Hold on to relationships
Family, friendships and dating after a dementia diagnosis
Transcript
[BEGINNING OF RECORDED MATERIAL]
Kevyn: Hello, my name is Kevyn. I am a First Nations advocate with Dementia Australia. These lands on which we are meeting are many countries filled with languages, similar and different. 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.
[Music plays.]
Anthony: I met Kylie in Brisbane through a ‘walking football’ tournament. Kylie had flown over with a couple of her friends. And it wasn't a great venue, because the floor was very slippery. And I did my knee. But I found out since then, that Kylie had seen me that day and thought: “who's this madman, throwing himself around?”
Kylie: I'd been playing and he was on the sideline. He had crutches. He had been injured the day before in the tournament. And I just went up and said “hello”.
Anthony: And I said “hello”.
Kylie: Thought: “That’s an interesting guy”. We talked a little bit.
Anthony: And I just was smitten. I just got to get to know her; didn’t even contemplate about her living in Adelaide. And actually not at that point in time. But even when I did, it just didn't occur to me how that was going to work. I just wanted to get to know her. We just clicked, bonded. And she's just a beautiful person.
Kylie: Couple of weeks later, I came up to Brisbane to watch the Women's World Cup. And we're at a park and I asked Anthony about how he got involved with Dementia Australia. And that's when he told me about his diagnosis. And I pretty much thought: “holy shit”. [Laughter.] And I did think about researching it. I went back to Adelaide and we kept talking and that's when I decided actually, I'd rather get to know Anthony than get to know his diagnosis. Just kind of figured that, you know, we really liked each other. We had this connection. And you just, no-one knows what's going to happen in life. So let's just live now.
[Music plays.]
Jim: Meeting new people is hard at the best of times, but Anthony and Kylie's story is proof that you can forge new, loving relationships with dementia. I'm Jim . And this is Hold the Moment, a podcast from Dementia Australia, about life after diagnosis.
Hamish: And I'm Hamish Macdonald. And you're not wrong, Jim, life is already full of tricky relationship dynamics, not just romantic ones, with friends and with family too. And then when you add dementia into the mix, it can be pretty hard to navigate how things change between you and someone you love. So you're about to hear more of Anthony's story, who found friends - and love - after his diagnosis, as well as Dom’s story, trying to be a great daughter to her dad, as well as his carer.
Jim: Yeah, sure is a challenge. I know you've dealt with all of this Hamish, with your friends who’ve got dementia, as well as your dad. Are you ever worried about saying the wrong thing, or know how to be there for them now?
Hamish: Naaah, not really. [Jim laughs.] So let's go meet Anthony.
Anthony: My name is Anthony. I'm 67. And I've been diagnosed with young onset dementia. And I have got Alzheimer's version of that.
JimL So tell us a little bit about who was in your life before your diagnosis.
Anthony: Before my diagnosis, the most people in my life were people I worked with. I was in a relationship, which changed after my diagnosis.
Jim: When did you first sort of start to notice your symptoms?
Anthony: Well I actually didn't start to notice them myself. The person I was in that relationship with…
Jim: Aaah.
Anthony: …was noticing symptoms. So she kept pushing me to get checked, which did lead me to go to my GP, which then led to go on to a geriatrician, which led to go on to a neuropsychologist, which led to a diagnosis. Even though I was in that relationship, I was still on my own. I lived on my own. And I couldn't go to the hospital to see the doctor because we aren't allowed. So I got a phone call while I was in my unit by myself and my first reaction was: “I just received a death sentence.” It just totally shocked me. Well, because my partner was pushing me to see a doctor...
Jim: Yep.
Anthony: …the next step was I had to tell her. And it wasn't a warm, supportive reaction.
Jim: And she wasn't with you for that diagnosis? You were alone?
Anthony: I was alone in my unit. Yeah. So I felt isolated and very lonely then, particularly when I didn't get any support.
Jim: That's sad. And I believe you've got siblings. How did they handle the news of your diagnosis?
Anthony: Very well. It’s actually caused us to come closer.
Jim: Okay.
Anthony: I've got two brothers and a sister. And my next oldest brother, we talk twice a week, every week now. And just to catch up, just to say hello. And we never used to do that. To get the lack of support from the person I was with at the time and then have a different, different reaction from my brothers and sister. It was confusing, but the time was confusing anyway, because I didn't know what was going to happen to me. And I didn't know whether in 12 months’ time, I was going to be not driving, or whatever, what my future held.
Jim: Terrifying.
Anthony: Yes. Now it's different because I know more. But it was very confronting and confusing, because I didn't have the knowledge. I didn't really have any other support in the… where I live. So my only support was my siblings in another state. And kind of, that helped me a lot, the fact that they were supportive, because, you know, I was very lonely and very scared. And, you know, at times, like I said before, you may not want to be here. But through their support and their encouragement, that changed that.
Jim: And so your relationship sort of broke down from your diagnosis.
Anthony: Yes.
Jim: How was the dating scene, or what happened?
Anthony: Well, after that, after a period of time, I was still wanting someone in my life. And I tried the dating apps, and that, and met a few people. But I always feel I should be upfront and honest. I would not like to get into a relationship, and then six months down the track, tell that person. So I was always upfront and honest. And it was pretty well, 100 per cent, every time they walked away.
Jim: So that must have been so hard for you to find the right person or even tackle that.
Anthony: It was difficult, but I still felt I needed to stick to my core values and explain that. Because it's a very important piece of information. I mean, we all know that you can get into a relationship and who knows what can happen down the track. But this was a pre-diagnosis. So, I felt I really had to be honest. And it got to the stage where I just thought: “Well, this is not going to work. I'll just have to be content that I’ll be on my own.” But I went to my GP and she said, you know, “find some social company, some sport, perhaps, you know, try and start that way, to get yourself out of it and talk to more people”, which is not normally what I’d do before diagnosis either. So I said: “Right, I'll get on the internet” and Googled ‘sport for over 60s’. And by chance I came across ‘walking football’.
Jim: Tell us a little bit about what is ‘walking football’? How does it work?
Anthony: Well in Australia, it's probably more appropriate to call it ‘walking soccer’. And it's just like a small version, safer version of the running game of soccer. Right, firstly it's five or six people a side, and usually with goalkeepers, and each side will have a different colour bib. And usually there's a referee. The whistle goes [whistle sounds], kick off – it’s walking, so they can't run. So they have to pass it. You have opposition will walk up towards you, try and stop you passing; there's no tackling, as such. So they have to rely on you making a mistake or you pressuring them to do something with the ball. So therefore the technical skill is then to know where your other players are, and to pass the ball to them. And people walk at different speeds, but it's… can be very highly competitive, and it can be very social. We have all parts of that games and the ones I played is highly competitive. We played against a young side, they'd be in their early 20s. They play the running game. We challenged them to a game, they thought “haha, smash these”. Take the running out, take the physical part out and we smashed ‘em five-nil. So it just proves what the game is like – it levels the field for all abilities.
Jim: So was it nervewracking when you very first started this walking football and you went to meet new people? Did you feel anxious because of your dementia diagnosis?
Anthony: I didn't tell them for a while, and all. I felt really good, walking football, because I felt accepted. And particularly as I became a goalkeeper, and turns out, to be a good one. The best moment I ever had on walking football field was the day that someone gave me the nickname ‘The Wall’. There was a day you played for an hour and a half. I never let a goal in, no-one got past me. And the person that does our Facebook and that, thinking, “oh well, what can I write?” He’s just like a wall.” And that's where it came from: ‘The Wall’. And I was – I've never had a nickname, not a positive one. Particularly growing up, where I do. And I just: “Wow. That's amazing. I've got a nickname. That's awesome.” Which made me feel like I was somebody.
Jim: Yeah. Which is what you want, you know, particularly when you're new to the sport.
Anthony: Yeah. Yeah, so I was like, first-picked. As against, like in school when you're last, or never picked. And that's really, really helped me a lot to feel that, that belonging.
Jim: Yeah.
Anthony: And then after a while, once I got to know more people, I went on the committee. And then I told the committee. And then it sort of went from there, as I told a few other people. And they all accept a bit. A lot of them come and ask questions about it, which I thought was great. And most people said: “Oh, we wouldn't know you've had it.”
[Music plays.]
Jim: So not only has walking football brought new friendships to your life – it's also brought love. You met Kylie through the sport. So how did she react when she found out about your diagnosis?
Anthony: Kylie is a very special person. And she came back and said: “Well, the diagnosis doesn't define you as a person.” And wanted to get me, to know me more. Which was just amazing.
Jim: Tell me, what did that mean to you for her to react in that way?
Anthony: Oh, that was so special. That just made me feel so wonderful. And I thought well, maybe there's a chance. Totally unexpected. I was expecting the same…
Jim: Rejection.
Anthony: …rejection.
Anthony: And the fact that Kylie lived in another state would have made it very easy for her to do that.
Jim: So you were originally in Brisbane and Kylie was in Adelaide.
Anthony: Yes.
Jim: So in order to make this work, you have to think, okay, somehow I've got to get this, you know, easier for us to be in touch with each other.
Anthony: We’d fly to Melbourne or I’d fly to Adelaide or she’d fly to Brisbane. And that's just not sustainable long-term. So my lease was coming up. And I thought well, what do I do? “Ah, bugger it.” Sorry.
[Laughter.]
Jim: That’s OK.
Anthony: “I’ll move to Adelaide!” I can still do walking football there. I can still do work with Dementia Australia's advocacy. I can do everything in Adelaide, I can do in Brisbane.
Jim: And now you're based in Adelaide and the friends that you've got there that you're starting to get to know, the network you’re starting to get to know, how do they come across with the diagnosis that you've talked to them about? Or do they ask you questions? Are they interested? Are they curious? What sort of reaction have you had?
Anthony: A lot of them don't know.
Jim: Really?
Anthony: At this stage. There's a few that do. No one asks the question. So a lot of people don't know. And that's fine for the moment.
Jim: Yeah, I think it's a tricky one, isn't it? I mean, part of you, in my own experience, part of you doesn't really want to talk about it. Because, you know, it's a bit of a downer to talk about it. But then part of you sort of wants to acknowledge it. It's a fine line, isn't it, to sort of get it right?
Anthony: It is. And if people know, and they ask, I am more than willing to talk and educate them about what it's like and to try and help them understand because they might have other family, relatives that may get a diagnosis, or they may get one themselves. And that to me, is educational. It's to help them understand. But I only do that if they ask.
[Music plays.]
Dom: Hi, my name’s Dom. My Dad had vascular dementia. His name was Noel and he was a plumber, and a very warm, lovely personality. He had a great sense of humour. And yeah, I was his advocate, carer, entertainer, a looker-afterer and daughter.
[Laughter.]
Hamish: It sounds like you were really close to your dad.
Dom: Yeah.
Hamish: Tell me about him. What kind of guy was he?
Dom: Dad used to wear crisp cotton shirts. And they were always like colourful patterns. And he would always iron them beautifully and always be well-presented. He was warm, funny: he was pretty much everybody's friend. He - yeah, he was very social. And he loved fishing. He loved telling a joke. So we often read from ‘the dad joke book’ I brought up on visits to him. And he worked for himself his whole life. So I found him so inspiring as a kid, I ended up working for myself, just inspired by his ethics and you know, his working ethic. And yes, so he was my hero, my Dad, but he was also probably one of my most favourite people in the world.
Hamish: When you are that close to someone and you get, you see them receiving that diagnosis. What's it like for you? How did you take all of that?
Dom: Obviously, grief and shock straight up, I was already concerned that might be the case: that he may have dementia. But I had to really quickly, always be – feel like I was never looking sad in front of him, always in control and using humour throughout his illness, to make him feel confident that he was being cared for properly and to make him just not worry, and not see that we were worried about him. So it was that false bravado that we put on. I'd often, you know, put on the false face – do a lot of laughing, joking, confidence-stuff with him. And then I'd have to leave the room sometimes and have a bit of a cry. Yeah.
Jim: Because it's quite hard for children as well to cope with that, as I'm sure you would find Hamish with your dad and your siblings. It's a bit of a team effort really of what's gonna happen in the future.
Hamish: It’s scary because you feel like you're making decisions that are possibly quite consequential.
Dom: There is definitely role-reversal. And you notice that as the first thing. In the very first meeting when I took Dad to the geriatrician with Mum and we heard the diagnosis – he had a test in the meeting – and pretty much straight up the geriatrician said: “You have severe moderate vascular dementia”. And afterwards I talked with him, after the meeting and said: “How do you feel about this? Have you been worried about your cognitive thinking? Have you been concerned?” And he said: “Yes. Yes, I have.” And Mum and I told him he is not to worry any more. We are the ones that are going to take on all his responsibilities in life. He is just to enjoy himself and we’ll be his carers and make sure he lives a happy life.
Jim: It’s finding a fine line isn’t it, to really just find the right balance?
Dom: It is. Luckily he had that sense of – he loved ridiculous humour. [Laughter.] So I could hide behind that a little bit. Whether it was like, when I was helping him eat at lunchtime, so when he got quite bad, helping him eat food. I would often like just break out and play the spoons. Just do a random! [Laughter.]
Dom: And that would make him laugh and then I knew I was connecting with him. Sometimes we’d play music – his favourite music – to enliven him if he was sleeping and not eating.
Hamish: What kind of music?
Dom: He loved “Phantom of the Opera”, strangely.
Hamish: OK.
[Laughter and music.]
Dom: So we would play that. You know how it starts off ‘do-noo-noo-noo-noo-noo-nooh’? [Imitates the sound of the opening music and laughs.] Everyone else in the wing would be like: “Oh my goodness, what is this music? It sounds like a funeral!” [Laughter.]
[Music plays.]
Jim: So Dom, tell me how did your mum react to your dad's diagnosis?
Dom: Um, so Mum was devastated, of course. Mum and Dad have been together 56 years. So they're a very, very loving couple. Mum was, went into straight into grief. She was grieving the whole time Dad had dementia. But she was amazing. She managed to be brave and very loving for Dad, and she did some incredible things that I'm really proud of watching her do. She helped Dad keep his sense of self. She – when Dad had to go into aged care, because she was caring for him at home and when it became too dangerous for him to stay at home because he was having falls – she made sure that he kept his sense of self by taking all of his shirts home every afternoon and laundering and ironing them: exactly how Dad would have done, because he was a crazy ironer. And if the laundry took any of Dad’s shirts, she would make a beeline down to the laundry in the aged care home [laughter] and steal the shirts back, so they just looked perfect for Dad, and he was probably the only man in aged care that wasn't in his pyjamas, but she really helped him retain his sense of self.
Jim: That's amazing. That's so important, as you say, to help keep that person, you know, close to being who they were.
Dom: Exactly.
Jim: And how about your dad after the diagnosis? Did he do things as well that you recollect maybe protected you guys a little?
Dom: I was the one to have to tell Dad he was going into aged care. And I still have a lot of grief thinking about it. It was one of the hardest things I've ever done, but Dad made it much easier for Mum and I. We had taken him out to coffee that morning. And I had driven him to the aged care home. And I told him – in the car – that he was having to go just away for a few weeks, while mum needed a lot of rest, because she was very tired. And I said to him: “Do you understand?” And he said: “Yes. Yes, I do.” And I started getting a bit teary. And he could see that. And I said: “Thanks for understanding. You're amazing, aren't you?” And he said: “Yes. Yes, I am.” And I said: “And you're really humble too, aren’t you?” [Laughter.] And he said: “Yes. Yes, I am.”
Hamish: So everyone's turning up with this kind of fake bravado. [Laughter.]
Jim: Yeah.
Hamish: Trying to make everyone else feel better.
Dom: Yeah, yeah. And these are the moments when – I mean talking about false bravado – suddenly you don't care anymore. You're just there making people happy: and yourself. Because it is something you can hide behind: laughter and humour. And it's important as well, just to…
Jim: You’ve got to hold on to it, haven’t you?
Dom: …you do.
Hamish: So how do you feel, Jim, about your kids adapting? I mean, you've talked to me in the past about the changing dynamics with your husband, Tyler, but I'm just kind of wondering about the kids as well.
Jim: I think with my kids and my kids’ partners, I try and be jovial, chat and enjoy a beer with the boys and don't really want to go down that road too much. And I think they respect that in me as well. Because I think they avoid saying: “How are you?”
Hamish: Yeah.
Jim: You know and we talk about everything and anything but that.
Hamish: This is the false bravado that you were telling me about, right?
Dom and Jim: Yeah.
Dom: Yeah and I think it's really important. It's living a day at a time and celebrating the moment you're in now, which I think is really important with dementia, living in the moment you're in, and not. I think that's where anticipatory grief comes in when you start worrying about what's going to happen.
Hamish: So Dom, you did lots of things to try and keep your father-daughter relationship alive I guess, while he was deteriorating.
Dom: Yes.
Hamish: How did you make that distinction? And how did you help foster that?
Dom: I made tools. I knew I would have bad days, when he had a bad day. And I would be: “How am I going to keep up this happy front?” You can't do it all the time. So I thought: “I'll make a book for Dad.” So I started with a ring binder folder. I started with a few little stories about Dad when he was young, some photos of him growing up. I reached out to his siblings and said: “Do you mind like sharing some stories about funny stories – because he always had funny stories in his life – about growing up together?” And they wrote like two pages of stories. Put them in the book. I started writing stories on our travel, we had some funny things happen when we're travelling overseas together. I put pictures with every story. And each time I visited, I would bring him up a new story. And I thought: “This is a great way to give him something to look forward to.” I would say: “There's going to be another story next week! Just wait!” And it also helped me, if I was having a particularly sad day and I didn't feel it, like I could really cheer him up – or I thought: “I can go to that book and just start reading from it.” And it's got the funny stories and so it was like a good backup plan for me. And I thought it would be really helpful during COVID when nurses…
Jim: To know about him. Look into his life a little. That’s fantastic.
Dom: Yeah. And they could read to him about it. And visitors I often noticed – not just with our relatives or friends – but, well Dad had a good friend as well that would visit and he did say to us: “I'm so nervous, I don't know…” – because Dad was non-verbal, some, most of the time – “I don't know how to talk to Noel anymore.” So, I thought: “This is a great go-to for him as well. He can just either point at the pictures or read some stories. Yeah, but I did notice just in the home in general, people being scared – not knowing how to engage with people with dementia.
Hamish: Yeah.
Dom: So it was a great toolkit for, yeah.
Hamish: That can be very confusing for people, right? Because, they’re used to… like, I get calls all the time now from family or Dad's friends saying: “I can't really, like your dad's not answering the phone. He's not replying to emails, I call him and I can barely hear him.” And that's true. He's just losing all of that function.
Dom: Yeah.
Hamish: But I don't really know what the… I don't know what the solution is. So I end up going to visit him. We go through all his emails and his messages, and we reply or do stuff. And then as I'm leaving, I'll call back one of the friends, put it on the loudest speakerphone and put it on Dad’s chest and say: “Off you go!” [Laughter.]
Dom: That's great!
Hamish: I don’t know if it’s a very good solution. And Jim, have you noticed any of your friends reacting in different or interesting ways when they learn about your diagnosis?
Jim: Yeah, as you said earlier, everybody's different, the way they react. Some of my friends are super-positive. And really look for “well I do that, you know, I'm forgetful” and stuff like that. But some of my friends don't really mention it or discuss it. And I think they get the vibe from me that ‘let's just be positive and carry on’. But a couple of my close friends – really close friends – have been to awareness about dementia and really invested and read up on it, you know, and spent a lot of time finding out stuff, but some of my mates just are very jovial about and don't really want to deal with it.
Hamish: The ones that have invested in figuring things out about it and learning and taking courses or whatever. What's that meant to you?
Jim: A lot. Yes, it’s meant a lot because Caroline and Nat, who, you know, went on holiday with Ty and I recently, they both went and did a course and learnt about it, but they're very in touch with a lot of stuff, and they’re very understanding and I feel very relaxed, because I don't have to put any bravado on – which is exactly what you were chatting about earlier – with them.
Hamish: If they say or do the wrong thing, do you say: “Go back to the course!”?
[Laughter.]
Dom: “Do some homework!”
Jim: I don’t, but I should.
[More laughter.]
Dom: I think the most important thing I tell anybody that says – you know, you do hear this often, people say: “Well what's the point of visiting people in an aged care home because they're often asleep or they're not… they've got dementia, you know, they're not going to engage with us.” I think an important thing is trying to reach in to your loved ones with dementia by using tools, by reading them stories from their past, by playing games, even if it's – or colouring in. Just enjoyable things you can do together. And I think when people say there's no quality of life for someone, even with advanced dementia, I really disagree because to me, I think quality of life is reaching in and connecting with someone you love.
Jim: If you're struggling with how your friendships and family relationships have changed since your diagnosis, or if you're the friend who just isn't quite sure what to say, you can call the National Dementia Helpline and talk to an advisor like Kristin. They're here to help.
Kristin: After a diagnosis of dementia, you might feel like so many things are going to change. And one of the ones you might be really worried about is the changes in your relationship with your partner. If you're worried about how your relationship is going to change, or maybe you've already noticed that it has and you want to talk to somebody about that, Dementia Australia offers support on the helpline or with counselling, so that you and your partner can talk about how you're both feeling and talk about ways that you can make things a little better. Maybe even a little fun as you go. It can be really difficult when you find out that you've got a diagnosis of dementia. And you really want to reach out to the people that you love: your friends and family. But it feels like they're pulling away. I've spoken to a number of friends who call the helpline because they don't know what to say. And often, I'll ask them: “What do you usually talk to the person about?” And you know, maybe it's footy, or maybe it's flowers, or maybe it's a joke that you've always had. And I encourage them to just start there. One thing that might make it easier for your friends, is to let them know how they can be with you. How they can make the friendship work easier. So maybe at golf, it's hard for you to write the score. Your friend can do that for you and you can let them know that. And when you're making new friends, you don't have to tell them right away: “I have dementia”. It's okay to talk to them about anything else you'd want to talk about. Eventually, it might come up, just like anything else would in conversation. If you want to talk more about anything you've heard on this episode, like navigating new territory and your relationships, you can contact the National Dementia Helpline on 1800 100 500. We're available 24 hours a day, every day of the year. Give us a call.
Jim: Hold the Moment is a podcast from Dementia Australia. It’s produced by Deadset Studios. You can find more episodes and resources through the Dementia Australia website dementia.org.au. And don't forget to follow Hold the Moment in your podcast app, so you don't miss an episode. The show is hosted by me, Jim …
Hamish: And by me, Hamish. The executive producers are Kellie Reardon and Grace Pashley. The producer is Liam Reardon; sound designed by Sean Holden. A special thanks to the whole team at Dementia Australia and to all the advocates who share their stories on this podcast.
Jim: If you're enjoying Hold the Moment, you can leave us a review, or rate us in whatever podcast app you're listening to right now. It really does help other people struggling with dementia find the show. We'd love to hear from you.
[END OF RECORDED MATERIAL]
About the episode
Family, friendships and dating with dementia
Hear the stories of people who have stayed connected to their friends and family, and created new connections, after a diagnosis of dementia.
Bonus episode
Transcript
[BEGINNING OF RECORDED MATERIAL]
Jim: After a dementia diagnosis, connecting with others can look pretty different. Your relationship with your friends or your loved ones can change, sometimes into unexplored or exciting directions. Some of my friends have done courses, they want to talk about it, while others find it really hard to talk about. I'm Jim Rogers, and this is Hold the Moment, a podcast from Dementia Australia. In our episode on relationships, you'll meet Anthony, who's been dating someone new since his diagnosis. And you'll meet Dom, who found her relationship with her dad changed quite a bit while she was caring for him. In this bonus episode, an advisor talks about navigating connections with others.
Kristin: I'm Kristin, an advisor on the National Dementia Helpline. When you call us, you'll speak to someone like me. We're available 24 hours a day, every day of the year. We’re a free service and you can talk about anything that's on your mind.
After a diagnosis of dementia, you might feel like so many things are going to change. And one of the ones you might be really worried about is the changes in your relationship with your partner. If you're worried about how your relationship is going to change, or maybe you've already noticed that it has and you want to talk to somebody about that, Dementia Australia offers support on the helpline, or with counselling, so that you and your partner can talk about how you're both feeling, and talk about ways that you can make things a little better - maybe even a little fun - as you go.
Nobody wants to feel like a burden, especially to their loved ones. It could be really helpful to let your loved ones know that that's how you feel. And you might be surprised at the response they have. They might not realise that that's how you feel. And there might be some ways that they can offer to help you or support you that are a little different, that maybe make you feel a bit more empowered or a bit more in control of things. Also, your loved one might just tell you that they love you and that they don't mind. And that might be enough to remind you that you're still important to them, and that they value you just like you are.
It can be really difficult when you find out that you've got a diagnosis of dementia. And you really want to reach out to the people that you love: your friends and family. But it feels like they're pulling away. I've spoken to a number of friends who call the helpline because they don't know what to say to the person who they love who's just been diagnosed with dementia. And often, I'll ask them: “What do you usually talk to the person about?” And you know, maybe it's footy, or maybe it's flowers, or maybe it's a joke that you've always had. And I encourage them to just start there. So if you find your friends pulling back, you could invite them into one of the things you've always shared. Invite them along fishing, if that's what you've always done. And what they'll see is that you're still you and you still like fishing, and you might still make bad jokes.
One thing that might make it easier for your friends is to let them know how they can be with you, how they can make the friendship work easier. So maybe at golf, it's hard for you to write the score. Your friend can do that for you, and you can let them know that. It can be really tricky at any stage of life to meet new people, make new friends. It might feel even trickier now that you've got a diagnosis of dementia. What I'd say is: “How have you made friends in the past?” Think about that.
Were you a football player before? Maybe you could find someone to watch football with? Did you like knitting? Maybe you could join a local knitting group; meet some other people who have the same interest as you. And when you're making new friends, you don't have to tell them right away: “I have dementia.” It's okay to talk to them about anything else you'd want to talk about. Tell them your name. Tell them your favourite food. Tell them what you'd like to do on the weekend. Eventually, it might come up, just like anything else would in conversation.
Some people living with dementia feel like it's a great time to try something new. Have you always wanted to join a choir? Now's a great time to try that new activity, meet some new people while you're doing it. Have you always wanted to paint with oil and never known where to start? Your local council might have different activities that you could try and you'll meet new people at those activities, who have similar interests.
One of the aspects about your relationships that might be changing is the sexual relationship. You might be wondering about navigating consent, now that you've got a diagnosis of dementia. As your relationship with your partner evolves and changes, you might be wondering, is it still okay to have sex? Of course it is. If you're interested, and the person that you're with is interested, you can get up to anything that you both feel is safe and comfortable.
If you want to talk more about anything you've heard on this episode, like navigating new territory and your relationships, you can contact the National Dementia Helpline on 1800 100 500. We're available 24 hours a day, every day of the year. Give us a call.
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Managing relationships with dementia
Helpful resources and tips for staying connected to friends and family, and creating new connections, from National Dementia Helpline staff.
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 One explores diagnosis, relationships and everyday life after dementia, including strategies for exercise, sleep and staying connected.
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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.