Life After Loss

EPISODE TRANSCRIPT: Life After Loss

Julie: You’re listening to “Life after Loss”, an episode of The Thing About Advanced Cancer.

[Music]

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.

[Series Intro]

[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 the thing about advanced cancer is that if the person with cancer dies, the bereaved carer can feel a whole range of emotions. How does your grief change over time? And how can you come to terms with your loss? To find out, we’re talking with bereavement counsellor Nathan MacArthur. Most recently, Nathan has worked at Chris O’Brien Lifehouse and Sydney Grief Counselling Services, so he has supported many bereaved carers and families.

Just to be clear, this podcast contains general information only, so we recommend you talk to appropriate professionals about your individual situation. You can also call Cancer Council 13 11 20 if you have any questions. We’ll be hearing from Nathan in a moment, but first, here’s Libby. Libby is talking about her experience of loss after her mother’s death from cancer.

Libby: It is very difficult because life just goes back to normal for everybody else except for you. And it does feel in a way that you’ve just imagined the whole thing, or you’ve just made up this person that was once the biggest part of your life and they’re suddenly gone. And it feels like they’ve just slipped into an alternate universe that you’ll never be able to be a part of again. Or that they were just part of a comic strip that you were part of and they were rubbed out. So, it is difficult to take and it’s bewildering and it doesn’t make sense.

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Julie: Well, Nathan, welcome to The Thing About Advanced Cancer.

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

Julie: Look, we’re talking about death here in the context of cancer. And while death with advanced cancer can sometimes come quickly or even unexpectedly, it’s often quite a long, drawn-out process lasting many months or years. I’ve heard this expression, “anticipatory grief” – that to some degree you grieve as you go along. Does that make it easier when the person actually dies, or is it just utterly unpredictable how you’re going to react?

Nathan: I think it is really unpredictable. So I certainly have some people that would say that they feel like they’ve been able to do some of their grieving along the way. I would say for more people, that’s not the case, that often it still comes as a shock, even though we might know that that person is going to die at some point, we don’t know exactly when. And so there’s an uncertainty about that. And often for people that have had a very long cancer experience, there have been ups and downs. So maybe family members have been expecting that they were going to die at some stage previously and then they’ve recovered a bit and been better again, and then their health has gone down again. So there’s this sort of back and forth of preparing yourself that someone might die and then things being okay again. And so it can sometimes feel like they’re invincible, that this is never actually going to happen, and so when it does happen, it’s a huge shock. I also think it’s really impossible for any of us to fully imagine what our grief will feel like after someone dies, and so it can come as a surprise, the intensity and the depth of that and the different responses that we might have to that as well. So, I think often for most people, there is a lot of grieving to be experienced after someone dies.

Julie: When someone does die, how do carers react in your experience, having seen so many carers go through this?

Nathan: I think it really varies, that we all have our own ways of coping. Some people might be immediately very emotional, tearful, very distressed following that death. Other people go into practical mode and start organising things like the funeral, informing people about what’s happened. I think for a lot of people that have been carers, they’re used to being in that practical role of providing that care. And so often that’s something that continues as they manage the immediate aftermath of that death.

Julie: Is volatility common, that you can swing between emotions even if you are caught up in the organisation of everything that happens after a death?

Nathan: Definitely. I think people do feel chaotic. They feel all over the place. I think for a lot of people, actually, just after someone has died, it doesn’t feel quite real. And so sometimes there isn’t an immediate high level of distress or a lot of emotion. It takes some time for that to set in. And so often they are trying to cope as best as they can and get the things done that need to be done.

Julie: You know, you mentioned the funeral arrangements. I have recently experienced a death in my family and it is an intensely busy period. Is that a kind of a mercy to some degree for a busy carer, that they’re as busy as a bee? Or is it something that delays the impact of grief and is therefore problematic?

Nathan: I think the answer to both of that is yes, really, that it’s a good thing and it’s distracting at the beginning. I think it also offers a chance for that care to go on, that people are emotionally wanting to do the right thing by the person who died. And that often means making the funeral very special and carrying out any wishes that they might be aware of, and trying to continue that care after death in that way. But that does, yes, I think in some ways delay the full experience of that feeling, although that’s not necessarily a bad thing either. I think often we give ourselves the dose of grief that we can manage and so that, that grief is felt often more and more as those first few weeks and months go on, the full reality of what’s happened and also the permanence of what’s happened. So often people talk about that sense of their emotional rawness or distress of the grief can increase over those first few weeks as the busyness of the funeral arrangements are passed – as other people around you are often getting back to their day-to-day lives, that the person, the carer carries that grief more heavily over those first few weeks.

Julie: You used an expression there, that people give themselves the dose of grief they can manage. That is such an interesting comment because it implies some level of control. Because I’m thinking now moving beyond the funeral and your observations of what happens next and your advice to people who may be going through that period, to what degree can you give yourself the dose of grief that you can cope with?

Nathan: I think it’s something that we do almost innately, subconsciously, that our brains or bodies only reveal so much of that grief to us at any one time, and that changes over time. So gradually we come to experience all the many impacts of that loss and often that isn’t felt immediately, that it is after time – after kind of the busyness of the funeral, as you are then often in an empty house and feeling very alone – that all those things that you miss about that person come to mind, you have more of those what we might call triggers of grief. So, for example, maybe in the first few weeks, lots of people will bring you food and you don’t need to go to the supermarket. But that first time that you go to the supermarket and you’re not buying that person’s favourite breakfast cereal or biscuits or whatever it is, you get that wave of grief. So, I think over time you encounter things that give you that wave of grief and that realisation of everything that has been lost.

Julie: Well, as I understand it, the response to loss can be physical as well as emotional. So, Nathan, how might the body respond when grief bangs in?

Nathan: So I think that sort of sense of shock, that emptiness, that hollowness inside, sometimes that sense of numbness. Often people have difficulty sleeping in those weeks after someone die, so that would be a really common response, difficulty falling asleep or waking in the middle of the night and not getting back to sleep.

Julie: Does it affect how you dream in any way?

Nathan: I think that’s a really interesting topic with grief, because often people long for dreams about the person who died, and some people, depending on their beliefs, might feel that’s a message. And so often there can be a longing for those sorts of dreams, I think also witnessing someone dying can be a very distressing experience, even when it’s with all the care of a palliative care team, and so those sorts of more nightmare type dreams can happen as well, particularly in those first few weeks, that people can be very focused on those events, and that’s part of what can disturb their sleep as well.

Julie: Just staying with the physical for a moment longer. Do people tremble or shake or does their heart speed up or – I’ve even heard clumsiness can come in?

Nathan: Definitely. I think all of those things and often a restlessness as well. I think that sense of wanting to do something but not knowing what to do. One husband talked about, he coined the term “directionless restlessness” – there is just that sense of energy in his body with no direction to put it in. And I think obviously for people that have been very busy in terms of caring – and often that’s even busier towards the end of life – to then have that void of not having things to fill their day or not being sure what to do with themselves, creates that sort of restlessness and energy in their body and being uncertain what to do with that.

Julie: Can grief also affect your memory and concentration?

Nathan: Definitely. So people talk about it similarly to how we might talk about chemo brain for people that have gone through chemotherapy treatment, there is that sort of brain fog, not being able to concentrate, some short-term memory loss. I have one woman, for example, after her husband died, locked her car keys in her car twice – she’d never done that before in her life – but then she was really actually worried about her memory. I meet with lots of people who might fall into that slightly older age group that worry that maybe they’re getting dementia. But actually that forgetfulness is just a part of grief.

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Rob: You know, I guess it’s different for different people, but for me, it was a complete sort of emptiness – sadness was probably the best word, you know. I was extremely sad and I’d sort of start crying, you know? In the supermarket or somewhere. And then I’d go to the checkout and check things through and walk out without paying or leave the products there, you know. So it certainly changed my behaviour for quite a while – but mainly sadness and emptiness.

Julie: That was Rob talking about how grief affected him after the death of his wife Fran. Nathan, I guess most of us would expect to feel sad, but I’d like to ask you about some of the other feelings that may trouble people. We know that the experience of advanced cancer can be really tough for both the person with cancer and for the carer. So do carers sometimes feel a sense of relief after the death?

Nathan: Yes, I think there can be those feelings of relief, absolutely – that that suffering is done for that person, that those responsibilities of care that might have been challenging are taken away. But I think often, as soon as that relief is felt, there’s a big dollop of guilt goes on top of that for a lot of people, that to be what we might think of as “a good carer”, often people feel like they need to have endless amounts of energy and to be able to care for that person regardless of what was happening. And I think that’s a tough space to be in. So often people can feel a bit guilty about that sense of relief too. And that’s a common response. We’re unkind to ourselves sometimes as human beings, that we pile all those emotions up on top of each other.

Julie: And as a carer, it’s so easy to feel regret for things you did or things you didn’t do. What are your thoughts on regret?

Nathan: I think almost everyone that I meet with has regrets about something. And I think often after someone dies, there is a lot of time to go through everything that happened and analyse that and pull it apart and find the things that we wish had been different. I think also because carers feel very responsible and often have done an excellent job, but often they can focus on those little moments, which every carer has, where they lost their temper, or they kind of needed to step out of a room, that they didn’t do something quite as well as they would have wanted to. And so there can be a lot of regret and guilt about that.

I think also we have this idea of how a death is supposed to look, that we’re supposed to have had those very meaningful conversations, often carers want to be present in the moment that someone dies. And especially when an experience of cancer has been a long one, sometimes there isn’t a good moment to have those conversations, and so those conversations haven’t happened quite in the way that people have wanted them. And often it can be the moment that a carer finally steps out of a room to go to the bathroom or grab a coffee or go for a shower and someone dies at that moment. And so there can be regrets around those things too.

Julie: So what can carers do about these feelings of regret?

Nathan: I think the way that people can sometimes try to address those is some of those continuing conversations that they have with the person who’s died, so that in speaking those words out loud or putting them down on paper, there can be a way of expressing some of what they feel. So with some of my counselling clients, for example, I might invite them to write a letter to the person who died or maybe more than one letter. There might be a letter that expresses regret. There might be another letter that expresses the gratitude that they have for that person. So, continuing that communication can be a way of doing that. I think also acknowledging that none of us are perfect – show me the sort of “perfect” mother or father, husband or wife, they don’t exist. And so an acknowledgement that we won’t ever have done everything absolutely correctly and giving ourselves, I guess, some permission, some forgiveness for that, too, and being fair in our judgement – that if we’re going to sit as judge and jury over everything that we did, are we going to bring everything into evidence? And that means bringing in all of the good things that we did, all of the positive care that we provided, and making sure that we’re holding that in balance with the things that might not have gone quite as well as we would have liked.

Julie: Nathan, just on numbness, that feeling of numbness that some of us experience, it can be interpreted by others as if we don’t care. What would you say to that?

Nathan: I think really it isn’t a signal that we don’t care. I think sometimes it can be a signal that almost we have a lot of care and so that we can’t let ourselves feel all of that all at once. And so that sort of numbness, that feeling of almost being a little shut down, is something that we do as a sort of survival thing. I guess the idea of giving yourself the dose of grief that you can manage so as not to be completely overwhelmed, to give us a little break from the intensity of what we’re experiencing. I think there’s also maybe another related part to that of over time, as the intensity of our grief can become less, that people experience a sense of loss or can be concerned about that too – that intensity of emotion can be a way of feeling connected to the person who died. And so if we’re not feeling quite as much, does that mean that we don’t care? I certainly don’t see it that way. I think often that’s about how we have adapted to that experience of loss, how that person has become a part of our everyday, that we’ve learnt some of those other ways of connecting with them, of remembering them, of honouring their memory. And so that grief has become more a part of us rather than us learning how to live with it, which is where it can feel particularly intense.

Julie: I guess for many of us, our culture or our personality can make it hard to express our grief, but that doesn’t necessarily mean we’re not feeling it.

Nathan: I think that’s true. And I think what’s culturally acceptable, I think for a lot of us, certainly in Australia, there’s almost this “optimum level” of grief that is acceptable, that we want to be emotional, but not too emotional. So if there is an obvious expression of emotion, that’s not okay. But equally, if there’s too much emotion, that’s not okay either. So I think unfortunately for a lot of people that are grieving, they feel like they’re walking this tightrope of how much they should be grieving and what other people think of them. So those comments – I know for people who are going through cancer, often they get similar comments of being brave or strong and, as with anyone with cancer, that people going through grief hate it when people say that. Firstly, I don’t have a choice about this. This is just what I’ve got to do – I have to keep getting out of bed every morning and putting one foot in front of the other and living life, there isn’t a choice there. But also that just because you see me in public seeming like I’m okay doesn’t mean that that’s what’s happening underneath. So I think a lot of people, to be present at work or in social situations, put that emotion to one side, and then feel that on the drive home, 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: Could you talk a little bit about carers feeling angry after a death? Is anger a common emotion? And what can people do about it?

Nathan: Certainly, yes, that experience of anger is a common one. Sometimes that comes a little further down the line – that’s not sometimes how people feel immediately after a death, that that comes a little bit later. I certainly had one woman, she had her husband’s ashes at home in the bedside cabinet, and she would open the door and yell at his ashes and shout at him because she was angry at him leaving her. And that helped give her some relief. I know people that will drive somewhere in their car and scream in the car as a way of expressing that. People that might take up certain sorts of physical exercise, kind of boxing or high-energy exercise as a way of expressing that. People that are more artistic, they might paint their anger or kind of express it in poetry or music or different avenues. For others, it’s enough to talk about it and express it that way. But I think, yes, it’s absolutely a common thing and something that people can express in different sorts of ways to give some relief around that. But also, I think sometimes we can feel, again, ladling those emotions on top of each other, that we can feel a bit shameful of that anger, that it’s not okay to be angry at that person who’s died. I guess, again, giving that sort of permission, that that’s a feeling that often people experience and it doesn’t mean that there’s not a lot of love there as well.

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Julie: You’re listening to The Thing About Advanced Cancer, a podcast from Cancer Council NSW. 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, “Life after Loss”. You can also call Cancer Council 13 11 20 to request free booklets or just to talk to someone about your concerns.

We’ll go back to Nathan in a moment, but just before we do that, we asked some carers how they coped after their loss.

Rob: I went from being a full-time carer to being a full-time nothing-to-do person, you know. And I really had to sort of work at that, really.

Libby: It definitely helps to keep busy at the beginning and to have people around you, just really trying to engage in life again.

Paul: For me, it’s been every day has been a little bit of a litmus test just to see what I can achieve this day. Am I up to doing this yet? And it turns out, by and large, I am. And if I’m not, I say I’m not.

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Julie: That was Rob, Libby and Paul. Well, Nathan, you’ve seen many carers and family members go through this experience of grief. What would be your advice to people in those first weeks and months?

Nathan: I think we talk about people having slightly different styles of grief. So some of us might be more emotional or intuitive grievers, that we’re people that are helped by talking about what we’re going through, writing about what we’re going through, maybe looking at photographs, playing music, really engaging with the emotions of that grief. For other people, that they are more practically oriented. They might take comfort in the “doing” – so, notifying organisations that someone has died, deciding what to do with someone’s belongings, getting out and fixing up the house or doing the garden or using that physical energy. So I think recognising what your natural inclination is and going with that, accessing that community, if that’s what you need, and the support of friends and other family members.

I think also beginning to establish some of those rituals of grieving as well. So I guess sort of traditionally we might think about people visiting a cemetery to visit a grave. Other people do it differently. That might be about visiting a particular beach or park where you feel close to that person. It also can be important to continue your relationship with that person in some form. So lots of people get worried that if they are talking, for example, to that person out loud or in their head, that that’s a sign that they’re not accepting that they’re gone. I really want to kind of say that is really, really not true, that talking to someone can be a very healthy and comforting thing to do. So I have one woman, for example, who writes to her husband every evening, not necessarily a lot, but just a few lines to update him on her day. And that’s something that gives her comfort. Some people might continue to text that family member or leave their email account open to continue that communication. And so we know that idea of that continued relationship is one that can be quite comforting and helpful to people.

Julie: Nathan, I’d like to turn to this question of the loss of role for the carer, because if you’ve been caring for someone with advanced cancer, it really can be all consuming. But when the person dies, that role goes as well. Your observations there?

Nathan: There’s one man that I’m working with right now. His wife has a brain tumour and he talks about that role of caring as being the most fulfilling one that he has ever had. And I think that’s true for lots of people. The tasks of care increase as time goes on, and particularly as someone nears death, there is more and more to be done. And so there’s such a stark contrast with what comes afterwards, of then having every hour of every day lying empty. I think also when you’ve been a carer, often you have connections to medical professionals, the people in the hospital, the carers that might be coming into your home. And when somebody dies, all of that goes away as well. So there can be a sort of secondary loss and additional loss with that of losing those relationships, which often have been very longstanding relationships as well.

Julie: That is such a good point, Nathan. In your experience, how do bereaved carers find a new sense of purpose and fill up what may feel like empty days?

Nathan: So, finding things to fill that, I think, takes some time. For some people, maybe returning to work is an option. For others, it is about connecting socially with people. I have a lot of sort of older adults that maybe are looking at volunteering, University of the Third Age or enrolling in other sorts of courses, things that maybe they haven’t had a chance to do, that fill some of that time. I think that’s a big process. I think that’s a long process. I think often that those days can feel quite empty. I think particularly for people if they’re living alone, highlight the emptiness of weekends. If everybody else is busy living their lives and doing things, often it can be important to schedule in things, so people will schedule in meeting someone every day or going out and doing a particular task or job.

Julie: And some people volunteer in relation to the cancer that has taken the person. Do you find that?

Nathan: Yes, I think I feel a little cautious about that too soon, I guess. And I’m not going to define a time frame for “too soon”, I think people need to reflect on that for themselves. I think I’m also cautious about, though, the idea that we should all be doing something enormously wonderful after someone dies in their memory as well. I think that can feel like pressure as well. I think for the average person actually just getting through every day and every week for a lengthy period of time, often can be a big enough challenge without adding anything else to that.

Julie: Almost completely finally, I guess I wanted to just if you could just sum up, if there’s someone listening who is struggling a bit with their grief and they want to push to a new stage, what are the classic bits of advice to nurture yourself both physically and emotionally, the classic things to remember, to do to just stay well?

Nathan: So, I think physically – first with that experience of sleep, yes sleep can be disrupted in those first few weeks. If sleep is a concern going on, then talking with the GP about that, trying to do all those things that help you to get a good night’s sleep as well, so things like exercise as well, physically – so I know many people that I meet with, their exercise is their saving grace, that it tires them out and helps them to sleep and also helps them to work out some of those emotions as well. So if you’re a walker or a runner or someone that goes to the gym, then keeping a routine with that. I think those things that we know are good for any of us at any time – so eating healthily, staying hydrated, avoiding drinking too much alcohol, all of those basic sorts of things.

Julie: And going out in nature can be useful.

Nathan: Absolutely. So I think the things that I hear people find useful are being in nature, being in the sunlight, at the beach, in parks, wherever it is that people can get to. I think also children and animals are often people’s saving grace as well – so sort of new life. So maybe there are grandchildren or nieces and nephews, there are people around that might need some looking after – and so those good kind of caring talents and skills that people have can be used in different sorts of ways.

Julie: Look, thank you so much, Nathan. It’s been so good to talk with you. And now to finish up here’s Paul talking about how he is learning to live with the loss of his husband, Warren.

Paul: I’m learning more every day about who I am now, and I’m learning things like, I bought myself a new bike. I’m going riding at very fast speeds downhill and enjoying the hell out of it, you know, making sure I laugh and be in that moment and enjoy the fact that I can still do that, because those moments, you know, shouldn’t be lost or ignored. They have to be grasped and remembered. I’m not saying that I’m living my life for Warren because he wouldn’t want that. He would want me to live my life because of him and what I’ve learnt from him. And so I think in time, in the years ahead, I will hopefully continue to learn the lessons that I have to learn from having gone through something like this. And I’ll be grateful for it and appreciative of this gift that Warren gave me.

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Julie: That’s it for this episode of“The Thing About Advanced Cancer. Thanks to Nathan, Libby, Rob and Paul for sharing their insights. And we’d also like to thank the NSW 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, would love to hear from you. So, leave us a review on Apple Podcasts or on our website. If you’d like to subscribe to the show, 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 coping with grief. In that episode, I talk again to bereavement counsellor Nathan MacArthur about how to know if the grief you are feeling is normal and when to seek professional support.

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.

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

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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 NSW. This podcast contains general information only, and Cancer Council NSW 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 NSW.

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