Self-care for Carers

EPISODE TRANSCRIPT: Self-care for Carers

Julie: You’re listening to “Self-care for Carers at End of Life”, an episode of The Thing About Advanced Cancer.

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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.

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[woman] The Thing About Advanced Cancer

[man] a podcast from Cancer Council NSW

[woman] Information and insights

[man] for challenging times.

Julie: Hello, I’m Julie McCrossin, and the thing about advanced cancer is that if you’re caring for someone in their last months, everyone will tell you, you need to take care of yourself, too. But how exactly do you do that? In this episode, we’re going to talk about many aspects of self-care: practical self-care tips, the importance of sleep, how to take a break, how to manage the many emotions people may feel, and where to get help. And we’re talking with Liz Lobb, Professor of Palliative Care at Calvary Health Care Kogarah, and Liz is also an adjunct professor at the University of Notre Dame and the University of Technology in Sydney. Liz has worked with many people receiving palliative care and their families and carers. Welcome to the podcast and thanks for joining us, Liz.

Liz: Thanks very much, Julie. It’s lovely to be here.

Julie: Now, once people enter the world of advanced cancer, we hear all the time that carers have to look after themselves, and they often call it self-care and say how important it is. So why is self-care so important? Because it feels natural, doesn’t it, to focus most on the needs of the person with the diagnosis?

Liz: Yes, it does. And caring can be very challenging, both physically and emotionally. It can be exhausting. And so just as when we’re on a plane and the flight attendant says, put your own oxygen mask on first before you help others, it’s really important for carers to look after their mental and their physical health so that they can provide the care that they want to do at the level that they want to. Because if they’re physically injured, if they’re unwell, well, then they’re not going to be able to support and help the person.

Julie: And is part of that, too, because it’s very hard to predict how sick someone will get or how long they will live with cancer – and so it may be a sprint, but it may be a marathon?

Liz: That’s right. And I think it goes right back to prior to diagnosis. There may be some symptoms. There may have been some time in getting the diagnosis, then there’s the treatment, going to appointments, having treatment, managing side effects, and then perhaps there’s remissions, some more treatment. And so really, by the time the cancer has started to advance, the carer is exhausted and the patient’s exhausted as well. So you’re almost starting with an empty bucket. And the way that I visualise it is: it’s so important for the carer to keep topping that bucket up.

Julie: Yes, and of course, every carer will need to find their own way to top up their bucket. Here’s how Libby did it when she was caring for her mother.

Libby: I guess I always tried to make time to see friends – that was the biggest thing I felt I could do for myself – to talk to people about what I was going through, but also to just try and forget it for a while and be silly and make jokes, and just do things that you would do if cancer had never been a part of your life. And that was my biggest sort of support, the social outings that became a weekly occurrence for me. I was also a member of a few Facebook groups for people who were either going through cancer treatment or were carers. And that was incredibly helpful. We were able to share support and ideas. And, you know, those sorts of Facebook groups are just sort of open 24 hours a day. So if you’re feeling down, you can always go on and write something and there’ll always be someone there who’s ready to write a response and support someone. So I found that incredibly beneficial. I think, in terms of other self-care things, just trying to eat as well as possible and doing those little things so that I didn’t get burnt out. So just, yeah, making sure my health was in as good a shape as it could be.

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Julie: Liz, we know that many carers also have other responsibilities. They may have children, they may have grandchildren, they may have full- or part-time work. How on earth can they manage all that?

Liz: There’s an expression when there’s a diagnosis of cancer that this is now the new normal. And part of the new normal is that we have to relook at what was the usual way of running the household. And so it may be that you have to let go of keeping the place looking immaculate. It may be that you’re going to have to order in some takeaway on the odd night, to ask neighbours to help with various household tasks. And so the routines that were normally there – and this is, I think, where carers can feel really stressed and distressed, because they’re trying to juggle all these balls in the air. And we’re really, it’s okay to drop a few of them, ask someone else to step into that role, because the bottom line to that is you can’t, you can’t keep up all of those activities if you’ve got someone who is really unwell and you’re going to really need to be on call.

Then on the same hand, it’s so important for the carer to maintain some of their hobbies, some of their friendships, even if it’s having a cup of coffee, organise for a neighbour to come in and sit with the person, getting your hair done. We hear a lot about people not having their health checks – this has long been understood with carers, that they get so time-poor and caught up with caring that they don’t have their mammograms, they don’t go to the GP to get their blood pressure checked, they don’t get that script filled. And it may be to do that you have to let something else go – the house is not so tidy, the dog doesn’t get walked, the washing doesn’t get done for a day or two days or whatever. But this is where it’s so important, I think, to have a list of your go-to people: the person who can walk the dog, the person who can pick the kids up after school, the person who, you know, is going to drop a casserole at the door. And this is the time when you really do need to step up and call on your friends, because they really do want to help – friends, neighbours, church, community, school, community. It’s a community team effect, I think, to do this.

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Rob: I knew that it was really important for me to be functioning at my best level, and I knew that up front, and I sort of worked on getting that right so that I could, you know, provide the optimum care to my wife. My life became very much centred around routine, and sort of discipline, you know. From a personal point of view, I decided I had to swim daily, you know, and I needed sort of about an hour every day to do that. I had a roster of friends who looked after her for an hour. I literally went from eight to nine every morning and, you know, religiously.

Julie: That was Rob who cared for his wife at home in the last months of her life. Liz, let’s go now to practical strategies for self-care. My understanding is that if you’re a carer, you simply must find short moments each day for yourself. But do you have any tips for, for fitting in those self-care moments?

Liz: When the person that you’re caring for, if they’re taking naps during the day – it’s a bit like with a baby, when the baby goes down, grab a nap. And so instead of, “Oh, they’re sleeping, I must put the washing on, I must do something else” – that’s the time to put your feet up, make a cup of tea, perhaps listen to a brief meditation app on your phone, watch 20 minutes of your favourite daytime soap, whatever it is that you need, a tour around the garden, just a walk around the block, if that’s possible. So it’s grabbing moments whenever you can.

Julie: Yeah, mindfulness is talked a lot about these days. As I understand it, in essence, it’s anything that can keep you utterly in the moment and not considering whatever challenges you’re facing – colouring-in, gardening. Tell us more of the nitty gritty of what might constitute “mindfulness”.

Liz: Mindfulness could be your morning cup of tea, where you’re really just focussing on the cup of tea, the warmth of the cup, the taste of the tea. It can be little moments. You can take moments of mindfulness when you’re washing the cup, looking out the window while you’re doing some other task and you happen to see some neighbourhood activity, and just focusing on that. There’s a saying comes from, I think, some of the Buddhist teachers: “When carrying water, carry water”. So it’s just focusing on the task, because I think one of the hardest things for the carer is that your mind runs on, you know, what if, what if, and when, and how will I do this and what if this happens? And so to be able to pull that back to the present moment, to what’s in front of you – and the breath, the breath is with you all the time, and that is, I think, for a lot of people, the centre of their mindfulness. When you’re feeling stressed, you come back to the breath, because the breath is always going to be with us and it goes everywhere with us.

Julie: So if you’ve never tried mindfulness and meditation before, is this the moment to really give it a go?

Liz:  It is about giving it a go. But I think you have to be really careful, because what carers will find is, people are going to be giving them advice: Oh, you must do this and you should do that. And look, I’m going to give you this fabulous, you know, meditation. I’m going to send you this this app every day and it’ll be a five-minute one. And really, if it’s not for you, it’s not for you. And sometimes the expectations of others onto the carer can really add to their load and that stress. And a well-meaning friend will say, look, give it a go. If you don’t like it, it’s fine. And so it’s not about creating yet another task. It’s what works for you and how to adapt it.

Julie: And those basic things of good food, some exercise, even if it’s within the garden or the home, and sleep – just talk a little bit about sleep, because that’s the key to everything and not always easy.

Liz: I know in my own facility, one of the major reasons that someone will be admitted for respite care is carer exhaustion. And so it’s really important very early on to get onto sleep. The challenge with sleep is this hyper-alertness – so you’re constantly monitoring the person, checking that they’re alright. Are they looking a bit pale? Are they a bit breathless? They’re moving a bit slowly. And so it’s easy to take that hyper-alertness into sleep. And so carers can have very broken sleep, or they’re sleeping but they’re listening with half an ear – even when you’re asleep, you’re almost still on duty.

Julie: So if that’s the case for you as a carer, how can you improve the quality of your sleep?

Liz: It is about good food. It’s about being really careful that you’re not having that cup of coffee before you go to bed. Watching your intake of alcohol – it can be so easy to say, look, I’ll just have a glass of wine just to sort of de-stress a little bit, but we know that alcohol can keep you awake. Sometimes we don’t need as much sleep as we think we do, and it’s okay to catnap to be grabbing ten, fifteen, twenty minutes. But if sleep is becoming a real issue – because sleep deprivation has physical implications as well for the carer – that you seek some help with that.

Julie: You mentioned respite care. Now I believe you can use respite care to take a break from caring, whether for a few hours or a few days. Could you explain how these respite services work?

Liz: There are formal respite programs, and that could be as formal as having the person admitted to hospital or to a palliative care service or to a hospice. It depends on the local health district where the person is. There are some services where volunteers will come and sit with the person while the carer can go and have a haircut or a GP appointment or go and have a nap or put on a load of washing or whatever it might be. But I think, it can be very hard for carers to hand over the care. And that’s something I think that needs to be learnt very early on, because they’ll say, oh, look, only I know, only I can understand them. I can anticipate when they’re thirsty. I can anticipate when they need to go to the toilet. But you can also coach someone else into that, and it’s letting a little bit of that control go. Because I think one of the things in cancer is that we can’t control what’s going on internally, so we try desperately to control the outer environment. And that can be very true for carers where they’re trying to control everything and make sure everything’s in place and nothing goes wrong and anticipating the next thing. But it’s possible to coach a friend who can come and stay for the night.

The other thing I think that’s really important around respite is that the carer may be unwell, something may happen. They may have to go to hospital themselves. And so it’s really important that you have written down what are the particular needs: this is when the medications happen; this is the toileting; this is the showering; this is their special loved food; this is their treats. And that you’ve got that prepared beforehand just in case, you’ve got that person who’s been coached into the needs of this particular person – and they’re all individual, you know, you can’t have a recipe.

Julie: I just want to raise this, though – as someone who’s had cancer myself, I’ve mixed a lot with other people with cancer – sometimes it’s the pressure from the person with cancer. They just want this particular carer because they’re embarrassed about needing to go to the toilet or being hand-fed – you know what I’m saying? So what do you say to the carer whose husband or partner or child or parent is saying, I just want you?

Liz: It’s really difficult. And in providing those very personal care needs, the whole issue of dignity. And that’s what it’s about, really – it’s about preserving that sense of dignity. And, you know, if the carer has been with this person all the way through the journey, of course, they can almost anticipate what it is they’re going to need next. But I think this is where – someone I think it was in the UK, developed a carers bill of rights, which is really interesting. And 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 keep the communication open with the person we’re caring for – it may not be a partner, it could be a friend, it could be a sibling – to be able to say, “I need this time. I know that what we have is very special, but I need to be able to do this. It is important for me so that I can keep caring for you.” And it’s about a conversation. It’s about being open with one another, keeping that communication open. Now, it’s not easy, it’s not easy.

Julie: Yes. But even if the person with cancer isn’t demanding, it’s so common for the carer to automatically put their own needs on hold. That’s certainly what Susan found when caring for her partner Peter.

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 I found that I had actually really put a lot of my own care needs and health needs on hold. So I really had to reassess how I was looking after myself, even just basic things like I ended up being really overdue for a Pap smear because I just hadn’t had the opportunity or even the headspace really to think about myself very much. And one thing I had always done through all of this was still go to yoga. And I have a good group of friends at yoga and they know about Peter and they’ll always ask me how he is. And so that’s always been a really good anchor for me to hang on to my own needs. We’ve been unlucky, we had a few other big family stresses happening in all this time, and I found after all those things, I was doing it a bit tough. And so that’s when I rang and joined 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: You’re listening to The Thing About Advanced Cancer, a podcast from Cancer Council NSW. If you’re looking for more information about self-care – 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 “Self-care for Carers’. And on that page you’ll find many useful links, including links to our relaxation and meditation recordings and links to apps and websites that can help you to coordinate offers of help. You can also call Cancer Council 13 11 20 to ask for free booklets or just to talk to someone about your concerns.

Julie: Now, Liz, I think it’s important to acknowledge that we don’t all come from happy families. Some people will be caring for someone they may not actually like very much or who may have even been abusive to them at times. And that has particular challenges. What would you say to that person who’s still trying, for whatever reason, to be the carer? How do they manage that sort of emotional complexity?

Liz: Yeah, first of all, they need to be safe. And it may be that if it has been an abusive relationship that in consultation with the community palliative care team, that person needs to be admitted to hospital for care, that it’s not safe to be cared for at home – and that has happened and can be organised. But I think if this is something that’s been ongoing in the relationship, we know that emotions become heightened under stress and so it can increase, and there are two aspects: It may be that the person needs that physical support of the person being removed from the home. It may be that they need someone professional to talk to, to work out some strategies, that they’ve got a good friend that they can offload on. Because that’s the other aspect, I mean, the language that we use, “caring for your loved one” – not everyone is loved and not everyone is easy to care for. When you’re sick, you can become very self-absorbed and self-centred and very selfish. And that can be very difficult on the carer. And if you’re not in a relationship that you can challenge that, you need to be able to offload. You need to have a friend that you can have a coffee with, a talk on the phone or to be able to go to someone, you know, through the social worker, through the clinical psychologist at the hospital, to get some strategies in place to manage that, because that’s really difficult.

Julie: And it may be that the cancer itself is changing the behaviour of the person, either because it deals with the brain or the sort of medications that someone is on, or maybe the person is just psychologically fighting for their life with a fierceness that’s made them a less sensitive person.

Liz: Yes, all of the above. All of the above. And I think it’s important to deal with the things that can be changed. Like, for example, we know that if the person is on steroids to shrink a tumour, this can increase aggression, irritability, short-temperedness, and so maybe you can talk to the treating team about lowering the dose or adjusting the dose. There are some drugs that do interact with each other. It may be that some drugs are causing confusion, delirium. And so first to get the medication sorted out, that’s a must, and that can be done in consultation either with the community team or with the hospital.

The other, yes, there are aspects that can’t be changed, and that’s why it’s so important to be able to take a deep breath. Sometimes it may mean going for a walk around the block, physically removing yourself from the situation, go to another room, go to your safe space, to the garden or whatever it may be. And it’s understanding that this is the disease or that this is, as you say, the person is using everything they can and they’re angry. Of course, they’re angry that this has happened, that they’re at this stage in their disease, that it can’t be treated. And so to acknowledge that, provided that it’s safe and it’s not a physical expression of that anger, we need to let it go, we need to let that one go to the keeper, leave the room, come back. Sometimes you need to set firm rules. I can remember I cared for an elderly neighbour for about 15 years, and towards the end of his life, he would become quite frustrated and aggressive. And I would say to him, I’m going to go now and I will come back when you’re feeling a little calmer. I will be back, but I just need to have a bit of time out. And it’s okay to do that, to negotiate that.

Julie: Liz, caring for someone near the end of life is naturally an emotional time, and one of the emotions carers talk about and they can struggle with is guilt. Could you talk to us about what could make a carer feel guilty and what they can do to help themselves?

Liz: You know, I’ve got a different take on guilt. I think that guilt is part of grief. I think that guilt is a normal response to a very difficult situation. And the other part of guilt is that we can’t take it away. You may have had a carer that’s done absolutely everything that’s physically, emotionally possible, but they still feel it’s not enough. And so often people will say, but it wasn’t enough to keep him alive or to keep him here with me till Christmas. And so I see it as a part of grief, of sadness, of loss, of if only – if only I could do more; if only I could, you know, be able to care 24 hours a day; if only I knew all the knowledge about the diet and the medications and the language and the terminology. And of course, you don’t. You’re not able to be all things to all people. You have your own needs, you’re tired, you’re stressed, you’re grieving – you’re grieving for what’s being lost and for what is going to be lost into the future. And so I think the response to guilt is kindness, self-compassion, self-care. So when you’re feeling guilty, that’s when you ramp up the self-care.

Julie: And I was thinking people may sometimes feel guilty for what has not happened in the past or what has happened in the past. You might be looking back to the holiday you never took, the job you never gave up even though they kept asking you to come home. Do you know what I mean? You could, you could really start to regret the past, couldn’t you?

Liz: Yes. And regret is part of guilt. Perhaps there are things in the relationship that, yeah, that you feel badly about, and it’s about owning that, it’s about accepting that, perhaps acknowledging it with the person, acknowledging the regrets. But again, I guess the goal is to minimise the regrets, to be able to embrace what we can do, to be able to give voice to the things that we can’t, so that when the person dies, that we can look back with few regrets, that we can honestly say, as a carer, I did the very best I could with the knowledge that I had in a very difficult situation. And that really is about self-compassion and being kind to yourself. And no-one else can give that gift to you. That is the gift you need to give yourself.

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Libby: I think as a carer, it’s very easy to beat yourself up about things that you did or didn’t do, and to regret a lot of things, and I do do that still. I think it’s hard not to do that. But in the moment you make decisions based on the information that you have at hand, and the things that you’ve gone through and are going through, and you have to forgive yourself if maybe they’re not the wisest decisions or maybe they’re a little confused or, or selfish, or if you get angry or have fights. Ultimately, it’s an exceptionally emotional time, emotionally draining and physically draining. And you just get through it because you have to. And really, it’s just – it’s like my heart was just running a marathon and I was trying to keep up.

Julie: That was Libby who cared for her mother during her last months. Liz, you often hear the expression “carer burnout”. What is it and how do you know if it’s happening to you, and what can you do about it?

Liz: You know, personally, I think that the term burnout has such negative connotation, because really what it means is that they’re absolutely overwhelmed. And I think that’s a much more, it’s a much kinder expression, just totally overwhelmed with what’s happening, exhausted. And the way that you can recognise that is that you’re suddenly becoming more irritable. You’re either not wanting to eat or you’re over-eating, you’re eating junk food. It affects your sleep. You can cut yourself off from others – sometimes when you feel you’re so overwhelmed or call it burnout, that you forget that there are other people out there who can help you, you become totally absorbed with what’s happening between the walls of the home or wherever you are. And it is about being overwhelmed. You can become physically unwell, you know, irritable. Your blood pressure can go up. And so it’s a real physical manifestation. And it’s important that to avoid it, that you have these strategies in place early on and that you’re taking – again I come back to the example of the bucket of water, even if it’s a cup at a time, you need to keep topping up that bucket so that you can continue to care.

And burnout is real. It happens in our clinicians. It happens in our carers. And often carers will blame themselves and they’ll feel a failure. They’ll feel guilty that they haven’t been able to give the level of care either that they promised or that they wished themselves. They feel that they’ve not only let the person down, but they’ve let themselves down. And that’s where I think they need to talk to someone – be it their GP, the community palliative care team, the treating doctors – to be able to say, actually, I’m not travelling well, I need some help.

Julie: Look, I’d like to run through some of the key sources of help. So, I think I’m in a little bit of trouble as a carer. What’s my first step for help? Where should I go to? Just in a concise list.

Liz: Okay, so the first step, if you’ve been tapped into a community palliative care team, they would have given you a number to call and an after-hours number. And so that’s your first step, to make sure you’ve got those numbers. Your GP is the next person to talk to. We mustn’t keep our primary health care practitioners out of this loop because often they do get isolated. So your GP, your community team, if the person may be still be having palliative chemotherapy or radiotherapy, talk to the oncologist. A lot of the major cancer centres have a psycho-oncologist – that’s a clinical psychologist who’s been trained specifically to work with cancer patients and their families. I think it’s important that you go to the professional help first because there’s going to be lots of people who’ll say, oh, you should do this and do that. Go to the person who you know is going to give you the help and the time that you need for that specific issue.

Julie: And who have seen many people go through these things?

Liz: Yes. And we mustn’t forget other carers, because there are carer helplines, there are carer support groups, there are online groups that meet, of carers. And it’s something about that peer support – they’ve been there, they’ve done it, they know, they’re going through something similar. And it doesn’t have to be as formal as that – you know, talking to someone who’s down the road, who’s cared for their elderly parents, that peer support, that someone who’s walked that road and can sometimes offer very simple, basic advice.

Julie: And I would also highly recommend calling Cancer Council 13 11 20. There are health professionals on the end of the line and they can link you with support, including carer support groups. You can also join the Cancer Council Online Community, and that has a special forum for family, friends and carers. And if you need to talk to someone at any hour of the day, you can always call Lifeline 13 11 14. That’s Lifeline 13 11 14. Well Liz, it’s been wonderful talking to you and thank you so much. And just before we go, let’s hear from Libby again with an excellent tip for anyone providing end-of-life care.

Libby: Try to love yourself as much as you love the person who is dying, to really be there for yourself as much as for them, because you’re going through so much, you’re going through so much stress and heartache physically, emotionally and mentally, you really do need to look after yourself. The most important thing you can do is take time for yourself.

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Julie: That’s it for this episode of The Thing About Advanced Cancer. Thank you so much to Liz, Libby, Rob and Susan for sharing their insights. And we’d also like to thank the New South Wales Ministry of Health for their generous support of this podcast. If you’re looking for more information, always remember you can ring the Cancer Council 13 11 20 Information and Support service from anywhere in Australia or go to cancercouncil.com.au/podcasts. And 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 to the show, you can do it in Apple Podcasts or on your favourite podcast app.

If you found this episode helpful, you might want to listen to our podcast on providing end-of-life care at home. In that episode, I talked to palliative care specialist Dr Cynthia Parr about what’s involved in helping someone die at home.

Cynthia: We tend to have an idea of what we think will happen, what sort of symptoms to expect, but think of a symptom, any symptom, and that can escalate or intensify out of hours. And the way to deal with this is to expect the unexpected and have a plan.

Julie: You can find that episode “End-of-Life Care at Home” 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.

Julie: 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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