Family Dynamics and Cancer

Transcript of Episode 16: Family Dynamics and Cancer
The Thing About Cancer podcast, Cancer Council NSW

[Episode ID] You’re listening to Family Dynamics and Cancer, an episode of The Thing About Cancer podcast.

[Series intro]
[woman] The very essence of all cancers is a change in the way that cells divide.
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[man] I remember sitting in there thinking, you know, it’s not happening, it’s not real, it can’t be real.
[woman 2] It’s something that we don’t talk about.
[woman 3] This feeling of being overwhelmed − it will get better once you have a plan and you know what to expect and what’s going to happen. It’s not going to be like this all the time.
[various voices] The Thing About Cancer: A podcast from Cancer Council NSW. Information and insights for people affected by cancer.

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Julie McCrossin: Hello, I’m Julie McCrossin and today, the thing about cancer is that a cancer diagnosis doesn’t just affect one person − it has a huge impact on the entire family. But are there things that families can do to manage that impact and work better together, or is conflict inevitable?

Cath Adams: We often don’t think about the impact that a diagnosis has on a family, but it’s actually crucial in those early days for families to begin to look at how they can change the way they interact, and support each other through this. Because one of the primary things we do when we’re trying to adjust, we don’t want to worry the people we love.

Ray Araullo: So when I think of conflict, conflict happens on a good day in life, let alone on a day when someone steps into your life and says someone that you love has their life at risk now, someone that you love is living with cancer. So conflict is relatively normal. What’s abnormal is that you’re in this circumstance, you’re in this somewhat traumatic circumstance.

Julie: I’m talking with psychologist Cath Adams and social worker Ray Araullo. They have both helped many cancer patients and their families adjust to the changes caused by a diagnosis of 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 could also call Cancer Council 13 11 20 if you have any questions.

We’ll hear more from Cath and Ray in a moment but first here’s Matt. Matt learnt a lot about cancer and how it affects a family after he was diagnosed with prostate cancer.

Matt: Get the family together early and say, “Okay, this is going to have some impacts and here’s the sort of things I’d really like to be able to do and the things I might need some support with, and it could be longer than what we’re thinking it’s going to be.” I think that’s really important.

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Julie: So, Ray, as a social worker I’m sure you see lots of different types of families. Can I start by asking, what exactly is family in this current era?

Ray: When I sit down with a person who’s newly diagnosed, I let them define what family is. I’m interested in the people in their lives that stand by them, that they recognise as the key people who love and support them. I think that it is often parents, it is often siblings, it is often your loved one, your partner − it normally boils down to three or four people that the patient identifies are the key people, the key spokespersons.

Julie: And sometimes these key people might not be related by blood. They might be close friends that act as your family. So we know that cancer can have an enormous impact on the family − it can smash routines and normal family roles. How can people adapt to the different roles they’re all playing?

Ray: When you get cancer, it impacts on all levels of the family. It’s not an easy gig, there’s going to be difficult moments, there’s no shortcut around it. But if anything I would encourage the patient and the families to be patient with themselves as they settle into their new routine, as they settle into their new normal. They haven’t had a lifetime to grow these coping mechanisms − they will come with experience.

Julie: Perhaps you can explain further how cancer can affect family dynamics.

Ray: Again it’s enormous, but families come together on the basis of years of generational growth. They’ve learnt their roles, they’ve learnt their identity. I recently had a family, a beautiful family, two children, and the daughter was a 25-year-old diagnosed with cancer, and you couldn’t have two more devoted parents. Father was the person that the family went to get things done and fix things − he began to take on the role of, have you taken your medications, have you cleaned your hands, have you etc. etc., when all she wanted to do, she’d spent three weeks in hospital, she’d done her job, she wanted to go home and put her feet up and home was what she had aimed for, but when she got home she had a milder version of a hospital scene. So in terms of that dynamic, Mum was working very hard trying to ask Dad to back off, in the end Dad came to see me and said, “I’m working harder than anybody else but people don’t understand that.” And I had to sit him down and say, “Talk to me about your daughter’s needs, talk to me about what your daughter’s missing, what is she saying to you.”

Julie: So what are some common reactions as a family is rocked by a cancer diagnosis?

Ray: Oh look, in the first few weeks: I can’t believe this is happening, this is surreal, I can’t believe this is happening to me, let alone my daughter or my son or my husband. I have to make decisions before I’m ready or have fully processed the implications of my decisions. The doctors are coming in to me and saying to me, “Here’s the protocol, we’re ready to go.” I’m two weeks in and I’m still back at: is this really happening to me? And there’s no reason, there’s no surprise then that other members of the family are saying: Did we really have to do this? Are we certain that the blood tests were accurate? Have we had a second opinion? And it’s all coming from a good place, we want to make the right decisions for such a critical moment.

Julie: So, Cath, as a psychologist would you say that a diagnosis of cancer really tests families?

Cath: Oh it really does. And look, there’s a general perception out there that cancer will bring families together, but it actually introduces an enormous stressor. And so it is really important for families to recognise that it’s a normal part of the process to get cranky with each other, to not be supportive of one another, to really struggle, particularly in that initial stage but then when something changes as well.

Julie: What helps a family to cope well with a cancer diagnosis?

Cath: Look, for families that cope well generally what we see is they have pretty good communication patterns. You know, they have an effective way of letting each other know how they feel. And so this is just another big thing but it’s something that they’ve already got the skills in being able to talk about difficult stuff. So often families that are doing okay at this time have had past trauma, you know, they’ve had stuff happen before and so they’ve learnt to be resilient.

Julie: What are those skills and what are the signs you’d look for, for a resilient family?

Cath: Being able to sit down and talk about stuff, and talk openly about stuff. So in good open communication in a family around cancer, we just talk about the facts of what’s happening and what that feels like. So some families are really good at talking about just the facts, some families are good at talking about just the feeling, but we actually need a combination of those two things so that everyone stays on the same page. We often are fearful of telling the people that we love the truth because we want to protect them. Part of being in a family unit is about keeping that unit safe. What we want to really bring about is the ability to sit down and say: this is what’s happening, this is how I’m feeling, how are you feeling, do you have any questions?

Julie: You know some families have a skill at managing conflict and are able to let someone boohoo in the corner, cry or get angry, and others don’t have those skills.

Cath: Exactly. Ideally we should all have those conversations where everyone is able to express their own emotional response openly without any fear of being called out. But look there are actually still families which cope quite well by all being very stoic and having people outside of the family that they cry to. You know, so if the family dynamic works that way, and that’s actually what’s gotten you through, then it’s okay to keep doing that.

Julie: What if there are in your family, and I think they’re in many families, old conflicts, old rivalries, or indeed sibling rivalries, if you can explain what that means. How do you manage those histories that people bring to this highly stressed situation?

Cath: Those difficulties and conflicts do not go away, if anything the cancer magnifies them, puts our family organism under stress, and so any past conflicts will come up again. Sibling rivalry will get worse, we have all sorts of competitions. And the traditional sibling rivalry is a competition for our parent’s affection, but within families it can just be a competition to be the most important sibling.

Julie: What if you’re a family member and the person you’re having the most difficulty with is the person with the cancer diagnosis, and you want to do the right thing?

Cath: Yeah, look that’s a really common problem, Julie. I spend a lot of my time working clinically with family members who are experiencing that frustration. One of the most important things is just to say to the person with cancer, “I really want to help you. What can I do? Please tell me, and if it’s nothing I’ll accept that.” It’s really hard when someone we love is suffering, and it’s someone we love in a conflicted way, to find a way of helping them. And what we tend to do in those situations is come up with our belief of what’s going to help, and often it’s not the thing that they need. So first thing is just to give them that opportunity. If they say, “I want no help,” then just try and accept that, but look at the people around them, the other family members and look at how you might be able to provide some support that way. We need to help the people that we love − it’s really hard when we’ve got this conflict, but we don’t necessarily have to do it in a really direct manner. We can still be helpful without engaging in a negative interaction with the person.

Julie: And if you’re experiencing those odd deep, dark feelings you can have about family members, or even if it’s expressing itself in open conflict and you’re putting stress on each other, what can you do about it? What are some tips there?

Cath: I think, one of the things that can often happen is we have a sense of having to fix those conflicts in this situation. If we haven’t been able to fix them for 20 years, it’s unlikely that now will be the time to do that. And so the simplest approach is if you have an issue, say, with a sister, going to talk to her. If you don’t get any sort of resolution, then the only thing you can do yourself to solve that problem is to go and talk to someone yourself to talk about your feelings. You can’t fix hers, you can’t change hers, but you can try and change how that pain sits within you − that’s often the most effective thing. That might be a friend, it could be someone in the family, someone outside of the family, it could be a professional like me.

Julie: So it sounds like it can be helpful to accept that the conflict exists and not try to fix it?

Cath: Exactly. Look, one of the things we feel often that we should do is somehow miraculously be able to cope with things better when there’s a cancer diagnosis in the family, but that’s actually adding an enormous burden and stressor to the family, so to expect ourselves to learn a new way of doing things at that time is really asking a bit too much. Accept that the conflict is there. Use the techniques that you’ve used to manage it in the past. So that might be giving that person jobs to do, you know, what can you actually trust them to do? It might be not having communication with them at all. We often feel like we have to have a new way of dealing with this, but this is well-established conflict. So we don’t have to have new ways of doing this, it’s about thinking about the things that we’ve done in the past that have been effective.

Julie: Ray, as a social worker what are some of the ways you manage conflict among family members within a hospital?

Ray: So I sit with the families individually, because sometimes they can’t take it together. So I sit with them individually. Invariably, they want to work in the best interests of the patient, so at different times we’ve had people visit at different days or come in the morning, come in the afternoon. So invariably, we get to a point where the patient is still at the focus, they get the individual support, and we just recognise that this is a longstanding conflict brought to a head because of the circumstances, the unusual circumstances − we’re not going to resolve it, we just want to manage it. And it’s that bigger picture of, we just want to manage the distress.

Julie: You sometimes hear about people having family conferences at the hospital. Could you explain what a family conference is, and what role a social worker may play in it?

Ray: We often coordinate family conferences on the ward or in the cancer centres. A key part of our role is just about creating a safe space to facilitate those conversations and some understanding. We will ask the team to sit down, the family have raised six or seven questions, very good questions, we can’t answer them. Why don’t we sit down and hear it all and get it clear.

Julie: And how does a family conference help people manage their conflict?

Ray: What I try to do, is recognise it for what it is, that it is relatively normal given the circumstances, and I want to try to take the heat out of it. And that’s what I spoke about earlier about trying to facilitate a safe place where people can put their questions on the table and their concerns on the table. And it’s more than fair. I want to recognise each individual about their concerns and have them feel as though they’ve been heard. Because it’s coming from a good place, it’s coming from a passionate place to save the person in front of them, their loved one. At the core of this is the patient still, at the core of this is what works for the patient, what lifts their spirits.

Julie: Cath, is it helpful to have a professional mediate these conversations?

Cath: One of the things we know is if we put our family together in a room, all of the past tension will arise. If we’ve got a stranger in there, we’re more likely to behave for a little bit longer and so we can actually have a functional conversation. It doesn’t mean it won’t blow up, often it will. It’s about working out what I want as a patient first, but then talking to the family about how everyone can play a role in meeting my needs. The other thing that having a mediator does is it takes the pressure off the patient from having to say yes and no to people. And it actually brings about a joint decision, you know. So it is important I think, the more we can bring in someone else to help us mediate those really tricky family situations − they are increasingly common, you know. Cancer doesn’t always make us behave well, sometimes it makes us behave terribly. And if that’s what’s happening in your family, that’s when it’s important to bring someone in, and social workers are the absolutely best people to contact.

Julie: You’re listening to The Thing About Cancer, a podcast from Cancer Council NSW.

I’m Julie McCrossin and I’m talking to psychologist Cath Adams and social worker Ray Araullo about managing changing family dynamics after a cancer diagnosis. If you have any questions about this topic, or just want to talk to someone about your concerns, you can call Cancer Council 13 11 20.

For links to any of the services we mention, or to listen to more podcasts, visit cancercouncil.com.au/podcasts and click through to this episode, Family Dynamics and Cancer.

We’ll go back to Cath and Ray in a moment, but first we’re going to hear from Matt. Not everyone needs a family conference with an independent mediator. Matt’s family came up with their own solutions to help with communication.

Matt: We all like talking, you know, so I think we had to have a speaking ball at one point, going “Hang on, there’s too many people talking at once. There’s the speaking ball, how about we respect it?” I think we had to do that once or twice. So there’s definitely a quality of just talking it out and being respectful about what the wording is. I know I used wording that was inappropriate in many occasions, particularly when I was fearful of what was going to happen or I was getting frustrated about some of the waits before the tests. And I got a bit direct with my language. And I do remember one of my family members going “Can you just use a different word there? That would be very helpful.”

Julie: Ray, it’s common for family members to take on different aspects of the caring role. Do you ever help patients and their families work out who’s going to do what?

Ray: Oh absolutely, and one of the first things people say to me is, “I’m so tired of telling people what’s going on. I get so tired of answering my phone calls and responding to Facebook,” and we have a conversation about, you don’t have to do all those things. Identify the things you’re finding problematic and find someone in your family that can take care of that for you.

Julie: So what are the classic things that families organise to be done by different people? What are those core cancer support roles?

Ray: So often it’s someone is going to be given the role to help communicate the communication flow. Someone’s also going to run the interference with the people that are well meaning but sometimes when they come in, they take more because they’re so upset − so someone’s going to run interference there. Some people are better equipped to deal with the emotions around your illness. And some people aren’t, it’s no negativity − they’ll be very good at the logistics, they can bring in meals, maybe do the communication in the background, do the transport in the background, help with community services, coordinating there. They can do any number of jobs.

Julie: Cath, how important is it for families to share information openly when someone is going through cancer treatment?

Cath: One of the things we understand is, the more people in the family who are sitting in on a consultation, the better the family’s understanding of what’s happening is. And look, we really know very clearly from a number of studies that have been done looking at family dynamics and family coping in this situation, if the family is well informed, everyone will cope better. If the carers are not well informed and they don’t understand what’s happening, the patient’s less likely to actually manage to get through their treatment, but the carers are also going to struggle as well.

Julie: And a group email can be useful too?

Cath: Absolutely, emails, texts, however you send information. It really is building on your strengths as a family and how you communicate with your outer circle using those techniques.

Julie: And are there some tips you can give us about how to make decisions as a family?

Cath: Look, I think if you’re a family member listening to this, the first step is to recognise that the person that has cancer wants your input. That’s one of the things we realise, they don’t want to have to make these decisions on their own. Part of that is because they’re hard, scary decisions but part of it is because they have a huge impact on the family. So it’s actually really helpful if you’re involved in the decision-making process. And then it’s just learning how to do that as a family, because we don’t always make decisions that way. Often we have one or two decision makers in the family that we go to, they make decisions, we follow them. So having this collaborative decision-making process can be a bit tricky, but if we start with relatively easy decisions − who’s going to take me to chemo on Wednesday − then we just begin to build that skill of having conversations as a family around bigger and bigger decisions as things change.

Julie: Ray, do you have some tips for family members who are just feeling a bit lost?

Ray: I think that sometimes it’s frustrating for families because people want to come in and fix things, people want to act. And sometimes there’s not a role to act, it’s more a case of just: “I need you on the fringe for when I need you − are you able to do that for me? My care and love for you in our relationship hasn’t changed, it’s just my needs have changed for a short period of time. Can you do the right thing? Can you be there for me when I need you?”

Julie: Imagine now someone who’s been asked to pull back a bit, maybe even visit a bit less or be less emotional. What would you say to someone who’s feeling hurt and unappreciated?

Ray: I would say that cancer is a sinister thing, that it’s tough on a good day but it’s particularly mean when you would feel like this when you care so much. When I see someone who’s worried about not doing enough or not being appreciated, I try to let them know, you’re doing everything you can. Okay? The circumstances aren’t entirely under your control.

Julie: Matt, who was treated for prostate cancer, agrees that sometimes there may not be a role for all members of the family and sometimes you just feel like being alone.

Matt: I think it would be honest of me to say there were some situations where I actually removed myself from family and friends deliberately because I was a little worried about their emotional state in my presence. I remember a couple of times, somewhere in these three visits to hospital, where I said, “Hey, just, if anybody does turn up, I’m going down to the garden, I’m going to listen to some music and do a bit of writing. I’d be really grateful if you could just tell them I’m in some sort of medical procedure for the moment. I’m just not available,” because I just wasn’t sure about their reaction to some of this stuff. I think it’s something that we’ve got to own and take control of and go, right if we’re not up for it, let’s just say: “No, not right now. Thank you very much and how about coming back tomorrow?” That’s kind of how I did it and some variation of that might be helpful for others

Julie: Ray, if you’re struggling with family relationships, where can you go for help?

Ray: First things first, you’ve always got access to the oncology social worker. And I’m not saying that we’re the panacea for everything but we’re the starting point. Then we might refer them to other services even within the hospital such as psychology or psychiatric services. But if necessary, there are a number of external services, private and public services, that are available. The Cancer Council line is also a very good place to start.

Julie: That’s “right, you can call Cancer Council 13 11 20 to talk to a qualified health professional about anything to do with cancer or if you’re having trouble with your family after a cancer diagnosis. Cath, who do you think are the best people to contact if the family dynamics are getting a bit challenging?

Cath: Within the team the people that have got the expertise to help are the social workers, the psychologists and the psychiatrists − they’re really the people that are trained in family dynamics. You can talk through how that feels, how you sit with that pain, and how you can get it to an easier place where it’s not impacting on everybody. Everybody should know their social worker, I think, because they know about stuff that only social workers know about, and so they can help people, family members as well as patients, to access the supports that are out there that no-one else knows about.

Julie: Ray, I want you to imagine I’m a brand new patient, I’ve just had a diagnosis. Is there anything I can do right at the beginning to help my family support me?

Ray: From the beginning, my thought is: articulate your needs. Let the people who care about you most know what it is you’re going to need to get through this. Allow them to follow your agenda. Not have them second-guess what you’re going to need. Because if they have to second-guess, they might get it wrong or they might be directed towards their own agenda. Let them know what it is you need.

Julie: And what tips can you give family members beginning their journey of support?

Ray: First thing I would think of is, be patient with yourself. This is a long ride, you can manage and you can succeed, but it’s going to take a while to settle into it comfortably. Be patient with yourself. Secondly, I want you to be able to prioritise your care as well, you’ve got a significant carer’s role here, the last thing we need is for you to fall over. So you’re going to have to have clear communication with the patient. There will be times you need to step out, and people call it self-compassion, if you like.

Julie: And Cath, what are your key tips for someone who’s just had a family member diagnosed with cancer?

Cath: So the very first step, if you’re a family member and someone that you love has been diagnosed, is to go to them and just say, “I don’t know what to say, but I’m here to support you.” − if that’s how you feel, don’t say it if you don’t. But just make it known that this is a situation that there are no right words for. But you just want to sit with that person, just be with that person and then just go along on the journey with them. Try and listen to what they need, you know, and provide the support that they need. But also just as crucially, identify how you can care for yourself, because as a carer, if you don’t care for yourself − and I’ve been a carer and I was terrible at caring for myself − it’s actually crucial to being able to provide the support that the person you love needs. So it’s about, how do I make sure I get my time, just a little bit of it, to re-build myself before I go back into that situation. So they’re the two things I would say. Just go to the person and say, “I don’t know what to say but I want to help you in the way you need me to and we’ll work that out. But also just be aware I need to be a little bit selfish and care for myself so I can be the best carer possible.”

Julie: And here’s some final words from Matt about the impact of his cancer diagnosis on his family.

Matt: I think the family dynamics does change, but in a good way. We’re able now to talk about a lot of things that would’ve stressed us out to the max before our experience.

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Julie: That’s it for this episode of The Thing About Cancer. Thanks to Cath, Ray and Matt for sharing their insights.

If you’re looking for more information, you can ring the Cancer Council 13 11 20 Information and Support service from anywhere in Australia. They can send you a free copy of Cancer Council’s Caring for Someone with Cancer booklet, which is full of information about the impact a caring role might have on your life. For links to the online version of that booklet or any of the services we mention, visit cancercouncil.com.au/podcasts and click through to the episode Family Dynamics and Cancer. If you have any feedback on this podcast, we’d love to hear from you, so leave us a review on iTunes or on our website. If you’d like to subscribe to the show, you can do it in Apple Podcasts or your favourite podcasting app.

If you found this episode helpful, you might want to listen to our podcast on Cancer Affects the Carer Too. In that episode, I talk to psychologist Ben Britton about the carer’s role and the importance of looking after your own needs while supporting a person with cancer.

Ben Britton: One of the common but worst things people can do is completely withdraw from all their social circles. What you’re always aiming for is to be a whole person, so you’re a cancer patient and a friend and a daughter and a mum, or whatever, and the same as a carer, you want to be a carer and a, you know, tennis player and a librarian. Be as whole as you can be.

Julie: You can find that Cancer Affects the Carer Too episode on our website at cancercouncil.com.au/podcasts.

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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 this has been The Thing About Cancer, a podcast from Cancer Council NSW.

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