Hold on to joy

Managing grief as a carer

Hold on to joy: Managing grief as a carer

Transcript

[BEGINNING of recorded material]

Speakers: Kevyn Dementia Australia Dementia Advocate, Hamish Macdonald, Jim Rogers, Mara - Dementia Australia, Jenny

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.

Jenny: My husband was Noel Hackett. Noel was a priest. I was a Good Samaritan Sister.

Jim: This is Jenny. She cared for her husband Noel, after his diagnosis of younger onset Alzheimer's at 58 years old.

Jenny: I made final vows a year after meeting Noel. We didn't imagine our lives taking the direction that they did. Noel said to me one night, everyone has something in their lives to contend with. This is ours.

Hamish: Jenny and her husband Noel experienced grief in different ways during his dementia journey, and now, since Noel's passing, Jenny is managing a different type of grief altogether. G'day, I'm Hamish Macdonald.

Jim: And I'm Jim Rogers. I'm living with younger onset Alzheimer's.

Hamish: This is Hold the Moment. A podcast from Dementia Australia, by people living with dementia and their families. Grief is a part of every carer's story, but it looks different for everyone, so it can be hard to know what to do with grief — if anything.

Jim: You lost your dad recently, Hamish. What did your stages of grief look like, both during the time you were caring for him and then when he died?

Hamish: Pretty different, to be honest, Jim, I think I found the period before he died much more stressful than what it was when he actually died. I think by the end of it, I think most of us felt a fair degree of relief, if I'm really honest. I didn't cry... Just kind of felt fairly peaceful that he'd finally said goodbye to it all. He was so unhappy towards the end. But I think the stuff that we all dealt with as a family while he was still alive, I wouldn't have thought of it as grief. It's only through doing this season of the podcast that I've started to understand that maybe some of those feelings, those dark feelings, difficult days, angry days, were actually what grief looks like. And Jim, there's another part of your dementia story, which you haven't really shared with us before. You've told me a little bit about it, but actually, your mum's been living with dementia, and she died a few weeks ago.

Jim: Yeah, and I felt much the same as you, Hamish. It was so sad and so sad to see somebody that's going through that end of their life, but it was a sense of relief that she's at peace now. So it was a sad ending, but it happens to everybody.

Hamish: What's it been like for you, seeing your mum living with dementia, knowing that you're also living with dementia? She was obviously more advanced. She was much older in age as well.

Jim: Yeah, it was quite confronting to see what actually happens in those final stages. And to be fair, my sister has been the main carer, and she has shouldered the brunt of most of it, but it was still very sad to see somebody so strong and so motivated, sort of slowly drift away into such a fragile person. So it was quite sad, really, but I'm just so happy she's with my dad now and at peace.

Hamish: How you doing?

Jim: Yeah, I'm good. It's good to see you.

[Hamish and Jim laugh together and music plays.]

Hamish: Well. On that note, a great first step for carers is to try to understand grief a little bit better. Before you hear more of Jenny's story, let's meet Mara, a counsellor from Dementia Australia. She's spoken to hundreds of carers about their grief and how to manage it.

[Music plays.]

Mara: Conversations with carers don't normally start specifically with naming the grief, because often people don't realise that they're grieving. So carers come to counselling for all different kinds of reasons. It can be that they're struggling with emotions; they might be confused, they might be worried about the future. It's often in getting to know someone and talking with them, and exploring their story, where it may become evident that a lot of what they're going through actually is part of their grief process.

Jim: So how might grief present in the life of a carer?

Mara: Well, I often talk in terms of grief ‘showing up in disguise’. And I call it that because people often think grief is just sadness, but grief can be so many different types of emotions. Grief really is just the process by which humans get used to change. And when things change, we have emotions about it. We have thoughts about it. And these can range from confusion — it can be loneliness. People might be angry. They may have a lot of questions. They might stay really busy. They might have to-do lists. They might go above and beyond, doing a lot for their loved one. That might be a grief expression. It can show up in our bodies, so people might feel more tired than usual; they may feel ‘heavy’. And it can also show up in the types of thoughts we have. So carers may have, perhaps, questions about the future and thoughts like: “What's going to happen?” “What is this going to be like?” “How are we going to manage?” “What's going to be our future?”

Jim: What can carers understand about the person they love living with dementia? Are they grieving too?

Mara: Absolutely! Yes. And I think that that often gets discounted and missed. It can be, I guess, a form of disenfranchised grief for the person living with dementia, because we don't recognise that they're grieving too. We grieve the loss of things that are valuable and important to us, and that includes our perception of who we are, our identity, who we thought we were, how we thought our future was going to go. So a person living with dementia — all of those things get called into question and the person will themselves also go through a grief experience, as they start to change with the condition.

Jim: So grief is more complex than just a feeling you have when somebody passes away. So what is ambiguous loss?

Mara: When we refer to ambiguous loss, it's a particular type of loss where what's changed, what's different, what we feel we've lost, is hard to define. It's not quite clear. We don't really know how to describe it. There's an ambiguity to it and it often shows up in the counselling room when someone will say to me: “She's Mum, but not Mum.” There's so many things that are quite different. When we talk about anticipatory loss, this I kind of refer to as ‘grieving in advance’. We start to respond to a loss that we think is going to happen in the future. When I do counselling for people with dementia, it'll often be that they are worried about a time when they might not remember their friends and family. With carers, the anticipation of: “What are we going to do in the future?” “How am I going to keep caring for my loved one?” “What decisions are we going to make?” “What's going to happen to our family?” “What's our life going to look like?” So people are kind of scanning ahead and it's a form of preparation as well — like humans are designed to think about: “What threats are coming in the future, so that I can get ready for them now?”. So it really does serve like a coping mechanism purpose. I might gently remind people that a lot of a lot of things we anticipate might happen in dementia are actually informed by fear-based cultural narratives of what we are told dementia is like. So people are responding to stories they've heard or things they've seen — books, movies — so the way that it gets represented in culture starts to influence that anticipatory loss. So I try to remind people that,that might not happen.

Jim: That is just so true. Everything you say resonates so clearly with me, you know, from the experience that we've been through. So why is it helpful for carers to name or acknowledge that grief might be something that they are feeling?

Mara: I think that when we start to notice and name our emotions, and our experiences and the challenges that we're going through, it does become easier to cope with them. Emotions want to be acknowledged. They don't want to be ignored. They want to be validated. They want to be seen. If carers aren't aware of their grief experience, what I notice is that they tend to criticise themselves, because they don't understand that what they're going through is grief. And what I hear a lot in the counselling room is people saying a lot of ‘should’ statements: “I should be more patient.”

Jim: Yes.

Mara: “I should be more kind and understanding.” And so if people don't recognise that they're grieving, and they don't turn towards that grief and acknowledge it, then the experience of being a carer is one of constantly feeling like you're not good enough as a carer. As soon as we start to acknowledge emotions, it is opening the door to this process of being able to ask them questions about what they say about ‘what I might need’. “If I'm if I'm acknowledging that I'm angry: what does that say about what this situation means to me and what does that say about what I might need?” So it helps with coping. And because dementia is an ongoing, continually changing, evolving condition, it's a prolonged grief experience. So if we don't turn towards our grief and start acknowledging it, we may be spending many, many, many years not supporting ourselves in a way that might actually make the experience — I don't want to say, easier — but it might ease some of the pain.

Jim: There's often a lot of focus on the person living with dementia, but what's the benefit of counselling for carers specifically?

Mara: Some of the biggest feedback I get is how meaningful it is to just have a space to be free. People say: “I don't have anyone to tell these things to. Yes, I have friends, yes, I have family, but I can't tell them these things.” People often, they want to fix things, or they can't sit with that pain and just let it exist freely. And I think for carers, it's often just the process of being heard, being acknowledged, that can be quite powerful. And alleviating isolation, normalising what they're going through, those can be very therapeutically beneficial to people.

Jim: I think that's key: is being heard, just being allowed to be listened to. That's the thing with counselling that is so helpful.

Mara: Yeah, it's actually quite magical. It's this weird, magic thing that happens where — just by saying something out loud, clearly, and being encouraged to really articulate it fully, being asked questions about it — being acknowledged often is enough for people.

Jim: So once you've actually acknowledged your grief, it must be quite freeing.

Mara: When you turn towards your grief and you start to acknowledge it, you start to make room for it. It opens up the possibility of having a different relationship with the experience that you're going through. So there's an opportunity to be more kind to yourself, to stop berating and judging yourself, to validate what you're going through as very real, very normal and giving yourself permission to feel those feelings, and not feel guilty or shameful about them, because this is your experience. This is your story. This is how you are navigating dementia and being a carer, and all of that is very valid.

[Music plays]

Jim: That was Mara, one of the counsellors from Dementia Australia. Hamish, did you ever seek counselling while you were caring for your dad?

Hamish: I did get a bit of counselling, but not specifically to do with Dad. I guess I reflect on it all as a pretty difficult time, more so to do with work and family, but I think in retrospect, a lot of the pressures were associated with Dad and what he was going through. I think for me, a big part of actually the learning in this series is how much of it's interconnected. I don't think I was really clocking it as I was living through all of that time. I did get help. Definitely, I needed help, but, yeah, I wouldn't necessarily have said it was specifically related to Dad's dementia journey or grief or anything like that. It's only now that I'm starting to probably register that. How about in your family? Has Tyler, your husband done any counselling, or your kids?

Jim: Well, I did. I'm pretty resistant to counselling.

Hamish: Stubborn, I think is the term they'd use, right?

Jim: Yes, that's true, but eventually I felt as though it could be useful. And I have had about six counselling sessions through Dementia Australia, which I absolutely have enjoyed towards the end of them. I've got to know a really great lady who's been helping me, but the kids have also leaned on counsellors. I know they've had some therapy for various things, and I think my diagnosis added into that a little bit, so they've worked their way through it, but Tyler is totally resistant to it and very strong-minded and independent to not need it. In fact, it was something we discussed only this week that I said somebody mentioned to me that “it could be a good outlet for you”, so who knows? Watch this space.

Hamish: Maybe Tyler's listening to this episode.

Jim: I'm sure he'd be listening. If you advise it Ham, he'll take it up.

Hamish: Dementia Australia actually offers a range of services to carers of people living with dementia. So if you feel like you could use some support, visit the Dementia Australia website or call the National Dementia Helpline on 1800 100 500. They offered these services to me right throughout the journey that my dad went through and to be honest, I ignored a lot of the suggestions. So take it from me: it’s never too soon. Give it a go.

[Music plays]

Hamish: Okay Jim. Let's head back to Jenny's story, who we heard from at the start of this episode. She was telling us about how she and her husband met, and why their romance was pretty unlikely in the beginning.

Jenny: My husband is — was — Noel Hackett, and we met in Brisbane through a mutual friend.

Hamish: And when was this?

Jenny: Oh, late January, 1980.

Hamish: And so you ultimately married in 1993. That's a big gap.

Jenny: Yes. Well, we both got on with our lives. Noel was a priest and I was a Good Samaritan Sister, and I made final vows a year after meeting Noel, so we didn't imagine our lives taking the direction that they did. That was such a struggle: was such a struggle for both of us. You make a commitment. We both made a commitment that we thought was for life — well for me, like a calling to something more. And that calling remains with me to this day, and — but it gets manifested in different ways. And so it was just a struggle to come to terms with. Are we willing to let go — both of us, individually — of that commitment and the ministry that the freedom that comes with having a life free, to be in ministry. Hmm: it's complex.

Hamish: When Noel was diagnosed with dementia, did you have then — or did he have — a sense of grief?

Jenny: Noel's mum had dementia and it's in her family, so yes, he was very, very distressed: like crying uncontrollably. So I guess that's a form of grief. I think there's a lot of shock, not denial from either of us, both kind of new, but just sadness, really.

Hamish: Did you identify it or acknowledge it as grief at that moment, or did you see it as other things?

Jenny: No, just the profound sadness and another thing, I kind of don't think of ‘grief’. I think about ‘grieving’, and it's sort of like it's happening, but it's only like you live forward, but upon reflection, it's yes, we were grieving, but we wouldn't have named it as that.

Hamish: So I know there was a bit of a gap between when Noel was initially observed by his GP and told “you might have dementia”, and then a couple of years later, a formal diagnosis of dementia. I'm wondering if during that time, you talked much about how he wanted to approach it or how you wanted to approach it together?

Jenny: It was during that time that Noel said to me one night: “Everyone has something in their lives to contend with. This is ours. This is ours and we'll manage it with grace.” And I just remember at that moment thinking: “Oh my God, I have to really step up. I have to step up, to live as Noel was choosing to live. I think I have, but that set the tone and the groundwork for the foundation for our lives for the next, I suppose, 15, 15-and-a-half years — however early it was.

Hamish: What did ‘grace’ mean to you when he said that? That he wanted you both to do this with ‘grace’?

Jenny: It's like a gift. It's a graciousness, an accepting, an embracing of what is, and not fighting against it: not being bitter and twisted.

Hamish: Was that easy to do?

Jenny: Well, that's what Noel said we were doing. So that's what we were doing. And that sounds like he's the monster, and he says what we're doing; it wasn't at all like that. No, not at all. That's what I wanted to do. I've always been inspired by people who have faced massive difficulties and have shone through. It's like been a lifelong fascination for the little girl — and a lifelong thing. So here was my calling to this, now. This was our moment to step up.

[Music plays]

Hamish: I feel like that's part of the answer, because you're talking about adversity and challenge, and it's obvious anyone living with dementia goes through a lot. So I'm just interested, as the person doing the caring, in whether it was challenging at times to live up to that?

Jenny: I was overwhelmed, often, throughout the whole of those years. Swamped, just overwhelmed. And Noel was always very aware of that and supportive. Like, he talked about dementia as sinking into the darkness of dementia. But it was always about Jenny. Jenny has to do this. Jenny has to do that. Jenny has to manage our finances. Jenny. Everything comes back to Jenny — and that concerned him. So yes, it was difficult, very difficult, but I always felt that I didn't want him to feel he was a burden, because he thought that he was and he didn't want to be a burden.

Hamish: Did you ever feel anger?

Jenny: Yes.

Hamish: Because, I mean, I found, you know, with Dad's situation, at various times, I felt quite angry about things, not necessarily angry at Dad or the disease even, but just other people and the way they interacted with it. And there was a lot of frustration. Did you feel any of that?

Jenny: Yes, frustration and anger. My anger wasn't at God, or at life, or at Noel: my anger was: “Oh, my husband does that too. And oh, look, it's, it's not, it's not that bad, and like, he's pretty good.” But there was one place that I felt safe, accepted, understood — and that was in our dementia support group. And that's where I got my understanding and my support, and just being inspired. If other people can do it, like, if this person can do it in those circumstances, goodness, I can do this. And it was just people's stories and experiences, and relationships are so different. And yet, I was inspired.

Hamish: You obviously had both been on such extraordinary journeys to get to the point that you were together. How much of the grief that you felt was associated with, I guess, your expectation of what you might have — the life that you wanted to have together?

Jenny: Yeah. We talked in the group about different kinds of grief and I think that anticipatory grief, but Noel and I starting in our late 30s for me, 40s for him, early 40s, with nothing — like nothing — we didn't have dreams of spending our lives tripping around the world. For us, it was just about being together. And so that was never taken away, because despite being discouraged for spending so much time with Noel, I continued to do that. That's what we wanted to do: just be together.

[Music plays]

Jenny: So at one stage, one of Noel's nephews came down with his wife, and Rory wanted Isabella, his new wife, to meet Noel. And so they came and we went upstairs, and I kept saying to Noel: “Noel, Rory is married now” and I’d used the word ‘married’ quite a number of times. And we had a cuppa with them and wandered around the courtyard, which was our routine, and anyway, Noel eventually gave her the smile, and the nod. She was in. And that was very precious in itself. And we went downstairs, and Noel was in the bathroom, entertaining himself in the mirror, so obviously he was feeling pretty happy. And I went in, and I put my head on his shoulder, and I said, looking in the mirror: “I'm your beautiful wife.” And he put his head on my head and said: “Married.” So it meant, in that one word, it meant that he'd understood the morning that we'd had. He understood who I was and our relationship. Like he didn't say my name: “Jenny” or “Jen-Jen”. He hadn't said that for a long time, but that moment was everything and we kept on having little “‘hold the moment’ moments” that were nourishing and life-giving for me, and I think for him too, because he was able to communicate at a real level with me, and then it was gone.

Hamish: And it's that story — and you — that actually inspired the name of this series, isn't it?

Jenny: Yes.

Hamish: Hold the Moment.

Jenny: Hold the Moment, yeah. And there were lots of them, but we have to be open to them, because so often things would happen and I’d think: “that really happen?”. And why would I doubt? It happened. In May, ‘23, Noel kept crying — a lot, and whenever in a quiet spot together in the wheelchair, I'd be wheeling him, he would be upset. And I said to him: “Noel, what's the matter? Are you? Are you sad?” And he looked at me like: “Are you kidding me?” He didn't say that, but the look on his face like, “the hell, do you think?” “Oh, Noel, sorry, sorry, yes, you're sad. That was a silly question. I'm sorry.” And anyway, we went for another walk. Like, what a stupid thing to say — on my part. So another quiet spot: crying. So eventually, another quiet spot. I knelt down beside him, and I said: “Noel, I promise to live a full and happy life when you die.” And he reached over and pulled me into him, and sobbed, and so did I, and then he was happy after that. It was just extraordinary.

Hamish: And are you living a full and happy life now?

Jenny: I am. I was a bit — as you can imagine — a bit unhinged, I suppose, untethered, because my life revolved around being with Noel daily and then that’s, that's not happening. So I was asked this question: “What is it that you're refusing to accept?” And it was joy. I'd been content in our years together, but there wasn't a lot of happiness anymore. A lot of ‘happy’, but no joy. There was very little joy. And the poignant moments were poignant and beautiful and sacred, precious, but not joyous. And then I had this sudden realisation: “I have made a promise and it's a solemn promise. It's like a — it's like a vow that I made. So I have a responsibility to live up to that, that I've made to Noel. And I have to do that.”

Hamish: To find joy.

Jenny: To find joy and well, to live a full and happy life means to have joy. And I had to rediscover how to do that. Like a lot of ordinary things, I wasn't able to manage. Like going to new places. Just lots of things that are so ordinary that I don't tell people that: “I actually can't do that, because I don't know how anymore.” I have to relearn, but I am experiencing — beginning to experience — joy now and after or during that time, Mary Oliver's poem, The Summers Day, the last line, she says: “Tell me, what is it you plan to do with your one wild and precious life?” And well, my life is wild and precious, so it's a matter of what I'm going to do with it, and I have a commitment still to Noel: to live it, to live it with joy.

Hamish: Jenny, thank you very much.

Jenny: Pleasure.

Hamish: Thanks so much to Jenny for sharing her and Noel's story with us, and thanks to Mara for her insight at the start of this episode.

Jim: Hamish, Mara's amazing and so knowledgeable having worked with hundreds of carers in her role as a counsellor. If you're struggling with grief yourself, you should definitely go and listen to our bonus episode. You'll hear from Kristin, who works on Dementia Australia's Helpline.

Hamish: Kristin offers some really simple, actionable tips for managing grief. And if you want to go even deeper, you can call the helpline yourself. It's available 24/7, every day of the year.

Jim: The number is 1800 100 500. Hold the Moment is a podcast from Dementia Australia, produced by Deadset Studios. You can find more episodes and resources on Dementia Australia's website, dementia.org.au. The show is hosted by me, Jim Rogers.

Hamish: 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.

[END of recorded material]

About the episode

Grief will be a major part of your journey if you’re caring for someone living with dementia. Hear how other carers have managed their grief and how a grief counsellor helps carers through the process.

Watch the interview

In this video we go one on one with our podcast guests

Jenny's Story: Hold On to Joy | An extended Hold the Moment interview

Bonus episode

Helpline: Strategies to help carers with grief and loss

Transcript

[BEGINNING of recorded material]

Speakers: Helpline Kristin, Jim Rogers

Jim: Grief isn't something you can prepare for. It looks different for everyone. As a carer, it might be constant, or it could hit you out of nowhere, but when it does, figuring out how to cope can be the hardest part. Hi, I'm Jim Rogers and this is Hold the Moment, a podcast by people living with dementia and their families. You've probably just listened to our episode on grief, where you heard Jenny talk about the waves of emotion that crash at many points of your experience with dementia. If you haven't listened to that yet, pause this and go and have a listen. But this episode features expert advice and tips from the National Dementia Helpline. The free helpline is available 24 hours a day, every day of the year. If you call, you'll speak to an advisor, just like Kristin.

Kristin: As a carer, you may find yourself feeling all sorts of feelings. You might find that you feel overwhelmed by sadness some days for no real reason, other days you might be angry and you can't figure out why. These things are normal feelings that all of us feel. And as a carer, it can be really tricky to still do all the things that you need to do to get through the day while navigating all of these feelings. Sometimes just describing how you're feeling and how things are going can help things feel just a little more manageable. When you give us a call and you're describing some of the things that you're feeling, you might be surprised if the advisor brings up the word ‘grief’. You might be thinking: “But my loved one’s alive. I see them every day. I care for them every day.” But something to think about is that grief is about loss and there's all kinds of different ways that we experience loss. When you find out that your loved one has a diagnosis of dementia, sometimes that changes the way that the future is going to look for you and your loved one. You might be thinking of all the plans that you had and how that's going to change. That's a loss, and you might feel some of the feelings associated with grief. Even after your loved one who was living with dementia has died, the helpline is still a place that you can call for support to talk things through and to navigate how you're going to be in the world now that your loved one has gone. One of the things that you might find is that you're looking for something to do, to feel a little better. We don't have the answers to make you feel 100 percent, but what we can do is try and help you tap into the things that you love. So you might find us asking you questions, like: “What did you used to love to do as a kid?” And maybe you're not going to jump rope anymore, but maybe you would like to go outside and feel the sunshine on your face — even if you can only do that for two minutes. Or maybe what you really love to do is jump in the shower and blast it hot and maybe even stay in a little longer than the three minutes that you're meant to. For some carers, they like to try something new. Have you wondered what it would be like to play pickleball? It's really up to you what you want to do to try to feel a little bit better.

Jim: A great step for carers is trying to understand your grief a little better. Dementia Australia's advisors like Kristin can help with that. The National Dementia Helpline is available 24 hours a day, every day of the year, on 1800 100 500. And if you're looking for more episodes to listen to, you can find them on Dementia Australia's website.

[END of recorded material]

Strategies to help carers with grief and loss

Grief can hit you at any time in your caring journey, so how can you better understand and manage it?

Potrait of Hamish and Jim, podcast hosts

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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Last updated

22 June 2026