Caring for Someone with Advanced Cancer

Caring for Someone with Advanced Cancer

[EPISODE ID]: You’re listening to “Caring for Someone with Advanced Cancer”, an episode of “The Thing About Advanced Cancer”.

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Dr Toni Lindsay: It’s kind of one of those Hollywood movie tropes that when you get given one of these jobs, everyone flourishes and it’s the best thing that’s ever happened to them. I almost never meet those people. Saying, “This is something I want or need to do” is very different to saying, “This is a really enjoyable, easy thing to do”. I think the reality is that caring is really tough, and I think we see that as a society, but I don’t think we name it very often.

[Series Intro]
[woman] The Thing About Advanced Cancer
[man] a podcast from Cancer Council NSW
[woman] information and insights
[man] for challenging times.

INTRO: Hello, I’m Julie McCrossin and today the thing about advanced cancer is that caring for someone when cancer is advanced can be rewarding, but it can also be challenging and complicated. In a moment, I’ll be talking with Dr Toni Lindsay, clinical psychologist at Chris O’Brien Lifehouse, about how you can look after your own needs as well as the needs of the person you’re caring for. But to help set the scene, here’s Susan, whose partner Peter was diagnosed with advanced prostate cancer four years ago.

Susan: Living with advanced cancer I think is, is just this ongoing strain, and it’s like an unwelcome, uninvited guest has come into your home and sometimes they just sit quietly in their room and don’t bother you and other times they’re loud, and bang on the door, or whatever they do, and you think, “Oh that’s right, they’re still here.” And you know the day they leave will be the day they take Peter with them. So, you don’t want them to leave even though it’s really hard having them there all the time. It really changes our focus on life.

Julie: We’ll be hearing more of Susan and Peter’s story later in this episode.

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.

And now it’s my pleasure to welcome psychologist Toni Lindsay to Cancer Council’s podcast.

Toni: Thank you for having me.

Julie: We want to focus in this episode of our podcast series on the carer’s experience. But first of all, what is a carer? Because a lot of people don’t necessarily use that word to describe themselves, do they? What do you think a carer means?

Toni: So, I think you’re right, it is a really complex term because I think for some people they wouldn’t self-identify as a carer and actually they’re doing lots of caring duties. But in my kind of way of thinking about it, it’s someone who provides support or help to someone who’s unwell. So that might be really practical, physical support, or it might be really emotional support, and for some people they might have lots of carers. So if I think about say an elderly person who might be unwell, they might have adult children who all have very different roles that they might play – so someone might be the person that runs around and takes them places and someone else might be the person who comes over and has a cup of tea and sits with them. So, depending on what people need, they might have different people that fit those roles. For other people I meet, they might just have one person and that person does everything, which as you can imagine is, can be a really challenging thing to manage.

Julie: So, for some people, a diagnosis of advanced cancer can mean you still live a reasonable length of time, but for others it’s going to mean a shorter time. How do people and their carers usually react to the diagnosis?

Toni: This can often be the time where people can take very different paths around how they cope. So, for some people they jump very much into that practical “Okay, I need to now plan for my life when this person might not be around,” and most people will keep that pretty much to themselves because they don’t then want to be talking about that stuff openly. And for lots of people I meet those thoughts are, despite being very normal and happens to almost every carer I meet, kind of carry lots of guilt around that idea that they might even consider those things. Or the other side is actually that all they want to do is think and talk and trying to make sense of it. And it might be that they’re, you know, whoever they’re caring for, you know, whatever kind of relationship that might be, that person might be having the opposite response. And so that can actually cause quite a lot of friction for people. Sometimes I meet people where they’re both in the same place at the same time, but much more often people are in slightly different places and it takes time to get to that.

Julie: Yes, and that was certainly the experience of Susan when her partner Peter was first diagnosed.

Susan: I know for us, we’ve always been very together, a very together couple, and for the first time in our lives, it actually felt that we were on different paths because Peter was heading down the path of him dying and I was heading down the path of widowhood and losing him. I think that’s probably a very normal thing for couples or for anyone in this situation. That was actually a bit of a tricky time for us, but we did manage to talk about it and work through that.

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Julie: Let’s turn to this question of how much time I’ve got left, which both carers or patients may or may not want to know and, as you’ve indicated, they may have a different approach. So, some of your experiences there and your advice to carers.

Toni: Part of the kind of challenge of that question is, much more often than not, people will get a “we don’t know” kind of response –

Julie: – because so many treatments are improving quite quickly. So, there is more ambiguity, isn’t there, about how long people may last?

Toni: Yeah definitely, and I think one of the things to think about is, “Well what is it that I would want to know?” Because it might mean that there isn’t an answer for that thing right now, but actually in talking to a doctor and saying, “I need you to tell me if this is going to change,” then it doesn’t necessarily get you an answer but it gets you a sense of, “Okay, well people around me know what I need in terms of information”. So often that can be a really reassuring piece so it’s not just a completely ambiguous “no-one can tell us what’s going to happen here”. So at least then there’s a bit of structure and a plan.

Julie: As I understand it, an increasing number of people are living a long time with advanced cancer – it can be months, it can be years. So how does the carer manage their role when it’s a long-term commitment? That must bring particular challenges?

Toni: One of the things that we kind of assume is that all of this stuff is smooth sailing and sometimes it is. But often the carer role is really stressful and really hard and doing that for a really long time is actually a really tricky concept for people to get their heads around and –

Julie: – I mean there’s the financials, there’s taking people to scans and not knowing what the result will be yet, there is this kind of a sense of living in limbo and ambiguity.

Toni: Absolutely. And it might be, you know, I was speaking with someone a couple of weeks ago who, you know, is on one of the new drugs which is working really well but actually getting some really horrible side effects and then having to take other drugs which cause more side effects and so they’re living with someone who is pretty grumpy and pretty irritable and there’s not much of a sense of when that might change. So, I think there’s those multiple strings in which carers are kind of pulled in lots of directions, and so maintaining that for a long period of time can be really tricky. What is it that the carer can do that kind of helps get them through? So, often I think about that idea of, you know, a fuel tank, and if there’s a really big hole in your fuel tank stuff drains out pretty quickly. So, caring for someone is a pretty decent hole and, you know, some of that is uncertainty and fear and lots of other things.

Julie: So, what can I do to put fuel in my tank?

Toni: My general rule in life is: simpler is always better. So, if you’re waiting for a week to go to Hawaii so you can completely recharge your batteries, it’s probably not going to happen. Whereas if you go, you know what, I can grab 15 minutes while I’m walking up to the chemist in the sunshine. That’s a much easier way of going about it. So I tend to think and work with people around if we set expectations that you’re going to be able to do something really kind of momentous every day that’s going to make you feel wonderful, that’s great but we might not get there, so how do we grab these little snippets of time? And you’re not going to get a full tank in the midst of all of this, but we just need to get you off of empty so the car can keep running.

Julie: So, if I am a carer listening to this and I want to take practical steps to keep myself resilient and adaptive and living with this ambiguity, can I ask to see a clinical psychologist before I’m freaking out –

Toni: – absolutely –

Julie: – or can I see a social worker before I freak out? Like, what are my sources in a multidisciplinary team as a carer?

Toni: Yeah definitely. You know, I always think about that idea of, you know, when you’re in the surf where you catch the wave. You know, if you wait until the wave’s about to break, you’re probably going to get tumbled and very disorientated, whereas actually if you can see that the wave’s coming, you’re much better equipped to manage it. And this is exactly the same. So, I would encourage people, even if you feel like you are kind of going okay but you can just see a few little stress bases, go and talk to someone about it. Because more often than not, they’ll be able to reassure you, give you some strategies, and actually things will feel okay. But if you wait until kind of everything feels like it’s falling apart, that’s a really hard time to then get help and it takes a much longer kind of process to try and rebuild things again.

Julie: Do you ever see a situation where the carer is in fact more traumatised and more distressed than the person with the diagnosis of advanced cancer?

Toni: One of the challenges of being the carer is that you’re ultimately a step removed from what’s happening. And so, if you’re the person in the bed, you know what it feels like to be sick, you know what it feels like to have chemo, you know what it feels like to be kind of grappling with your mortality. The person kind of a step removed from that, is watching all of that and often feeling really powerless about how to fix it. So, they’ll run around doing lots of other things to try and manage that. But actually, the distress that carers feel can often be really amplified in that space. And that’s particularly true if there’s been other really complex things going on – so, you know, most people don’t have 100 per cent perfect relationships with the people around them all the time. So, you know, initially people might find that relationships strengthen and build, whereas actually if someone’s living with this disease for a really long time, some of those old difficulties might resurface and that might cause kind of fractures in how people relate and so that’s a stressful piece. And so, the other kind of, I guess, complication of that is that if both the patient and whoever’s caring for them is distressed at the same time, that’s obviously a much different situation. I work a lot with young people, and they’ll be sitting there often with really terrible news, saying, “No, I’m fine, everything’s okay,” and then I’ll look to Mum and Dad who are both completely beside themselves and have no idea what to do. And that happens, you know, in adult couples, it happens if there’s a parent who’s unwell and their child is the carer, you know, the parent might be saying, “I feel fine,” whereas actually the carer will be really distressed because they’re kind of thinking about what happens next.

Julie: And it’s hard to watch someone that you love suffer. Simple as that.

Can I ask you, what are some practical ideas for making the carer relationship work well?

Toni: Yeah, so I think the main thing is working out what your person needs. So, we’re pretty good as human beings of running around and doing lots of stuff and feeling like we’re being really helpful, but if we’re not doing things that actually the person wants, that’s not a very helpful thing to do. So, my first kind of thing would be: find out what the person that you’re caring for needs and vice versa. You know, if there’s kind of patients listening to this, find out what your carer needs from you as well, because they might be different or similar things.

Julie: So, what sort of things? Can you get specific?

Toni: They might be really struggling with just getting out of the house. So, people might be spending lots of time together and just getting on each other’s nerves a bit, and actually going, “You know what? We need to go and see some people who aren’t us, and we need to talk about things that aren’t cancer, and how do we facilitate that?” Or it might be kind of recognising, “Actually, you always used to go for a really long walk on a Sunday and you stopped doing that since I’ve been sick, and actually that used to keep you kind of feeling pretty level, so how about we start doing that stuff again?” And kind of having those conversations about, “What does it mean for us to be able to get through this, and what’s going to make it sustainable long-term?” And I think there’s, you know, there’s a bigger piece in that of carers themselves being able to recognise, “What is it that I need to look after myself in this?” – which can be a really challenging question because often all of their capacity is going into, “How do I care really well for this person?” And so, the idea of, “Well, it doesn’t matter what’s happening to me, I can just put that aside,” but we know, as we were talking about before, you know if you’re not looking after yourself then actually the fuel drains out and then you’re really overwhelmed and unable to help.

Julie: And it strikes me that as well as all the emotional challenges, the carer may be juggling a really complicated load of practical matters – things like financial planning and legal issues, keeping track of appointments, providing transport to treatment, preparing food, managing medications, arranging extra equipment in the home, and more. So how do you know where to start?

Toni: When someone’s first diagnosed, it might be that actually their practical care needs aren’t particularly high, whereas actually if they’re approaching the end of their life, that might look really different. Or similarly with equipment and things, you know, if someone’s relatively well that’s not going to be on the radar. And so, one of the best things to do is linking in with your multidisciplinary team around, you know, they’ll give you some ideas around, “Okay, we think we need to engage this now,” or “We need to work with this person.” And so that can help because if you’re a carer who’s never done this before, you have no idea where to start, right? You know, I see people who sometimes have just thought, “Well, this is just what I need to manage,” and there’s probably lots of things that would have helped make their time quite a lot easier but didn’t know that they had to ask for those things or didn’t know what to ask for.

Julie: Exactly. If you’ve never cared for someone before, you might have no idea what support is out there, so it’s important to speak up and ask for help.

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Julie: You’re listening to “The Thing About Advanced Cancer”, a podcast from Cancer Council NSW. If you are looking for more information about support for carers, 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, “Caring for Someone with Advanced Cancer”. You can also call Cancer Council 13 11 20 to request free booklets or to just talk to someone about your concerns.

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Julie: Toni, I’ve heard that research indicates that the early involvement of palliative care can be really useful. How do you explain what palliative care is to people who just think of it as the last few days of life? How do you decide when to seek that kind of support, and what difference can it make?

Toni: You’re right, in that when the word “palliative” is mentioned people often assume that, “Actually, I’m going to die right now,” whereas for many patients I see, they’ve had palliative care engagement for years. So, my way of explaining to patients around palliative care, or supportive care as it’s sometimes known in services, is around, “How do we help you live your best life right now?” So, if you’re in pain or you’ve got symptoms that aren’t being managed, that actually interferes with your capacity to live well. And so, our goal in all of this is, you know, what’s important to you and how do you do the stuff that you value? And often palliative care are really good at managing things like, you know, pain, for instance, which allows people to then go and do stuff that feels important. The early referral to palliative care is really important because it’s about relationships. You know, there might be really big decisions down the track that people will need support and guidance with, and so bringing someone in at that point, it’s a bit unhelpful because it’s – you know, you need time to build relationships, you need time to build trust, and that’s particularly kind of true of carers, who might be the ones that actually end up ultimately making decisions. So, from my kind of perspective is at any time when people have symptoms or are kind of struggling even with some of this “What happens to me?” stuff, palliative care can be a really awesome resource to be linked up with.

Julie: There’s so much happening focused on the person with the advanced cancer diagnosis. How does the carer not lose completely their identity? I mean someone’s got a life-limiting illness, it sort of overwhelms their feeling of being able to care for themselves or even who they are. So, what do you see and how can you help?

Toni: So sometimes people do. Sometimes their whole world becomes about caring and the person they are caring for, their cancer ultimately. So, you know, occasionally I do see carers where all they can think about and talk about is what’s happening for their person. And when I talk to them about, “What’s going to help you here?”, they would struggle to name anything that would actually kind of give them any pleasure or give them any sense of self. That’s an extreme example, but I think, you know, the cancer piece generally can easily take over someone’s world. And I think that’s particularly true when people, when someone’s really unwell, and people are starting to do caring duties that might actually kind of test the boundaries of their relationship. So, you know, often if someone has never done any kind of intimate care with someone and then all of a sudden, they’re showering them –that really changes that dynamic. And so, it’s impossible for that stuff not to impact on the relationship. And so, I think for carers, a huge part of this is, “How do I keep some sense of normal?”

Julie: I was going to ask you that. How do you maintain some kind of normality, particularly in the fortunate situation that your person lives for a long time?

Toni: If there’s an expectation that someone is going to live for a very short time, you can completely dedicate yourself to the caring role. However, if someone’s going to live for a really long time, you can’t do that because we all need other things. And so, my kind of advice to people is, “How do you find the balance in that?”

Julie: That balance was something Susan had to work out in the months and years after Peter’s diagnosis.

Susan: Initially because he was so ill and I thought that it probably wouldn’t be very long, it really wasn’t an issue – I just thought, “Well, I’ll just be his carer and I’ll look after him until he dies.” And then gradually as he, as he actually got better, I found that I had actually really put a lot of my own care needs and health needs on hold. We’ve been unlucky, we had a few other family stresses happening in all this time, and I found after all those things I was doing it a bit tough. I was gradually getting to the point where I just couldn’t stop crying. Every day I would just cry and cry and cry, and it sort of felt like the new normal, but I thought, “This is not a good new normal,” and so I rang the Cancer Council. And I’d rung them a few times over the years and always found them really supportive – just to have someone to talk to sometimes, or to get information. But this day I just was so desperate and that’s when they referred me to the carers’ support group, and I found that enormously supportive – just to hear other people’s stories and hear what other people are going through, and how they deal with things, I find incredibly supportive and helpful. So, it was hard, it was hard to just be a carer but still look after my own needs, but now it feels manageable.

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Julie: Can I say depression – carers of people with advanced cancer must be at risk of depression, and it would be almost natural to feel worried and anxious or even a bit sad. So how do you tell the difference between depression and just the normal grief or anxiety associated with the anticipation of losing someone?

Toni: Yeah definitely and it does come up. We expect that people will be anxious and distressed and worried and fearful about the future – you know, given the context, all makes perfect sense. The times when I get really worried about people is if their own sense of future starts to become compromised. So, they might be grieving the loss of a combined future but then if they can’t even perceive their own future, then that’s the kind of things that we start to worry about. Or if things that would normally bring someone enjoyment, they just can’t be bothered with. Or if there’s a sense of kind of hopelessness about not only their capacity going forward but what they’re doing right now – so, if there’s lots of those really negative ruminations about “I’m a terrible carer” and “I’m not worthwhile” and “They’d be better off without me” and all those kind of flavour, that’s very much more a depressive piece than what we would expect in a carer.

I think the worst scenario is that someone struggles with this stuff and keeps it to themselves and it just kind of keeps building and building, because that’s where we get to that overwhelmed point where people don’t have capacity, not only to not care for someone, but they don’t have capacity to care for themselves. And so, it’s always a better option, you know, if you’re starting to get a bit of a hint that actually things don’t feel okay, do you link in with your GP? Do you call the Cancer Council? Do you hook up with someone at the hospital who might be able to navigate through things for you? So, most hospitals will have psychology or social work services that will see carers, and if they don’t, your GP will be able to point you in the right direction.

Julie: Look, so far in our conversation, we’ve tended to focus on the carer for whom caring has been the kind of central focus of their life, and there is a kind of, I suppose, community understanding that this can be a very fulfilling and important role. But what if you just hate being a carer? You don’t like it, you’re just really not happy being caring, and you don’t want to do it, and yet everyone’s expecting you to do it?

Toni: Yeah, it’s kind of one of those Hollywood movie tropes that when you get given one of these jobs everyone flourishes and it’s the best thing that’s ever happened to them. I almost never meet those people. You know, caring invariably is something that people don’t choose to do, it’s a process of a situation. And, to be fair, when I speak with most people who are caring, they wouldn’t have it any other way, and they would say, you know, “I know that I need to do this.” Saying, “This is something I want or need to do,” is very different to saying, “This is a really enjoyable, easy thing to do.” And I think actually people really struggle sometimes with, “I know I should be doing a really good job of this” and “I know I should be really kind of engaged in this person” – you know, particularly if it’s a long-term complex relationship stuff, right? You know, “In the past this person cared for me and I’m not caring for them in the same way because I don’t love it and I don’t feel this same way,” and so that can often bring lots of guilt and lots of kind of worry and shame about, “What am I doing wrong here?” I think the reality is that caring is really tough, and I think we see that as a society, but I don’t think we name it very often. You know, so I think there’s some kind of communities or families or people that get it really right, where they go, “Actually, we need to share this around.” But having someone who their kind of sole role or sole responsibility is caring for someone else, is a pretty tough ask, and I think we probably need to think broadly about how we support those people, but I think how they then can name that they need some support as well.

Julie: I’ll mention again Cancer Council 13 11 20 where you can get information and support and not be worried at all about being judged if you need help to cope with your role as a carer.

Can I just dig a little deeper on this question of guilt? You do hear carers talking about feeling guilty. Guilty about wanting time for themselves, guilty about thinking about the future when their person may not be with them anymore and how they’re going to manage it. Tell us a little bit more about the sort of things carers say to you, and what you can offer them to help them manage those feelings?

Toni: Yeah so guilt is a bit of a funny creature in that it often turns up and it’s a really difficult emotion for us to cope with and none of us kind of feel like we can manage it very well. I think the main pieces of guilt are around like you said that sense of, if I’m projecting into a future and I’m thinking about what it will be like when my person is not around. And sometimes there’s really tricky kind of emotions tied up in that because that might be, I’m thinking about that space because actually that feels like it might be really relieving for me because where I am right now is really hard, and so that’s kind of, not an escape fantasy, but almost that kind of, “In the future, things will be easier on me.” And then pretty quickly that’s usually followed by, “I can’t believe I’m thinking about this. I must be a monster. How can I think these things?” Whereas actually almost every carer I talk to will have versions of that story. And I wonder whether part of managing it is actually accepting that it’s going to be there, kind of work with that. If you see it for what it is and kind of go, “It’s okay that I’m having these thoughts.” They’re not predictive, they don’t mean anything. It doesn’t mean that actually when your person does die that you’re going to be feeling completely okay. You will be sad, you will grieve, all of those things. It’s just that your brain’s trying to help you out of a really, really tough space.

Julie: Look, just before we finish, if you could imagine someone who has just been told that someone they love has got advanced cancer and they are already a carer or expect to become a carer. What’s three tips for them just to get them starting on the road?

Toni: Just an easy one to finish off. So, I think the, probably the first thing is working out what you need. So, it’s really hard for people to be able to help you if you can’t tell them what you need from them. So, you’ve not been through this before so you’re probably going to struggle to articulate it really clearly, but thinking through, in my day-to-day experience right now, what would be helpful? Is it that actually I need time to myself? Is it that I want more time with other people? Do I need to be distracted? Do I need to go to the gym? You know, what’s going to help in this? Probably the second one is, how do I communicate to the people around me? How do I communicate to the person I’m caring for or being cared by? How do we keep our relationship connected in a way that’s not just about cancer? So, if it’s a partner, for instance, can we have time where we actually just spend time not talking about the cancer, connecting with each other, going to a movie, you know, whatever it might be. And then I guess the third piece is around thinking about how do I be kind to myself in all of this? Because I think by nature, we’re all pretty good at working out what we’re doing terribly and not very good at saying, “Yep, I’m doing this well.” But I guess kind of recognising and acknowledging that this stuff is really hard, you’ve not done it before, there’s no road map to say do this or do this. And so, kind of going with what you need to have happen. So, if you feel really sad, that’s okay, or if you feel really happy, that’s okay as well. And kind of just allowing yourself to move through it however you need without too much judgement on yourself.

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Julie: That’s it for this episode of “The Thing About Advanced Cancer”. Thanks to Toni and Susan for sharing their insights. And we’d also like to thank the Dry July Foundation for their generous support of this advanced cancer podcast series.

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 podcasting app.

Depending on your situation, you might also want to listen to our podcast on caring for someone in their last months. In that episode, I talk to Jane Phillips, a professor of palliative nursing, about caring for someone with advanced cancer near the end of life.

Jane Phillips: If you think about it, there’s so many losses, not only for the patient but also the losses for the carer. You know, probably every day there are little losses with regards to what the person can do, the meaning that had for their relationship, and it’s also part of a normal process of, you know, preparing yourself in some respect that this person will not be with you for a long period of time.

Julie: You can find that episode, “Caring for Someone in Their Last Months,” 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 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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