Changing relationships
How partner, parent and family relationships can change
Transcript
[BEGINNING of recorded material]
Speakers: Hamish Macdonald, Jim Rogers, Kevyn DA Advocate, Col Blake, Choir Master Robert, Speaker 1, Sanna
Kevyn DA Advocate: Hello. My name is Kevyn. I am a First Nations advocate with Dementia Australia. For more than 50,000 years, we have come together to trade knowledge, to learn and to teach. Today, we join to keep up that tradition. So with that in mind, we now pay our respects to the traditional owners, to Elders past and present, to those First Nations people joining us here today.
Col Blake: We met in 1966 at a dance [music plays] at the Hurstville Civic Centre. Every Saturday night there was a dance there. I was 21. Shirley was 20. I spotted Shirley in the barn dance. I watched her and she was knocking guys back. So I waited till the last dance, walked up, asked for a dance. Said: “Yes, oh, okay.” So yeah, we had a dance and that was that, and I asked her out.
Hamish Macdonald: This is Col. He and Shirley have been together for more than 50 years now, and believe it or not, they're still dancing together too. Every Tuesday, Col takes Shirley to St Luke's Care so they can sing and dance with a dementia choir. Shirley's lived with dementia for more than eight years now and Col's been her carer since her diagnosis.
Choir Master Robert: How are we all feeling today? Energised?
Male voice: “Energised. Alive.”
Choir Master Robert: So let's do “What a Wonderful World”.
Col Blake: It started two years ago. We've been involved right from the start. It started with 10 and now there's about 40, and it's just — it's fun. It's the highlight of a lot of people's week. I try not to miss it, because I think we both get a lot from it.
[Piano starts]
Choir Master Robert: Here we go.
[Choir starts singing]
Col Blake: We have the advantage too of being able to dance while we're here. Robert puts us through our dance routine every week and picks a song, and we dance to it. It just gives you an uplift, for both of us, I mean I can just watch Shirley. When we dance, Shirley doesn't have dementia, and I can feel that. It's the look on her face.
[Choir continues singing and music plays]
Hamish Macdonald: Col's found a great way to hold on to a special part of his relationship with Shirley, as her dementia develops. One of the hardest things about being a carer can be watching the person you love change before your eyes — especially if that changes the nature of your relationship.
[Music plays]
Hamish Macdonald: Hey there. I'm Hamish Macdonald and I was taking care of my dad when he was diagnosed with Lewy body dementia and Parkinson's.
Jim Rogers: And I'm Jim Rogers. I was diagnosed with younger onset Alzheimer's in 2021. This is Hold the Moment, a podcast by people living with dementia and their families.
Hamish Macdonald: So Jim, I've met your husband, Tyler, a few times now: great guy, but I'm kind of curious, how's your relationship changed since the diagnosis?
Jim Rogers: It does change a little bit, Hamish, because you start to — not withdraw a little bit — but you rely on the other person. I also think in social settings, you start to just be aware that you know you have got this to live with, and you're just mindful. Tyler will sometimes — in a social setting where there's a lot of conversations — will try to steer the conversation. For example, if we went out with you and your husband, we would not try to have two individual conversations, because it's like two radio stations playing at once. So he would sort of try and redirect the conversation into, you know, everybody listening to one person at once.
Hamish Macdonald: And what about the dynamic between the pair of you? Because I know before the diagnosis, you were very much the driver of a lot of decisions. You were very strong on the business side of things, the investments, the house, the family. That's had to change, hasn't it?
Jim Rogers: Yeah, I think I'm still the big ideas man. I've always got a lot of things that I want to do and I've always got these, you know, big dreams, still. But Ty is the one that is — he makes it happen. And from a perspective of putting it down on paper or organising it, or the financial perspective, he's the person that would be in charge of all of that, because I've sort of lost that ability now.
Hamish Macdonald: Because you don't do any of the finances or anything like that anymore?
Jim Rogers: No nothing and I'm pretty useless with that sort of stuff. I could do, but the less you do it, the less you sort of bother to do it, and I'm very lucky that he's good at it, and he's in finance anyway — he's a mortgage broker — so that works well for us.
Hamish Macdonald: And that change, does that cause emotional tension?
Jim Rogers: I don't think that is really one of the most significant things. I think there is a feeling of independence being lost that can cause a little tension. I feel as though sometimes I'm waiting around for him not to be busy, so we could go and do stuff, because I no longer work and I'm retired, but I don't think it's a massive elephant in the room. It's just, you know, you have to adjust, and you just kind of be positive and get on with it.
Hamish Macdonald: And of course, Jim, we know that no dementia journey is the same as any other. In fact, relationships can change incredibly quickly when someone's living with dementia. Shirley's personality started to change right after her diagnosis.
Jim Rogers: Absolutely and when they first met, Col remembers one thing in particular about her.
Col Blake: Very confident. She was a very confident woman. In fact, probably that's one of the things that attracted me to her. She was very forthright. She knew what she wanted. Quiet. She was a very quiet person. Fact, it's funny, that's something I've noticed. Her personality change has been incredible. She was very quiet. But once we had kids, her personality changed enormously. You know, like school and that — meeting with other parents and families, and that — Shirley was far more outspoken. Then once dementia came, it reverted back. The dementia groups I've been involved with too, that a lot of people do get — because they're behind the conversation, so they're not picking up — so, they get quieter and quieter and quieter, you know.
Hamish Macdonald: What was it like parenting with Shirley?
Col Blake: She did all the caring. She was great. She was a really good carer. I put myself in the traditional role of my vintage, you know, I'm about to turn 80 next year.
Jim Rogers: You look amazing for 80.
Hamish Macdonald: Yeah.
Col Blake: But in that vintage, you did a nine-to-five job, and that was it. I used to leave home about 7.30, I’d get home about 7 at night. So those five days were all Shirley you know, she was —
Jim Rogers: She was the core of the home. She was running everything.
Col Blake: Yeah, she was running the whole show, you know? And I say that now, that with dementia — and I've said it to my kids too — like, it's now our turn to be carers.
[Music plays]
Hamish Macdonald: How has Shirley changed since she started caring for her?
Col Blake: Shirley didn't sort of show enough symptoms at first, yeah, and then as time — I mean, eight years now it's — I'm at the end of the line in that sense. You know, there's not much left. But over that period of time, and it's been that — and it’s the levels you'll get, you'll get your levels of drops , and then you adjust. You know, as a carer, that's where I find, that I've got to adjust. No one can tell me what to do. It becomes a very personal thing where you, you know how to handle things you know, and you just pick up on that, you know? And, I mean, Shirley is not the girl I married. Nothing is left of that. You know, that's — it's all gone.
[Music plays]
Jim Rogers: When did it start to feel like you were becoming a carer then? That you were starting to take more control over the day-to-day running of things?
Col Blake: Probably, a few years, I’d say. Shirley was still, you know, capable of doing things. That first six years of it, it was progressing. But yeah, even then, signage, especially in the early days, was very important, because Shirley didn't know where things went. Being a graphic designer, I've got it everywhere, you know: the ‘socks’ and ‘shoes’ and ‘da-da-da-da-da’ and everything's labelled, but now it means nothing.
Hamish Macdonald: Can you just talk to me, Col about how you now think about your relationship with Shirley, given that it's, as you say, you've moved into the carer role, and I think you were describing it earlier, as you know, there's not a lot of the person you first met, left. How do you hold that in your own mind and maybe in your own heart?
Col Blake: Yeah, well, it's: it is memories. Memories are important, I think. I sum it up by saying that it was a shared love, back then. It's now ‘dependent love’. It really is. It's all me, just depending on me, you know. There's not a lot she can share anymore, because she can't. She — there's no conversation left anymore. And that's difficult. You know? That is hard. I remember when she first got diagnosed: “Well, I'm not going to sit on my bum and do nothing about this.” It was a challenge, in a sense, yeah, I mean, I've always been involved with things. Well, this is my new thing I can get involved with, you know, and if I can keep Shirley happy, for the moment. I mean, the whole life now is ‘moments’.
Hamish Macdonald: Do you feel lonely?
Col Blake: Yes. Yeah, you do. Yeah. Loneliness is a lot to do with it. Shirley does two half-days daycare now. And when I first got the option to do it, I knocked — I basically said: “Oh I don't need it.” Because I felt I had to be doing something.
Jim Rogers: Yeah.
Col Blake: That was that: “Oh, I've got to, if I’ve got that four hours, I've got to do this, this and this.” And my daughter, who’s a doctor, said: “Dad, it's your mind. It's giving you free mind space. You know Shirley’s safe. You know, she's happy there.”
Jim Rogers: It’s so important. It's like a parent with a young child, you know, they just need a break, just to be yourself for a moment and not worry about somebody.
Col Blake: Yeah, yeah. But when — but it's funny, yesterday, she was in care, and I was walking by myself, and I thought: “Ah, this is what it's going to be like, you know, it's, it's, it's going.” Yeah, it's sort of it's — but you do get lonely and you're grieving, you're already grieving, yeah.
[Music plays]
Jim Rogers: What would be your takeaway for people in your position now, what would you advise them to do? You know, at this nearest stage to perhaps, care full-time?
Col Blake: I think being involved with what they like. You know, if you can pick what they like doing, keep that going. I mean, we walk a lot. Shirley’s still swimming, but I wouldn't trust her now without the ‘noodle’. And a lot of times she doesn't want to get in . And they lose so much confidence. That's, I found that that was another thing that, you know, years ago, I could just put Shirley in the water and off we’d go. But now it's, I've got to walk her down the steps, have the noodle in position, and then “I'll go, I'll go, I'll go,” you know, it's a sort of little push to get her in there. Once she's in, she's fine.
Hamish Macdonald: Yeah.
Col Blake: But I feel that from an exercise point of view and all that, you know, she's got a crook knee, so she can't walk as much as she used to. She's done at least 25 City to Surfs. You know, she used to watch — bring the kids to watch me — and then she started doing it with me, and all that sort of thing.
Jim Rogers: Freaking impressive.
Col Blake: Yeah, so that I keep it, I try and just keep the involvement going. It'd be so much easier just to sit back and let it happen. I've had a couple of specialists say to me that Shirley wouldn't be where she is now without you being there to keep things going, you know?
Jim Rogers: It sounds like a big part of what's helping Shirley is that she's still dancing.
Col Blake: We've always jived and, I mean, that's a meeting at a dance, you know?
Jim Rogers: So it's always been a passion?
Col Blake: Yeah. And when Shirley and I jive —
Jim Rogers: She got it.
Col Blake: — there is no dementia.
Hamish Macdonald: Interesting.
Col Blake: There really is no dementia — she will move to the music, not as good as she used to, and I don't as good as I used to, but she moves to it, you know, and we still do it. I mean, we don't — someone said, go and do dance class, but that won’t work — that’s just not — but we do choir as well now, and that's brilliant. I just love choir and Shirley loves it. You know, you put words in front of them. You start the music, of our vintage. Off we go. And Robert, who brings a keyboard, he's fabulous. And he — every week — he plays a jive song for us. “Col and Shirley, up you get.”
Hamish Macdonald: Your turn.
Col Blake: And we jive every week.
[Music plays]
Hamish Macdonald: What advice do you give to other people that find themselves in a situation like yours?
Col Blake: Be patient, very patient, and be positive. My two Ps. I mean, that's — you've got to be: stay positive. It's so easy to slip into it and say: “Oh, this is —." And I think if with care, it's, it is the easy way out in a sense. I could see why a lot of couples who haven't got a strong relationship would split up, for sure, because, you know, it'd be so much easier. “Well, you go to care, I'll go my way.” I feel that. You know, that's, yeah — because we had this strong relationship, I'm more than willing to give back.
Hamish Macdonald: Col, thank you very much for talking to us and obviously well done on the amazing support and care that you're giving to Shirley.
Col Blake: Yeah, oh it's been a pleasure.
[Music plays]
Hamish Macdonald: Wow, there's a lot there. I can only imagine what it's like for a marriage to change the way that Col's did, so rapidly. But of course, not all carer relationships are involving married couples. For many people, including me, the relationship that changes is one between a parent and a child.
Jim Rogers: Yeah, I'm seeing that happen in my life, a little bit. My own kids, who are adults now, they're always trying to help me out with little things, here and there. They're always checking on how I'm feeling. And it's a bit strange, to be honest, because that used to be my job — to them.
Hamish Macdonald: Yeah, still is a little bit. That change can obviously be pretty destabilising for everyone, but it's further complicated by different cultural needs and norms.
[Music plays]
Speaker 1: Salaam Alaikum. Salaam ki Fauci.
Hamish Macdonald: This is Sanna , a Muslim woman who managed the care for her mother, who lived with Alzheimer's. The thing Sanna most remembers about her mum is her strength.
Sanna: Amazing mum. Recently passed away, three months ago — almost three months ago. She will always be remembered as a very strong woman. She went through a lot, you know, in her life.
Hamish Macdonald: What is it about her childhood, her beginnings, that you think made her so tough and so resilient? Where did she start life? Just paint a picture of it.
Sanna: Her life was quite hard, because it was a wartime zone in Lebanon. And the thing is, that my dad had to come to Australia, in order for us to live. So he'll send the money over, so that we can live comfortably, because there was no work, nothing. And so, she had to take care of four girls and a little boy. She had to be quite strong because of the war. She had to protect us, because it was very wild. I mean, I can remember, even at three years old, four years old, people trying to get into our home.
Hamish Macdonald: This is what? The Lebanese civil war is it?
Sanna: Yeah, yeah. And it was quite, you know, scary, and the bombs — we can hear them outside. Her main goal was to protect us, like I can, you could feel that with my mum's protection, and especially girls. You know what I mean? In our culture, like protecting the girls is like, the most important thing.
Hamish Macdonald: So how did your mum do that when you were a kid and you were growing up during the Lebanese civil war? What did your mum do to protect you?
Sanna: I remember waking up and she would always be awake. Do you know what I mean? Like she would always be on the lookout.
Jim Rogers: On guard.
Sanna: Yeah. And so that's that kind of protective thing she had. I can remember that always.
Hamish Macdonald: I guess there's a perception in the west —
Sanna: Yeah.
Hamish Macdonald: — of Muslim women being, ah, maybe suppressed, not very strong.
Sanna: Ah! Oh!
Hamish Macdonald: But I've spent a lot of time living and working in the Middle East and I have a slightly different picture.
Sanna: Of course! Stereotype of us is just completely different.
Hamish Macdonald: So paint us a picture of how tough your mum was.
Sanna: She was strict, but like I said to you, it’s to protect us, you know: be strong-minded, make sure no-one forces you to do anything, right? So those kind of values was in our upbringing. You know, we're tough women. Like, we're tough, but we're also gentle. That's the thing that she taught us, so, like, we can get what we want, but in a respectable way. Unfortunately, she had a hard time in Lebanon, but she came to Australia and also had a hard time, you know, the discrimination that we went through — as a childhood — to this day, we're still having it, you know what I mean. So that made her even more stronger and more stricter with us. So I don't remember our mum being affectionate, as in, you know, lovey-dovey, you know, and hugging and, you know. She wasn't like that.
Hamish Macdonald: So tell me about what happened once your mum was diagnosed with dementia. Whose job was it to look after your mum?
Sanna: Well at that time, before she had the dementia, she was living with my brother. As soon as we're, the diagnosis is set: family meeting. All right, you got her on Monday. You got her Tuesday. You got her — you know, like, we just spread the job of who's taking care of our —.
Jim Rogers: It’s very internalised, isn’t it?
Sanna: Yes.
Jim Rogers: It’s like it becomes just your problem.
Sanna: That’s right.
Jim Rogers: You tend to push away any external support.
Sanna: We didn't even know there's external. We didn't — some, I mean, I'm talking to the community — they didn't even know that we can access these supports. And that's shocking to me.
Hamish Macdonald: So how did it work? Your mum was going from one family member to the next?
Sanna: Yes, so we were eight, obviously. So she would go from one house to another. So can you imagine?
Jim Rogers: The trauma for somebody with dementia.
Sanna: “Where's the bathroom?” “Ah: it's on the left.” So can you imagine how —
Jim Rogers: No.
Sanna: — how dementia accelerated?
Jim Rogers: No, even for me now, it's just, to be moving around too much is a little bit overwhelming. So for her to be in a different bathroom, different bedroom —
Sanna: Exactly.
Jim Rogers: — would have been very draining for her.
Sanna: She didn't have her own room, obviously. Certain houses had the facility for her own room, but others, no, she had to share with grandkids.
Hamish Macdonald: Can you describe what impact that had on her? All that moving from one family member to the next?
Sanna: Oh, it accelerated her dementia. She was going crazy, literally, because she'll suddenly go loud and violent. You know what I mean? And we wouldn't know, like: “What did we do? What did we do?”
Jim Rogers: Something triggered her.
Sanna: Something triggered her. And obviously, like, when we look at, I mean, my house has got bric-a-brac everywhere, and it's got the cultural, different kind of patterns everywhere. So obviously she was not in the right environment.
Hamish Macdonald: What's the issue with the patterns and the different shapes?
Sanna: Already, her brain is in turmoil, right? She's trying to — the pattern of the, you know, the Turkish carpet, right? Struggling to try to put the patterns in the right place. You know what I mean?
Hamish Macdonald: That would have been mentally difficult for her.
Sanna: Mentally difficult to her, but we weren't seeing that. We were seeing her getting angrier and getting violent.
Jim Rogers: Because you don't understand what's behind the frustration.
Sanna: Because we didn't know what's behind — of her, yeah. Until I got that training and I said: “Oh, we should get rid of the renter from her home. Clear out the whole house. No furniture except simple — like a bed, you know, in her room — and a simple lounge. That's it, you know, very simple stuff. And put her in.” The day my mum walked into her home it was like she came back. Like, literally, my mum came back.
Jim Rogers: Sort of a sigh of relief.
Sanna: Yeah.
Jim Rogers: Like: “Ah”.
Sanna: And then she worked — and she goes: “Where's my birds?” Like she knew, because she's got rosella birds. All our life, she was raising them, basically. She was in the — they’re — in the wild birds.
Jim Rogers: What are rosella birds?
Sanna: Rosellas: wild birds would come and feed.
Hamish Macdonald: You know the birds on the biscuit tins?
Jim and Sanna: Yeah.
Sanna: They’re Arnott’s.
Hamish Macdonald: That's a rosella.
Jim Rogers: Okay!
[Laughter]
Sanna: Yeah.
Jim Rogers: That’s my new learn for the day.
Sanna: She was like — and they came, like I'm not kidding you, it was a beautiful sight. And she — they just came and sat on her hand.
Jim Rogers: It’s like they knew.
Sanna: They knew.
Jim Rogers: That she’s back home.
Sanna: I'm not kidding. It was just so beautiful. And I — and she goes, this is my — she knew where the bathroom is, straight away. And this is, like, a couple of years she hasn't been there.
Hamish Macdonald: So what had happened to your relationship with your mum during this time, because I know you're married to a Palestinian.
Sanna: Yes. Yes.
Hamish Macdonald: And the Arabic accents are a little bit different. The Lebanese accent — has, is pretty distinct — you use some different words. Is it “surefi mafi”?
Sanna: Yeah. Like even the word “ah”.
Hamish Macdonald: Ah.
Sanna: You know? In Lebanese, we'll say “eh”.
Hamish Macdonald: Yeah.
Sanna: Instead of, you know, you know, “eh”. Right, yeah. I'll say “ah”. In Palestinian, would say “ah”.
Hamish Macdonald: So what did this do for your mum?
Sanna: She literally deleted me as her daughter. You know? Like every time it was my turn to come to my mum, she goes: “You're not my daughter.” You know? “And who are you?” And “go away”, you know? And it was really hard. That's like —
Jim Rogers: That would have been heartbreaking for you.
Sanna: Oh, it was. Because, you see, I can — we share videos constantly of our mum, and I can see how she talks to my sisters and brothers.
Jim Rogers: Warm.
Sanna: Yeah, oh look, sometimes there was not ‘warm’. She's still a tough woman. I won't go into detail, but there was still that love there. There was still that affection, you know? She would allow them to hug them. You know, I didn't get that.
Hamish Macdonald: You weren't allowed to hug your mum?
Sanna: No. She wouldn't let me hug her. She wouldn't let me kiss her.
Jim Rogers: Is that because she felt you were a stranger?
Sanna: Yes. Yes.
Jim Rogers: She just wouldn't accept that you were part of the family?
Sanna: Yes.
Jim Rogers: Because of that change in dialect?
Sanna: The dialect.
Hamish Macdonald: So you were trying to do things like change her clothes, feed your mum.
Sanna: Yes, yes, with the fight all the time.
Hamish Macdonald: Yeah, so how did she react?
Sanna: I’d come out with bruises every time I come from my mum, because she didn't — not like me to touch her.
Jim Rogers: It must be very confronting when you get to that stage where you have to be in control and start caring to the degree where you're bathing, feeding.
Sanna: That’s right.
Jim Rogers: Especially if there's resistance. That must be very hard to go through.
Sanna: Very hard. It was very depressing to see that. You see, because my mindset is, what can I do for my mum? Because this is the time where we can get all these rewards for being good to our parents. This is payback. You know what I mean? Like we feel that we say — it's, this is time to take care of her, because she took care of us. And that concept of our culture, saying it's your responsibility when they grow up, right? But Islamically, you know, the first word in our Koran is ‘iqra’ , which means ‘read’, right? Which means knowledge. So we're supposed to educate ourselves with the condition that we're dealing with. I mean, I don't know anything about dementia.
Jim Rogers: No, it’s like the mystery disease that's behind the curtain.
Sanna: Yes, yeah.
Jim Rogers: This is why this podcast is so great, because —
Sanna: Exactly.
Jim Rogers: It really does give a lot of people insight.
Sanna: So when someone says cancer, everyone knows. You know, they'll go and look up “oh, which cancer does my mum have?” and they'll get an idea.
Jim Rogers: It's really well spoken of .
Sanna: As soon as “dementia”, they won't seek it. They'll say: “Oh yeah, it's just part of growing old.”
Jim Rogers: It's so stigmatised —
Sanna: Yeah.
Jim Rogers: — still, isn't it?
Sanna: It’s considered normal.
Hamish Macdonald: So tell me what you did about that, because you've mentioned going to a workshop.
Sanna: Yeah.
Hamish Macdonald: What was it?
Sanna: Oh that was like —
Hamish Macdonald: And what did you learn? And what difference did that make?
Sanna: That was, like, the most amazing experience I've had and that was three years before she died. So three years previously, was those three years where I didn't have my mum, right? She didn't acknowledge me. I was like, taking care of her from a distant kind of, you know — she'll have her moments, don't get me wrong, but it was not enough, you know what I mean. So I went to — I found a workshop in Lakemba. So it's all supposed to be for the Muslim community and I was the only one that turned up.
Hamish Macdonald: Right.
Sanna: Yeah.
Hamish Macdonald: This was a Dementia Australia workshop?
Sanna: Dementia Australia, Friends United with Dr Diana. So I had her all to myself. So I said to her: “Ah, listen, Diana, look, I've got this issue with my mum. I was hoping you can give me some tips.” She goes: “Look, think of a way that your mum remembers you by when you were little, because every person in your family has said, greet her in a different way for her to recognise that person on a constant level.”
Hamish Macdonald: So what did you do?
Sanna: So, I love dancing. So when I was little, she'd always put, you know, music was always there, in the background, in there. So she'll put the music on and she'll say: “Dance.” So I'll dance.
Hamish Macdonald: So this is when you were a little girl?
Sanna: When I was little. When I was little.
Jim Rogers: How old? How old would you have been?
Sanna: I was dancing since I was one. So I love dancing. And she — I thought that's the only connection that she knows that about me, out of all of, you know, my family, I love dancing, and she knows that. So I said: “Okay, we'll try it.” So I put the music. I chose an older song that she would remember in those times.
Hamish Macdonald: Okay.
Sanna: And I walked in, dancing to her, and she and she looked up straightaway, and she said: “Sana?”
Jim Rogers: Oh.
Sanna: Yeah. It was like: “She said my name!”
Jim Rogers: Wow. It’s as though they [makes clicking sound] found the information out.
Sanna: Yeah. It’s like “click, click, click”. And she said: “Sanna!” And she actually got emotional. She actually said: “I love you.” And she called me over.
Jim Rogers: As though you've been somewhere for a while.
Sanna: Yes, it's as if that: “Where have you been? I haven’t seen you in a while.”
Jim Rogers: How lovely. What a massive breakthrough.
Sanna: I know. And she hugged me, and she kissed me, and she said: “Allah XXXX.” And you know, the words of Islamic prayer is so important to us, and I never had that for a long time.
Hamish Macdonald: What did having or re-establishing that connection with your mum mean for you?
Sanna: I actually got my mum back. You know, I was able to take care of her and her, knowing me, you know — not a stranger, like: “Oh, someone's coming in.” It reconnected me with my mum, you know, like I'm now a daughter again. I'm not a stranger. Do you know what I mean? I'm actually someone that's important to her now and every time she'll lose it and forget me. Straightaway, the music is on. Straightaway, I'll dance and: “Oh, Sanna!”
[Music plays]
Jim Rogers: There's such a feeling of reward when it is a loved one.
Sanna: Yeah.
Jim Rogers: And when that barrier is there, and you can't get to that loved one because they don't know it's you.
Sanna: Exactly.
Jim Rogers: It changes the dynamic.
Sanna: A hundred per cent.
Jim Rogers: But to actually get her back.
Sanna: Yeah.
Jim Rogers: And that's why I think so many people don't realise going to somewhere like Dementia Australia, to get educated about these tips —
Sanna: Yeah.
Jim Rogers: And things you can instill in the way that you care.
Sanna: That’s right.
Jim Rogers: Makes so much difference.
Sanna: I know. A small tip!
Jim Rogers: You're a living example of that.
Sanna: Yeah, it was just a small tip that she gave me: worked wonders, especially even the colours. So every time I went to her house, I would only be in plain colours, so she'll — I wouldn't have those days where she'll scream and ra , you know, like she'll get loud — and talking, talking, talking, a hundred —. No, I'd have a very calm time with my mum. I knew what was happening, so I made sure that there's no clothes that was patterned, anything that's in the house, we actually cleared everything up, because I told my sisters and that. So we did everything they recommended, for her home to be, you know, clutter-free and all that.
[Music plays]
Hamish Macdonald: You've talked about this a little bit today, but when I first met you, when we launched the first season of Hold the Moment, you came and chatted to me, and you said: “Look, it's really important that you explore what this means for different cultures.”
Sanna: Yeah.
Hamish Macdonald: “Different backgrounds.”
Sanna: That's right.
Hamish Macdonald: And they say that no one dementia story or journey is the same as any other. But why is it so important that we think about and talk about the different ways that different cultures are maybe coming at a challenge like this?
Sanna: Because different cultures — even like Chinese and the Vietnamese and and the Greeks — like they, are adamant at not getting outside help.
Jim Rogers: Why is that resistance there?
Sanna: I still bring it back to — they grew up saying: “We took care of you when we were little. It's now your time to take care of us, when we're old.” Do you know what I mean? I think that is very strong to the culture in all of those cultures. “When we were raising you, we didn't go and get any help.” But then hang on a minute, they did have help you know, they had the aunties, they had the grandmothers. We had that social interaction there.
Jim Rogers: Very strong network.
Sanna: We had those, yeah, we had a lot of family, and that is part of the support.
Hamish and Sanna: [speaks in Arabic]
Sanna: Thank you. [speaks in Arabic]
Jim Rogers: Thank you so much.
Sanna: Thank you so much.
Jim Rogers: You’re a pleasure to listen to.
Sanna: Thank you.
Hamish Macdonald: Jim, in Arabic: “[speaks in Arabic]”
Jim Rogers: [Repeats the words in Arabic]
Sanna: [Repeats the words in Arabic]
[Laughter]
Sanna: Thank you so much; I appreciate it.
Hamish Macdonald: Thanks to both Sanna and Col for sharing their stories with us.
Jim Rogers: If you want to know more about how to manage your changing relationship as a carer, we've got a bonus episode of the podcast for you.
Hamish Macdonald: That's right. Check your podcast feed for our helpline episode about changing relationships. You'll hear more from Kristin from the Dementia Australia helpline .
Jim Rogers: Kristin will give you some handy tips and if you want more info you can call the helpline yourself on 1800 100 500. Hold the Moment is a podcast from Dementia Australia, produced by Deadset Studios. You can find more episodes and resources on Dementia Australia's website, dementia.org.au. The show is hosted by me, Jim Rogers.
Hamish Macdonald: And by me, Hamish Macdonald. The executive producers are Kellie Riordan and Gia Moylan. The producers are Madeleine Hawcroft and Liam Riordan. Production manager is Ann Chesterman. Sound designed by Ryan Pemberton. A special thanks to the whole team at Dementia Australia and to everyone who shared their stories on this podcast.
[END of recorded material]
About the episode
How partner, parent and family relationships can change. Whether it’s your parent, your sibling or your romantic partner, caring for someone living with dementia will inevitably change the nature of your relationship. But if you learn how to adapt, your new relationship can be as fulfilling as it’s always been.
Watch the interview
In this video. we go one on one with our podcast guests
Transcript
TBC
Transcript
[BEGINNING OF RECORDED MATERIAL]
Sanna: I actually got my mum back, you know, I was able to take care of her and her knowing me, you know, not a stranger, like, "Oh, someone's coming in." It reconnected me with my mum. I'm actually someone that's important to her now.
Hamish: As-salamu alaykum
Sanna: Wa alaykumu s-salam
Hamish: Kayfa ḥāluk
Sanna: Alhamdulillah
Hamish: Alhamdulillah
Hamish: Ok.
Sanna: Thank you.
Hamish: So, tell us about your mum Sanna?
Sanna: Amazing mum. Recently passed away three months ago, almost three months ago. Wow, time flies, yeah… Umm, she'll always be remembered as a very strong woman. She went through a lot, you know, in her life and I think maybe that's how strong she is, that she stayed 12 years with dementia, fighting it, you know? Yeah, she was a beautiful mum.
Hamish: What is it about her childhood, her beginnings, that you think made her so tough and so resilient? Where did she start life? Just paint a picture of it.
Sanna: Her life was quite hard because it was a wartime zone in Lebanon. So, and the thing is that my dad had to come to Australia in order for us to live. So, when her borders came out, he flew over, and so, he'll send the money over so that we can live comfortably in, because there was no work, nothing and so she had to take care of four girls and a little boy. She had to be quite strong because of the war. She had to protect us because it was very wild. I mean, I can remember even at three years old, four years old, people trying to get into our home.
Hamish: This is what the Lebanese civil war isn’t it?
Sanna: Yeah, yeah, and it was quite, you know, scary and the bombs, we can hear them outside, and we had to, you know, try and, well, her main goal was to protect us. Like I can, you could feel that with my mum's protection and especially girls, you know what I mean, in our culture, like, protecting the girls is like the most important thing, you know.
Hamish: So how did your mum do that when you were a kid and you were growing up during the Lebanese civil war. What did your mum do to protect you?
Sanna: I remember waking up and she would always be awake. Do you know what I mean? Like, she would always be on the lookout.
Jim: On guard.
Sanna: Yeah, when we went to get our passports on the ship to go to Cyprus, the boat was like very, very scary and my mum, like I said, every time I'd open my eyes, my mum would be awake, you know. And she'd, her hand would be on us like this, you know, she would not let go of us. Like, she would literally tie everything to us just so that she, you know, that she's protected us. And so, that's that kind of protective thing she had, I can remember that always.
Hamish: I guess there's a perception in the West of Muslim women being, maybe suppressed, not very strong, but I've spent a lot of time living and working in the Middle East and I have a slightly different...
Sanna: Of course.
Hamish: … picture.
Sanna: Every stereotype of us is just completely different.
Hamish: So, paint us a picture of how tough your mum was.
Sanna: She was strict, but like I said to you, it's to protect us, you know. Be strong minded, make sure no one forces you to do anything, right. So those kind of values were in our upbringing, you know, we're, we're tough women, like, we're tough, but we're also gentle, that's the thing that she taught us. So, like, we can get what we want, but in a respectable way. Unfortunately, she had a hard time in Lebanon, but she came to Australia and also had a hard time, you know, the discrimination that we went through as a childhood to this day, we're still having it, you know what I mean? So, that made her even more stronger and more stricter with us so I don't remember our mum being affectionate as in, you know, lovely-dovey, you know, and hugging and, you know, she wasn't like that.
Hamish: So, tell me about what happened once your mum was diagnosed with dementia. Whose job was it to look after your mum?
Sanna: Well, at the time, before she had the dementia, she was living with my brother and my dad, who also had dementia and he really recently passed away and then we noticed my mum started doing this, repeating the same thing. So, it usually started with the repetition of the words, and that's when we knew. And then as soon as the diagnosis is set, family meeting; all right, you got her on Monday, you got to her Tuesday, you got her Thursday you know, like we just spread the job of who's taking care of her.
Jim: It's very internalised isn't in? It's like it becomes just your problem.
Sanna: That's right.
Jim: You tend to push away any external support.
Sanna: We didn't even know this external support, we didn't, some, I mean, I'm talking to the community, they didn't even know that we can access these supports and that's shocking to me.
Hamish: So how did it work? Your mum was going from one family member to the next?
Sanna: Yes. So, we were eight obviously, so she would go from one house to another, so can you imagine...
Jim: The trauma for her…
Sanna: Yeah
Jim: … for somebody with Dementia.
Sanna: Oh! Where’s the bathroom? Oh, but I was… it’s on the left.
Jim: I couldn't imagine.
Sanna: Yeah, so can you imagine how her dementia accelerated.
Jim: No, even for me now, it's just to be moving around too much is a little bit overwhelming. So, for her to be in a different bathroom, different bedroom would have been very draining.
Sanna: She didn't have her room, obviously certain houses had the facility for her own room, but others, no. She had to share with grandkids. Can you imagine that kind of...
Jim: That woman's been through so much.
Sanna: Yeah, so like we feel guilty now. I feel guilty now that we know this training and that's why I'm really passionate to empower my community to look, seek these services early on.
Hamish: Can you describe what impact that had on her? All that moving from one family member to the next?
Sanna: Oh, accelerated her dementia, from my training, I know what's, what was happening. She was going crazy, literally because, she'll suddenly go loud and violent.
Jim: Yeah.
Sanna: You know what I mean? And we wouldn't know, like, "What did we do? What did we do?"
Jim: Something triggered her.
Sanna: Something triggered her and obviously like when we look at, I mean, my house has got some bric-a-brac everywhere and it's got the cultural different kind of patterns everywhere so obviously she was not in the right environment, and she was living that environment.
Hamish: Explain that. What the issue with the patterns and the different shapes and everything?
Sanna: Because in dementia, like already her brain is in turmoil, right? And then you got, she's trying to, the pattern of the, you know, the Turkish carpet, right. That would've been, like, so struggling to try to put the patterns in the right place, you know what I mean?
Hamish: That would've been mentally difficult.
Sanna: Mentally difficult to her, but we weren't seeing that, we were seeing her getting angrier and getting violent.
Jim: Because you don't understand what's behind…
Sanna: Because we didn't know what's behind …
Jim: … her frustration
b: Yeah, until I got that training and I said, "Ah, we should get rid of the renter from her home. Clear out the whole house, no furniture except simple like a bed, you know, in her room and a simple lounge.” That's it, you know, very simple stuff and put her in. The day my mum walked into her home it was like, she came back, like literally, my mum came back.
Jim: Sort of a sigh of relief.
Sanna: Yeah.
Jim: Like, “Aah”.
Sanna: And then she went and she goes, "Where's my birds?" Like she knew, because she's got Rosella birds. All our life we were, she was racing them basically. She was in the, they were in… the wild birds.
Jim: What are Rosella birds?
Sanna: Rosella's, wild birds would come and feed...
Hamish: You know the birds on the biscuit tins?
Sanna: Yeah, the Arnotts.
Jim: Yeah.
Hamish: That's a Rosella.
Jim: Okay.
Sanna: Yeah.
Jim: That's my new learn for the day.
Sanna: She was like, and they came like, I'm not kidding you, it was the beautiful sight, and she said they just came and sat on her hands.
Jim: It's like they knew, she's back home.
Sanna: They knew. Well, I'm not kidding you, it was just so beautiful and I, and she goes “This is my house”. And she knew where the bathroom is straight away and this is like a couple of years she hasn't been there.
Hamish: So, what had happened to your relationship with your mum during this time because I know you are married to a Palestinian.
Sanna: Yes, yes.
Hamish: And the Arabic accents are a little bit different; the Lebanese accent has… is pretty distinct. You use some different words. Is it "Shoufi mafi?"
Sanna: Yeah. I like, even the word ‘ah’, you know, in Lebanese we’ll say, ‘ēh’.
Hamish: Yeah.
Sanna: Instead of, you know, like ‘ēh’ right, yeah, you know, I'll say, ‘ah’, in Palestinian they would say, ‘ah’.
Hamish: So what did this do for your mum?
Sanna: She literally deleted me as her daughter. You know, like every time it was my turn to come to my mum, she goes, “You’re not my daughter,” you know, and “You’re not… who are you? Go away.” you know? And it was really hard, that's like...
Jim: That would've been heartbreaking for you.
Sanna: Oh, it was, because you see, I can, we share videos constantly of our mum, and I can see how she talks to my sisters and brothers.
Jim: Warm.
Sanna: Yeah, I look, sometimes there was not warm. She's still a tough woman and I won't go into detail, but there was still that affection, you know, she would allow them to hug them. You know? I didn't get that.
Hamish: You weren't allowed to hug your mum?
Sanna: No, she wouldn't let me hug her. She wouldn't let me kiss her.
Hamish: So, you were trying to do things, like bathe her, change her clothes…
Sanna: Yes.
Hamish: … feed your mum.
Sanna: Yes, with the fight, all the time.
Hamish: Yeah, so how did she react?
Sanna: I'd come out with bruises every time I come from my mum, because she didn't not like me to touch her.
Jim: It must be very confronting when you get to that stage where you have to be in control and start caring to the degree where you're bathing, feeding.
Sanna: That's right.
Jim: Especially if there's resistance, that must be very hard to go through.
Sanna: Very, very hard. It was, it was very depressing to see that, you see, because my intent is, "What can I do for my mum?" Because this is the time where we can get all these rewards for being good to our parents. This is payback, you know what I mean? Like, we feel that, we say it's, this is time to take care of her because she took care of us and that concept of “our culture” saying it's your responsibility when they grow up, right? but, Islamically, is “No, seek…” you know, the first word in our Koran is 'Iqra' which means ‘read’, right, which means knowledge so we're supposed to educate ourselves with the condition that we're dealing with. I mean, I don't know anything about dementia.
Jim: Now, this is, it's like the mystery disease that's behind the curtain.
Sanna: Yes.
Jim: This is why this podcast is so great, because…
Sanna: Exactly.
Jim: … it really does give a lot of people insight.
Sanna: So, when someone says 'cancer', everyone knows, you know, they'll go and look up, "Oh, which cancer does my mum have?" And they'll get an idea but as soon as dementia, they won't seek it. They'll say, "Oh yeah, it's just part of growing old."
Jim: It's so stigmatized.
Sanna: Still.
Jim: Isn't it? You know, because…
Sanna: I know, exactly.
Jim: It's considered as, you know...
Sanna: It's normal, it's considered normal.
Hamish: So, tell me what you did about that because you've mentioned going to a workshop. What was it?
Sanna: Yeah, oh, that was like...
Hamish: What did you learn and what difference did that make?
Sanna: That was like the most amazing experience I've had and that was three years before she died. So, three years previously was those three years where I didn't have my mum, right; she didn't acknowledge me.
Hamish: She wasn't dealing with you as her daughter?
Sanna: I was like taking care of her from a distant kind of, you know, she'll have her moments, don't get me wrong, but it was not enough.
Jim: Uh-huh.
Sanna: Do you know what I mean? So, I went to, I found a workshop in Lakemba. So, it's all supposed to be for the Muslim community, and I was the only one that turned up.
Hamish: Right.
Sanna: Yep.
Hamish: This was a Dementia Australia workshop?
Sanna: Dementia Australia Friends United with Dr. Diana and so I had her all to myself. So, I said to her, "Ah, listen Diana, look, I've got this issue with my mum, I was hoping you can give me some tips." And I go, I said, “She can’t, I can’t even greet her, you know.” She goes, "Look, think of a way that your mum remembers you by when you were little because every person in your family has said greet her in a different way for her to recognise that person on a constant level” and that's where I knew that the carer always greeted her in the same way.
Hamish: So, what did you do?
Sanna: So, actually, I love dancing, so when I was little, she'd always put, you know, music was always there in the background in there, so she'll put the music on and she'll say "dance", so I'll dance for her.
Hamish: This is when you were little?
Sanna: When I was little.
Jim: How old? How old would you have been?
Sanna: Ah, I was dancing since I was one. So, I love dancing and she, I thought that's the only connection that she knows that about me out of all of, you know, my family. I love dancing and she knows that, so I said, "Okay, we'll try it." So, I put the music on, I chose an older song that she would remember in those times.
Hamish: Okay.
Sanna: And I walked in dancing to her, and she, and she looked up straight away, and she said, "Sanna?" and she, yeah.
Jim: Aww.
Sanna: Yeah, it was like "She said my name!"
Jim: Wow, it's as though they “ch, ch, ch, ch…
Sanna: Yeah, it's like click, click, yeah.
Jim: Found information out.
Sanna: And she said "Sanna," and she actually got emotional. She actually said, "I love you." Like, straight away she goes "Habibi! Darling!" And she's called me over...
Jim: As though you've been somewhere for a while.
Sanna: Yes, it's as if that, "Where have you been? I haven’t seen you in a while."
Jim: What a massive breakthrough.
Sanna: Yeah, I know, and she hugged me and she kissed me, and she said, "Alhamdulillah", you know the words of the Islamic Dua, you know. Prayer, is so important to us and I never had that for a long time.
Hamish: What did having, or reestablishing that connection with your mum mean for you?
Sanna: I actually got my mum back, you know, I was able to take care of her and her knowing me, you know, not a stranger, like, "Oh, someone's coming in." It reconnected me with my mum, you know, like, I'm now a daughter again, I'm not a stranger. Do you know what I mean? I'm actually someone that's important to her now.
Jim: There's such a feeling of reward when it is a loved one and when that barrier's there and you can't get to that loved one because they don't know it's you.
Sanna: Exactly.
Jim: It changes the dynamic, but to actually get her back.
Sanna: Yeah.
Jim: And that's why I think so many people don't realise going to somewhere like Dementia Australia to get educated about these tips and things you can instil in the way that you care.
Sanna: That's right.
Jim: Makes so much difference.
Sanna: I know, a small tip.
Jim: You're a living example of that.
Sanna: Yeah. It was just a small tip that she gave me, worked wonders and especially even the colours. So, every time I went to her house, I would only be in plain colours. So, she'll, I wouldn't have those days where she'll scream and rant you know, like she'll get loud and talking, talking, talking, a hundred. No, I'd have a very calm time with my mum. I knew what was happening. So, I now made sure that there's no clothes that was patterned, the mat, that was anything that's in the house. We actually cleared everything up because I told my sisters so we did everything they recommended for her home to be, you know, clutter-free and all that.
Jim: Calm.
Sanna: So, it was a calming, where we had her calming, whenever… let's go to the backyard, that's her area.
Hamish: You've talked about this a little bit today but when I first met you, when we launched the first season of 'Hold the Moment' you came and chatted to me and you said, “Look, it's really important that you explore what this means for different cultures, different backgrounds”.
Sanna: That's right.
Hamish: And they say that no one dementia story or journey is the same as any other but why is it so important that we think about and talk about the different ways that different cultures are maybe coming at a challenge like this.
Sanna: Because the different cultures, even like Chinese and the Vietnamese and the Greeks. Like, I’ve got my, the chemist, he’s, um, Greek and they're adamant at not getting outside to help the patient.
Jim: Why is that resistance there?
Sanna: Because I still bring it back to, they grew up saying, "We took care of you when you were little, it's now your time to take care of us when you're, we're old." Do you know what I mean? I think that is very strong to their culture, in all of those cultures. When we were raising you, we didn't go and get any help but, and then hang on minute, they did have help you know, they had the aunties, they had the grandmothers, we had that social interaction there.
Jim: Very strong network.
Sanna: Yeah. We had a lot of family and that is part of the support.
Hamish: But do you have some regret that as a family, you hadn't learned all this stuff earlier because it was your mum lived with Dementia for 12 years, I think.
Sanna: Yeah, I think that last three or so that we...
Hamish: Yeah, so this happened really towards the end that you adapted?
Sanna: Yeah, I mean there's Carer Gateway has, as soon as you're diagnose basically, this, like a retreat, like that would have been amazing to be on that retreat where they take the dementia patient, and then they teach her or him. And then they take me and, and the carer, and they go, "Look, this is what you're, what's going to come up, look, prepare yourself" instead of like, having three years of...
Jim: Just be proactive.
Sanna: … not knowing where my mum is you know what I mean? And not acknowledging me. So, that's what I'm saying, that if we get early intervention earlier, it would be that journey would be so-not so stressful.
Hamish: You could have given your mum a better…
Sanna: For both.
Hamish: … a better existence.
Sanna: Yeah, for both of us, not just, you know, us. You know us, not just for the carer and her.
Hamish: Sanna, Shukran Jazilan.
Sanna: Thank you, Wa iyyak.
Jim: Thank you so much, you're a pleasure to listen to.
Sanna: Thank you.
Hamish: Jim, in Arabic, “Shukran”
Jim: Shukran.
Sanna: Shukran.
Jim: He knows all of this stuff.
Sanna: Thank you so much, I appreciate it.
Jim: Hold the moment is a podcast from Dementia Australia produced by Deadset Studios.
[Title Card: Hold the Moment
Call our National Dementia Helpline
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End of Title Card]
[END OF RECORDED MATERIAL]
Bonus episode
Transcript
[BEGINNING of recorded material]
Speakers: Jim Rogers, Helpline Kristin
Jim Rogers: Watching someone you love changing in front of your eyes is one of the hardest parts of being a carer, especially when it starts to change the dynamic of your relationship. Hi, I'm Jim Rogers, and this is Hold the Moment. This is Australia's only podcast just about dementia. It is brilliant. So listen to it. It really helps. For me, it was particularly tough seeing my role as a parent change a bit. Now my kids are checking in on me. If you're noticing a relationship shift or struggling to reconnect, we've got an entire episode on this very topic, so make sure you listen to that. In this bonus episode, Kristin, from the National Dementia Helpline, has some quick tips that might just smooth any tensions arising as your relationship changes.
Helpline Kristin: Relationships change over time. Following the diagnosis of a loved one with dementia, you might find that some of the things that you used to do are starting to change and that's true whether the person that's been diagnosed is your partner, a parent, a friend or someone else in the community. It might be that the person that's living with dementia used to be the one that paid the bills in the house or did the cooking or the mowing, and now you're starting to take on more of that role. Perhaps the person living with dementia was always the one that drove the family around and now that's something that you're taking more of a role on, as the carer. It's not always easy as these changes happen in your relationship, but there are some things that you can do to help keep that relationship and that connection going. There can also be a number of emotional changes that happen as your relationship changes. You might find that when you're talking to your loved one who's living with dementia, that it's difficult to talk about how you're feeling, or that they don't respond in the same way. You might find that there are different ways that you can connect. It might be something as easy as a hug to help them feel better when they're having a difficult time, instead of talking things through, like you might have done before. One of the tips that I like to give carers — especially if their loved one living with dementia is a parent — is to let them still be a parent. If you can, ask them for advice on things that you might have asked them for in the past, maybe something they were good at. You could ask them for a recipe or their thoughts if you're buying a new car. The advice that they give might be different than it was before, but they'll feel good that you value their input. Another area that you might be wondering about changes in your relationship, if your partner is the person that's been diagnosed with dementia, is intimacy. You might be wondering if that's something that you can still participate in, or how to do that. The most important thing is to talk with your partner, find out what they're comfortable with, what they're interested in, and if you have a laugh trying to figure out as it changes, that's okay, too. One of the things that I suggest is, have a think about what you like to do with your loved one. What did you used to do before? If you used to enjoy cooking and eating together, try a simple recipe, or try going out to a cafe. If music has always been part of your lives, turn on some of your favourite songs and try having a spin. As things change and it might become harder to connect with your loved one verbally, there are other things that you can do that include connecting with the senses.
Jim Rogers: If you have any questions about anything you've heard on this episode or want more personalised guidance while navigating your relationship changes, you can contact the National Dementia Helpline on 1800 100 500. Their trained advisors are available 24 hours a day, every day of the year. And you can speak to an advisor, just like Kristin, and for more resources, visit the Dementia Australia website.
[END of recorded material]
Reconnecting with a loved one as their dementia progresses
Understanding how to connect with your loved ones as their dementia diagnosis progresses.
About the podcast
Hold the Moment is an award-winning podcast from Dementia Australia full of real stories about life after a dementia diagnosis.
Season Two explores caring for someone living with dementia, covering grief, relationships, self-care and navigating support systems.
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The National Dementia Helpline
Free and confidential, the National Dementia Helpline, 1800 100 500, provides expert information, advice and support, 24 hours a day, seven days a week, 365 days a year. No issue too big, no question too small.