- Hello, my name is Kevin. 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 joined to keep up that tradition. So with that in mind, we now pay our respects to the traditional owners, to Elders past and present, to those First Nations people joining us here today. [Music] - My husband was, Noel Hackett. Noel was a Priest. I was a Good Samaritan Sister.
- This is Jenny. She cared for her husband, Noel after his diagnosis of Younger Onset Alzheimer's at 58 years old. - 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". - 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. [Music] [Music] - Good day. I'm Hamish Macdonald. - And I'm Jim Rogers. I'm living with Younger Onset Alzheimer's. - 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. - 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? - 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. - 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, 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. - What's it been like for you seeing your mum living with dementia, knowing that you are also living with dementia? She was obviously more advanced.
She was much older in age as well. - 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, it was quite sad, really. But I'm just so happy she's with my dad now, and at peace. - How you doing?
- Yeah, I'm good. It's good to see you. (chuckles) - 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 Mera, a counsellor from Dementia Australia. She's spoken to hundreds of carers about their grief and how to manage it. - 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. - So how might grief present in the life of a carer? - 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"?
- What can carers understand about the person they love living with dementia? Are they grieving too? - 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. - So grief is more complex than just a feeling you have when somebody passes away. So, what is "ambiguous loss"? - 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, 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. - That's just so true. Everything you say, resonates so clearly with me, you know. From, 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?
- 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." (Yeah) "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 are 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 started 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. [Music] - There's often a lot of focus on the person living with dementia, but what's the benefit of counselling for carers, specifically? - 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.
- I think that's key, is, is being heard. (Mmm) Just being allowed to be listened to. (Mmhmm) - That's the thing with counselling, that is so helpful. - 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. - So once you've actually acknowledged your grief, it must be quite freeing.
- 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] [Music] - That was Mera, one of the counsellors from Dementia Australia. Hamish, did you ever seek counselling while you were caring for your dad? - 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? Is Tyler, your husband, done any counselling, or your kids? - Well, I did. I'm pretty resistant to counselling. - Stubborn, I think is the term they'd use, right? - 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-lined, in-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. - Maybe Tyler's listening to this episode. - I'm sure he'd be listening. (chuckling) If you advise it Hayne, he'll take it up. - 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] [Music] 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. - My husband, it was Noel Hackett. And, we met in Brisbane. Through a, mutual friend. - And when was this? - Oh, late January, 1980. - And, so you ultimately married in 1993. That's a big gap. - 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. But, it was such a struggle. It 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, a 'calling' to something more. And that 'calling' remains with me to this day. And, but it gets manifested in different ways. And so, yeah, 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. It's complex. - When Noel was diagnosed with dementia, did you have then, or did he have a sense of grief? - 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 knew, but, just sadness really. - Did you identify it or acknowledge it as grief at that moment? Or did you see it as other things? - No, just the profound sadness. And another thing I, 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.
- 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? - It was during that time, that Noel said to me one night, "Everyone has something in their lives to contend with". "This is ours".
(Exacerbation sigh) "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's choosing to live. I think I have. But that set the, 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. - What did, what did 'grace' mean to you when he said that? That he wanted you both to, to do this with grace?
- It's like a gift. It's a graciousness. And accepting and embracing of what is. And not fighting against it. Not being bitter and twisted. - Was that easy to do? - Well, that's what Noel said we were doing. So, that's what we were doing. (chuckling) And if 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, it's like being a lifelong fascination for the little girl, and the, a lifelong, things. So, here was my calling to this now. This was our moment, to step up. [Music] - 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, to live up to that? - 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. - Did you ever feel anger? Because I, I mean, I, I found, you know, with dad's situation, at various times. I felt quite angry about things. Not necessarily angry at dad or at 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? - 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". (Chuffs) 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. (Yeah) And it was just people's stories and experiences and relationships are so different. And yet, (- there was a lot in common) - I was inspired. (Yep) - Yeah. - 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?
- Yeah, we talked in the group about different kinds of grief, and I think that's 'anticipatory grief'. But, Noel and I starting in the late thirties for me, forties for him. Early forties, 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] [Music] 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's 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, the smile and the nod, 'She was in'. And that was very precious in itself. And, we went downstairs and I was in the bathroom. Entertaining himself in the mirror so obviously he was feeling pretty happy. (chuckles) And I went in, and I put my head on his shoulder and I and I said, looking in the mirror, "I'm your beautiful wife". (Echos) 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, 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. - And it's that story.
And, and you, that actually inspired the name of this series, isn't it? (Yeah) - Yes, yes. - Hold the moment. - Hold the moment. Yeah. And there were lots of them, but we have to be open to them, of course. So often things would happen, and I'd think "Did that really happen?". And, why would I doubt? It happened. [Music] [Music] In May, '23 Noel kept crying, a lot. And whenever in a quiet spot together, in the wheelchair, I'd be wheeling, 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, what do you think?" "Oh, Noel, sorry, sorry." "Yes. You're sad. Oh, it's 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. - And are you living a full and happy life now? - I am. I was a bit, imagine, imagine, bit unhinged I suppose. Not 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 are 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. - To find joy? - 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 to 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 Summer's Day'. The last line, she says, (Echoing) "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. - Jenny, thank you very much. - Pleasure. [Music] [Music] [Music]
Thanks so much to Jenny for sharing her and Noel's story with us. And thanks to Mera for her insight at the start of this episode. - Hamish, Mera is amazing. And so knowledgeable, having worked with hundreds of carers in her role as a counsellor. If you are struggling with grief yourself, you should definitely go and listen to our bonus episode. You'll hear from Kristen who works on Dementia Australia's Helpline. - Kristen 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. - The number is 1800 100 500. [Music] 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. - And by me, Hamish Macdonald. The executive producers are Kellie Riordan and Gia Moylan.
The producers are Madeleine Hawcroft and Liam Riordan. Production Manager is Ann Chesterman. Sound designed by Ryan Pemberton. A special thanks to the whole team at Dementia Australia and to everyone who shared their stories on this podcast. [Music] [Music] [Music fades]