Coping with Grief

EPISODE TRANSCRIPT: Coping with Grief

Julie: You’re listening to “Coping with Grief”, an episode of The Thing About Advanced Cancer.

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Nathan: We want this messy thing called grief to be neat and ordered and for us to find our way through it with ease, I think in reality that that experience of grief is much more chaotic and also that it can go on longer, be more intense, than any of us expect.

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[woman] The Thing About Advanced Cancer

[man] a podcast from Cancer Council NSW

[woman] information and insights

[man] for challenging times.

Julie: Hello, I’m Julie McCrossin, and today the thing about advanced cancer is that if someone you care about dies, the grief can be intense and long-lasting. So how can you tell if what you’re feeling is normal and when should you think about seeking extra support? To find out, we’re talking with bereavement counsellor Nathan McArthur. Most recently, Nathan has worked at Chris O’Brien Lifehouse and Sydney Grief Counselling Services, so he has supported many carers and families after someone has died from cancer.

Just to be clear, this podcast contains general information only, so we recommend that you talk to appropriate professionals about your individual situation. You can also call Cancer Council 13 11 20 if you have any questions.

So, Nathan, welcome.

Nathan: Thank you. It’s good to be here.

Julie: Now, Nathan, we know that grief can be a powerful experience with no set time frame, but what is a normal process of grieving? Can you give us some examples of each stage of the process?

Nathan: Often we want it to be a nice, neat, clearly staged process and I think a lot of us, when we think about grief, we still think about the work of Elisabeth Kübler-Ross in those stages of grief. So, we talk about that denial, anger, bargaining, depression and acceptance. I wish I could tell you it was that neat and ordered – Kübler-Ross herself, that was not her intention. It’s a model that’s been simplified because we want this messy thing called grief to be neat and ordered and for us to find our way through it with ease. I think in reality that that experience of grief is much more chaotic, that people can feel all of those emotions at different times, in different ways and a whole lot of other experiences as well, and also that it can go on longer and be more intense than any of us expect. I think one of the struggles that often people grieving have, is that the people around them expect them to be better, whatever that means, sooner than they actually feel able to, to kind of “move forward” in their grief as well. So, what we talk about or I find helpful to talk about, is the idea that grief lasts a lifetime, that initially that grief takes over all aspects of our life. But over time, life grows around the grief that we have – new interests, new relationships, new things that we do. And gradually, over time, we might spend more time outside of that space of intense grief. It doesn’t take much for us to go back into that space. It can be an anniversary, a birthday, a song that plays and we can go back into that experience of emotion. But gradually, over time, we find that we’re able to spend more of our lives in that place outside of the grief or alongside the grief that we find ways to carry it along with us.

Julie: So, Nathan, how long is too long? I mean, is there any length of time that might be a sign that you should get some help?

Nathan: There’s no rules as such. I think often people know for themselves when they’re struggling. I think people have that sense of this is too much for me now and I need to be accessing some help – I think if things are persisting and there’s no fluctuation in that experience of emotion. So I think often it’s not that straight line of things are consistently getting better over time, that some people might be very, very social to begin with in those first few weeks or months, and then retreat and have some time by themselves, and then be more social again. So I think keeping an eye on that sort of ebb and flow of things and the time that people might need some more support is if things are feeling persistently very, very difficult and they’re not having contact with anyone for several weeks, then yes, I would be concerned about anyone not having contact with anybody at all for several weeks. But I think if they’re able to articulate that they’re needing some space, then trusting their judgement of what they might need can be important.

Julie: The experience of grief is so individual, and yet there are some common themes. Here’s Paul describing his grief since the death of his husband, Warren.

Paul: I found the initial grief part, the thing I call “the grief” is really loud. It’s like it’s very shouty and very bright and sharp, and sort of gritty and uncomfortable. That’s sort of the first couple of months and then sort of it changes for me into this other thing, which I called “mourning”. And mourning is really wet. It’s like drizzle. It’s just dark and depressing and yeah, wet and miserable all the time, and it’s painful, but it’s not that that bright harsh sharp kind of grief reaction. And the third part of it is what I call despair, the slow burn, just despairing for your life that has been lost. And now that’s moved on – and I’m into whatever the next stage is.

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Julie: Nathan, I’ve known people who keep the person’s room the same or keep particular objects with them for years after the death. Can you give us some other examples of these types of behaviours that some people find comforting and whether, if ever, you should worry about them?

Nathan: So things like, yes, keeping belongings that people might have, a particular piece of clothing that they keep under the pillow at night or they leave around the house, and that’s absolutely OK. People might have photographs arranged with candles or things like that, things that might look like a shrine to other people. And we have something against shrines often in modern Western culture that isn’t helpful, that often they can provide a lot of comfort to people. So, for example, I know one woman that had the ashes of her husband and would leave things for him beside those ashes, his favourite piece of chocolate or things like that. People around her were worried that she wasn’t managing her grief, but that was fine. It wasn’t causing any harm to anybody else. And I think that’s probably the test of if something is okay, if it’s not causing any harm to anybody else, if it’s not stopping us from doing other things that we might need to be looking after – our basic needs – then it’s probably okay. Often people, yes, take that comfort in keeping things for many years and that’s something that they need to do to feel connected to that person, for that person to continue to be a part of their lives. And there’s absolutely nothing wrong with that.

Julie: So if you’ve got enough rooms in your house and you want to have the room where someone, was someone’s bedroom when they died, you can just keep that room for the rest of your life if you want.

Nathan: Absolutely. We can be judgemental in different ways of that. I think we would often think that was an okay thing for parents after the death of a child. But if it’s another relative, that that might feel not quite so okay. And those are interesting questions about why we think some things are okay and other things are not. And I think to really look at why that might be and to check out if there is anything that’s actually harmful about any of that. And often there isn’t.

Julie: If I could share a personal example, all my life as the eldest daughter in my family, my mother always said, if anything happens to me, grab my handbag. And I literally spent my entire life grabbing Mum’s handbag because she had quite a lot happen to her and I had to grab the handbag. And I’ve asked my partner, when I die, please bury me with my mother’s handbag. And I’m not troubled by the apparent irrationality of that. I know it comforts me. It doesn’t hurt anybody. I’m functioning in my life. I’m just going to look after Mum’s handbag till I die. Is that an example of what you were trying to refer to, that there’s no rules?

Nathan: I think that’s a perfect example – those things that people around us might find a little unusual or be concerned about. But the reality is, if it’s doing no harm to anybody else, then it’s an okay thing to do that we connect with different things. There might be belongings we particularly want to have. We might choose to continue to send that person text messages, even though we know that they’re not physically receiving them – and that’s an alright thing to do. So, I think there are no real rules around that, though, of things that we would see as absolutely abnormal. And I think we can look to different cultures around that. I guess if we look, for example, in Mexico the Day of the Dead, that people come to cemeteries and bring food and sit there and talk and remember their loved ones – that’s an okay thing to do. I know some people that will do that in Australia, but often people might feel a little uncertain about whether that’s an okay thing to do. So, allowing ourselves to borrow from other people’s experiences, what other cultures do, and to take comfort in the things that speak to us, that have meaning for us. So, for example, people might want to, on special occasions, birthdays or Christmases, set an empty place at the table to acknowledge or remember that person. For others in the family, that might seem like a really morbid and awful thing to do, and that’s wrong. So, I think in trying to find those compromises about things can be important, to find a sort of middle ground that meets everybody’s needs.

Julie: So, it’s often okay to find ways to stay connected to the person who has died, but what would be the signs that someone could be really starting to struggle in their grief? What should we watch out for?

Nathan: I think other things that we might look out for in struggling, I think that sort of basic thing of attending to the things we need to do each day. So, if someone isn’t showering and eating and doing the things that they would normally be doing for a length of time, then that would be a sign of us wanting to be concerned about them and check in on how they’re doing.

Julie: And what would make you especially worried about someone?

Nathan: I think the only time that we would be particularly concerned about someone, I guess those sort of symptoms of depression and particularly feeling suicidal. I think often people after the death of someone close to them will have moments or thoughts that are often quite fleeting of wanting to die themselves – and that’s not necessarily that they actually want to be dead, but they want to escape the pain that they’re experiencing. So that can be a really common thing for people to experience. I think also, though, that for a smaller number of people that their pain is so great that they are actively thinking about how they might end their life. And that would be a time that is obviously of great concern and a time to be consulting with medical professionals and contacting Lifeline and getting support in other ways.

Julie: And of course, the number for Lifeline is 13 11 14. Lifeline 13 11 14.

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Julie: You’re listening to The Thing About Advanced Cancer, podcast from Cancer Council, New South Wales. If you’re looking for more information about grief – or to listen to more podcasts – you can visit our podcast page at cancercouncil.com.au/podcasts, just click through to The Thing About Advanced Cancer and then click through to this episode, “Coping with Grief”. You can also call Cancer Council 13 11 20 to request free booklets or just to talk to someone about your concerns.

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Julie: Nathan, so far I’ve been asking questions as if the carer is on their own, but of course, they’re likely to be in a whole network of family and friends, so they’re also dealing with other people’s reactions. I imagine that can sometimes lead to misunderstandings or even conflict – is that right?

Nathan: Yeah, and that can be tricky I guess, thinking about family. For sons and daughters that may have been a carer for their parents, I think quite commonly we see that there might be dispute between siblings, between brothers and sisters, that often that person that’s been doing all of that care can feel sometimes a little let down by their brothers and sisters that might not have been as there for Mum or Dad as they would have liked. And often that after you’ve done the role of caring, it also falls to you to do things with wills and estates and belongings. And so that stress and pressure and responsibility can continue, and sometimes that can lead to disagreements about certain things. And so, unfortunately for some families, that does feel almost like a double loss – that there is the death of that parent, and people can feel the loss of that support from siblings and the changed relationship as well. I think also for most of us, those different ways of grieving – that if someone is more of an emotional griever and wants to talk a lot, but they have family members that are actually more practical and want to get on with the tasks of things, they can feel quite alone, even though there might be people around. And so there’s different styles of grieving can be tricky. I think also and importantly, when it’s been a younger person that has died and maybe their husband or wife has responsibility for raising younger kids that are at school or school age, trying to figure out how best to support children and teenagers through this as you’re going through your own grief, can be enormously challenging as well. So there’s lots of, I guess, different situations that can bring out different experiences for family members.

Julie: And is it different for men and women?

Nathan: I think for men and women – I think some of those emotional experiences can be the same, but we’re sort of brought up in different ways, there’s some of that cultural stuff about how we’re supposed to be. So for men, stereotypically and not always, but being expected to be a bit more stoic, to be more practical and to get on with some of those practical tasks, to not need quite as much support. So, certainly some of the research would show that people are more likely to offer support to women than to a man and more likely to ask a woman about their experience of grief and have an openness there; that we know that women are more likely to seek support services like counselling or support groups than men; that it’s socially more acceptable for a woman to be tearful or express emotion. Some of that is shifting, I think, to acknowledge that those are sort of stereotypes and some of them historical things. But I think a lot of that still lingers today – like, I’ve certainly worked with teenage boys and young men who still have that sense of needing to appear strong. So, for example, I think about mums of teenage boys, after the death of their husband, their father, are often really concerned that the young man isn’t expressing emotion, that he isn’t able to talk about their dad. And so, I think there’s some gender differences in that space as well.

Julie: You touched on the issue of parenting when you’re grieving yourself. Can you give us some thoughts about helping children and teenagers?

Nathan: I think all the way through an experience of cancer that we want to be being as open and honest with children as possible, of trying to explain to them what’s happening. And that’s true after a death as occurred as well. So being able to explain, I guess, particularly for younger children, what death is as they’re developing their ideas about what death is and how to understand that. Opening up opportunities for conversations about how they’re doing, but also not pressurising them to talk too much too. Creating a community of support as well, so involving family, friends, uncles and aunties, all the people that might be able to be involved in support of that child, to answer their questions or to distract them, to do whatever is needed there. I think often that grief can be confusing for parents, that children can move quite quickly in and out of different emotions – so they might be very distressed, very tearful one moment, and bouncing on the trampoline the next. And so, it can be a bit confusing to understand how they’re doing.

Julie: So what would be the signs that a child is starting to struggle, that you might need to get some professional help for them?

Nathan: I guess we talk about those real red flags that might signal that something is concerning. For example, persistent changes to their behaviour, changes to their performance at school, difficulty in sleeping or changes to appetite, might be those things that alert us that a little more support is needed and that would be a time to talk with professionals – GP or school counsellor or people like that.

Julie: Now, Nathan, I imagine there are some situations where a person’s grief can feel especially complicated. I mean, not everybody has a happy family or a happy relationship with the person who’s died, do they?

Nathan: That’s an important thing for people to navigate as well and often a challenging thing for people to navigate. If, for example, there have been experiences of addiction, alcohol or other substances that may have contributed to a cancer diagnosis, if there have been mental health concerns, if there have been experiences of domestic or family violence – that can create a whole mix of feelings and grief, so people can feel that anger, the disappointment, that regret that things were different. Sometimes those experiences can be quite hidden as well. So, for example, I’ve worked with a couple of women who have experienced domestic violence. Now, nobody else knew that was going on, so in their grief, they have to be the appropriately grieving widow. They both have a lot of relief that that isn’t their experience anymore, but everybody else expects them to be enormously sad that their husband has died because he was seen as a good person by everybody else, and the violence was very secret. So those sorts of things can make grief harder to manage.

Julie: And what are some other situations that can make grief feel a bit more complicated?

Nathan: Many of us don’t have absolutely perfect relationships with our mums or dads, and things have gone unsaid. I meet with a lot of men that wish that their dads had been able to express their love for them or their pride in them. And so there’s a sense of sort of unfinished stuff there or a wish that things could have been different. For kind of mums and daughters where maybe there has been some conflict at times – not in any kind of very awful or serious way, but those differences that all of us can have with family members – and haven’t had a chance to apologise for that or make peace with that in some way. And so those sort of unfinished conversations that we hope we would have been able to have at some point and haven’t come to pass. And so those sorts of things can weigh on people as well.

Julie: Nathan, in a moment, I’m going to ask you for some practical strategies and sources of support for people struggling with grief. But just before we do that, let’s hear from Libby and Rob about what helped them cope when the grief felt too much.

Libby: Reaching out to people who had experienced it definitely was one of the major things that helped, though, you know, every experience is different and the level of grief is different and the relationships they had with their parents are different. So it’s never going to be the same experience. But I did find that very helpful. All the groups online that I was part of – incredibly helpful. Friendships, getting out and doing as many things as possible, seeing people, not hiding away, which I might have the inclination to do. Trying to find that motivation that had been lost. So really just forcing myself to get out and do things.

Rob: Well, I think being me, I felt I had to do something about it, I couldn’t sort of continue like that. So I found that there was a grief counsellor at the palliative care team who I could see for as long as I wanted actually. And I just found it absolutely marvellous, you know, to just spend an hour a week bawling my eyes out and just emptying out all that sort of sadness I had. And after about nine months or so, I started to sort of feel stronger and started to look ahead a bit, you know, rather than sort of looking backwards.

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Julie: Nathan, for somebody who may be listening to this and feeling intense feelings, or at some time in their grieving process, perhaps when they’re alone or in the middle of the night or whatever, they feel utterly overwhelmed – what’s the advice?

Nathan: So for people in that circumstance, often that experience, the feeling, that intensity, won’t last forever as well. So that acknowledgement that this is a peak of that emotion and knowing that whenever that peak of emotion has happened before, it does eventually shift. So I think sometimes that knowledge that this is one of those peaks, those big waves of grief that come, and knowing that that passes as well. Often people, if they’re crying intensely – so that’s the way that intense emotion is being experienced, that people cry themselves out, sometimes it can take a long time and be an exhausting process – that people in expressing that grief are able to then be somewhat soothed or feel slightly lighter after doing it. So, I think allowing that, that emotion to be expressed. For others, it is important that they speak with someone and so being able to call organisations like Lifeline or Griefline, if that’s important in the middle of the night, to be speaking with someone.

Julie: And Nathan, do you have any tips for controlling those big waves of grief?

Nathan: I think that intense emotion of grief that we see in different cultures, for example, that expression of wailing or crying – I think sometimes that can be a sort of human instinct to want to do that, and that to be an okay thing to allow ourselves to do if that helps us to get some of that emotion out. I also take people through a sort of a visualisation exercise with their emotions that sometimes can be helpful. So that idea, if I was able to reach inside of myself and pull that emotion out so that I was able to hold it like an object in front of me, imagining what colour it would be, what shape it is, what size it is, how heavy it is to hold, what its texture is as it rests against my skin, and being able to name that, to put a word to that, and then gently laying that emotion down on the bed or the table or the floor beside me. So, a way of acknowledging that emotion, but allowing it to sit outside of us. And sometimes that gives people a sense of control over that or an ability to manage it. So, for example, I’ve taught teachers teaching at the front of a classroom that sort of strategy for managing emotion, that they’re worried if a child in their class says something they might trigger that wave of grief. So, being able to visualise that emotion as an object and gently place outside of them allows a sense of control, and they can pick it up at the end of the class. So those sorts of strategies can be useful.

Julie: If someone does feel like they need a bit of support to help manage their grief, I guess they can always start with their GP, and the GP might refer them on to a psychologist or perhaps to a bereavement counsellor like yourself. There may also be bereavement support available through the palliative care team or the cancer care team, and of course, there is our Cancer Council 13 11 20 Information and Support service, and we can connect you with telephone support groups and other services. Nathan, are there any other groups we should mention?

Nathan: I think there are a few other services we have. For example, there is Solace for husbands and wives that have experienced a bereavement. You have organisations like Compassionate Friends for parents who have been bereaved. I think there are also things like Canteen for young people who’ve experienced the death of a parent from cancer; Redkite, who do a lot of work with parents of children, young people who may have died from cancer. So, there are a wide range – I’m not sure I’m going to remember to mention everybody that should be mentioned. Organisations like Griefline as well, and they’re volunteer run so people can call on them. And there’s certainly a whole lot of information out there as well. So, for example, I’m with Sydney Grief Counselling Services, running webinars for people to give information about grief and grieving. I think often when we’re well informed about what this experience is like, it can make it more manageable. So, I think seeking out those information sources can be useful in informing ourselves – like podcasts like this – to know what to expect.

Julie: Thank you so much, Nathan. And we’ll have a complete list of resources and places people can get help on the website at cancercouncil.com.au/podcasts. And just to finish up, here’s Paul with some personal insights on grief.

Paul: I spend most of my time these days trying to answer the question of what have I gained from this, not what have I lost, I know what I’ve lost, it’s obvious. But what have I gained? What, what have I learnt? What’s the value? And in order to do that, the holding of the loss or the grief or whatever you want to call it, has to become something that you incorporate into yourself and moves on with you. And no longer is a corrosive thing. It just has to sit with you and you have to learn to sit with it. And I don’t think this is in any way a revelation – I think, you know, it’s been said before – but the way that you do it is individual for everybody.

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Julie: That’s it for this episode of The Thing About Advanced Cancer. Thanks to Nathan, Paul, Libby and Robb for sharing their insights. And we’d also like to thank the New South Wales Ministry of Health for their generous support of this podcast. If you’re looking for more information, you can ring the Cancer Council 13 11 20 Information and Support service from anywhere in Australia or go to cancercouncil.com.au/podcasts. If you have any feedback on this podcast, we’d love to hear from you. So, leave us a review on Apple Podcasts or on our website. If you’d like to subscribe for more free episodes, you can do it in Apple Podcasts or your favourite podcast app.

If you found this episode helpful, you might want to listen to our podcast on life after loss. In that episode, I talk to bereavement counsellor Nathan McArthur about coming to terms with grief and loss after someone you care about has died from cancer.

Nathan: I have so many people I’ve spoken to that talk about driving home from work and being in tears on the way home, having performed all day as being someone that’s doing okay – that often there can be really intense experiences of emotion in private, whereas there’s that sort of public presentation, that mask that people put on to be able to seem okay with those around them.

Julie: You can find that episode “Life After Loss” on our website at cancercouncil.com.au/podcasts, just click through to The Thing About Advanced Cancer.

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Julie: The stories and experiences contained in this podcast represent the views and opinions of the speakers. They do not necessarily represent the views and opinions of Cancer Council New South Wales. This podcast contains general information only and Cancer Council New South Wales recommends you obtain independent advice specific to your circumstances from appropriate professionals.

I’m Julie McCrossin and you’ve been listening to The Thing About Advanced Cancer, a podcast from Cancer Council New South Wales.

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