JENNY BROCKIE: I haven’t met Auntie Ruth.
ISABELLE: She’s obviously got white hair.
JENNY BROCKIE: She’s got white hair? Do you think she’s old?
ISABELLE: I think so but she’s new.
JENNY BROCKIE: Tell me about some of the things that you do with Auntie Ruth.
ISABELLE: She plays and she reads stories and plays and go to shops and plays with me all day. She’s pretty and nice and calm with a smiley face.
JENNY BROCKIE: She sounds great.
JENNY BROCKIE: Is she funny.
ISABELLE: Yes she’s funny.
JENNY BROCKIE: How she is funny?
ISABELLE: She’s like ha ha ha, she does fat laughs, and big laughs he he he.
JENNY BROCKIE: Ruth, that's your grandniece Isabelle?
RUTH PONNIAH: That's right, yes.
JENNY BROCKIE: Is it a good description of you?
RUTH PONNIAH: I don't know. I hadn't, I wasn't aware that she was so observant but she is.
JENNY BROCKIE: You're 82, you live on your own, how’s that working out for you?
RUTH PONNIAH: It’s always worked out very well, yes. I've always lived on my own.
JENNY BROCKIE: Tell me what happened last year, you had some health problems last year, what went wrong?
RUTH PONNIAH: I fainted.
JENNY BROCKIE: And what happened, who, who helped you?
RUTH PONNIAH: Well, I wondered what this peculiar feeling was because it didn't look like my ceiling when I came to and realised that I had gone under the dining table and I crawled out and reached the phone and called for the ambulance.
JENNY BROCKIE: Now did you stay at home last year when you had these problems or did you stay somewhere else when you came out of hospital?
RUTH PONNIAH: Out of hospital, yes. I have my nephew and his wife, they took care of me.
JENNY BROCKIE: And what was that like, what was it like staying there rather than in your own house?
RUTH PONNIAH: It was alright except that I've was missing my music and they were insisting that I should go and be with them and I thought what's the difference? Both of you go off to work, your son goes off to university.
JENNY BROCKIE: And I'll be on my own?
RUTH PONNIAH: I'll be on my own anyway but the nurses did come to the house and attend to me.
JENNY BROCKIE: Okay. Richard I know that you're worried about Ruth living on her own especially after last year. Tell us why?
RICHARD PONNIAH: Yeah, because she's very fragile sometimes, and especially with incidents like what she mentioned. If she couldn't call someone it could be dangerous, but at the same time she's very, very independent so I think that's the best thing for her too.
JENNY BROCKIE: And have you suggested she move in with you permanently?
RICHARD PONNIAH: Yes, we did ask when she was with us, but I, I certainly realise that's not the perfect solution for her because she's very independent.
JENNY BROCKIE: Yeah, Ruth, who would you feel about moving in with Richard if you needed to, with Richard and Emily?
RUTH PONNIAH: No, it wouldn't be fair to them. I stay up late, I read.
JENNY BROCKIE: Great answer. You'd keep everyone up?
RUTH PONNIAH: I'd keep everyone up.
JENNY BROCKIE: What do you want though? I mean where do you want to be?
RUTH PONNIAH: Well, keep fingers crossed, I keep thinking that I'd like to stay on where I am.
JENNY BROCKIE: So no plans to move, you're not making any plans, contingency plans in case you need any kind of help?
RUTH PONNIAH: No. I'm hoping that I'll pop off by then.
JENNY BROCKIE: Swarna, you moved here from India sixteen years ago when your husband died to live with your daughter. How is that for you, how is that working out?
SWARNA SUNDARAM: I am very happy to stay with her.
JENNY BROCKIE: Why?
SWARNA SUNDARAM: She gives me everything.
JENNY BROCKIE: She looks after you?
SWARNA SUNDARAM: Yes, yes, she's looking, she looking after me.
JENNY BROCKIE: And do you expect that that's what she should do?
RAJI GOPAL: Do you expect me to look after you?
SWARNA SUNDARAM: Yes.
JENNY BROCKIE: Raji, you have a brother in India?
RAJI GOPAL: Yes I do.
JENNY BROCKIE: How was the decision made to bring your mother here to live with you rather than live with him in India?
RAJI GOPAL: I was here married for ten years when my father passed away in India so we had to rush there and in our culture, you know, my mum was always dependent on my dad. She wasn't work, but she was running a poultry farm and supporting my dad and all of a sudden, you know, when he passed away she didn't know what was happening and by then she had cancer twice in '92 and '98. And I don't think my brother could have at that situation helped her medically and mentally and all that stuff. So change of place would have helped her so we brought her here.
JENNY BROCKIE: It's tradition in your country for the son to look after the mother. Why did you choose your daughter to look after you?
SWARNA SUNDARAM: She likes me more.
JENNY BROCKIE: That was such a good answer. Such a good answer.
RAJI GOPAL: Saying that, you know, Indians, they always look for a boy. They want a boy, then a girl, all couples, you know, they need it but when old age comes they think girls can look after, I don’t know why?
JENNY BROCKIE: It's kind of common in lots of cultures I think. Megan, you're mum is 78 and she's unwell. She wants to stay at home too. How have you organised that so far for being at home and not being well? She has cancer, yeah?
MEGAN LEWIS: That's right, she's got stage 2, or stage 4 breast cancer and she's had that for two and a half years now. So obviously the decline or her capacity has reduced as her health has deteriorated. I guess what we did right from the beginning was sit down as a family and talk about how we're going to care for mum.
JENNY BROCKIE: Now your mum couldn't be with us tonight?
MEGAN LEWIS: That's right.
JENNY BROCKIE: To talk about her own sort of feelings about this?
MEGAN LEWIS: Yes.
JENNY BROCKIE: But I just wonder what you put in place and how you're managing that she is unwell to keep her at home to this point?
MEGAN LEWIS: So at a practical level, what we've got is she's been assessed for her home and aged care and she's got the highest level of care through that. So she gets a nurse come and check on her every week to make sure that she's actually got the best medical care and that her different responses to the chemo are being managed. She's got a carer who is actually the neighbour so she pops in and checks with her night and morning.
JENNY BROCKIE: Now the neighbour's away at the moment though?
MEGAN LEWIS: The neighbour goes away on Saturday, yes.
JENNY BROCKIE: Okay, for three weeks?
MEGAN LEWIS: That's right.
JENNY BROCKIE: What happens then?
MEGAN LEWIS: Mum's going to go into respite.
JENNY BROCKIE: Now she wants to be at home. Who's going to decide what happens next in terms of her living arrangements?
MEGAN LEWIS: Yeah, we had a big conversation about that yesterday actually, mum and I. We've agreed that it needs to be a family decision. Right from the beginning we made a commitment that this needs to be a family discussion. What I said to mum is you know, this may seem a bit harsh but it's not all about mum right now. We're actually doing this as a family and so we have to look at all our all our resources together.
We've said that all along we want mum to be safe and that's really important for her as well and that she has a say in what her life is like. So right now the plan is that in two weeks’ time after she's been in respite for two weeks we're going to sit down and have a conversation. So I've said to her she's got to keep her mind open to stay in care and she said to me I've got to keep my mind open that she'll come home so we're going to enter that conversation.
JENNY BROCKIE: So she really wants to stay at home if she can?
MEGAN LEWIS: Look, up until a point. She has always accepted that she would need to into aged care. You know, we've said to her look, we can't give you a blank cheque from the family perspective, that's just not possible for us, and again that comes back to because we're actually dealing with this was a family. We spoke with her doctor about which would be the aged care facilities he'd recommend and so we went and had a look at one. So again if mum was in a position where she had to make a decision, she could pick the one she wanted to pick.
JENNY BROCKIE: What did she think of it?
MEGAN LEWIS: It was pretty confronting I've got to say. She said to me before the lady turned up, she said I'm a bit nervous. I said I'm a bit nervous too. And I think really for her the clincher was they've got a really good palliative care team.
JENNY BROCKIE: But you have an expectation and you're negotiating with her the idea that everyone decides this, not just your mother?
MEGAN LEWIS: It's a family decision, yeah.
JENNY BROCKIE: I'd like to toss that idea around a bit. Cate, what do you think about that idea? You're 87, you don't have children and you live independently. What do you think about that?
CATE TURNER: I certainly don't want to be told by anyone what I have to do. I want to make my own choices and as long as I can I will do. I've seen enough of nursing homes to know that they can be, as Megan said, confronting and pretty jolly scary.
JENNY BROCKIE: Where do you want to live then if you get older and you need a lot of care?
CATE TURNER: I want to stay where I am and I want to, which is in a small block of units of people of roughly my own age, and I want Home Care as long as I can and if a day comes when I can't manage any more, I might think of contacting Dr Nietzsche and saying I'm ready to go because by that time I probably will be.
JENNY BROCKIE: Megan, your response to hearing that, to hearing someone so strongly say I want to decide?
MEGAN LEWIS: Yeah, and I don't want to suggest that mum won't decide or that she won't have a voice.
JENNY BROCKIE: Yeah, and I don't want to suggest you're denying her one either.
MEGAN LEWIS: Yeah, that's right.
JENNY BROCKIE: But it's an interesting question?
MEGAN LEWIS: Look, it absolutely is, and I think there's no necessary right or wrong answer but we've been really fortunate that mum has always been open to having the conversation with us.
JENNY BROCKIE: Okay, I want to throw it out to everybody, where do you all want to live when you get older? Where do you want to live Karen?
KAREN MASTERS: I want to be as independent as possible and just stay that way and I don't want to go into an old person's home. Even the very good ones are just horrible. They're devoid of life, of energy, of people who actually interact with the patients one-on-one. To me it's like a prison, I'd rather do what the native Americans used to do in the old days is wander off into the desert somewhere and just disappear.
JENNY BROCKIE: Seriously?
KAREN MASTERS: Seriously, rather than end up in an old person's home.
JENNY BROCKIE: Anyone else want to comment on this, where do you want to end up? Priya, where do you want to live?
PRIYA NAVARATHAM: Well I would like to be at home too because you know, it's a family environment, a comfortable, you've grown in it and the day-to-day interaction with the children, with grandchildren in and out, and even to some limited manner to be part of the home environment and what's going on around. It's a very important thing that I consider is the stimulant of the mind and to keep the person interactive with the day-to-day activities which keeps them alive.
JENNY BROCKIE: Rose?
ROSE O'DONNELL: I would like to think I could be independent in my old age and live on my own. But unlike that lady I would not expect my family or my son to look after me.
JENNY BROCKIE: Why?
ROSE O'DONNELL: He's got his own life to lead now and he's got his own family, his own problems. I wouldn't want to inflict that on him. Not while I'm able to.
RICHARD PONNIAH: But I think when you think of the family trying to look after them, the family doesn't feel like that. The kids will not feel that the mum is being a burden. They want to help. That's reality.
JENNY BROCKIE: Is that right though?
RICHARD PONNIAH: It is.
JENNY BROCKIE: Well no, there's people saying no, that's not true. Up the back, yeah?
FEMALE: I've got a mother who's 86 in a nursing home because she's got dementia and I've got a father who's 91 who lives at home alone. I'm a single woman with a teenage or 20 year old daughter who goes to uni. I struggle to spend time with either of them, quality time. I struggle to spend time giving my dad company.
He can get out and drive, he goes to see my mum every day in the nursing home but his social activities have very much been diminished as he's aged and I don't think he would be better off in a nursing home because he wants be to a home so adamantly, but I don't want to do that to my children. I want my children to have their life and my mum's got company. Maybe it's not the best environment, maybe it's not what we'd all choose but she's being looked after. She's being cuddled and hugged and loved and spoken to and she's got that every day. So it's a hard decision.
JENNY BROCKIE: Tony, you're a gerontologist, how good are we at helping people achieve what they want as they get older?
PROFESSOR TONY BROE, NEUROSCIENCE RESEARCH AUSTRALIA: Compared to other countries or absolutely how good are we?
JENNY BROCKIE: Well, both.
PROFESSOR TONY BROE: Um, I think the first point I'd like to make is that no one needs care because they're old. If you've got full capacity, it doesn't matter what age you are, you can look after yourself, you can stay in your own home and that's, that's fine. Now we're talking about people who are losing capacity, either through cancer, that's a progressive disease that the family needs to deal with as much as the person, or losing their insight and understanding that something's going wrong.
JENNY BROCKIE: Or their mobility?
PROFESSOR TONY BROE: Or their mobility.
JENNY BROCKIE: But how good are we do you think at meeting people's needs?
PROFESSOR TONY BROE: Okay. I think we're pretty good as, as a nation, as a country. I think we've put in an enormous amount of services. I think the problems are finding them when you need them and allocating them on a basis that's, what old people can understand and deal with.
RAMZI’S MOTHER: Ba ba black sheep have you any wool, yes sir, yes sir three bags full…. They are very good, very good people. This is my son, my only son, he’s a good man. I love him and he loves me. She is beautiful.
WOMAN: She loves you Taeta so much.
RAMZI’S MOTHER: I love this baby the best and you look nice too. I live a little bit in the house somewhere here. If I do something wrong they say don’t do it do something else. I love it because you look after me.
JENNY BROCKIE: Ramzi, why did you move your mum into the house?
RAMZI ELSAYED: We noticed some changes in her behaviour back in about 2009, '10, we monitored it and she was diagnosed with the early stages of dementia back in 2010. We tried as much as possible to keep her independent at home and, but slowly there was some what we call behavioural changes and dysfunctional outcomes that arose as a result of her being by herself, being at home. So the decision was made along with my sisters that we would, that you know, she was living actually in transition. She went from being at home to my sisters for a few days a week and then…
JENNY BROCKIE: Now did she know what was going on, what the plan was or did you make this plan?
RAMZI ELSAYED: No, she was resistant and I think it was clear in the audience that she wanted to be independent as much as possible and to enjoy the life style that she had had throughout her life. And we would make overtures, mum, come and stay with us, come and stay with us and she was highly resistant.
JENNY BROCKIE: Now how's it working out so far?
RAMZI ELSAYED: It's fine. We're fortunate, we have, while mum stays with me for four days a week or four nights a week, she's also at my sister's for three nights a week. So we spread the love, as I call it, and it is love from us, we're very honoured and feel very blessed that she's with us actually and so…
JENNY BROCKIE: Do you think she's happy? Do you think it's what she wants?
RAMZI ELSAYED: Um, I would hope so. I do think so. She wants to be honoured and dignified and I think that's fairly clear in what we've heard tonight. And we're hoping…
JENNY BROCKIE: Saajeda, how do you think it's working out?
SAAJEDA ELSAYED: Honestly I think it's working out great, you know, it's difficult time and it can be difficult sometimes. Circumstances can be hard but overall like if I was to say it's great. You know, it's more of a lesson for us and we learn and we benefit so much from her living with us more than she benefits.
JENNY BROCKIE: Cathy, your dad moved in with you and your husband and kids five years ago. How are you managing?
CATHY PIRRECA: We've been managing quite well up until probably January this year. He's had a bit of a decline, mainly been incontinent and that's a little bit hard, but then there's days that he's absolutely perfect, so…
JENNY BROCKIE: So why did he move in with you in initially?
CATHY PIRRECA: Well my mum passed away quite suddenly and mum always said you need to look after your father when I die.
JENNY BROCKIE: So you felt that that was inevitable?
CATHY PIRRECA: That was my duty.
JENNY BROCKIE: That was your duty. How was your dad's health then when he first moved in?
CATHY PIRRECA: Perfect, he was amazing. A wonderful husband actually, before I even came home from hospital when my mum passed away, said to me I've told your dad he doesn't need to go back home.
JENNY BROCKIE: Sonny, how did you convince him to move in?
SONNY PIRRECA: Well, I really didn't give him a choice. We, we just sort of, we came home from the hospital that night when my mother-in-law passed away and I said to dad, this is your new home and he said do you want me to move in? I said of course and I did it more for the family and I knew that if my father-in-law had gone home on his own, it would have been something that Cathy would have been thinking about all the time. So…
JENNY BROCKIE: But was it what he wanted?
SONNY PIRRECA: My father-in-law was the sort of person that doesn't really know what he wants. He's sort of guided all the time but I think he loved the idea of coming to live with us because it keeps him with the grandchildren, he's very close to his daughter, and I don't think he minded at all coming home. In actual fact when we told him to come and live with us there was no hesitation at all.
JENNY BROCKIE: Now he's since been diagnosed with dementia, why is he at your home now when you said he's suffering from incontinence as well? Why is he at your home now rather than in care?
CATHY PIRRECA: I think that's something again I'm struggling with because I have heard some horror stories like this lovely lady said over here. You know, we live in a lovely house and he's surrounded by his beautiful grandchildren and yeah, I just don't want him to be stuck in four walls really.
JENNY BROCKIE: Your son John is here and John you spend a lot of time with your grandfather. Here you are at home with him last week.
JOHN PIRRECA: I can’t imagine life without my grandfather Giuseppe, when I go overseas, I miss my parents but I miss him even more.
GIUSEPPE (Translation): Here, I’ll give you the itch.
JOHN PIRRECA: No, no itch.
GIUSEPPE (Translation): Did you get rid of it?
JOHN PIRRECA: Yes. Grandpa, here…put your seatbelt on. What I would like him to have in life is to enjoy himself, be happy, no problems. Just be a normal person of eighty years old.
GIUSEPPE (Translation): Slow down. Shit! Look at that.
JOHN PIRRECA: I think I can help him out by taking him to the club on the weekend, by taking him out to like the pizzeria, get him social rather than sit around doing nothing. What’s special about grandfather is he is very loving and caring. We are getting closer as he grows older.
JENNY BROCKIE: John, why do you think you're getting closer as he grows older?
JOHN PIRRECA: He tells me like stories of when he was like younger, when he was in the army or what he did for work. So sort of I find it interesting to find out what he did during his days or how he lived, like what they did.
JENNY BROCKIE: Was that a normal day for him?
JOHN PIRRECA: That would have been, it was a normal day but he does have off days. He does tell me off in the car thinking I'm going the wrong way.
CATHY PIRRECA: Yeah, he's always been like that.
JENNY BROCKIE: Okay. Let's just talk about the day-to-day a little bit more. Cathy, what's a typical day look like for you looking after your dad, describe it to me? You wake up in the morning and what happens?
CATHY PIRRECA: I wake up in the morning. The first thing I do, I go into his room, but of course I get a little surprise every morning. So he's gotten confused where the toilet is at night, so it's always in a little corner, he's decided that that's the toilet of late. So yeah!
JENNY BROCKIE: So that happens pretty much every day?
CATHY PIRRECA: Pretty much every morning.
JENNY BROCKIE: And what else do you have to do because you have a paid job as well?
CATHY PIRRECA: I do, so I then have to obviously make sure he's taken his medication. I make sure he has a pretty good breakfast because then I have to go out of the house and that's when I do have carers that come in. I don't get a lot of hours but just of recent I've had him reassessed and he has been approved for high care.
JENNY BROCKIE: What does that mean, how many hours?
CATHY PIRRECA: What that means eventually I'll be able to get twelve hours but he's on a waiting list. So that could take six months.
JENNY BROCKIE: Is your job full time?
CATHY PIRRECA: Yes.
JENNY BROCKIE: So twelve hours a week, that's not much really?
CATHY PIRRECA: No.
JENNY BROCKIE: And you're both working?
CATHY PIRRECA: That's right.
JENNY BROCKIE: And what about your two children, they're both working as well?
CATHY PIRRECA: Full time.
JENNY BROCKIE: So is your dad at home a lot on his own?
CATHY PIRRECA: Well yes, yes he is. So basically at the moment I only have four hours. So I get Co-as-It, which have been wonderful.
JENNY BROCKIE: Now this is an Italian community…?
CATHY PIRRECA: This is an Italian community that does aged care, Home Care packages at home and they've been wonderful. So they, they've been wonderful in the sense that I've been able to get the same two gentlemen to come and see dad. So dad's become very familiar with them. Like when they come you can just see his whole face lights up, you know, in the morning. They shower him and then they basically just have enough time maybe to take him for a walk, a quick walk, down to the shop.
JENNY BROCKIE: And he's gone missing a couple of times?
CATHY PIRRECA: Yeah, only twice. The last time was a very big scare for us, which was only in January. Sonny and I happened to be away for the weekend and my lovely children were looking after him. He went missing for what, seven hours? So it was very frightening. I got the call while I was away.
JENNY BROCKIE: What was that like Lauren?
LAUREN PIRRECA: Very scary. I was in bed and Johnny came into my room and he said oh, nonno’s gone but he was very calm about it. So I didn't really register at first, I was a bit like what do you mean he's gone? He's like he's gone, we can't find him. I contacted the police first because my grandfather's got a dementia bracelet so if someone finds him they call the number on the bracelet and it rings the local police.
Then once we told mum and dad the situation I thought it would be a good idea to put it on Facebook. Just by me putting on Facebook it was shared over 600 times and I had so many people calling me and contacting me saying that one person saw him at 8.30 at the shops, you know, another person saw him at this time at this location. A girl who I don't know but we have friends in common on Facebook sent me a message to say I've seen your grandfather, he's in Canterbury, he's on the side of Canterbury Road with police and people, he's okay, and then literally five minutes later I got a phone call from Campsie Police Station to say that they'd found him.
JENNY BROCKIE: And how did you feel when you got that call?
LAUREN PIRRECA: Oh, relieved.
JENNY BROCKIE: Sonny, how do you think it's working out at this stage?
SONNY PIRRECA: Look, it's working out okay. Look, it's got its pitfalls. You know, obviously there's a lot of strain on Cathy, a lot of pressures. You know, she's got to cook for five people, wash, cook and iron for five people and we do have social life so it does affect us a little bit. We're very, very lucky that the kids play a major part in the whole thing as well.
JENNY BROCKIE: And what about you, what role do you play?
SONNY PIRRECA: Well look, I'll take him to the doctors when Cath can't if she's busy and I can juggle work. I'll take him to go and get a haircut on the weekends. But look, I try to support Cathy in every which way that I can. If I can make things a little bit easier and the family can run smoother, well I'm there to support her.
JENNY BROCKIE: Is it having an effect on your relationship do you think?
SONNY PIRRECA: It does from time to time. I mean you know, you've got to understand that Cath, we work five days a week. With all the hours that she puts in for her dad, there does come situations where we'll need to go out of a Saturday and I'll say look, I'm really, really tired, can we give it a miss? And obviously, you know, everybody wants to get out and have a good time. So it does have a strain.
JENNY BROCKIE: What happened on Valentine's Day Cathy?
CATHY PIRRECA: Oh, that was the night we should never have gone out. But anyway, my husband had booked a restaurant for, I think the cab, he said we've got a cab coming at 7.30 and I said okay, I'll make sure I'm ready. And of course it was about 7 o'clock, poor Johnny comes up, just about to get in the shower, oh, I think nonno needs you. And I said okay, is he alright? He goes yeah, I think he's done a number 2 and he's made a little bit of a mess and I went okay, no worries. So of course I've come downstairs and I'm thinking oh, God, there's no way I'm catching this cab at 7.30 because I had to literally put him back in the shower, shower him, got him sorted. By the time I went upstairs it was like 10 past 7, was it Sonny?
SONNY PIRRECA: Probably a little bit later.
CATHY PIRRECA: And then I was crying, I got really teary because that's the side of dad that I'm thinking oh, the poor thing, like how humiliating for this poor man and my dad was a clean freak and I think I was just upset seeing that because that was the very first time that that had happened. And of course I'm upstairs crying and Sonny sort of said oh, what's wrong babe? I said why are you asking me for like I just ..
SONNY PIRRECA: I was the punching bag.
CATHY PIRRECA: So I just sort of lashed out at him because I thought, well what do you think's wrong with me? Your son's just called me to go and fix my dad and, you know it does, like I just lost it at him.
JENNY BROCKIE: And do things like that happen between you?
CATHY PIRRECA: Look, it doesn't happen that often. I think it's only when I'm under pressure, like knowing that this cab was picking me up at 7.30 and I had just like fifteen minutes to get ready. Yeah, I don't do well under pressure.
JENNY BROCKIE: And you're under a lot of pressure?
CATHY PIRRECA: So, yeah.
JENNY BROCKIE: Ramzi, do you feel any of these sorts of pressures in your house?
RAMZI ELSAYED: Probably not as great, I suppose. There's always going to be pressures on say the marriage but what came to mind when I'm hearing your story, I suppose, was how much my wife, my two brothers-in-law take on board and we never give the time to really thank them. Sonny, it’s a testament to you as well, I mean just making that gesture you're coming with me, that phenomenal, and really…
JENNY BROCKIE: Is your wife carrying most of the caring load?
RAMZI ELSAYED: Well, we share the love. It's certainly a situation that she has specific tasks and duties but there's no doubt a lot of the administration side of things, organising a lot of the external programs, I'll do a lot of the caring, house caring usually, that's how it often operates and falls. But because, you know, it's just sort of worked out that way.
JENNY BROCKIE: Do you think there'll come a time when you can't look after your mother anymore?
RAMZI ELSAYED: Yeah, that's a great question and something that, you know, I didn't want to think about. But you know, you have to read the signs as they say and be a little bit anticipatory. But I don't want to write a self-fulfilling prophecy either.
JENNY BROCKIE: Saajeda, what do you think, a generation, the next generation, how do you see it?
SAAJEDA ELSAYED: I totally agree with what my dad's saying, there's nothing that I honestly don't agree with. But I think, we have told my dad this but I think he might be in a bit of denial, not in a bad way, not in a bad way, you know, that's the worst, that's the last thing I want to say is, you know, you're in denial about your mother and how she's going. And of course my grandmother as well, but I think, you know, the time is coming close where it's just, it's not, I hope she can stay with us for as long as possible but there's going to be a time I think where she's going to need, she's already at twenty four hour care and there's going to be a time where, you know, the people in the house might not be able to do those things any more that they used to do.
JENNY BROCKIE: Do you think you'll feel the obligation to look after your dad in the same way and have him move into your house? Would you expect that Ramzi, of your daughter?
RAMZI ELSAYED: What I'm doing, and this might sound totally selfish looking after my mother I suppose, there's some modelling going on here, example setting, if you want to say, and the example is I believe not so much sort of that mum's at home with us, it's about making sure that she is honoured and respected and given…
JENNY BROCKIE: But I'm talking about what you expect?
RAMZI ELSAYED: Oh well, it's really, I wouldn't, it's one of those questions I suppose I haven't thought. I would anticipate that I will get, I suppose, what I, how I treated my parents.
JENNY BROCKIE: And Saajeda, would you have the same attitudes as your father or do you think as the next generation you'll have different attitudes?
SAAJEDA ELSAYED: It's a simple for me, it's a principle that I see my parents, see what they've done for me all my life, the least I can do take them in for the last few years of their life.
JENNY BROCKIE: Cathy, is culture a part of your decision about having him live with you do you think, being Italian, Italian family?
CATHY PIRRECA: Yeah, I think that has a major part as well and obviously being the daughter, that's also my duty and I think it is part of the culture.
JENNY BROCKIE: Do you expect it of your kids?
CATHY PIRRECA: No, I don't actually, especially if I end up with dementia, definitely not. Because I know what my family's gone through and they've already gone through it enough having to deal with my father with dementia. So I don't think I would do that to my children.
OLYMPIA ALEXOPOULOS: I was thinking of doing something like spaghetti today.
ROSE STUYT: That would be nice.
OLYMPIA ALEXOPOULOS: Okay, done. She's kind of a house mate. We have been together for a long time now, yeah.
ROSE STUYT: Olympia came to live with me because a couple of years ago my husband died and I had a heart attack. So I wanted to stay home, because everything's here for me at home.
OLYMPIA ALEXOPOULOS: Rose needed mostly cooking, driving around, shopping, the basic things.
ROSE STUYT: That’s right.
OLYMPIA ALEXOPOULOS: And I love cooking, so...
ROSE STUYT: So this house comprises of four bedrooms, two studies, lounge-dining and also a kitchen family room, because I love doing my cross word puzzles and watching television.
OLYMPIA ALEXOPOULOS: Rose is disabled, she needs someone to stay at home with her also so she can remain in her home. That's how I came about.
ROSE STUYT: She's the best folder-upper I have come across, she loves being tidy, whereas I am inclined to be untidy.
OLYMPIA ALEXOPOULOS: The fun mother figure, the things you don't do with your real mum, you know, all that.
ROSE STUYT: Olympia is a carer, but to me, you could say she's nearly like a daughter.
JENNY BROCKIE: Rose, Olympia moved in with you two years ago. How does the arrangement work? What is it, how did you get it going?
ROSE STUYT: Well, it works very well. It first started with Care Connect, they did a wonderful job to coordinate. What they do with Care Connect, if you want to stay at home on your own, you need a home sharer and I'm the home owner. And with Care Connect they interview each one separately and then after a while we meet each other about twice and then the home sharer can shift into your home.
It's a real God send because my daughter who lived in Paris didn't want me to stay at home and my son has his two boys to look after and he didn't want me to stay at home. They wanted me to downsize or go into a nursing home. So this was a God send.
JENNY BROCKIE: How does it work for you Olympia?
OLYMPIA ALEXOPOULOS: How does it work for me?
JENNY BROCKIE: Mmm?
OLYMPIA ALEXOPOULOS: Because I didn't really want to live alone and it's kind of difficult to live alone also. So this is one, it was a great solution and we get along very well.
JENNY BROCKIE: How did you work out whether you were going to actually be able to live together?
ROSE STUYT: What they do with Care Connect you sign an agreement for six months and then they check whether you're compatible, that's most important, and we treat Olympia as one of the family. I feel that's very important if you have a home sharer, you get on better that way, and after six months they do a one year contract and they check on you. But in between times you've always got the coordinator to speak to if there should be any hiccups along the way and they always keep an eye on you.
JENNY BROCKIE: And what happens if your life changes Olympia, if you want to go and live overseas or if you decide you want to live in your own place, or if your life changes, what happens then?
OLYMPIA ALEXOPOULOS: If it does change that's something that I will discuss with Rose and I will help her, if I need to leave I will help her along the way to find someone else to be with. I will be there with her until that happens.
JENNY BROCKIE: Okay. Tamar, you've set up small group homes where six to ten people live with support. How does that work?
TAMAR KREBS, GROUP HOMES AUSTRALIA: So each home is in the community, from the outside it looks like a home, when you walk in it smells like a home, it doesn't have smells of urine and faeces like an institution. There's smells of cooking and baking. The residents living in the home have dementia from low level all the way to high care dementia, as well as end of life care, but the care is very much an experiential model where we create experiences throughout the day. So if residents want to get involved in the cooking, the baking, the gardening, the shopping, anything that they want it's very much individualised. We don't wake them up, we don't tell them what to do.
JENNY BROCKIE: Now this, this is an expensive option though?
TAMAR KREBS: So at a first glance you might think that but we have residents living in the home that are pensioner concessioners, they've sold their house and their children are the ones making those choices where they're going to go into care. They're usually coming into care for about two or three years and the children are the ones that are going to choose where they want to spend their parents money, if they want to spend it on the care, if they want to hold it for their inheritance.
JENNY BROCKIE: Yes, yes?
JULIE HOLLINGWORTH: I've been listening through the discussion and thinking there are some common themes behind all of the discussion here, including what do you do in the community or what do you do to give people what they want, or give us what we want because I'm in that age group. And the three things that I'm hearing are people my age and older want autonomy, to have purpose in their lives and relationship. I think we have to find the basic principles of what is it that we're trying to satisfy and meet and then design from there.
JENNY BROCKIE: What have you done?
JULIE HOLLINGWORTH: So we have a household which is three couples who have designed together a way of living in a shared house where we have private space and communal space and we did it to age autonomously, to still have purpose in our lives and be able to do the things that we really are, you know, enriched by.
JENNY BROCKIE: Now you've built this house?
JULIE HOLLINGWORTH: Yes, it's a purpose built house and…
JENNY BROCKIE: In Taree, New South Wales.
JULIE HOLLINGWORTH: In Taree.
MICHAEL HOLLINGWORTH: 25 kilometres out of Taree.
JENNY BROCKIE: So regional New South Wales.
JULIE HOLLINGWORTH: Regional NSW, and we moved from Sydney to do it. We were all friends and we would meet and socialise and some of us would holiday together and we started to do that more and more. And as we aged we noticed that there were more and more things that we were grappling with in life personally and about the welfare of our parents. So three of us had parents who were at the time where we had to come up with answers for what to do and we couldn't find answers that satisfied our parents.
MICHAEL HOLLINGWORTH: Or us.
JENNY BROCKIE: So you decided that you were going to act to pre-emptively.
MICHAEL HOLLINGWORTH: Do it yourself nursing home.
JENNY BROCKIE: A do it yourself nursing home. So you built your do it yourself nursing home and you had three couples in it.
JULIE HOLLINGWORTH: Yes.
JENNY BROCKIE: How much did it cost?
JULIE HOLLINGWORTH: We all put $250,000 on the table and that bought the land.
JENNY BROCKIE: Per couple.
JULIE HOLLINGWORTH: Per couple and you can see that $250,000 would not buy you an answer.
MICHAEL HOLLINGWORTH: On your own or as a couple.
JULIE HOLLINGWORTH: In Sydney just as a nuclear family or just the two of us.
JENNY BROCKIE: How did you know you'd all get on?
JULIE HOLLINGWORTH: We tested it. We tried it out, we rented a place. We all came out of our homes in Sydney and let those go in various ways and found a house which was big enough for us to try out private space and shared space under the one roof.
MICHAEL HOLLINGWORTH: For three years.
JULIE HOLLINGWORTH: For three years we did that.
JENNY BROCKIE: Three years you tested it before you built something?
JULIE HOLLINGWORTH: Yes.
JENNY BROCKIE: So what happens if one of you needs around the clock care? What happens if one of you gets dementia? What happens then?
JULIE HOLLINGWORTH: Our first step is to see can we do it for each other. Can we bring services to the home, there's six of us there and that seems like that's enough people, that you should be able to get some services fairly easily, though we're thirty minutes from town. But our idea is well let's see what we can do for one another? So how much can we just cooperating and taking care of each other as family.
JENNY BROCKIE: And what happens if somebody dies and there's an estate to divide up?
JULIE HOLLINGWORTH: Okay, that's - we set up a legal agreement so we own the house.
MICHAEL HOLLINGWORTH: Equal shares.
JULIE HOLLINGWORTH: In equal shares. So Michael's got a one sixth share and I've got a one sixth share and if we have things like disability or divorce or death which means somebody is going to leave, we've got a sort of cascading set of actions and understandings, but our endeavour has been how long can we keep this going? What are all the possible things that could happen in this set-up and let's think that through and work out some answers while we can and then see if we can do it.
JENNY BROCKIE: Jane, what do you think of this idea?
JANE MUSSARED, COUNCIL ON THE AGEING SA: I love the flexibility of it. I love the idea that people are experimenting. I think that's what we need to do. We're hearing about lots of different lives and arrangements. We're hearing about lots of different capacity from families and so we need lots of different solutions and, you know, that's, I think in the past we've been a bit wedded to, you know either you're at home or you're in a residential care in a nursing home and there are lots of variations of those themes that we should be testing and experimenting with.
JENNY BROCKIE: Ian, is that sort of thing just an option for the well off? I mean what do you think of an experiment like that?
IAN YATES, COUNCILS ON THE AGEING: So we've used to have a system, we still largely do have a system that says these are the solutions that we will offer you that we come up with. What we're moving to, from February next year, in the Home Care packages is that the Home Care package doesn't go to the provider any more, it goes to the person who's assessed as having need. When that's happening there'll actually be an incentive for more people out there to come up with other solutions.
JENNY BROCKIE: If we dismantled the current system altogether and started all over again, just, you know, absolutely from scratch, what would you design and would you be able to keep people at home for longer, in their homes where they want to be, where all these people, you know, when we started tonight, said they want to be?
IAN YATES: Well absolutely because that's how - that is the first thing that we've been changing about aged care for the last thirty, forty years. We devised a basic system of Home Care; in the last fifteen years we've developed high level care at home. Now we have many, many tens of thousands of those kind of packages and part of the reforms is to have lots more.
JENNY BROCKIE: Sonny, how long do you think you can keep the situation going at your house?
SONNY PIRRECA: Well I've always said to Cathy, look, I'm happy to have your dad here for as long as we have to, to the point where he's not endangering himself or endangering others. When it gets to the point where he's endangering himself, well obviously we're going to have to look for the next solution. But at this stage we're just taking it time, day by day.
JENNY BROCKIE: Cathy?
CATHY PIRRECA: Yes, I guess, you know, Sonny keeps saying to me you have to stop thinking with your heart and start thinking with your head. You know, your father's, the majority of the time is on his own, wouldn't you rather know that your dad's being looked after, he's in company? And I guess in one sense, yeah, I would rather that for my dad. But at the same time I think he will miss, you know, not, I know he doesn't see us until we get home but it's nice to have that family around you when we are at home. You can just see his face lights up.
JENNY BROCKIE: Saajeda, you were nodding then at the first part of that answer?
SAAJEDA ELSAYED: Yeah.
JENNY BROCKIE: Why?
SAAJEDA ELSAYED: You know, I think I see that a lot with my dad, especially with his siblings as well. Where Sonny was saying how you have to take the heart out and sometimes think with your brain, not just with your mind and think about, you know, what's good for them. And sometimes it's not even about us, it's not about what we want. You know, I would love to have my grandma living with us as long as she possibly can, but for her best interests and what's good for her maybe at one point in time she might have to go into care.
JENNY BROCKIE: Ramzi, you're ready for that?
RAMZI ELSAYED: Well I'm fluid with my attitude, just like mum's position is fluid as well and it changes. So whereas before it was probably I would say no, it was a definite no but having seen possibly the options and heard options and, you know, I'm certainly open to those sorts of thoughts.
JENNY BROCKIE: Ruth, how long do you think you'll be staying at your house?
RUTH PONNIAH: As long as my physical body will let me. It's, one forgets that the body gets weak too and so it is important that I'll have to look somewhere else. But that somewhere else I don't know where it is and the thing is that the time hasn't come yet for me.
JENNY BROCKIE: Swarna, how long do you think that you'll live with Raji?
RAJI GOPAL: How long will you live with me? How long do you think you will live?
SWARNA SUNDARAM: Till the end of my life. I want to live with her, my daughter, Raji.
JENNY BROCKIE: Till the end of your life?
RAJI GOPAL: It's a cultural thing, they take it for granted, that's the culture.
JENNY BROCKIE: So what will you expect of your children?
RAJI GOPAL: I would like to live where my children are, maybe the same suburb, somewhere close by, but I wouldn't move into their place.
JENNY BROCKIE: Why?
RAJI GOPAL: Because I understand the difficulties here. Not like my mum, you know? She doesn't understand, however much you say she doesn't understand. She think she's needs the time with me, every day when I come back from work, as I'm getting up she's waiting to see me. I have to spend ten minutes, fifteen minutes with her every day to find out what's happened, you know, and it's the same story. But you know, sometimes I won't be listening but I'll be saying okay, okay, okay and then I'll be sitting but that helps her to keep going and she's waiting every day. You know, because she's eight, nine hours alone at home.
JENNY BROCKIE: But you can't imagine doing that with your children?
RAJI GOPAL: No, because I don't want my daughter nodding, not listening, because I’ve done it, you know? You don't want that because…
JENNY BROCKIE: So what will you do, where will you go when you need…
RAJI GOPAL: We've started planning, my husband and I started thinking about, seeing the financial planner already and what we want in our life, where we're going to live, what is the lifestyle going to be. If you have, I think financially if you plan you can do it. So I wouldn't, I wouldn't go and live with my children, definitely.
JENNY BROCKIE: So much more to talk about this, we've only just scratched the surface I think but thank you all so much for joining us tonight and for sharing your stories. Really great to have you here and that is all we have time for here but let's keep talking about this on Twitter and on Facebook. Thank you everybody.