services, and I can't navigate them. So I I struggle.

SPEAKER_01 36:01

No, they don't make it easy for them.

SPEAKER_02 36:04

Now you've got another song, and this is one of my favourite songs, and I'm loving that you chose it. And I've seen some of the photos of some of the days that you had. This is me doing a very professional segue.

SPEAKER_01 36:16

If you want to introduce the second song, it's another Bill Wheel Willow, and it's called Lovely Day. Very uplifting, I have a little um like songs in the car. We've got so much to be grateful for a lovely family who supports everything I do, good friends, um, and and I'm very lucky. And I feel David's very happy where he is in the stage of this disease. I I think he's enjoying life as best as he can. Yeah.

SPEAKER_02 36:53

Thanks, Bill. Take it away.

SPEAKER_06 36:58

When I wake up in the morning, love and the sunlight hurts my eye. Something without warning love, that's heavy on my mind, then I look at you, and the world's all right with me.

SPEAKER_07 37:27

Just one look at you, and I know it's gonna be a good one.

SPEAKER_06 38:07

When someone else is dead of me always seems to know the win. And the world all right winning just one look at you. And no one's in the possible looking when someone else is.

SPEAKER_02 39:19

And this week's jargon of the week is care of guilt. And I don't know about you, Mark, but I live in a world of guilt.

SPEAKER_01 39:27

Do you ever get care and guilt? Possibly when David had to go into care. You you wondered um what your friends and some family thought about that. Uh not that I felt guilty, I I was pretty sure in my own mind I'd done the right thing.

SPEAKER_03 39:49

Yeah.

SPEAKER_01 39:50

But and I don't really care what other people think, but I'm sure there were people that thought you're way more evolved than me. Uh look, you must do it for your own safety. I'm sure things happen. When my younger daughter was about eight months pregnant with a third child, she went in to see him, and she's a doctor, and he said to her, Now you could get me out of this place because you're a doctor. Her mistake was saying, Well, no, I can't, Dad, because I'm not your doctor, etc. You never say no. She should have said yes, Dad, and I'm going to look into it, because he became quite aggressive and violent when she said that.

SPEAKER_02 40:39

So she's better just to jolly him along with you.

SPEAKER_01 40:41

You're better to say, Yes, Dad, I look into that and I'll be checky, and I can do that for you so that he feels good. But you must never say, I'd say that'd be my piece of advice, you don't say no, an outright no, because that's a trigger.

SPEAKER_02 41:00

Yeah. I do I do that with Neil with his brain injury. I I try not to have an argument with him. I just I I nod, you go along, I validate, and then you go around. And and I nod and smile. Because there's no point in getting into an argument because it's never going to resolve.

SPEAKER_01 41:18

No, that's short-term memory. They never remember. So five minutes later, it's over and out. So you just go along with what they say and just keep everything smooth. But it is a trigger. No. Yeah.

SPEAKER_02 41:32

And I know that when when I have tried to have a uh a rigorous debate with him, aka an argument, I'll go inside sobbing and forgotten about it. Oh, that's he'll be absolutely fine and I'll be in tears. Um, care of guilt. Do you know anything about care of guilt, Michelle?

SPEAKER_00 41:53

Care of guilt? What what do you think care of guilt is? It's making decisions for somebody and determining the path of their life. It's yeah, it's a massive source of guilt. Because, you know, you know that that may not be what they would choose for themselves, but it's up to you.

SPEAKER_02 42:14

Yeah, you've got to put yourself, you've you've you've got to live the situation from everybody's perspective and and work out what's best for them, but what's best for you, and what's best for the future them, what's best for the future you, what's best for everyone else in your life.

SPEAKER_00 42:32

Yes, yeah, and you have to live with that decision.

SPEAKER_01 42:35

Yes, and if you're the prime person that's affected, I think you're gonna listen to what other people say, but I think you've got to make that decision with the help of doctors and other professionals, they'll support you, they they know, and they know what's best uh for the patient. Um and sometimes it's not being at home with with a carer because it's too much for that carer to take on 24-7, and when their health goes down, well, there's no one to care for the for the person.

SPEAKER_02 43:11

Yep, yeah.

SPEAKER_01 43:12

But I can go and see David as often as I want, when I want, and the quality of the time together, I feel safe in there, I feel backed up, there's other activities to do, he's mixing with with other people. Uh but at home you're isolated, yeah, and yes, you're you're very vulnerable.

SPEAKER_02 43:35

You've actually made the best of a bad situation.

SPEAKER_01 43:39

Well, I feel I have. I feel I have. I've made the the only decision I really could have made for him. Um and uh no, I have I'm not guilty about it at all because I've taken all the professional advice and the family's advice.

SPEAKER_02 43:55

I've I've found some I've had some opposite experience. Experiences to what you've spoken about. I've actually found that some of the professionals have actually made me feel guilty. And that some of the service providers have made me feel worse because some of their advice has actually been the opposite of what maybe what I thought was best for the people I care for, or what they wanted, or what other professionals wanted. Because, for example, while Neil was in hospital, he had 11 different teams looking after him. And he was a very high-profile patient in the hospital at the time. And one example is one team came in to me and said, Oh, make sure you tell us what the advanced care directive is. Is it do not resuscitate? And I said, Well, what do you think it should be? And they said, Yep, we think it should be do not resuscitate. And then the next team came in and said, We just heard you said do not resuscitate. We don't think you should do that. We think you've done the wrong thing. You're not giving him a good enough chance. So then I felt terrible that I was this terrible person and felt guilty about that. And so these, what Michelle was saying is that you've you're torn because you you're making these sometimes life and death decisions.

SPEAKER_01 45:22

I don't know where these people are coming from either. People who might have nothing to do with the situation. But you go into the care home and you see the people with advanced Alzheimer's lying in a bed, being led along. I had to make a directive for David to say not to be resuscitated. He'd be far better to go before he got to that advanced dread that can drag on for years. Yeah. Because physically he's um so fit. Um I think you think about what you'd like for yourself, and I would not like to go through those last years of Alzheimer's. I think it's um it it drags on, and yeah, it's they must be so lost and uncomfortable. I think it's cruel. Yeah, I think it's cruel.

SPEAKER_02 46:40

And I remember early on when Neil came out of hospital, he's got a certain amount of brain injury, which means that he can't see a quarter of his field of vision. So he's completely blind in the bottom left quadrant of vision, and he has no legs below his knees and no fingers and thumbs, but according to medical advice, he can drive. And I met with the ophthalmologist and I said, I really don't think he should be approved to drive because around our house, due to his brain injury and stuff, he drives into walls, he has front, he's impulsive, he does this, he does that. And with this lack of vision, I can just imagine a small child running out in front of him and him not seeing them, or he, you know, he's impulsive and he has some memory problems. And I'm really concerned. So this ophthalmologist just in the end said to me, Well, as far as I'm concerned, he's passed the test. I'm going to let him have his license back. Neil said to me, I'm getting my license. And I said, Well, you can get your license, but you will never ever drive our children or me. And um, he he was very angry with me, but to this day he has said to me, Thank you for putting your foot down about that because I now know that that was the right decision.

SPEAKER_01 48:18

But that was good to acknowledge it or have the brain to acknowledge it.

SPEAKER_02 48:23

Oh, I felt terrible because I thought, you know, this is one thing that I could, you know, let in quotation marks, you know, give the man who's lost so much, but I could not I could not allow such a dangerous thing to happen.

SPEAKER_00 48:39

But it just goes to show, doesn't it, the valuable input carers give in those decisions, in those situations.

SPEAKER_01 48:47

Because they're seeing a day in day. That's right. Um, and look, there's other people, it's a bit like breastfeeding, isn't it? You know, that mothers are made to feel so bad, or they have in the past when they couldn't breastfeed. It's led to some of them having depression because they just can't breastfeed, they try everything, they take tablets, they do everything because they've got a uh health sister saying you've got to do it, that's the most important thing. A lot of pressure just make us feel terrible. They make the this guilt that comes over you, but you you've got to make informed decisions.

SPEAKER_02 49:24

Yeah, oh, there we go. Get over the guilt and let us do what we want to do, and that leads us to our next segment, the carers who do not care club. This is where we get all hoity-toity and get angry. And I suppose I do not care if you want our man with Alzheimer's out of your facility because he's been so hard for you to have, and you've had to put a human security guard out the front of his out the front of his room for the last 10 days. He's not going home. He is staying in supported accommodation.

SPEAKER_01 50:01

Yeah. Oh no, and I I had threats on the phone at the stages where he said he was going to kill me and things like that. Um he had no recollection later, but I'd recorded him saying these things. So I have I I did have a very I look, they have to be careful. They do have to be careful when they make these decisions and give away power of attorney because there would be people who would take advantage of it if they could.

SPEAKER_04 50:30

Yeah.

SPEAKER_01 50:31

And we all know that, so they have to be be so careful. But um I I felt very lucky that they made such a good decision that enabled me to get things tidied up in our lives. Yeah.

SPEAKER_02 50:47

What about we do not care what the correct answer to the question is. Never say no to try and start an argument with the person with dementia. Never say no.

SPEAKER_00 51:00

Biggest bit of advice. That's actually great advice.

SPEAKER_02 51:05

Yeah. Um, speaking of advice, I think Michelle wanted to get some advice from you, Mark, before we sign off.

SPEAKER_00 51:13

Yeah, I just wanted to know if there was any, which maybe you've already shared, but any advice you'd like to give to another carer who was about to suddenly or suddenly embark on um, you know, their carer uh, you know, halfway, I don't want to say journey, but yeah, what what what?

SPEAKER_01 51:34

Probably the best when you start noticing things is to go to a neurologist and get those tests done. The earlier the better, because it's a yearly thing. You can go back four or five years, and then they can see the changes in the answer. So you've got something concrete to go on, then, and then you've got your MRI, and then you can work out a plan. I know if it was me. I I hope I had enough insight if I was told I would try and put a plan in place for myself and tell my family what I wanted and and how I wanted it done. But you've got to accept the diagnosis, and some do and some don't. But I think probably the earlier you get that early testing done, you've got something to go on and gives you gives you time.

SPEAKER_02 52:27

And you were saying that two of the really valuable things were David had already done a succession plan for the business.

SPEAKER_01 52:34

Yes, for the business. We had our wills made, we he had a succession plan. Um you had full power of attorney, and then I got full power of attorney um from um a very good geriatrician that um that assessed him. And uh I just feel I was so lucky with the the doctors that I dealt with. Um it was such a big plus for me. It is very good, I think, if you have got a family doctor, a doctor that you you see for a long time, they don't move off or whatever, because you can gradually talk about these things with them, things that you're noticing. And I was able to speak to our family doctor, and she saw David also, and and she wrote these things down, and and she could see a pattern developing too.

SPEAKER_02 53:33

Did your we're I bet you we've gone over time, but I just need to ask. I've seen a word, relief. Did you did your health and well-being improve once David was settled?

SPEAKER_01 53:45

Yes, I can't believe how much better I felt and safer I felt, yeah, and how I could sleep. Um it was it was a huge relief. Yeah, yeah, huge relief.

SPEAKER_02 53:58

Yeah. So I suppose you're still a carer, and I want to close by saying that if you choose the path of having your person that you love in care, yes, it's still caring. You're still caring for that person.

SPEAKER_01 54:15

Yes, you're still thinking of them and um and how you can make their lives better still. Yeah, um, special things you can do with them. Uh but it gives you a chance to build up your own health and your own life so that then you can contribute not only to his life but to your your your children and your grandchildren and be part of their lives as well. Whereas if you just go downhill, yeah, you're going to lose all of that.

SPEAKER_02 54:47

Because you've got something to give them as well, not just him. That's right. Yeah. Yeah, yeah. Oh Mark, you've given stuff to us today as well. Oh I think we need another episode with you. You've you've been amazing.

SPEAKER_01 55:00

The people I feel um a lot of compassion for are the people that are coping with people like David at home on their own because I can just see how their health must deteriorate and every day be the same, and the the the worry of the the violence and the repetition of the asking and and you your answering and just trying to get through the day. It's a very hard day to get through, isn't it?

SPEAKER_02 55:35

So look, if there is anybody out there who is feeling alone and that this today's conversation has made you feel like you don't want to be alone anymore, please email us at hello at power to care, P-O-W-E-R-T-O-C-A-R-E.com.au, and we'll get back to you as soon as we can. Um, we are just a group of carers who are supporting other carers, and we hope to get bigger and better. And what we do is just provide practical support and advice and link you in to all of the different supports that are available out there. So thank you. Thanks again, Mark, and lovely chatting to you, Chris, and catching up again. Yeah, and Michelle, we'll see you soon. Thank you. Hi Michelle.