Still Us
Navigating Relationships, Love, and Intimacy
Transcript
[BEGINNING OF RECORDED MATERIAL]
Kevyn: 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.
Dennis: Dear George, when I was first told I had semantic Frontotemporal dementia, now over 12 years ago, I was also told that I only had three to six years to live. And I certainly didn't imagine that I'd still be here today, let alone meeting a grandchild. And yet, here you are. And you being here today feels like the best surprise of my life.
Jim: In the face of dementia, love and connection can take many forms. Earlier this year, Dennis became a grandfather for the first time, and that moment changed everything for him. He's written a letter to his grandson, George.
Dennis: Since my diagnosis, my relationships with your dad, your uncle and the rest of our family have actually grown stronger, but meeting you has been the very best thing of all so far. You're only six months old and you haven't worked the usual social skills and rules yet, and I've lost a few of mine. So, when we look at each other, it feels like that we're communicating on our own secret wavelength, no small talk needed. We see one another at a very fundamental level. I realised the other day that I am the first grandfather in our family to actually meet his son's son. So, we're already breaking family records together. Now, I do have one request. I would like to be around long enough to congratulate you when you finish school and maybe even when you get your PhD. I've already suggested that you could finish your doctorate before high school and perhaps clone a dinosaur along the way. Preferably a nice Australian one like the muttaburrasaurus. Anyway, whatever you decide to do, I hope I'm here to see it. Lots of love. Your favorite grandpa.
[MUSIC]
Jim: I'm Jim Rogers, and I'm living with younger onset Alzheimer's.
Hamish: And I'm Hamish Macdonald. I cared for my dad, who was living with Lewy body dementia and Parkinson's disease.
Jim: And this is Hold the Moment, a podcast from Dementia Australia, full of real stories from people living with dementia and the people who support them. When you hear dementia and intimacy, you might think first about sex, and the conversation probably starts to feel a little uncomfortable. But intimacy is about so much more than that.
Hamish: Uncomfortable? I can't get you to shut up about it, Jim! But the reality is, it is all about connection, about closeness, about love, and it's also about the complications that dementia brings; that could be a loss of personal space, guilt, frustration.
Jim: So, despite how important these relationships are, we rarely talk openly about how dementia changes them.
Hamish: And when we started this new season of the podcast Jim, we said we're going to get into the nooks and crannies. The complicated stuff.
Jim: Well, you did. [Laughter], Yeah, we did. We said we'd touch some stuff that we haven't done before.
Hamish: Yeah, and on this episode, we're going to introduce you to Catherine Barrett. She's the CEO of Celebrate Ageing, which is a charity committed to combating ageism and also building respect for older people. It includes all of these issues around intimacy.
Jim: Catherine, welcome to Hold the Moment. It's a pleasure to meet you. We've heard a lot about you. For our listeners, could you start off by just telling us a little bit about how you came to establish Celebrate Ageing.
Catherine: I was out of a job at one point, and the only work I could get was in the local aged care home. And, what surprised me was how wonderful older people were. Now, isn't that ageist! But I thought older people were, I have decided that older people are the most wonderful cohort on the planet and that we are not respectful by and large. And so, I set up Celebrate Ageing to change that, to create culture change and build respect for older people. And I've been working with older people for over 40 years, and I set up the charity about 14 years ago.
Hamish: So, I'm interested, just to begin this conversation, how we differentiate between love and intimacy? Are they the same thing? Can they exist without the other?
Catherine: I think love, the word love, passes the pub test a bit better than the word intimacy does, you know? So, the intimacy feels like, almost like, you know, language that we might use if we were having a therapy session. And I think people understand love a bit, a lot better. And we all know, I mean, everybody would tell you, almost everybody would tell you that love is incredibly important in our lives. And I think intimacy is one part of love, but it's far less well understood. So, I think, I think love is, is a word that people really relate to better, actually.
Hamish: But is like, this is a total uneducated view of it. But I guess when I hear those terms, I think of love as being an emotional thing, something you can't touch, and the intimacy being the physical bit. But is there more to it than that?
Catherine: There is more to it than that. I think there's a part of a movement that we're involved in creating, is around people understanding that love is not that fairy floss, met someone, fell in love, feel really good about it, and you know, sort of all tingling. Love is about a set of skills that we need to live in a relationship or be in relationship with someone else, whether it's you know, children, intimate partner, grandchildren. And it's about building those skills that help you, over time, to go through whatever you go through in relationship with another person. And I think intimacy, although the definition of intimacy includes, you know, that connection we have to children or grandchildren, people often understand intimacy to be just about sex. And so, I think it's, it's really useful to play around with what we mean by both of those words.
Jim: If you, in summary, were to put it, what does intimacy actually mean to you, Catherine?
Catherine: I think intimacy is about a human connection, and that can be sex. But it can also be, you know, loving your children or your grandchildren, or, you know, having special other relationships in your life. So, it's about a human closeness or connection, I think.
Jim: I think that's a hard thing with people as they get older, because it's expected that that disappears more so, don't you think?
Catherine: Yeah, look, I think we are ageist, and I think we live in a very ageist society and an abler society, too. So, I think older people living with dementia cop it on both sides. The view that they are of less value because they're older, and also too because they have dementia. And so, I think there is not an understanding that love and intimacy and human connection become even more important as we age, and particularly the people I work with who live with dementia tell me, incredibly important to them, that intimacy or that human connection. More important.
Hamish: So, I guess this is starting, this conversation is starting to move into some of the trickier territory here, which is about a diagnosis living with dementia and intimacy, and whether that still occurs, and how you talk about it. When you are working with families or individuals who are living with dementia, what comes up most frequently in this sort of space, in this territory? Like, do people say, can I still have sex? Can I still do those things? What are the rules?
Catherine: Well, I think the thing that comes up most frequently is that we don't talk about it, and that's a problem. And you know, often people will say to us, well, what should we do in this circumstance or that circumstance? And there's no formula that works for everyone, except for this one principle that almost always, having a conversation about intimacy helps.
Hamish: if you're in one of those families or relationships where you don't,
Jim: It's taboo,
Hamish: How do you start like, well, give us, because you're talking through this podcast to people that either have a diagnosis or they're looking after someone that has a diagnosis. You know, some people might be like, how do you go about having a conversation with grandma about her sex life?
Catherine: Well, I think it's useful to start having a conversation with someone that you know is open to having a conversation. So, the work we do is often with couples. They're often older couples, and so they find they might be a healthcare practitioner, a GP, or a nurse or a dementia expert that they can talk to, before they talk to their sons or their husband. Because often, often we know, particularly from the research, is that, sometimes the conversations aren't initiated because older people in particular feel that they don't want to have a conversation with me about it. And then the health practitioners are going, well, if there's going to be a conversation, I have to wait for them to initiate it. So, everybody's being super polite, and no one's talking about it. No one wants to offend anyone. And initially it'll be, well, I can't talk about that. But once someone else raises it, it gives permission. And then the whole, the whole wall comes tumbling down, and people go, here's someone I can talk to. They're not going to judge me. And being able to then have that conversation. Does this happen for you? This is what's happening for me. And so, then you've got a sounding board. And what we're finding, particularly in the group work, that there'll be, you know, if you've got a group of people, there'll be someone who is experiencing something similar to you. And so, being able to have those conversations are an incredibly healthy thing to do.
Hamish: I know you're saying that everyone's experience is different, Catherine. There's no, you know, same journey. But what are the difficulties that come up, like, what do you hear about? What, let's get, let's put it on the table.
Jim: He wants to get to the crux of it.
Catherine: So, there's a whole spec, there's a whole spectrum of challenges, and some of them relate directly to sex and to sexual consent. But what we find at the other end of the spectrum of issues, if you like, is that often people will say, I need space. I don't have space. And that, you know, I'm in a relationship with someone. And our whole lives we had space. You know, he had golfing or his mates and work overseas.
Jim: That makes sense.
Catherine: He was never there, and now I'm his care partner, and I can't put the bins out without him saying, where are you going? Don't leave me. And so, she's having to say, come with me. But the problem with that is that there's no space. And people talking about, you know, my partner gives a running commentary on everything that he's seeing. There's a report on the pigeons outside the window or the people that are coming and going in the retirement village.
Jim: Do you think that is really heavily related to dementia that, like, sort of homing in on that being, you know, so close to the carer all of the time? Did you hear that a lot?
Catherine: Yes, yes. It's, I think it's an issue, Jim, for some people living with dementia who are further down the course of the progression of their disease. And so, they're becoming really anxious and this is something that we hear quite often, that for care partners, who may have, whose other role may have been intimate partners, and that intimate relationship that was very reciprocal, the relationship can then become very one way that, that I suddenly become the care partner. And then, where's my space? Where's, where's the thing that helps me, that gives me life, that gives me the sense of being nurtured in this relationship, and then they don't feel like having that other kind of intimacy with their partner. They don't feel like having sex or, (-exhausted) they're exhausted. And so, when we talk about sex, often for people living with dementia, we focus on consent as we must, and we focus on that kind of pointy end, if you like, but it's about a whole relationship.
Hamish: So, we are going to get to consent, because that's a really important dimension of all of this. But I wonder if you could lay out for those listening, does desire change? Does the expectation of physical touch change because of this disease, like what goes on? I mean, I've read about both people saying I've lost my appetite for intimacy, and others going the total opposite direction.
Catherine: Yeah, and I think, I think you're right, Hamish, both are true. We know that sometimes with dementia, there can be hypersexuality, or people can become sexually disinhibited, or in some of the work that I've done around sexual assault, or older women who are experiencing sexual abuse that what they find is that, if they may have a male partner who has dementia, who has forgotten how to negotiate sexual consent. Or has sexual relations with their partner, and then forgets ten minutes later, and then is placing sexual demands on their wife. And that creates difficulties, because for the older woman, quite often, they'll say to us, but I can't tell anybody about this, because I feel ashamed and embarrassed. But, also too, I made a promise for you know, for better or for worse, and he needs me, and so I'm not going to tell anyone, because what if they take him away? But we've spoken to health practitioners who, in those circumstances, sometimes come up with really simple strategies that can assist both husband and wife. And one story I'm thinking of, the geriatrician told me that the man who had dementia was quite depressed and placing really heavy sexual demands on his wife, and they actually gave him an antidepressant. So, there's a particular brand of antidepressants that have SSRI inhibitors, so they have a little bit of libido suppressant effect. And he was given one of those, and it stopped the demands that he was making on his wife, and he was a lot happier. And his wife, because she was able to then sleep at night, was able to continue to care for him.
Hamish: I think a lot of this can be very hard for families to confront or even grapple with, you know, and maybe, if you're putting or helping someone into residential care, for example, maybe they are married, but this will separate them effectively in the marriage. Do you at that point imagine that questions of touch, of intimacy are over for that person? Or, if you're the carer, you're the family member, do you have an obligation to be thinking about this and thinking, okay, Dad's now in residential care. Do you still need to be thinking about their intimate needs, their physical needs?
Catherine: Hamish, I think that's you know, rather than having an obligation to talk about it, I think most of, you know, we live in an ageist society, so most people are unprepared for hearing about an older person's sexual expression. So, I think rather than an obligation, I'd say to you, it can be really helpful to have a conversation about it. And you know, most adult children don't want to talk about their parents’ sexuality or sexual expression or sexual preferences or sexual consent. But the thing about dementia is, you know, you can find yourself in a situation where the best option is to have a conversation about it. And I think in those situations, sometimes we find that families will shut it down. This is something, you know, suppress that sexual expression, stop that immediately. But it is much more helpful to have a conversation that involves not what I want for my father, for example, but what I think, if your dad isn't able to make the decision for himself, what I think my father would want for himself in that situation, and to have those conversations. And for you to be really empowered with that, because in residential aged care services, so many of the service providers have never had any education on sexual expression and sexual rights, even though we now have a Charter of Sexual Rights and Responsibilities.
Hamish: But there are, there are service providers within aged care settings, though, aren't there?
Catherine: Do you mean sexual service providers?
Hamish: Yeah.
Catherine: In the standards and guidelines for residential aged care, there used to be, and there still will be, we've got new standards, but there was a standard that said that older people have the right to access community services. And so, I think so often people think, oh, that's an RSL, or it's their church or, but older people are as diverse as the rest of us. And older people have the right to access services, whether someone has accessed a sexual service previously or not, they have all the rights and entitlements that each, and, that we all do. The problem is it's communal living, and everybody knows everything about what everybody is doing, and so everyone has an opinion, and they weigh in. And it can become explosive. But you've got to push all that stuff aside and just go, who is at the centre of this? What is it that they need, and are they infringing on the rights of other people? No, they're not. So, you know, sometimes we just, people just all have to, we have to grow up.
[MUSIC]
Hamish: A couple of times, as we've crawled our way through this complicated conversation, you've mentioned solutions that people have come up with. Clever ideas, whether it's about the partner getting space or someone finding a fix in a new physical residential setting. Can you give us some examples of the clever ideas you've come across that people have come up with, to deal with some of these things?
Catherine: Yeah, I think that they are incredibly simple, particularly given in partner relationships, which is most of the people who come to our groups. The issue of space, of having space is incredibly important. And people are saying it's really something as simple as somebody said to me recently, they got a second television and they put it in the other room because their husband was in this particular room and was doing a pigeon count and that the noise and the sort of, the constancy of it was really quite oppressive for them. So they bought a television and went into the other room. And whenever they got frustrated, they just went into the other room and created that space for themselves. Now that doesn't sound like the solution for a problem in an intimate relationship, but there are dozens of those every day that seem to work for people. And one of the other ones was reaching out to adult children and saying to them, I am finding this really difficult. I need you to step up and come in once a week and give me some space, so that I can actually go out with my friends and have my own life. So that's another one. One of the other ones is actually doing something that is not just being in that intimate relationship with your partner. And so often, people tell us that they don't go out to the local bowling club or the pub or the movies or out for drinks with Probus or Rotary or whoever their friendship network are that brought all that joy in their lives. They don't because they are worried that maybe their partner might do something that embarrasses them or they feel ashamed of and they've noticed that they're getting feedback from friends and family, well, we actually find it hard to talk to your husband. Now, we don't know,
Jim: Heartbreaking, so sad, isn't it?
Catherine: But Jim, the solutions are fairly simple in this case. And one of the women said she just, that her friends were saying, I don't come around or I don't want to go out with you because I don't know what to say anymore. And she was saying, well, just say the same things that you used to. Like, talk about the football for four hours, I don't care. But people have got to push past this discomfort they have. And if you go out, and someone was saying, they go out to dinner and they need to help their husband to eat. So, it's actually, like, you know, forking the food into his mouth. And they're embarrassed that they're not going to go out, but they've got to go out. This was, this was the solution. They've got to go out. Because being out and being around their friends is like bringing some nurturance into that relationship. You know, it's like opening the window on a, you know, on a musty day in the house. It's bringing life back into the relationship.
Jim: Everything you're saying, it makes so much sense. And people just need to step up, really. And, you know, take into account, some people have got their issues to deal with,
Catherine: And I think that's one of the reasons that we focus on love, because love is something that we can all relate to. And if we say people living with dementia are capable of love, and of loving, and are worthy of love, then it's like speaking that, you know, it's like, it passes the pub test. It's like, it's like language that people can relate to. It's sort of suddenly, you know, I thought he was gone. You know, this idea that someone who gets dementia is gone and there's nothing there for me anymore. They're capable of love, and love is incredibly important. And so, we are asking, as you say, Jim, we are asking people to step up and talk about the footy for an hour, or talk about your garden, or bring the newspaper, and you know, all those kinds of things, those little, small acts of love that are giving back to that person living with dementia, will help their partner, and ultimately help that intimate relationship. Because, it's not just the person living with dementia and their partner, it's a whole community, a whole network of people who are supporting that loving relationship.
Hamish: We haven't left any taboos off the table, have we? Is there anything that we should really talk about before we let you go? You're the person that's breaking down all the boundaries for this, Catherine.
Catherine: Look, I think the other aspect of sexual consent that is also incredibly important to talk about is in intimate relationships, where there is, where a partner still wants to continue a sexual relationship and their partner can't consent, or the consent is uncertain. You know, this is something that gets raised often. And I think, again, the solution is have a conversation. Find someone you can have a conversation with. You know, talk to your GP, the dementia support hotline. Have conversations about it. You know, don't struggle on your own. Talk to someone about it.
Hamish: Catherine, thank you so much.
Jim: Thanks, Catherine.
Catherine: Thank you.
[MUSIC]
Jim: You'll experience lots of changes after you receive a dementia diagnosis, but one that's not talked about very often is how your intimate relationships might change. For some people living with dementia, their interest in sex might start to diminish. For others, it can go the opposite way, and libido can be hard to control. For most people though, sex and intimacy will change in some way, at some point. So how do you talk about these changes with your partner? How do you manage your own changing desires? And, if your partner is now living with dementia, how can you talk about sex and intimacy to make sure you're on the same page?
Karen: Intimacy is tough and it's scary for all couples, and we are currently experiencing a range of emotions, enormous grief and love.
Jonathan: And they say that grief is one of the purest forms of love. And in that first month, you just are hit by it, by these waves of, oh my gosh, what, we're losing lots here. The nice thing about it, at one level, is because it is so raw, it just affirms your love.
Jim: Karen Dymke is an advocate with Dementia Australia, and Jonathan is her husband. Welcome to Hold the Moment. Karen, Jonathan. Tell us a little bit about your relationship. I believe you've had a surprise wedding.
Karen: Yes, we had a surprise wedding on Jonathan's 60th.
Jim: Wow.
Karen: So, we've been together for 15 years, but we've been married for eight and we didn't tell our children. Oh no, we didn't tell anyone, but we did tell our children. So, it was a big surprise.
Jim: Karen, you've received some pretty big news earlier this year. What was your diagnosis? Can you share that with us?
Karen: It was primary progressive aphasia, but the non-fluent variety. But the first time we went it was frontal temporal dementia, language variant, so it just came down a bit.
Jonathan: But it has a major effect on Karen's language. And that's the key thing, isn't it? And you, you noticed, well, two years ago.
Karen: Yeah, well, three years ago. Yeah, I just lost my mojo and, I just was stumbling over my words, and I was getting my pronouns mixed up, and I just, was always been, you know, the life of the party, and I was very vivacious. And I've got a bit of a fan base.(-Fantastic) The Karen Dymke fan base, because I've been working in that sector for 30 years or more. She said to me, you seem depressed. And I just said, oh, look, you know, I just don't know. And I just, original diagnosis was, it was PTSD or depression, because I had a friend who committed suicide.
Jim: Okay.
Karen: And I was very depressed. And then I had an MRI and which didn't show anything. And then I had, went in to an integrative doctor, and she gave me some herbals and verbals. And then I had a PET scan, and that is what diagnosed me, yeah.
Jim: And this must have been so hard to take on. I mean, what was your initial reaction, both of you? I mean, how did you feel when you got this news?
Jonathan: Well, I mean, it really, absolutely rocked our world and, but there was also this whole sense of, we're trying to find out what's wrong here. So, there is a sense of what, okay, there's a bit of relief. Okay, we know what's wrong. But then, unfortunately, the specialist outlined and told us the news and then gave us, as they, as they do, this seven to 10 years, which also really,
Jim: Is terrifying,
Jonathan: Cements how long you have to be together. And we ended up, you know, questioning that and going somewhere else. And they're less definitive, because it's a very individual journey for Karen and us, together.
Jim: And with that, it brings a bit of a grieving process, really, doesn't it, about the future. It starts to make you anticipate what you might not get. That's really a heavy part of it, would you say?
Karen: Yeah.
Jonathan: And they say that grief is one of the purest forms of love, and in that first month, you just are hit by it, by these waves of, oh my gosh, what, we're losing lots here. But the nice thing about it, at one level, is because it is so raw, it just affirms your love.
Jim: A dementia diagnosis changes you really, as soon as you get that instant diagnosis, how would you say it's changed your relationship now?
Karen: We've always had a very good relationship. In fact, my son Nicholas says that we've got the best relationship.
Jim: That's a great compliment.
Karen: But it just makes it more tender and gentle.
Jim: Since your diagnosis, has it changed how your intimacy evolves? You know, how you are together?
Jonathan: The tenderness has been just wonderful, and it's continuing in relation to us both listening and being more aware of each other's needs. But it sort of began two years ago, really, when we were wondering what was, what was wrong too, because we went on more holidays and did other things. But it's, we've just become much more mindful, probably about living in the moment, not living in each other's pockets, because Karen's still incredibly independent.
Jim: How partners physically relate to each other, their intimacy often changes too. How has the intimacy sort of changed in your relationship, would you say? Have you noticed it changed much? Or, have things gone in a different direction since your diagnosis?
Jonathan: Certainly more conscious of Karen's needs, picking up all sorts of little things when she says yes and she actually means to say no, is important, and working out the style of communication that she's having. But as the whole thing progresses too, I think that touch is going to be more and more important. As language won't be as fluent and, well, yeah, we'll need to rely on that a little bit, a little bit more. We're still in this tender time, which is, which is wonderful, so we're going to maximize that.
Jim: So, have you sort of had those discussions about consent in the future, how things could change there? Because, obviously, everybody has got a different libido and a different desire. So, have you sort of had those chats?
Karen: Yeah, yeah. We have.
Jonathan: Yeah, we have. And doing this podcast has made us even have more about what this all, what this all means. And I think that,
Karen: You mean more sex or more consent? (Laughter)
Jonathan: It's going to be, I think, really critical to be listening to Karen and her needs, and that, as time goes on, one of the things we talked about was that it's probably going to be important for Karen to make the move. And that'll be something that, you know, I'll need to be very mindful of. And fortunately, she makes a move reasonably often.
Jim: Thank goodness! (Laughter)
Jonathan: That's right.
Jim: How do you think about consent now?
Karen: I think I'll face those challenges as we move on, and I don't have any worry about, you know, consent.
Jim: Fortunately, you've got a fantastic basis, because you've been together for 15 years, haven't you?
Karen: Yeah, I've got very good trust in him.
Jonathan: But I think that I cheated this morning and looked at the definition of what intimacy is, because we're not experts, really. And it highlighted that, you know, there's an emotional level, there's an intellectual level, there's a whole area around what were the others,
Karen: the other spiritual.
Jonathan: spiritual level,
Karen: the physical level,
Jonathan: yeah, and then the physical.
Jim: So, do you have any advice for couples that are listening to this? And what would you say has been the most helpful thing to maintain your intimacy? You know, after the diagnosis and on this journey that you're both on together?
Karen: So, intimacy is tough, and it's scary and difficult for all couples.
Jim: So right.
Karen: And we are currently experiencing a range of emotions from enormous grief and love and why not try to maximise this time of tenderness and talk about consent and maybe lean in towards the person with the diagnosis, to be the one to initiate the love making. And finally, good luck to everyone, because we need some.
Jim: Thank you both so much. It's been such a pleasure chatting.
Jonathan: Thanks, Jim.
Karen: Thank you.
[MUSIC]
Jim: Hold the Moment is a podcast from Dementia Australia, produced by Deadset studios.
Hamish: You can find more episodes and resources on Dementia Australia's website, dementia.org.au and make sure you're following Hold the Moment, so you don't miss an episode.
Jim: This show is hosted by me, Jim Rogers.
Hamish: And by me, Hamish Macdonald. The executive producers are Kellie Riordan and Sarah Dabro. The producer is Liam Riordan. Production Manager is Ann Chesterman, Sound design by Slade Gibson.
Jim: And 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
When Karen was diagnosed with primary progressive aphasia, she and her husband Jonathan knew their relationship would change. What surprised them was how.
More tender. More mindful. More honest about consent as things continue to evolve.
Their story opens up a conversation about what intimacy really means when dementia enters a relationship: not just sex, but connection, closeness, and love in all its forms.
Dr Catherine Barrett, CEO of Celebrate Ageing, brings both research and warmth to the question, sharing the tools she uses in workshops to help people of all ages and abilities develop what she calls "the skills of love". Intimacy, she says, is about human connection and that includes your children, your grandchildren, and every special relationship in your life.
Resources and support
Within the Dementia Australia Library the following topic guide is relevant to this episode and may be useful:
National Dementia Helpline 1800 100 500. You can call 24 hours a day, or request a callback, start a webchat, or send an email with whatever is on your mind.
Dementia information and education sessions
Online and in-person sessions from Dementia Australia that build understanding of dementia and provide practical strategies for support and care.
Watch the interview
In this video, we go one on one with our podcast guests.
Transcript
[BEGINNING OF RECORDED MATERIAL]
Karen: Intimacy is tough, and it's scary and we are currently experiencing a range of emotions from enormous grief and love. And they say that grief is one of the purest forms of love and in that first month, you just, are hit by it. The nice thing about it at one level is, is because it is so raw, it just affirms your love.
Jim: So firstly, welcome to Hold the Moment, Karen, Jonathan. Tell us a little bit about your relationship. I believe you've had a surprise wedding?
Karen: Mm. Yes. We had a surprise wedding on Jonathan's 60th.
Jim: Wow.
Karen: So, we've been together for 15 years, but we've been married for eight. So, it was a big surprise and we didn't tell anyone, but we did tell our children.
Jim: I love that. Karen, you've received some pretty big news earlier this year. What was your diagnosis? Can you share that with us?
Karen: It was primary progressive aphasia, but the non-fluent variety but the first time we went, it was frontotemporal dementia, language variant, so it just came down a bit,
Jonathan: But it has a major effect on Karen's language, and that's the key thing. Isn't it?
Karen: Yeah.
Jonathan: And you noticed, well, two years ago.
Karen: Yeah, well, three years ago. Yeah, I just had lost my mojo and I just was stumbling over my words and I was getting my pronouns mixed up, and I just, was always been, you know, the life of the party and I was very vivacious and I've got a bit of a fan base.
Jim: Fantastic.
Karen: Karen Dinke fan base, because I've been working in that sector for 30 years…
Jim: Yeah.
Karen: … or more. She said to me, "You, you seem depressed." And I just said, "Oh, look, you know, I just don't know." And I just, original diagnosis was, it was PTSD or depression because I had a friend who committed suicide.
Jim: Okay.
Karen: And I was very depressed, and then I had an MRI which didn't show anything. And then I had a, it went to an integrative doctor, and she gave me some herbals and verbals.
Jim: Yep.
Karen: And then I had a PET scan and that is what diagnosed me, yeah.
Jim: And this must have been so hard to take on. I mean, what was your initial reaction, both of you? I mean, how did feel when you got this news?
Jonathan: We, I mean, it really absolutely rocked our world and, but there was also this whole sense of, we're trying to find out what's, what's wrong here, so there is a sense of what, “Okay, there's a bit of relief. Okay, we know what's wrong.” But then unfortunately, the specialist outlined and told us that the news and then gave us, as they, this seven to 10 years, which also really...
Jim: Is terrifying.
Jonathan: …Cements how long you have to be together.
Karen: Yeah, yeah.
Jonathan: And we ended up, you know, questioning that and going somewhere else. And they're less definitive, because it's a very individual journey for Karen and us together.
Jim: And with that, it brings a bit of a grieving process really, doesn't it? The, about the future. It starts to make you anticipate what you might not get. That, that's really a heavy part of it, would you say?
Jonathan: And they say that grief is one of the purest forms of love and in that first month, you just, are hit by it. By these waves of, "Oh my gosh! What? We're losing lots here." But the nice thing about it at one level is because it is so raw, it just affirms your love.
Jim: A dementia diagnosis changes you really, as soon as you get that instant diagnosis. How would you say it's changed your relationship, now?
Karen: Well, always had a very good relationship. In fact, my son Nicholas says that we've got the best relationship.
Jim: That's a great compliment.
Karen: So, but it just makes it more tender, and gentle.
Jim: Since your diagnosis, has it changed how your intimacy evolves? You know, how you are together?
Jonathan: Yes, the tenderness has been just wonderful and it's continuing in relation to us both listening and being more aware of each other's needs. But it sort of began two years ago really when we're wondering what was wrong too, because we went on more holidays and did other things. But it's, we've just become much more mindful. Probably about living in the moment. Not living in each other's pockets, because Karen's still incredibly independent. We've had to make lots of, lots of changes. We've chose, chosen to sell our house because it was a big old house, to move into a smaller apartment that's been, that was sort of on the cards anyway, but it, it meant we needed to move on that decision.
Jim: How partners physically relate to each other. Their intimacy often changes too. How has the intimacy sort of changed in your relationship, would you say? Have you noticed it change much? Or, have things gone in a different direction since your diagnosis?
Jonathan: Certainly, more conscious of Karen's needs. Picking up all sorts of little things when she says “yes” and she actually means to say "no," is important. And working out the style of communication that she's having but as the whole thing progresses too, I think that touch is going to be more and more important as the language won't be as fluent and, we'll, yeah, we'll need to rely on that a little bit more because I think we're still in this tender time.
Jim: Yeah.
Jonathan: Which is, which is wonderful, so we're going to maximise that.
Jim: So, have you sort of had those discussions about consent in the future? How things could change there?
Jonathan: Yeah, we have, and doing this podcast has made us even have more.
Jim: I bet.
Jonathan: And chats about what this all, what this all means and I think that you...
Karen: You mean sex or more consent?
Jonathan: It's going to be, I think, really critical to be listening to Karen and her needs and that, as time goes on, I, one of the things we talked about was that it's probably going to be important for Karen to make the move.
Jim: Yes.
Jonathan: Ah, and that'll be something that, you know, I'll need to be very mindful of. And fortunately, she makes a move, reasonably often.
Jim: Thank goodness. How do you think about consent now?
Karen: I think I'll face those challenges as we move on and I know, don't have any worry about, you know, consent, so.
Jim: Unfortunately, you've got a fantastic basis.
Karen: Mm.
Jim: Because you've been together for 15 years, haven't you?
Karen: Mm-hmm, yep. Yeah, I've got very good trust in him.
Jonathan: And I think that I cheated this morning and looked at the definition of what intimacy is because we're not experts really and it highlighted that, you know, it, there's an emotional level. There's an intellectual level. There's a whole area around, what were the others?
Karen: The spiritual level.
Jonathan: The spiritual level.
Karen: Physical level.
Jonathan: Yeah, and then, and then the physical.
Jim: So, do you have any advice for couples that are listening to this, and what would you say has been the most helpful thing to maintain your intimacy? Yeah, you know, after the diagnosis and on this journey that you're both on together?
Karen: Intimacy is tough, and it's scary, and difficult for all couples.
Jim: So right.
Karen: And we are currently experiencing a range of emotions, from enormous grief, and love and why not try to maximise this time of tenderness and talk about consent and maybe lean in towards the person with the diagnosis to be the one to initiate the love making. And finally, good luck to everyone, because we need some.
Jim: Well, I think that's so beautifully said. Thank you both so much, it's been such a pleasure chatting.
Jonathan: Thanks, Jim.
Karen: Thank you.
Jim: Hold the moment is a podcast from Dementia Australia produced by Deadset Studios.
[Title Card:
To listen to the full podcast episode visit:
Dementia.org.au/podcast
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[END OF RECORDED MATERIAL]
Ask Us Anything
Transcript
[BEGINNING OF RECORDED MATERIAL]
Kevyn: Hello. My name is Kevyn. I am a First Nations advocate with Dementia Australia. These lands in 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. Welcome and thank you.
Jim: We don't lose the need for love, touch or closeness with dementia, but finding it can look a little different. Hi, I'm Jim Rogers, and this is Hold the Moment. It's Dementia Australia's award winning podcast, which gives you real stories, insights and support when dealing with dementia. On our Ask Me Anything episodes, you send us the questions that you'd like answered about living well with dementia. John has sent us this question.
John: John from Adelaide. My partner doesn't seem to recognise me the same anymore. How do I know what kind of touch is still welcome?
Jim: To help us unpack this one, we've got Louise Pelusey. She's a Helpline advisor and a sexologist.
Louise: Hi, John. Yeah, you're right. Dementia can cause someone to struggle to recognise their loved ones, for many reasons. It's okay to go gently and remind them who you are, but avoid any pressure. Dementia can also change the way a person feels about touch and intimacy. These adjustments can be really challenging and confusing for everyone. So, a person living with dementia can consent to touch, if not verbally, by way of assent. Assent is the expression of approval or agreement, and we can see that in our person's body language and facial expressions or their mood. So, it's important to recognise and understand your own needs in these kinds of situations. So perhaps touch has been an important part of your relationship with this person for a long time, and it's your way of feeling connected to the companionship. If your person with dementia is opposed to touch now, think of ways that you can connect through shared activities, like reminiscing with photographs, sharing a favorite meal, listening to music or dancing together. Your voice may be recognised and reassuring to your person, and these activities become the point of connection. So, take care of your own wellbeing and think about other ways you might be able to feel a sense of connection. So it's perhaps not the same experience as touch with your person, but it will help to support your wellbeing by connecting with friends, family and maybe a peer group. These experiences are different for everybody, so it's important that we meet the needs of our person, and equally important that we meet the needs of ourselves when we're navigating a dementia journey.
Jim: Next up is a question from Raksha.
Raksha: Hi, I'm Raksha from Melbourne, and my dad has dementia, and he's in residential care. There's a woman he's close to, and he's really affectionate with. My mum is feeling distressed about it. What should we do?
Louise: I appreciate these questions so much, because they're actually really courageous. A person living with dementia does have the right to intimacy and to maintain relationships of their choice. We want to support the right to intimacy and we want to ensure safety. So, it's helpful to approach these situations with curiosity and support people first by equipping them to have accurate conversations about intimacy. You know, if we think about it, even talking about this within the family is likely new territory for everyone. So, I'd encourage you as the daughter, to identify your own boundaries. You know, do you want to be discussing your parents’ intimate lives? Language is super important. In this instance, the term ‘really affectionate’ has been used to describe the interaction. So, you know, it's useful to think about what's actually going on here. Are they holding hands, enjoying social activities together, like dining, or is there a sexual interaction occurring? Do they have privacy and is this safe and consensual? Perhaps the affection is mutual. So how do we support mum who is distressed about the situation? Perhaps we could provide mum with education that some types of dementia can lead to increased interest in intimacy. And that the need for touch and connection is an important human need and can actually support wellbeing. Intimacy is important, but it's also something very private and personal. Ensure mum has supports, such as counseling to support her distress and decision making. If we're curious that the interaction is unwanted, we may need to approach things differently. There are resources available, and we can provide support on the Helpline by listening in a non-judgmental way.
Jim: If you've got a question, you can also call the free National Dementia Helpline on 1800 100 500. Dementia Australia's trained advisors are available 24 hours a day, every day of the year. And look out for more episodes of Hold the Moment. This episode was produced by Deadset Studios for Dementia Australia.
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You asked, we answered
This episode answers questions about touch and consent when recognition is changing, and about intimacy in residential care. Louise, a National Dementia Helpline Advisor at Dementia Australia, offers practical, non-judgmental guidance for partners and families navigating this emotionally complex territory.
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 three dives into the topics that can be hardest to talk about, with compassion, practicality and a unique sense of hope.
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The National Dementia Helpline
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