The juggling act
Caring for a loved one with dementia
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.
Jim: I knew something wasn't right and I kept saying to my GP: “I'm having issues: getting confused, constant fogginess.” Well, the memory clinic, they start off by doing a series of testing — cognitive testing, all sorts of things that you fill out, general discussions with you. Psychologist chats to you about your experiences. You then go on to their findings from the cognitive investigations. Then I went for an MRI. They then sent me for a PET scan. Then finally, that led to the appointment with the neurologist. I was truly hoping that they were going to say: “Look, you've got some sort of cognitive issue. We can do this medication. We can do this. Let's get this damn-well sorted, and let's move along and see you later. And off you go.” And when they said: “We’ve reviewed your PET scans etcetera and unfortunately, we can see that you have younger onset Alzheimer's,” you literally could have knocked me off my chair. It's as though time stood still, for a moment.
Hey, my name's Jim. I was diagnosed with younger onset Alzheimer's and as you might expect, life's changed quite a lot for me since then. I was never much into exercise before, but now it's a huge part of my routine, and I'm trying to keep my body and my brain as healthy as possible for as long as I can. I've also been doing quite a bit of travelling. My neurologist, once I was diagnosed, told me to create a bucket list and start ticking things off. So that's one of the things we've been doing. We went to Koh Samui recently. We've got a cottage in Maleny, so we've been having family times there. So we've been trying to get these things that we want to do and we've also been focusing on this podcast, which I'm now hosting, with you.
Hamish: What a bucket list item that is. I'm Hamish Macdonald. This is Hold the Moment. It's a podcast from Dementia Australia. In the first series, Jim and I spoke with people living with dementia. We heard about the challenges that they face, like what to do when you’re first diagnosed, how to deal with the medical stuff and the legal paperwork — of which there is plenty — and how your sleep might be affected over time.
Jim: I also shared a lot about my own journey with dementia and we even had a chat with my husband, Tyler, to get his perspective on providing care and support for me.
Hamish: Even though he doesn't like being called ‘a carer’.
Jim: Absolutely Hame.
Hamish: So in this new series, we're going all in on carers. It's a topic close to my heart. I looked after a lot of my Dad's care. He was diagnosed with Lewy body dementia and Parkinson's. He passed away at the end of last year.
Jim: Caring for people living with dementia can be really tough. It's a logistic nightmare, and it can be mentally and physically exhausting.
Hamish: And I know you've said this; I know I've experienced it too, as a carer. It can be really isolating. If you're looking after someone living with dementia, you might be spending a lot of time at home with them. You might be the only person in your social circle that's going through anything like this.
Nick: I would obviously keep my friends up to date when I'd saw them, but for me personally, I almost sort of said: “I'll give you the update, but I just want us to be friends. I want me to be 30 again.”
Jim: It can also be emotionally turbulent. Dementia can change people, and that's really hard to watch happen.
Col: Shirley's not the girl I married. Nothing is left of that. You know, that's — it's all gone.
Hamish: So, on this season, we're hearing from carers. So how do you feel about people caring for you and calling them ‘carers’?
Jim: Yeah, it's really difficult for me, because I feel pretty good in myself and some of the people that I've met through Dementia Australia have declined a little bit more than I feel I have. So I still don't feel as though I'm that far down the road, so that I need carers, but I'm aware that I do need support in certain areas. So, Ty's resistant on being called ‘a carer’.
Hamish: Is there a friction point for you with Ty or with your kids?
Jim: I think so. I think they still very much think of just me as ‘Dad’ and I do a few clumsy things, and Ty’s much the same. I think it's quite a difficult thing to actually change the name to ‘a carer’. How about you with your dad? Did you find it difficult when you suddenly went from son to carer?
Hamish: Yeah. I mean, I guess it was gradual, like all of these things, but yeah, there was certainly a point where I realised that even though Dad is pretty cognitive and can have really smart conversations about things, he just can't actually land on a decision.
Jim: Yeah. That’s a bit ‘me’ now.
Hamish: Yeah — and that was a really complicated thing to navigate, because you don't want to override someone that has clear intention and will, and can tell you what they don't want. At the same time, you know that in their interests and for their safety, some decisions have to be made.
Jim: Yeah.
Hamish: And it was quite — it was really challenging, to sort of feel that you were basically forcing their hand. You know, I used to try and think of everything like a drop-down menu. If this, then that, if not that, then that. And it just didn't work. You'd go around in circles with Dad. I remember getting butcher’s paper out at one point, trying to sort of put a map of all the decisions in front of Dad, so that he could get to a decision at the end. But even doing that, we'd go back to the beginning. He'd say: "Oh no, well I’ll just stay here at home.” And it's like: "No, no, Dad, we've gone through that."
Jim: “That's not an option.”
Hamish: “You know that that's not an option anymore.”
Jim: For me as well, I'm starting to find making decisions are more difficult and also, planning is difficult for me. So Ty steps up in those areas. I think the kids are also aware that, you know, if they leave it to me to plan it now, it's not going to happen. So they sort of step up with that.
Hamish: I always expected it to be difficult, but it was way more complicated than I ever imagined. Something that was really useful for me was actually talking quite a lot to a colleague, someone that I sit on the desk with at The Project frequently, and who had experienced dementia with both her parents.
Rachel: I'm Rachel Corbett, and I am... what am I? I'm a media presenter. I'm a podcaster. I'm somebody who runs podcast networks. I'm a jack of all trades.
Hamish: And a mum.
Rachel: And a mum! I am a mum, that's true.
Hamish: Tell us what your relationship is with dementia.
Rachel: So both my parents have had it, in different forms. My mum had Alzheimer's. My father had Lewy body dementia. Prior to that, I hadn't really had any experience in dementia at all, but I feel very much like it has become a big part of my life, but there's still a lot I don't understand about it, which, considering it's taken up over a decade, and I've been heavily involved in that, that surprises me — you know.
Hamish: And it's, for you, obviously been a big part of your life. Has it been overwhelming at times?
Rachel: Yes.
Hamish: What's the impact it's had on your life?
Rachel: Massively overwhelming. Yeah, I think my situation with my mum, she had Alzheimer's, and it was very at the end, it was — really bad. Like it was, you know, I say often people think it's like: “Oh, I guess you just forget your car keys.” And it was just so much more than that for my mother. And one of the hardest things was that she was still very present, even in a really small way, right till the end. So the way that I would feel about it when I looked at her, was that I could see her in there. It was almost like I was watching this person who was like…
Jim: Trying to get out.
Rachel: …trying to get out and she was far away from me, distance-wise, even though she was standing right in front of me. But she knew me, and she knew that something like what was happening to her, not — she couldn't articulate it. She couldn't speak about it, but she knew something wasn't right, the whole way.
Jim: So you could almost feel her frustration. You could feel it.
Rachel: Yes. Yes. Every single time I saw her, it was that sort of “get me out of here” feeling: “this isn't me” and that to watch with somebody that you love, and you can't do anything about that, I think I found really, really hard. Yeah.
Jim: Just take us back a little bit to when you first started to notice some of the signs that things weren't right with her.
Rachel: Yeah, she kept it a secret from me and my sister. She knew something wasn't right earlier than she let anybody kind of know. So we didn't really know a lot. I remember asking her to drive me into work one day, and she was like: “Oh, I can't do that.” I was like: “Why? You're available. You have a car. You know how to drive. So, why won’t you just get in the car and drive me to work?” And she kind of couldn't give me an explanation for why, but in her mind, she was like: “I don't know if I can get there and I don't know if I can get back.” You know, and: “I'm just aware that something is happening here and I'm just not confident anymore.” So little things like that would happen. But she wasn't, kind of saying: “I don't feel confident.” And when you're, you know, Mum just won't drive you to work, and you think: “Sh.., what is your problem?
Jim: “What have I done?”
Rachel: Yeah, exactly. “Why? Do you love me anymore? Like, what's your issue?” It's those kind of things that you just can't kind of work out why they're sort of doing things. But from their perspective, it's all a lack of confidence.
Jim: Yeah.
Rachel: You know, it's just that they don't feel confident doing things anymore. And they also don't want to say that.
Hamish: Once you did know, what changed? How did the dynamic shift?
Rachel: I mean, ultimately, with my mum, her and I had had — not a difficult relationship, but I mean, it kind of happened while she was sick as well. She did like to keep up appearances. And there were some things in our life that I really wanted her to be honest with me about, just in terms of my experience of certain things. I really just wanted her to kind of —
Jim: Open up.
Rachel: Open up, take some accountability for some things, you know, some stuff had happened in our life. And I, I felt like I was kind of speaking to a different script than she was. And so in my mind, I'm like this, like: “Am I going crazy here? Like, I feel like —.” And so she wouldn't kind of own up to a lot of stuff and that. And I found that very frustrating. And then when she, you know, realised, “okay, this is serious; this is something”, she really started to open up to me about some things that we'd never talked about that were all I really needed to hear from her, really, because I think she realised “okay, what's the point? You know, like, let's pull the charade away. Let's have a real conversation about this.” And so for me, I remember she actually had that conversation with me the night before I was going to move overseas for two years, and the only reason I was going overseas was because of a lot of these things. I just want to run away, really. And she had this conversation with me, and it was like: “Now I don't need to go and I'm about to get on a plane tomorrow.” And so I think that distance was hard for me then, because all I wanted to do was be around her, and by the time I got back, you know, time —things are different — but as things worsened, we spent a lot of time together and it was really healing for her and I. It changed me fundamentally as a person. I think a lot of the communication issues that I'd had early on, where you know, some of the things that I felt were true weren't being kind of validated, that makes you think that you're the problem, as a person. And then when that validation happens and you're like: “Okay, it's not me.” Like, we experience this together, like, you are on my side.
Jim: That means a lot. And do you think that that diagnosis sort of made her review life in itself and sort of speak to you differently than she previously had, like you said, keeping up this, this façade a little bit.
Rachel: Yes.
Jim: It let her put a guard down because she realised “this is it”, you know.
Rachel: Yeah, I do think that happened to her, and I'm so grateful, honestly, that it did happen, because it really did change our relationship. It changed me. She gave me the biggest gift, like I feel after she passed away, coming through that time, I've never been happier, honestly, like, because it really helped me to see myself differently. And I also think being with somebody like that — you know who needs help and who is afraid and who feels safe around you — it makes you start to feel really positive about yourself too, because you can be that, for that person.
Jim: So there was a silver lining, really.
Rachel: Yes, definitely.
Jim: That brought you closer, in a way.
Rachel: Definitely. I do think... I am very, very grateful for that time. I wish — to get that — my mother didn't have to experience what she did, because I think I benefited from that relationship and that experience by what she gave me.
Hamish: Just explain that.
Rachel: I just mean because how it adjusted our relationship, how it gave me the opportunity to be there for her, in that way. I think that was a real privilege — and just the way it made me feel about myself. I came out the other side of that feeling just grateful to have been able to be there for her.
Jim: See, these things are so emotional, they're so raw. We should have had a big box of tissues here, which we didn’t think to do, Rachel.
Rachel: I'm a blubberer. I love a cry. I love a cry.
Hamish: We work together and they have to keep a box of tissues on standby for her, and a makeup artist.
Rachel: I know. I know.
Jim: It would be a nightmare for her.
Hamish: Tell me about what you actually watched happen to your mum over time.
Rachel: To be honest, it was kind of slower than I thought, you know. I remember people saying: “You know, it's probably about 10 years between when somebody's diagnosed and when they pass away.” And even close to that 10 years, I thought: “This doesn't seem like somebody who's going to die in two years,” you know, and then at the end, it kind of progressed pretty rapidly. But, I mean, the timeline is a little fuzzy, but towards the end, it just really spiralled pretty quickly. And you know, it was a lot of — she became quite difficult to keep at home. My stepfather was having to call the ambulance quite a lot. She was very violent. You know, she had not had a great upbringing and a lot of those memories were coming back to her. You know, when I would spend time with her, she would sometimes take my hand and, you know, and say things to me, and I was like: “Oh, you think you're, you think you're a little kid again.” She was kind of having a lot of memories from that time, and that was also really hard, I think, because, you know, to be taken back to a time for her which was so difficult and to have no control over, it's not you can say: “You know what? I'll go and distract for myself, with something else.” Like your brain is ripping you back into that time and you are stuck there. And I think for her, that was really hard. So seeing some of that, that stuff, was really tough. And, yeah, it was really just, I think just watching the out-of-controlness of it for me. You know, my father's situation was very different. It was a quieter experience, but my mother's was very aggressive. It was very much like she was being ripped around in this situation. It was physical. She, you know, would kind of bundle up in the corner and sort of rock back and forth. She would be violent. She would, you know, she really did feel like somebody who was being torn from left to right, and was just stuck in the middle of it.
Hamish: Was your mum violent towards you?
Rachel: Yeah. Yeah. She didn't mean to be. In her mind, I think it was just like she — it all felt involuntary. You know? It all just felt like she was just doing whatever her body was telling her to do and you could see that she regretted it. You know, she knew who I was. She didn't want to be doing that to me, but that was kind of how it was manifesting for her.
Jim: And often the nearest and dearest is the one that you lash out at. Did you have any particular techniques that you thought were good as a calming influence on her at those moments when she was at her most stressed and angry?
Rachel: I'm pretty good at a comedic left field, you know? In the weirdest of terrible moments, I'm pretty good at coming out with something.
Hamish: The gallows humour.
Rachel: Yes, the gallows humour. And my mum was very much the same type of person. And sometimes, depending on where she was, it would work.
Hamish: Yeah.
Rachel: And a lot of times in those moments, you know, I would say something, and she still, she still had humour till the end.
Hamish: I don't know how you think about this now, I guess, you know, when we're recording this my dad died just a few weeks ago, and I think I'm only just starting to maybe recognise the amount that this was weighing on me, emotionally and mentally. I'm really only just in the process, right at this minute, taking stock of all of that. How do you, with the benefit of some hindsight — at least in relation to your mum — think about it?
Rachel: I don't know how I still managed to get everything done, because one of the things I thought — and a lot about my mum and my dad is that my mum was sort of, you know, it was late 20s and through my 30s. My father was through my 30s into my early 40s.
Jim: You had a lot.
Rachel: Yeah, I used to say a lot during that time: “I am living the life of a 60-year-old right now.” Because I'm taking, you know, I'm taking care of both, you know. I was the only person here for my father. My mum did live in a different state and had care, but I was, you know, constantly, kind of there and thinking about her, you know. And I think that mental energy — I feel like the best night's sleep I had was the night she passed away, because I felt like I could just relax.
Jim: Yeah.
Rachel: ”She's okay; she's all right.” Every day up to that point, I didn't feel she was safe, I didn't feel she was okay. I didn't feel like — I knew she wasn't okay and you know, so that was really hard because you're also feeling incredible guilt for being away, and not being there 100 per cent of the time. But I was really trying, with both my parents, to manage my life as best I could through that time, because I was conscious — and I had seen a lot of people in that situation where they do give everything up, and I feel like that is an amazing thing to do, but I was conscious that I was, I’m in my late 20s, my early 30s: my career is not established. Financially, I need to build stuff up. I want to have a family. At that stage, I was like, I want to try and, you know, meet somebody. So I was like, I have to try and do all this stuff.
Jim: This is crucial stuff.
Rachel: Yes, it's crucial. Because what I —
Jim: You get this wrong…
Rachel: That’s it!
Jim: It could just change everything.
Rachel: And I did not want to get to the end of my mum passing and my dad passing, and think “now I have to start” and resent them for that time.
Jim: Yep.
Rachel: I wanted to be like: “It's fine. This has been a really hellish juggle for me, that I've almost not made it through. But it has been worth like, doing everything at the same time.” Because then when both of them passed away, I was like: “Okay, I've done everything I could there, but also I'm like: “I can go on. I can earn an income. I can have my child. I can, you know, do all that stuff.” And I think after coming through 10-plus years of that, I needed a bit of time. I really wanted to have a kid, but I was like, I actually need a few years off, because I've spent over a decade looking after other people, and I don't want to look after somebody else, right now. And if I had not have done all that stuff during that time, I probably wouldn't have been financially able to have this kid by myself. You know, there was a lot that I kind of felt like I had to keep up in the air, to make sure that I didn't crash when it all sort of ended.
Jim: You've had a lot on your shoulders.
Rachel: Yeah, it's been effing exhausting. I gotta be honest, it's so tiring, oh, like it is a lot, and there is a real sense of relief. You feel terrible for saying that. But honestly, after my mum passed, I was relieved, mostly because it was just like, that was really harrowing for her. For my father, like I had spent the last, you know, eight years of my life, five years when he was in my care, still at home, but in my care, you know, and then when he was in care, it was exhausting.
Hamish: How do you suggest Jim thinks about this, because he's worried about his beautiful daughters and his son, and there's a lot of love, and there's this desire to help, but then there's also a desire to not burden people.
Rachel: Yes.
Hamish: I don't want to speak for you, but that's what you've talked about.
Jim: We talked about this together.
Hamish: And Ty, your husband, as well.
Jim: Yes, that's exactly how I feel.
Rachel: I think the fact that you feel that way, is in and of itself, enough to begin with, because sometimes, like my father, bless him, loves a guilt trip. Wasn't the kind of person that was like, “let me not burden you”, you know, was very much the kind of guy that's like, ”I feel like you're…”
Yeah, exactly. “I feel like you're supposed to be burdened by me, so if you could give up everything else, you know?” So, my mother on the other hand, was fighting something that was — really had a grip of her and she was always trying her best. And in that environment, you're like: “I'll do whatever you want, to be here for you.” So I think that outlook, in and of itself, is, like, amazing for somebody. The only thing that I would say that has been incredibly helpful. My mother was like this, but she kind of couldn't do as much. My father was completely the opposite of this. Is like, do what you can to help them to do what they need to do. For example, with my father, would not have a conversation about even thinking about (a) getting people in during the day, on the days that I couldn't be there, just for me to have somebody to check on him. No, not interested in opening the door to somebody. “No, I don't want anybody to be here. I only want you to be here.” So that then puts an incredible amount of pressure on you as a person, because you're like, “Okay, well, should I be going to work? Should I be there with you all the time? Is it okay? You know?” And then, of course, at the end of the conversation, when he finally let somebody in, and he thinks they're lovely, and he's like, “why didn't we do this before?” And I'm like: “Thanks for the nine years of punish.” So it's taken me to get to the point where you're like: “You see, I'm not going to send a serial killer in here to look after you. I'm not, like — just help me help you.” Yeah and communication in that regard, like you feel so connected to your parents, like you seem like a very open, honest person. I didn't have a huge amount of communication with my parents. I wish my father had been like: “Oh I'm really struggling with this”. Like the moments I feel we felt most connected was when he would tell me: “I'm scared”.
Jim: And when he needed you, I suppose.
Rachel: Exactly. And there were a few moments where he would be really vulnerable, and he would show me he's really scared.
Jim: That's what breaks my heart with a lot of it, and some of the stories you told us about with your dad and seeing your dad when he was so sad at times, you know, and frightened. And as a child, then you have to become the adult in the situation and comfort them. I think that's so sad to hear about and to watch, for people.
Rachel: I know and I get that you wouldn't want to do that like to your kids, because I feel the same way — you feel like you want to protect them. But at the same time, it's — it is a privilege. It is a privilege. It really is — like and I feel like your kids would feel the same thing. You want to be the person that is there for somebody in this situation that they love, like it's genuinely one of the things I'm most proudest of doing in my life. So I think that's an important thing for your kids to have.
(music plays)
Hamish: Tell me about your dad.
Rachel: Oh, good ol' Ronnie C. Mate. Mate.
Jim: God, dementia gave you a good kicking didn't it?
Rachel: I tell you what! Oh! Sometimes he would behave in certain ways and people would be like: “Oh, it's the dementia”. I'm like: “Mate, he’s been like this since 1937, so no, it's not the dementia.” Um. Yeah.
Hamish: It's funny you say that, because I'd tell Mum about — my parents were not together for a very long time — and I'd tell Mum about things Dad was doing or saying, or what they were saying about the illness. And Mum was like: “He was like that when I was married to him.”
Rachel: That's the thing. They are fundamentally still the same person, you know, and some of the stuff, like my dad...
Jim: You do have to use it to your advantage, though, sometimes, because I do say to Ty “it's the Alzheimer’s”, you know, when it's appropriate.
Rachel: Yes, so my dad...
Hamish: He's gonna hear this.
Rachel: Truly. But my Dad, I mean, right until the bitter end, could guilt trip like nobody's business. And I'm like “Oh, you're forgetting a lot of stuff, but not how to really dig the healing on the guilt, you know?” So, yeah, Dad, it was almost, honestly, the day that my Mum passed away. I said my dad picked up the slack. And, you know, at that point, I think he was more aware of the fact that he was kind of not managing things, but also it was quite hard, because my dad was very much a ‘stick my head in the sand’ kind of person, so I couldn't really work out whether “are the bills not getting paid because Dad just loves to shut the door on life and go like, that'll sort itself out”, or are they not being paid because Dad doesn't know how to pay the bills? So yeah, then we sort of went through the process of getting him tested and that kind of stuff. And his was a much quieter experience than my mother. Like, I mean, he was always a very solitary person and liked his own company. And when we, even when we moved him into the home, everybody — the people kept trying to pull him out and get him to do activities, because, of course, you know, they don't want anybody sitting in their room. And I was like, actually, that's the happiest place that he could be, you know. And sure enough, anytime that they dragged him out there, he'd turn around and say to them, “Why have you brought me out with all these old people?” It was like: “Look in the mirror mate.” So he was kind of quiet. It was really more a difficult thing for me emotionally, because he was just a hard person to care for. And I think sometimes when you're looking after people that you love, relationships are complex. You know, it's not like, “oh, wow, we've had such a close, wonderful, bonded relationship for years, and now I'm stepping in to do for you what you so definitely did for me.”
Jim: That’s the dream.
Rachel: You know, sometimes you're stepping into a situation where you're like: “Well, I'm turning up and I'm going to do this for you. But sometimes I wonder — ‘do you deserve it?’”
Yeah. Exactly.
Hamish: Well, there's, there's obviously a lot going on here, different parents, different kinds of relationships with both of them, and obviously you're trying to make sure that you're looking after yourself in the midst of all of it. How did you cope? How did you get through it all?
Rachel: Honestly, I do feel like I have a very high threshold for what I can manage. What's the like ‘functioning alcoholic’ version of this?
(Laughter)
Hamish: You’re a functioning carer.
Rachel: Yeah, I'm a functioning carer. You know, like, I just can keep getting things done. I think if they just need to happen, well, it just needs to happen, you know. And that's not to say that I'm not exhausted, but I don't think — I'm not really one that sort of sits there and wallows in the situation and is like, it is what it is, you know. And there are also, you know, as I mentioned, there are benefits to doing this. And I think the values of the person that I am. I do remember having a conversation with my therapist. I had many over the years as I was going through this time. And that, I would also say, is one of the things that got me through massively.
Hamish: Getting support?
Rachel: Getting support. A hundred per cent.
Hamish: Which Dementia Australia provides, this incredible support line that you can call 24/7 and you can get access to counselling.
Rachel: Yes, having a professional to talk to throughout all of this period, for me, was really important, particularly the stuff with my dad, because I found, because that was my responsibility — I was the sole person looking after all of that stuff. But I remember I had a couple of conversations about opportunities to potentially move: for work, for life, for those things. And honestly, I said to my therapist: “Like, I do feel like I'm really giving up a lot here, and I don't have any — like I don't have much choice in terms of what I can do.” Like if I've had some great opportunity open up overseas…
Jim: Couldn’t really take it.
Rachel: I couldn't really take it. To be honest. I couldn't really go on holidays for a long time because I didn't have anybody here to look after Dad while I was gone. So I didn't really go anywhere. And there was a part of me — I said to him, like — I feel like he doesn't deserve it sometimes, like, does he really deserve me canning this part of my life?
Jim: Mmm.
Rachel: And she said something —
Jim: It’s the prime... that prime time.
Rachel: Yes. Yes. And she said something to me that really, really resonated, and that was: “It's not about what he deserves. It's about what your values are. And your values are, you could not leave somebody like this and go and do something like that, because you would never forgive yourself for doing that. So it doesn't matter that he doesn't deserve it. It doesn't matter that he drives you nuts. It doesn't matter that he makes you guilty every day for doing this. You are the person that wants to keep showing up, despite that and to say: ‘I can keep going through this’.”
Jim: In hindsight now, looking back, would you have changed anything?
Rachel: No, nothing. Nuh. I'm really glad for everything. I cannot — the one thing I cannot deal with in my life is regret, because you can't do anything about it. You can't go back in time. And I was like, I cannot regret anything, because then I will hang on to that for the rest of my life. But if I give this 150 per cent and they both go, I can move on with my life, and that is what has happened. I just feel like it is a privilege. I honestly, I don't have a single regret. I don't wish. I mean, do I wish I had a different relationship with my parents, maybe, but like we could have — maybe we'd never talk and I wouldn't have any relationship with them, and things could have been fundamentally different. Like I did have a difficult time with both my parents because of this, but it was — it connected us in a way that I might not have ever had if they were both well.
[Music plays]
Jim: Thanks again to Rachel for sharing her experience of caring for her parents.
Hamish: Yeah, I didn't expect Rach to get quite so emotional. I mean, I knew it had been a tough time for her, but, like, she's such a together person. When I see her at work, you never really contemplate how much someone's dealing with something like this, outside of work hours.
Jim: She just lifts you up — just the way she talks, you know?
Hamish: And be able to keep her sense of humour throughout it, as well.
Jim: Absolutely, I think you've got to hold on to that humour the whole way through.
Hamish: Yeah, critical.
[Music plays]
Hamish: Now, if you can really relate to Rach's story and you want some practical advice about caring, there's actually a bonus episode which goes with this episode.
Jim: You'll hear from Kristin, one of our advisors on Dementia Australia's free helpline. Kristin and her colleagues are always keen to help out and the helpline is available 24/7, so if you need someone to talk to...
Hamish: …they're the people to ask. But you can also find that bonus helpline episode wherever you listen to podcasts, or on the Dementia Australia website. You can also call the helpline directly for tips and advice. It's 1800 100 500. That’s 1800 100 500.
Jim: Make sure you're following Hold the Moment, so you don't miss any of our episodes on caring. You can also go back and listen to series one, anytime.
[Music plays]
Jim: 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: …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 design by Ryan Pemberton. A special thanks to the whole team at Dementia Australia and to everyone who shared their stories on this podcast.
[Music plays]
[END of recorded material]
About the episode
Rachel Corbett spent most of her 30s supporting and caring for her parents, who both lived with dementia. She calls that period of her life ‘a hellish juggle’ but she was determined to set up her own future and career, while taking on caring duties.
Watch the interview
In this video we go one on one with our podcast guests
Transcript
[BEGINNING OF RECORDED MATERIAL]
Rachel: I just feel like it is a privilege. It connected us in a way that I might not have ever had if they were both well. You want to be the person that is there for somebody in this situation that they love. Like, it's genuinely one of the things I'm proudest of doing in my life, so I think that's an important thing for your kids to have. I'm Rachel Corbett and I am… what am I? I'm a media presenter; I'm a podcaster; I'm somebody who runs podcast networks; I'm a 'jack-of-all-trades’.
Hamish: And a mum.
Rachel: And a mum, I'm a mum, that's true.
Hamish: Tell us what your relationship is with dementia.
Rachel: So, both my parents have had it in different forms. My mum had Alzheimer's, my father had Lewy body dementia. Prior to that, I hadn't really had any experience in dementia at all, but I feel very much like it has become a big part of my life. But there's still a lot I don't understand about it, which considering it's taken up over a decade and I've been heavily involved in that, that surprises me, you know?
Hamish: Yep, and it's, for you, obviously it’s been a big part of your life. Has it been overwhelming at times? What's the impact it's had on your life?
Rachel: Massively overwhelming. Yeah, I think my situation with my mum, she had Alzheimer's and it was very, at the end, it was really bad. Like it was, you know, I say often people think it's like, "Oh, I guess you just forget your car keys." And it was just so much more than that for my mother and one of the hardest things was that she was still very present, right until the end. So, the way that I would feel about it when I looked at her was that like I could see her in there. It was almost like I was watching this person who was like, trying to get out, and she was far away from me distance-wise, even though she was standing right in front of me. But she knew me, and she knew that something like, what was happening to her. Not, she couldn't articulate it, she couldn't speak about it, but she knew something wasn't right the whole way.
Jim: So, you could almost feel her frustration, you could feel it.
Rachel: Yes, yes, every single time I saw her, it was that sort of, 'get me out of here’ feeling.
Jim: This isn't me.
Rachel: This isn't me, and that to watch with somebody that you love, and you can't do anything about that, I think I found really, really hard. Yeah.
Jim: Just take us back a little bit to when you first started to notice some of the signs that things weren't right with her.
Rachel: Yeah. She kept it a secret from me and my sister. She knew something wasn't right earlier than she let anybody kind of know, so we didn't really know a lot. I remember asking her to drive me into work one day and she was like, "Oh, I can't, I can't do that." I was like, "Why? You're available, you have a car, you know how to drive, so, why won't you just get in the car and drive me to work?” And she kind of couldn't give me an explanation for why but in her mind, she was like, “I don't know if I can get there and I don't know if I can get back”, you know? And “I'm just aware that something is happening here, and I'm just not confident anymore.” So, little things like that would happen, but she wasn't kind of saying, "I don't feel confident." Yeah, and when your, you know, mum just won't drive you to work and you think, "Gee, why, what is your problem?"
Jim: What have I done?
Rachel: Yeah, exactly. “Why, don't you love me anymore? like, what's your issue?” It's those kinds of things that you just can't kind of work out why they're sort of doing things, but from their perspective, it's all a lack of confidence.
Jim: Yeah.
Rachel: You know, it's just that they don't feel confident doing things anymore and they also don't want to say that.
Hamish: Once you did know, what changed? How did the dynamic shift?
Rachel: Ultimately with my mum, her and I had had, not a difficult relationship, but I mean it kind of happened while she was sick as well. She did like to keep up appearances and there were some things in our life that I really wanted her to be honest with me about, just in terms of my experience of certain things because I had, you know, I really just wanted her to, kind of…
Jim: Open up.
Rachel: Open up, take some accountability for some things. You know, some stuff had happened in our life and I felt like I was kind of speaking to a different script than she was and so, in my mind, I'm like, “did this, like, am I going crazy here? like, I feel like…”, and so she wouldn't kind of own up to a lot of stuff and that, and I found that very frustrating. And then, when she became, when she, you know, realised, okay, this is serious, this is something, she really started to open up to me about some things that we'd never talked about, were all I really needed to hear from her really, because I think she realised, “Okay, what's the point?” You know, like, let's pull the charade away, let's have a real conversation about this, and so for me, I remember she actually had that conversation with me the night before I was going to move overseas for two years, and the only reason I was going overseas was because of a lot of these things. I just wanted to run away, really.
Jim: Yeah.
Rachel: And she had this conversation with me, and it was like, “now I don't need to go and I'm about to get on a plane tomorrow.” And so, I think that distance was hard for me then because all I wanted to do was be around her and by the time I got back, you know, time, things are different. But as things worsened, we spent a lot of time together, and it was really healing for her and I. It changed me fundamentally as a person. I think a lot of the communication issues that I'd had early on where, you know, some of the things that I felt were true weren't being kind of validated. That makes you think that you’re the problem, as a person and then when that validation happens and you're like, “Okay, it's not me, like you see me, like, we experience this together, like, you are on my side.”
Jim: That means a lot and do you think that that diagnosis sort of made her review life in itself and sort of, speak to you differently than she previously had? Like, you said, keeping up this, this facade a little bit.
Rachel: Yeah.
Jim: And let her put a guard down because she realised ‘shit this is it’, you know?
Rachel: Yeah. I do think that happened to her, and I'm so grateful, honestly, that it did happen because, it really did change our relationship, it changed me. She gave me the biggest gift, like I feel after she passed away, coming through that time, I've never been happier, honestly, like, because it really helped me to see myself differently. And I also think being with somebody like that, you know, who needs help and who is afraid and who feels safe around you it makes you start to feel really positive about yourself, too.
Jim: Yeah.
Rachel: Because you can be that for that person.
Jim: So, there was a silver lining, really.
Rachel: Yes, definitely.
Jim: Brought you closer in a way.
Rachel: Definitely. I do think, I am very, very grateful for that time. I wish to get that my mother didn't have to experience what she did because I think I benefited from that relationship and that experience by what she gave me and…
Hamish: Just explain that, what do you mean?
Rachel: I just mean because how it adjusted our relationship. How it allowed, gave me the opportunity to be there for her in that way. I think that was a real privilege and it just, the way it made me feel about myself. I came out the other side of that feeling, just grateful to have being able to be there for her.
Jim: See these things are so emotional, they're so raw. We should have had a big box of tissue here.
Rachel: I know, right?
Jim: Which we did not get to do, Rachel.
Rachel: I'm, and I'm, I'm a blubber. I love a cry. I love a cry.
Jim: I think that, I think that...
Hamish: When we work together and they have to keep a box of tissues on standby for her, and a makeup artist.
Rachel: I know, I know.
Jim: Would be a nightmare for her.
Rachel: Yeah, truly.
Hamish: Tell me about what you actually watched happen to your mum over time?
Rachel: To be honest, it was kind of slower than I thought. You know, I remember people saying, you know, it's probably about 10 years, between when somebody's diagnosed and when they pass away, and even close to those 10 years, I thought, this doesn't seem like somebody who's going to die in two years. You know, and then at the end it kind of progressed pretty rapidly, but I mean the timeline's a little fuzzy, but towards the end, it just really spiralled pretty quickly and, you know, it was a lot of, she became quite difficult to keep at home. My stepfather was having to call the ambulance quite a lot. She was very violent. You know, she had not had a great upbringing and a lot of those memories were coming back to her. You know, when I would spend time with her, she would sometimes take my hand and, you know, and say things to me and I was like, "Oh, you think you're a, you think you're a little kid again." She was kind of having a lot of memories from that time and that was also really hard, I think, because, you know, to be taken back to a time for her which was so difficult, and to have no control over. It's not like you say, "You know what? I'll go and distract myself with something else." Like, your brain is ripping you back into that time, and you are stuck there and I think for her, that was really hard. So, seeing some of that, that stuff was really tough. I think just watching the out-of-controlness of it for me, you know, my father's situation was very different. It was a quieter experience but my mothers’ was very aggressive. It was very much like she was being ripped around in this situation. It was physical. She, you know, would kind of bundle up in the corner and sort of rock back and forth. She would be violent. She would, you know, she really did feel like somebody who was just being...
Jim: Possessed almost.
Rachel: Torn from left to right and it was just stuck in the middle of it.
Hamish: Was your mum violent towards you?
Rachel: Yeah, yeah. She didn't mean to be.
Hamish: Yeah.
Rachel: In her mind, I think it was just like, she, it was like, it all felt involuntary, you know? It all just felt like she was just doing whatever her body was telling her to do and you could see that she regretted it. You know, she knew who I was, she didn't want to be doing that to me but that was kind of how it was manifesting for her.
Jim: And often the nearest and dearest is the one that you lash out at.
Rachel: Of course.
Jim: Do you, did you have any particular techniques that you thought were good as a calming influence on her at those moments when she was at her most stressed and angry?
Rachel: I'm pretty good at a comedic left field, you know, like... In the weirdest of terrible moments, I'm pretty good at going out with something that.
Hamish: The Gallows humour.
Rachel: Yes, the Gallows humour.
Jim: That's good.
Rachel: And my mum was very much the same type of person. My mum, and sometimes, depending on where she was, it would work.
Jim: Yeah.
Rachel: And a lot of times in those moments, you know, I would say something and she still, she still had humour till the end.
Hamish: I don't know how you think about this now. I guess, you know, when we were recording this, my dad died just a few weeks ago and I think I'm only just starting to maybe recognise the amount that this was weighing on me emotionally and mentally. I'm really only just in the process, you know, right at this minute, taking stock of all of that. How do you, with the benefit of some hindsight, at least in relation to your mum, think about it?
Rachel: I don't how I still managed to get everything done because one of the things I thought, and a lot about my mum and my dad, is that my mum was sort of, you know, it was late twenties and through my thirties. My father was through my thirties into my early forties.
Jim: God, you had a lot.
Rachel: Yeah, I used to say a lot during that time. I am living the life of a 60-year-old right now, because I'm taking, you know, I'm taking care of both, you know, I was the only person here for my father. My mum did live in a different state and had care, but I was, you know, constantly kind of there and thinking about her, you know? And I think that mental energy, I feel like the best night's sleep I had was the night she passed away because I felt like I could just relax.
Jim: Yeah.
Rachel: She's okay. She's all right. Every day, up to that point, I didn't feel she was safe.
Jim: In turmoil.
Rachel: I didn't feel she was okay. I didn't feel like, you, I knew she wasn't okay. And, you know, so that was really hard because you're also feeling incredible guilt for being away and not being there a hundred percent of the time. But I was really trying with both my parents, to manage my life as best I could through that time, because I was conscious and I had seen a lot of people in that situation where they do give everything up and I feel like that is an amazing thing to do, but I was conscious that I was in, I'm in my late twenties.
Jim: Yeah.
Rachel: My early thirties. My career is not established. Financially, I'm, I need to build stuff up. I want to have a family. At that stage I was like, I want to try and, you know, meet somebody so I was like, I have to try and do all this stuff.
Jim: This is crucial stuff.
Rachel: Yes, it's crucial because what I...
Jim: You get this wrong, it can...
Rachel: That's it.
Jim: … just change everything.
Rachel: And I did not want to get to the end of my mum passing and my dad passing and think, now I have to start and resent them for that time. I want it to be like, it's fine. This has been a really hellish juggle for me that I've almost not made it through, but it has been worth like doing everything at the same time because then when both of them passed away, I was like, “Okay, I've done everything I could there”, but also, I'm like, “I can go on, I can earn an income, I can have my child”, I can, you know, do all that stuff and I think after coming through 10 plus years of that, I needed a bit of time. I really wanted to have a kid but I was like, I actually need a few years off, because I've spent over a decade looking after other people and I don't want to look after somebody else, right now. And, you know, if I had not have done all that stuff during that time, I probably wouldn't have been financially able to have this kid by myself, you know, there was a lot that I kind of felt like I had to keep 'up in the air' to make sure that I didn't crash when it all sort of ended.
Jim: You've had a lot on your shoulders.
Rachel: Yeah. It's been 'effing’ exhausting I've got to be honest, it's so tiring. I, like, it is a lot and there is a real sense of relief. You feel terrible for saying that but honestly, after my mum passed, I was relieved mostly because it was just like, that was really harrowing for her. For my father, like, I had spent the last, you know, eight years of my life, five years when he was in my care, still at home but in my care, you know, and then when he was in care, it was exhausting.
Hamish: How do you suggest Jim thinks about this? Because he's worried about his beautiful daughters and his son and there's a lot of love and there's this desire to help but then there's also a desire to not burden people. I don't want to speak for you, but that's what you talked about.
Jim: We've talked about this together.
Hamish: And Ty, your husband as well.
Jim: Yeah, that's exactly how I feel.
Rachel: I think the fact that you feel that way, is in and of itself enough, to begin with. Because sometimes, like my father, bless him, loves a guilt trip, wasn't the kind of person that was, "let me not burden you," you know? Was very much the kind of guy that's like, "I feel like you’re..."
Jim: Nor can you…
Rachel: Yeah, exactly, "I feel like you're supposed to be burdened by me." So, if you could give up…
Jim: Yeah, payback.
Rachel: … everything else, you know. So, my mother on the other hand, was fighting something that was really had a grip of her and she was always trying her best and, in that environment, you're like, I'll do whatever you want to be here for you, so I think that outlook in and of itself is like amazing for somebody. The only thing that I would say that has been incredibly helpful; my mother was like this but she kind of couldn't do as much. My father was completely the opposite of this, is like, do what you can to help them t
Jim: Help you.
Rachel: ...do what they need to.
Jim: Yeah, yeah, yeah.
Rachel: And, for example, with my father, would not have a conversation about even thinking about getting people in during the day, on the days that I couldn't be there just for me to have somebody to check on him. No, not interested in opening the door to somebody. “No, I don't want anybody to be here, I only want you to be here.” So, that then puts an incredible amount of pressure on you as a person, because you're like, “Okay, well should I do, should I be going to work? Should I be there with you all the time? Is it okay?” You know? And then of course at the end of the conversation when he finally lets somebody in and he thinks they're lovely and he's like, "Why didn't we do this before?" And I'm like, “Thanks for the nine years of punishment.”
Jim: It's all your fault.
Rachel: It's just taken me to get to the point where you're like, “You see, I'm not going to send a serial killer in here to look after you. I'm not going to, like, just help me, help you”. And communication in that regard, like you feel so connected to your parents. Like you seem like a very open, honest person. I didn't have a huge amount of communication with my parents. I wish my father had been like, "Oh, I'm really struggling with it." Like the moments I feel we felt most connected was when he would tell me "I'm scared."
Jim: And when he needed you, I suppose.
Rachel: Exactly, and there were a few moments where he would be really vulnerable and he would show me he's really scared.
Jim: That's what breaks my heart with a lot of it, and some of the stories you told us about with your dad and seeing your dad when he was so sad at times, you know, and frightened. And as a child, then, you have to become the adult in the situation and comfort them. I think that's so sad to hear about and to watch for people.
Rachel: I know, and I get that you wouldn't want to do that like to your kids because I feel the same way, you feel like you want to protect them, but, at the same time it's, it is a privilege. It is a privilege.
Jim: Yeah.
Rachel: It really is. Like, and I feel like your kids would feel the same thing. You want to be the person that is there for somebody in this situation that they love. Like, it's genuinely one of the things I'm most proudest of doing in my life so, I think that's an important thing for your kids to have.
Jim: Yeah.
Hamish: Tell me about your dad.
Rachel: Oh, good old Ronnie C, mate, mate.
Jim: God, dementia gave you a good kick in, didn't he?
Rachel: I tell you what, sometimes he would behave in certain ways and people would be like, "Oh, it's the dementia." I'm like, "Mate, he's been like this since 1937". So no, it's not the dementia. Yeah, good old Ronnie C.
Hamish: It's funny you say that, because I'd tell mum about… my mum, my parents were not together for a very long time, and I'd tell mum about things dad was doing or saying or what they were saying about the illness and mum was like, "He was like that when I was married to him."
Rachel: Correct, that's the thing. They are fundamentally still the same person, you know and some of the stuff, like my dad.
Jim: You do have to use it to your advantage though sometimes, because I do say to Ty, "It’s the Alzheimer's, you know" when it's appropriate.
Rachel: Yes, so my dad...
Hamish: He's going to hear this.
Rachel: I know he is... truly, but my dad, I mean right until the bitter end, could guilt trip like nobody's business and I'm like, "Oh, you're forgetting a lot of stuff, but not how to really dig the heaping on the guilt, you know?" So yeah. Dad, it was almost honestly the day that my mum passed away, I said, my dad picked up the slack.
Hamish: Yeah, right.
Rachel: And, you know, at that point, I think he was more aware of the fact that he was kind of not managing things, but also it was quite hard, because my dad was very much a 'stick my head' in the sand kind of person. So, I couldn't really work out whether are the bills not getting paid because dad just loves to shut the door on life and go like, that'll sort itself out or are they not being paid because dad doesn't know how to pay the bills. So yeah, then we sort of went through the process of getting him tested and that kind of stuff, and his was a much quieter experience than my mother. Like, I mean, he was always a very solitary person, you know. Liked his own company and even when we moved him into the home, everybody, the people kept trying to pull him out and get him to do activities because, of course, you know, they don't want anybody sitting in their room and I was like, “Actually that's the happiest place that he could be, you know?” And, and sure enough, anytime…
Jim: He just likes it.
Rachel: …that they dragged him out there, he'd turn around and say to them, "Why have you brought me out with all these old people?" It's like, look at the mirror mate, so he was kind of quiet, it was really more a difficult thing for me emotionally because he was just a hard person to care for and I think sometimes when you're looking after people that you love, relationships are complex. You know, it's not like, “Oh wow, we've had such a close, wonderful, bonded relationship for years, and now I'm stepping in to do for you what...
Jim: That's the dream, yeah.
Rachel: …what you so definitely did for me”, you know. Sometimes, you're stepping in to a situation where you're like, "Well, I'm turning up and I'm going to do this for you" but, sometimes I wonder, do you deserve it? You know?
Jim: Would you do it for me?
Hamish: Yeah, exactly, but in terms of that juggle, you know, you'd gone through it with your mum, and in your twenties through to your thirties. This is now the back end of your thirties, into your early forties. Around the same time, you're bringing a human into the world; you've got a number of pretty big jobs that you maintained.
Jim: You should have put one of those clown bows on and doing that juggle with your big shoes.
Hamish: But like, how did you cope? It's a lot.
Rachel: Honestly. I don't, I do feel like I have a very high threshold for what I can manage. What's the like functioning, alcoholic version of this?
Jim: Yeah.
Hamish: You're a functioning carer.
Rachel: Yeah, I'm a functioning carer. You know, like I just can just keep getting things done. I think if I just need, if they just need to happen, well, it just needs to happen, you know? And that's not to say that I'm not exhausted, but I don't think, I'm not really one that sort of sits there and wallows in the situation and is like, “it is what it is, you know?” And there are also, you know, as I mentioned, there are benefits to doing this and I think the values of the person that I am, I do remember having a conversation with my therapist; I had many over the years as I was going through this time, that I would also say, is one of the things that got me through, massively.
Hamish: Getting support.
Rachel: Getting support, a 100%, like...
Hamish: Which Dementia Australia provides, this incredible support line that you can call 24/7 and you can get access to counselling through that.
Rachel: Yes, having a professional to talk to throughout all of this period for me was really important, particularly the stuff with my dad, because I found, because that was my responsibility I was the sole person looking after all of that stuff. But I remember I had a couple of conversations about opportunities to potentially move, for work, for life, for those things, and honestly, I said to my therapist, like, “I do feel like, I'm really giving up a lot here, and I don't have any op… like, I don't have much choice in terms of what I can do.” Like, I could, if I've had some great opportunity open up, in overseas…
Jim: You couldn't really take it.
Rachel: I couldn't really take it to be honest; I couldn't really go on holidays for a long time because I didn't have anybody here to look after dad while I was gone. So, I didn't really go anywhere and there was a part of me, I said to him like, “Oh, I feel like it, he doesn't deserve it sometimes.” Like, does he really deserve me canning this part of my life? And she said something...
Jim: And it is the prime, that prime time.
Rachel: Yes, yes, and she said something to me that really, really resonated and that was, “It's not about what he deserves, it’s about what your values are and your values are, you could not leave somebody like this, and go and do something like that because you would never forgive yourself for doing that.” So, it's doesn't matter that he doesn't deserve it, it doesn't matter that he drives you nuts, it doesn't matter that he makes you guilty every day for doing this. You are the person that wants to keep showing up despite that, and to say, I can keep going through this.
Jim: In hindsight now, looking back, would you have changed anything?
Rachel: No, nothing. Nup. I'm really glad for everything. The one thing I cannot deal with in my life is regret because you can't do anything about it. You can't go back in time and I was like, I cannot regret anything, because then I will hang onto that for the rest of my life. But if I give this 150% and they both go, I can move on with my life and that is what has happened. I just feel like it is a privilege. I honestly, I don't have a single regret. I don't wish, I mean, do I wish I had a different relationship with my parents? Maybe, but like, we could have, maybe we'd never talk and I wouldn't have any relationship with them and things could have been fundamentally different. Like, I did have a difficult time with both my parents because of this, but it was, it connected us in a way that I might not have ever had, if they were both well.
Hamish: On that note, I have to wrap this up.
Rachel: No, no, I was enjoying it.
Jim: Why did it go so quick when the guest was so lovely.
Rachel: I know right, I’ve cried so much.
Jim: You've been amazing.
Rachel: I'm like, I've run out of tissues.
Hamish: Thanks Rach.
Rachel: My pleasure.
Jim: Thank you.
Jim: Hold the Moment is a podcast from Dementia Australia produced by Deadset Studios.
[Title Card: Hold the Moment
Call our National Dementia Helpline
For 24/7 support
1800 100 500
End of Title Card]
[END OF RECORDED MATERIAL]
Bonus episode
Transcript
[BEGINNING of recorded material]
Jim: Caring for someone with dementia isn't easy. You're balancing emotional and physical challenges every day. It can be difficult to know where to start and what support is out there, but it's not something you have to figure out all on your own. Hi, I'm Jim Rogers, and this is Hold the Moment, a podcast by people living with dementia and their families. In our first episode of this season of Hold the Moment, you met TV presenter and podcaster Rachel Corbett, who talked us through what it was like caring for not just one, but two parents with dementia. If you haven't already heard this episode, download it and have a listen now. Rachel talks about the importance of getting help as you're caring and help is at hand via Dementia Australia's free helpline. You can speak with trained counsellors from the helpline, like Kristen.
Kristin: I'm Kristin, an advisor on the National Dementia Helpline. When you reach out to the helpline, you'll connect to an advisor, like me, on the telephone, by webchat or email.
Jim: In this bonus episode, Kristin breaks down what you need to know in your new caring role.
Kristin: You might be wondering, if you are a carer. If you've got a loved one who has a diagnosis of dementia or mild cognitive impairment — whether you're a family member, a neighbour or a friend — you could be considered a ‘carer’. As a carer, you might reach out to the helpline for lots of different reasons. Initially, you might reach out because you've noticed some changes in a loved one, or maybe you're wondering how to make adaptations around the house to help your loved one living with dementia to navigate through the home easier. Once I even had someone call the National Dementia Helpline to ask about a good birthday present for a loved one who was living with dementia, because it was really important to them to find something that would work. There really isn't anything too small or anything too big to call the helpline about.
If you're looking for a place to learn more about the changes that happen for a person living with dementia, we can connect you to some workshops and webinars. We might also suggest support such as Carer Gateway, who can help support all carers in navigating the systems and the needs that they've got and trying to match them with supports as well. Everyone's experience is different. Even though you might have your own feelings and your own way of approaching things, there are other people out there who are also caring for a loved one living with dementia and they might also understand a little bit of what you're going through.
Jim: If you've got any questions about anything you've heard on this episode, you can call the free National Dementia Helpline on 1800 100 500. You can also reach out to an advisor through webchat or by email. Both of those options are available on Dementia Australia's website — dementia.org.au. Their trained advisors are available 24 hours a day, every day of the year. And look out for more episodes of Hold the Moment that will help you, as a carer.
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What every carer needs to know
Your guide to services available to you, now that you’re caring for someone with dementia.
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.