Managing Relationships as the Carer

EPISODE TRANSCRIPT: Managing Relationships as the Carer

Julie: You’re listening to “Managing Relationships as the Carer”, an episode of The Thing About Advanced Cancer.

[Music]

Cath: You’re having to retell the story again and again and again, and even though we know that that’s what’s happening, it still breaks our heart to have to keep talking about it. And so that emotional strain is really difficult. The thing that then comes back at us as well is, everyone wants to put in their opinion.

[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 today the thing about caring for someone with advanced cancer is that it can affect every aspect of your life, including your relationships with family and friends. And as the carer, you’re often the one who needs to manage people’s reactions and work through any conflict that comes up, and that can take its toll on your emotional reserves. So, to find out how you can navigate this tricky territory, we’re talking to Cath Adams, a clinical psychologist from the Hunter New England Area Health Service, Genesis Cancer Care and the University of Newcastle. Cath has helped many people work out how to manage the wider circle of family and friends while caring for someone with advanced 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.

Well, welcome to our conversation, Cath. Now we’re going to focus on managing relationships with family and friends when you’re caring for someone with advanced cancer, particularly in those last months of life. Do you think most people realise how taking on the role of carer can affect all your important relationships? Do you think they realise just how significant that is?

Cath: Julie, I don’t think you can realise until you’re in the middle of it. And I think that’s one of the things that makes it so complex. It seems to us to be a natural thing to do – to be a carer for the person that we love. But we don’t really understand the enormity of that task until we find ourselves lost in the middle of it. And so it can be quite difficult then to recognise the impact that it’s having because you’re in it. You know, we don’t realise how strong the current is when it’s carrying us away.

Julie: So, how does caring in those last months affect the important relationships in our life? Can you give us some examples?

Cath: Look, I think it impacts all of our relationships, and it’s really important to remember that. Obviously our relationship with the person that we’re caring for changes significantly because we stop being whoever we were to that person and we become their carer. And that can be one of the trickiest things to negotiate, particularly if you’re caring for a partner. How do I remain your partner as well as your carer? But for all of our relationships, we take on a role as carer that changes the dynamic within the family. And so suddenly we may become the go-to person where we might not have had that role before.

Julie: So what are some of the pressures that may affect your relationships when you’re caring for someone near the end of life?

Cath: To bring it to a very simple level, one of the biggest things that impacts all relationships is the fact that you, as a carer, will experience physical exhaustion and emotional exhaustion. And this will impact on how you interact with everyone. You’ll become very focused on what you’re doing and the person that you caring for. And so your ability to contact friends will be decreased – your focus will be entirely on that person. And so often other relationships just fall to the side. They’re not forgotten – your ability to engage in them is just not there because you’re so focused on what you’re doing.

Julie: And you’re probably time-poor, too, are you?

Cath: Oh, absolutely. It’s – it really is a full-time job.

Julie: Just before we go on to the broader network of relationships that a carer’s managing, let’s focus on that very first relationship: the person with cancer themselves. It might be a parent, it could be a spouse, it could be a child, it could be a close friend. What are the key changes that happen in your relationship with someone when you’re doing serious caring towards the end of life? How does it impact that relationship?

Cath: I think the primary impact is that shift where you become a person that’s responsible for the person that you’re caring for. And so it’s a much more active role and it is more of a leadership role. And you often have to make the decisions on your own. And so, you know, particularly in a partnership, that can be really tricky, because if you’ve had a very equal partnership, learning how to be the decision-maker with no backup is a really tricky thing.

Julie: Now, I’m sure that this is a time when communication must be so important, but as a carer, you’re likely be in a state of stress and distress. And, you know, people may not be at their best as communicators – your coping style indeed may be to withdraw?

Cath: Look, it’s something that I see again and again, and it’s often something that I will work on, particularly with couples, because when we’re in a partnership, we have very clearly defined roles that tend to be about that relationship being equal. And so, as partners, often that struggle is just beginning to recognise: how do we start to have the conversations about navigating this change? And working with couples, often one of the things that happens is one partner will express their view and their fears, and it will be completely the opposite of what their partner is going through. And that’s a really crucial thing to identify early, because that tiny separation in worldview can lead to a much bigger separation, and it can lead to the separation as partners before the physical separation caused by someone dying.

Julie: How do you prevent that, because, golly, that sounds tough?

Cath: It’s really tough. And I think sometimes, particularly if it’s been difficult to have hard conversations in your relationship, it’s worth talking to a professional about that. It’s something that I would spend, you know, probably a tenth of my time doing, just working with couples, navigating how do we actually begin this phase of our life journey together?

Julie: And is that the same for parents, children, brothers, sisters?

Cath: Yep. Look, it’s one of the things that I’ll often try and do if I’m meeting a patient that’s at that stage, that’s found out that they’ve got a cancer that we don’t think we can cure anymore, is to have a family meeting and say, let’s begin to look at who does what. Who’s good at communicating – you know, who wants to take on the role of passing information on to people?  Who wants to have a support role? And then as things progress, it becomes easier to recall the support people and review those roles and look at what’s happening.

Julie: So some families would manage to have a family meeting by themselves, others need help. Is it possible give us a rough estimate of who needs help and who doesn’t? You know, what proportion of families?

Cath: Oh, look, I’d say it’s probably close to fifty-fifty. Some of us communicate well as families and some of us don’t communicate well. You know, if you’re a carer and you’re listening now and you’re thinking, well, maybe we could try that – say to them, do you think we could try and sit down and talk about who might do what? And if everyone sort of says, yeah, that’d be great, then you’re fine. If everyone goes, Oh, look, I’m busy until May, then probably it might be time to think about just talking to a professional, you know? And so, so anyone that works within the counselling sphere.

Julie: Hospital social worker, members of a palliative care team, or a psychologist at a hospital like yourself.

Cath: Absolutely.

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Rob: There are people who actually cross the road when you’re walking down the street because they feel uncomfortable, they don’t know what to say, you know, and it certainly happens. We saw it happen. I think it is important to provide information to people that matter to you and to the one you’re caring for. It can be very helpful, for example, sending an email to people saying: My spouse isn’t doing so well. She’s having a test on Monday and we’ll have the result on Friday and we’ll let you know next week. But we appreciate your support and you know, that sort of thing – because a lot of the difficulties of communicating with family and friends come about because of uncertainty and feeling uncomfortable.

Julie: That was Rob who cared for his wife, Fran, at the end of her life.

Cath, let’s talk about communicating with the wider circle, the rest of the family, friends, work colleagues, sporting clubs or whatever. If you’re the main carer, keeping up that communication can be absolutely exhausting. Why is it so exhausting?

Cath: Look, I think it’s exhausting for two main reasons. One is you’re having to retell the story again and again and again. And even though we know that that’s what’s happening, it still breaks your heart to have to keep talking about it. And so that emotional strain is really difficult. The thing that then comes back at us as well is, everyone wants to put in their opinion, or help in their way, or come up with their answer. And so we’re continually also having to say: Look, that’s great, thank you. At the moment, we’re trying to follow what the palliative care team is suggesting – you know, like so you’re constantly having to, you’re having offers of help, but you’re having to reject them in a sense, you know, because we’ve got our way of doing it. It’s human nature to want to help. And we all have opinions about what might be helpful.

Julie: And so one way to manage that is to ask a member of your family or a good friend to take responsibility for the regular communication updates. And technology can help us out here, too, can’t it? You could send out group emails or leave a message on your answering machine or voicemail, and you can also use closed Facebook groups or other social media. So you don’t have to keep repeating yourself.

Cath: No, absolutely. And one of the things that can be really lovely is for the person with cancer themselves to dictate something to you as the carer that you can type and then send to the people that disperse information, you know. So that people really get that direct communication but it’s at no real burden to the person with the cancer or to you as the carer.

Julie: As well as keeping up with the communication, there’s the coordination of help. So generally, do most people get offered a lot of help? And what are the challenges associated with those offers?

Cath: Look, I think a significant proportion of the people surrounding someone with advanced cancer will want to help. And I’m laughing a little because it’s now six years since the last member of our family that we cared for died, and we still have frozen spaghetti bolognaise in the fridge – because one of the things that people will go to is cooking. I think there’s lots of different apps and online programs that you can access now that can be really helpful for ensuring that you harness that help in a way that’s actually helpful. And so tapping someone else, you know, having someone that does communication and someone that organises the help can be really useful.

Julie: And so that could be, as you say, coordinating what food you’d like to receive and when—

Cath: Exactly—

Julie: And also transport to and from care or to appointments—

Cath: —having some company so that the carer can have a break. You know, that can be a really important thing because as a carer you can become so caught in that situation that you completely lose your sense of self, you know, and so having a roster for people that will just come and spend an hour and give you a chance to have a break—

Julie: Housework and dog walking—

Cath: Absolutely, all of those things. And these apps and the online platforms are awesome at the breadth of the things that they allow you to roster people to do.

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Paul: There was constant support and giving and people dropping in and checking that I was okay and how Waz was going, if I needed anything for him? Can they do my shopping? Can they do this? It was really, really lovely. The double-edged sword part of it was that I became quite stressed about the fact that so many people would say, what can I do to help? Just call if there anything I can do to help. And I, I don’t know, I honestly don’t know what, what you can do. Just, I’d just say, just keep talking to me, check in, come and see him, talk to him. But in terms of practical things, I didn’t feel comfortable like palming things off to other people, even though I knew I could ask and I knew that, you know, and a couple of times that I did ask, it was, it was very gratefully received. That’s probably one of the things that I wished I’d done differently, that I had found a way to let people share the burden with me a bit more, because they really wanted to. And it upsets me that they might feel that I somehow sort of cut them out of the process in some way. I didn’t intend it to be that way. But when they would offer help, I just didn’t know what to ask for.

Julie: That was Paul reflecting on the many offers of help he received when he was caring for his husband, Warren. You’re listening to The Thing About Advanced Cancer, a podcast from Cancer Council NSW. If you’re looking for more information about support for carers, including links to useful apps and websites – or if you’d like 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 “Managing Relationships as the Carer”. You can also call Cancer Council 13 11 20 to request free booklets or just to talk to someone about your concerns.

Now, Cath, we’ve talked about how sometimes you could almost have too much help, but when someone is getting very unwell, as some people do before they die, do some family members and friends retreat because it just feels too tough? And what can you do about that if you’re the carer?

Cath: Some people do and some people don’t – some people want to come in more. And both of those things are difficult to juggle. But in terms of the people who pull back, I always counsel people to just try and think about the fact that what we’re confronting here is not just the mortality of the person who has cancer, but it makes us consider our own mortality as well. And for a lot of people, that’s very difficult. And so that will be the reason that they pull away. Other people just don’t know what to say, and they think that saying the wrong thing would be worse than saying nothing at all, and so they will disappear for that reason. For a lot of people, it just brings back their own experience of losing people that they love, and it’s too hard for them to go back into that place again. So I always try and just say to people, try and come from a place of compassion when you think about why people might be withdrawing. It’s usually because they just can’t do it or they don’t know how to do it, you know, and if it’s someone that’s really important to you, then it’s worth just reaching out and saying, I don’t need you to do anything or say anything, but if we could just catch up once a week and talk about the weather, that would be great.

Julie: Cath in an ideal world, your family and friends will all rally around you. But do we need to acknowledge that some families do have really difficult dynamics, and the stress of providing end of life care may only intensify conflicts? That’s correct, isn’t it?

Cath: Look, it is. And I think, if you’re a carer and you’re thinking that sounds like my family, Julie, then that’s a time to try and seek some support from a professional, to try and set up some rules around the family dynamics. Because the thing that’s important is the person that sits at the centre of it, and they need to be able to see the people that they love, whether those people are talking to each other or not. And so it’s just building a respectful dialogue around how are we going to manage this? How do we make sure everyone gets their chance to have time? How do we cover the issues that are important to everybody? And in that sense, it can be useful to have someone that’s a family friend maybe even act as a bit of a mediator, that just sits, you know, if there’s someone that’s not actually family in the room, we’ll behave ourselves a lot better than if it’s just us.

Julie: Or seek out as you’ve indicated before, a palliative care team member, a counsellor – social workers are often very experienced.

Cath: Yep, they are.

Julie: Because I have to say that on rare occasions I feel I’ve observed a dynamic where people lose sight of the very unwell relative, and old rivalries, old habits, old resentments dominate. It’s an incredibly upsetting thing to witness. But it does happen, doesn’t it?

Cath: Oh look it does, and I think even in families where there’s very little dispute, it will still bring up differences. This doesn’t necessarily bring out the best in us. It brings out our pain and our emotion a lot of the time, you know. And so, I think the thing to try and work towards as a carer is, if there are disputes happening, just trying to keep them away from the patient. And you may have someone who’s the “security manager” and their role is just to say, okay, can we can we talk about this outside please? It’s time for Mum to rest. Because one of the things that’s important as a carer – and this is a really crucial role – is that you’re trying to actually keep things as stable as you can for that person, you know. So just trying to guide those conversations away, but not to sweep them under the carpet because they will keep coming up – if we don’t address issues, they will keep being raised.

Julie: Well, look, what I’d like to do, Cath, is just raise a couple of very specific situations with you and get your core tips. And the first one is that you’re the main carer and suddenly another relative or friend becomes very critical of all your decisions and gets deeply and suddenly involved, even if they may not have been involved very much before, and they disagree with a lot of what you’ve been doing. What would you say there? What are your tips for that?

Cath: Look, this is sadly quite a common thing, and it will often happen at one of the most difficult times, where the patients actually become unconscious. And so the person that’s dying has, has literally really begun to die, and someone that may have been holding back will suddenly come in, and it may be that they’re not coping because they can see that this is happening, or it may be that they’ve waited until the person can’t speak for themselves. And I think it’s really important that we always try and think of that possibility from the beginning. And so as a family and a group of carers and support people, we’ve got a plan for if this happens, how are we going to handle it? Who do we think is most likely to do it? You know, who’s the person that gets on with them best? How can we try and just keep this managed in that sense?

Julie: One of the times when people may express really strong opinions is when the decision has been made to stop treating the cancer and to go for comfort care. Now, the carer might understand the decision, but others in the wider circle, friends or family, may have an intense desire to keep the cancer treatment going in hopes of a cure. So your tips for managing that situation?

Cath: Look, you know, again, that’s, sadly, a pretty frequent occurrence and it tends to happen where there’s not been that communication. Don’t ever forget the treating team – be that the original medical oncologist or radiation oncologist or perhaps the palliative care team – are often happy to explain to family members who are struggling with these issues why this is the decision that’s being made. So that can sometimes help because it just shifts that responsibility a little bit away from the person with cancer and the carer to saying, well, this is what the medical team, this is what the experts are telling us. Again, people are less likely to be unreasonable with the medical expert they don’t know, than they are with their family member or their friend.

Julie: So, again, seek help from the professionals, whether as a patient or a carer or both, seek help.

Cath: Yeah, you know, I mentioned earlier that concept of having the person with cancer dictate something to the carer that they can type up that gets sent out to people. That can be a really good thing that you can fall back on, so that if issues like this arise when someone’s not able to talk for themselves, their wishes are clearly there, you know.

Julie: Another issue that can come up is that a member of the family or a close friend suddenly becomes intensely committed to a “miracle cure” – and I put miracle cure in inverted commas. And this might be an alternative approach that lacks evidence. It might be expensive. It could even be painful. It might even involve international travel. What can you do as the carer if someone becomes really strident about this?

Cath: They’re really tricky situations to approach. There’s a lot of emotion involved, so that makes it difficult to have, you know, what we might call sensible conversations about it. I think it is important to not forget, you know, calling on the team, the medical professionals, to talk to the person about, you know, this supposed or potential cure that they’ve come up with, to just try and get them to have a conversation about what is the evidence for it, what might happen? It’s important to have practical conversations with them around what it would be like if they were to go to another country and the person was to die away from everyone that they love. I think it’s important, you know, often talking to either the social workers or the pastoral care workers within a hospice or a palliative care team, just to try and tease out the reasons that might sit behind why this push is happening. And is it truly because that’s what the person with cancer wants, or is it because that’s what this other person that’s come in has wanted, and just gently trying to bring it back to say, but we’re here for this person and we have to respect their wishes.

Julie: Let’s just hone in on a really difficult situation, where you’re talking to someone who may be assertive to the point of becoming aggressive or intensely emotional and really difficult, you know, really difficult, and you’re feeling very, very overwhelmed and upset as a carer. Just that immediate thing. Any communication tips when someone’s really out of order and over the top?

Cath: Look, I think the first one is to remember that, you know, particularly if you are the primary carer, you do have the perfect reason to have to leave the conversation, because you’re caring for someone. And so it’s perfectly okay to say, I can’t have that conversation now, I have to go and do such and such – we will come back to it, but I think we need to come back to it as a group, not just one on one, because I’m finding it very difficult to have this conversation with you. So I think it’s important to acknowledge, you know, that this is difficult for you, but also to just say it’s not the sort of conversation I can have off the top of my head, I’ve got other things that I have to do in my role, and so we can come back to this at another time.

Julie: But my next question, Cath, is, how do you deal with your own emotions afterwards? Because sometimes I think as a carer you can feel that people are just grossly unfair and insensitive. So how do you deal with your own distress after someone has been what you consider to be unreasonable?

Cath: Look, I think it is important to have someone that’s “yours”, that you can talk to, and it might be the pet, it might just be going for a walk out in the backyard and letting off some steam. But I think it’s finding someone that, you know, you can honestly say, I’m really struggling with this, or, I’m over so and so. You know, have that conversation to just let that out of your system.

Julie: It strikes me, Cath, you know, you’ve emphasised a number of times advanced planning is the key and it’s never too soon to allocate the communication role or the organisation of a network of support or who you would turn to if you got into difficulties. If you know you’re in a family where there are some individuals who can become difficult – plan for it well ahead. Is that the nub of it?

Cath: Absolutely. We know our family. We know our support people. You know, we know – whether they’re our birth families or our found families – we know the roles that people play. And so just trying to think ahead, you know, and remember that this is one of the things that palliative care teams negotiate most often. They’ve got structures in place. They’ve got rules. Often they’ve got the setting like a hospice. And they’re very respectful of the fact that everybody has a right to see the person and spend time with them, you know, and that will help juggle those awkward situations as well.

Julie: You know, we’ve tended to focus on the challenges, as one does. But, you know, do you observe sometimes that either family members or friends become much closer than before, they turn out to be rather good at this situation?

Cath: Absolutely. You know, I think the opportunity to care for someone you love is something that I would encourage people to try, even if they felt they couldn’t do it, because it is just a different environment and it changes your relationship in a way that brings everyone together, you know. And so for a family, it’s about putting aside the differences that we may have because we recognise that we love this person and we want to be here to support them. And it is a very intimate time, you know. Particularly as the person gets sicker, you’re helping them much more with things like getting dressed and getting showered, you know, and you’re spending time in a way that’s very personal, and that’s very powerful. It is an amazing opportunity. And I know of all of the people that I’ve supported who’ve been carers, I’ve never had one that said I could never do that again – they said I wouldn’t want to – but, you know, they’ve valued that time because it’s just a completely different way of interacting and relating.

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Julie: Well, that’s it for this episode of The Thing about Advanced Cancer. Thanks to Cath, 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, we’d love to hear from you. So leave us a review on Apple Podcasts or on our website. And 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 self-care for carers. In that episode, I talk to Professor Liz Lobb about how you can look after your own needs if you’re caring for someone with advanced cancer.

Liz: Someone developed a carers bill of rights. It’s quite strong and it says things like: I have the right to have some time out from caring. I have the right to look after my own health, to contact my friends, to be able to have a cup of coffee or a meal. And I think if we can say I need this time, I need to be able to do this, it is important for me so that I can keep caring for you.

Julie: You can find that episode “Self-care for Carers” 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 Cance”, a podcast from Cancer Council NSW.

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