Victoria’s Mental Health Act 2014 recognises the role of carers in the ‘assessment, treatment and recovery of person who have mental illness’ (section 10(h)). One of the main objectives of the act is to enable and support persons diagnosed with mental illness ‘to make, or participate in, decisions about their assessment, treatment and recovery’ (section 10(d)). Many carers interviewed were of the opinion that learning to care for themselves was a key stepping stone for maintaining their capacity to care for their loved ones. This Talking Point is about carers’ views on what ‘caring for yourself’ (‘self-care’) entails, and their understanding of how self-care can support the quality of life of carers and the people they care for.
Most carers talked about the connection between their role as a caregiver and their life as a whole. People talked about self-care in different ways, including in terms of having, as George put it, ‘something for yourself in life’ and having, in Elena’s words, a ‘balanced life’. Most carers talked about the importance of self-care to enable them to continue to support the person cared for, and for fostering carers’ own identity and sense of self. (See also Impact of caring on relationship with person cared for.)
Quick Links
The place of caregiving in the life of carers
Strategies and outlets for self-care
Tapping into beliefs and personal strengths
When
Elena’s son’s was diagnosed with ‘mental illness’ this introduced many ‘changes’ into the emotional dynamics of Elena’s family. Over time Elena said she ‘incorporated’ these changes into her life.
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Mental illness does change things for people, you know. I guess the things that have happened in my family and my life since mental illness came into it, isn’t just mental illness, it’s other things that’ve been impacted as well. And it has changed my ideas of the future. It’s, you know, like mental illness has – but so has other things in my life has changed – Having a pet. You know, I’ve had, I’ve had two fantastic dogs, you know and I really miss them – they were separate, different times. And yeah, I’ve been reluctant to get another dog because, going on holiday, it restricts you going on holidays.
But I will get another dog I think, in the future or a cat – because I had a dog and a cat for a long, long time, 19 years for the cat and two dogs which were about 12 to 13 and they died, yeah, because they were big dogs. But that changes things as well. Do you know what I mean? And they probably have a big impact. Because a mental illness, it changes a lot of day-to-day things, changes – but not – they’re incorporated now in my life. They’re incorporated. Having an animal and losing an animal, that’s the change I’m thinking of, I guess I’ve come to terms with the mental illness actually being there.
The place of caregiving in the life of carers
Many carers, such as George, described feeling like their life had at times ‘revolved’ around caregiving. Others talked about how they had integrated caregiving into their life. Some said they put the person they cared for first. For example, Mike said he considered himself ‘the low priority’ and that he put caring for his wife diagnosed with severe ‘mental illness’ and young children above his own needs. Others, such as Jeannie and Elena, had put the person cared for first in the past and described how their lives had centred on caregiving as a result. Both said they had later made a conscious decision to, as Jeannie put it, ‘put themselves first’ in their own lives. Sue said her life was ‘based around caring’ for her son. However, she planned in the future to ‘ease’ out of his life and ‘back into her own life’ when he became more able to care for himself.
Saskia said she worried ‘the whole time’ about her sister. This left her little ‘space’ to reflect on the impact of caring on her life.
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Oh, but I worry the whole time for her. You know like there’s all, I mean there’s been so many incidences in her life that have been disastrous and traumatic since you know her getting sick that now any phone call I receive is, I feel a little bit like, ‘Oh God what is it?’ You know?
So constant uncertainty?
Yeah and being a carer I haven’t given much thought to – I’ve not really, I think you always put the person with the illness first and I mean obviously you do but then you don’t have the time or the space to actually step back and go, ‘Am I okay? Am I stressed? Is this affecting other parts of my life?’ and all of that. And it’s secondary and you’re, and that doesn’t happen until the person that’s unwell is you know well enough for you to relax a bit to then you know check in with yourself I guess, yeah.
Jeannie described how she ‘woke up’ to the need to prioritise self-care over caring for her son after her physical health broke down.
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And, I guess, I got a wakeup call, in that sense, when I got so sick with this spinal abscess, because, I mean, that was just something out of the blue. I was flown by an ambulance plane to [city] for emergency surgery and I spent another three weeks down there and, I mean, it was like all the stuff that had, all the family stuff that had happened while I was out to it. All of a sudden, not only was I whacked with that, but I got smacked between the eyes with what had happened to me too. So, yeah, I was sick and it was a wakeup call.
So was the wakeup call of your stay in hospital that could’ve been fatal, together with the [mental health non-governmental organisation], was it those two things that made you realise that you had to take care of yourself?
Yes. I think so. I think, well, the medical advice I was getting, like I spent six months running backwards and forwards to [city] for follow-up appointments and monitoring medications and more MRIs and I was seeing a kidney specialist and the surgeon and I was having weekly blood tests and you know, seeing the doctor every week and monitoring medication and how I was and all the rest of it. And, you know, every time I’d walk out, they’re, you know, “Look after yourself. You need to look after yourself”. “Yes, yes, yes”. Well, it finally started to sink in, “Yes, I do”.
And it was becoming more and more obvious that what was happening with my son was counterproductive to me being able to look after myself. The stress, the emotional stress was just, there was a lot of it and it was counterproductive to me looking after myself. And once I got involved with the [mental health non governmental organisation], you know, they were very supportive of me. Yes, a lot of what we did, I attended some of the [peer education programs], which were very informative in terms of, you know, mental illness and addictive behaviour and all that sort of stuff. But the main focus is on the carer, on looking after you, looking after yourself, because you’re no good to them. When they do get to the point where they’re happy to be helped, you’re no good to them if you fall by the wayside.
Many carers described how caring for another person had led them to focus on that person to the extent they took little time to reflect on how their caring for others had an impact on their own lives. For Elena, a carer consultant, the lack of attention to carers’ own needs was an example of carers not caring for themselves. She said: ‘You ask a carer how they are, and they tell you how the person they care for is’. Julie said she had made a conscious effort not to be ‘totally focused’ on her daughter’s mental health problems; she continued doing activities she had done before her daughter became unwell.
Ebony felt ‘overwhelmed’ when she first found out about her brother’s diagnosis. She said it was important not to be ‘consumed’ by someone else’s life.

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Well I’ve got to make sure I’m not consumed by somebody else’s life too, because that’s foolish and won’t help him or me. But to be quite honest when I first got, heard, his diagnosis, I actually said to a friend from church, I actually said, “My life is over”. That’s how I felt, I felt my life was over and I knew I was exaggerating but I just felt this it was such a big thing that I couldn’t see maybe much room for myself. Because it’s such a big thing.
So I don’t feel that way now, but I did feel that way at the time. Sometimes I think, ‘Yeah, he’s going to be okay’ and that the only problem is the problems the medications present, as in not dealing with the real issues and having, I wouldn’t have even call them side effects, but other effects. To me they’re major effects, they’re not peripheral effects.
I guess I felt overwhelmed. Because I’d been a sole parent, so I brought my children up on my own so around about that time they’re kind of [young adults], you know, just about [left home]. One’s gone [overseas] and one’s around probably for a few more years or so, and suddenly my brother needs me, basically and I love my brother, you know. He’s probably almost my favourite person at the moment, despite everything, because I, I love those qualities about him that are actually both positives, they’re both strengths and weaknesses.
Since
Mike became the primary carer for his wife, he said he found it ‘hard’ to relax. After he had a near heart-attack, he learned to take better care of his own health.
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I find it hard to unwind. Because you just worry [about] what’s going on. So, you know, I’d rather be, I find my ability to actually relax is not there any more. So eventually I know it’s going to overtake me and it has previously. I’ve had a heart problem which I ignored for a long time. I had high high blood pressure, which I ignored for a long time. I actually went off my medication because I couldn’t afford it. So eventually like I was on the mower and I was actually doing my mum and dad’s lawn and I felt bang, bang, you know, and I go, “What’s going on here?” You know?
So I ring [wife] and said I’m not feeling really well and she came and picked me up and she looked one look at me, sent me to the doctor. The doctor gave me some NITRO LINGUAL (glyceryl trinitrate) spray. He called for the ambulance. And I was feeling better after that because I think they stop – I was on my way for a heart attack and they stopped it.
And I had another episode in the hospital and then eight or nine hours later I walked out. And I had to go see – so it took me to – it taught me to take a little bit more care of myself in terms of my own health. But theoretically I’m still predisposed to sort of – I ignore it and that’s where the focus is and deal with my issues when and as they arise. So, yeah, it does take a bit of a strain, yes.
Strategies and outlets for self-care
Many carers described strategies and outlets that assisted them to set a limit on time they spent focussed on the person they supported. Ballagh found it helpful to write about her experiences of caring for her son in a journal. She said once she ‘put down on paper’ any worries with which she was preoccupied, she was less concerned about them. Elena described how ‘mindfulness’ practices helped her shift focus from being overly preoccupied with thoughts about her son, to ‘living for now’.
Jeannie allocated a time each day to reflect on caring for her son. For the rest of the time, she said she tried to put it out of her mind.
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But I do recall at one of the meetings, at the [mental health non-governmental organisation] meetings I went to, there was some discussion about how it’s very difficult to focus on anything else. It seems to consume what’s going on with your child and all the, you know, attendant things that come with it which appear to be common, like, you know, legal issues and behavioural things, family issues. You know, they’re – it’s all just part and parcel of the deal. And somebody said to me and I can’t recall who it was, but somebody said to me, “Why don’t you allocate a time of the day that is your son time. You know, pick a time. Four o’clock to five o’clock you’re allowed to think about him as much as you like. You’re allowed to worry as much as you like. But for the rest of the day, try to push it out of your mind””. And I do that.
And I don’t have set times. But, I mean, the whole point is it creeps in, it creeps in when you’re not supposed to be thinking about it anyway. But, every now and again I’ll find myself thinking about it and think, “Okay, well, now’s as good a time as any. Okay, I’ll, you know, this can be his time”. And for the rest of the time I do try to put it out of my mind and not allow myself to think about it. But it’s somewhere between difficult and near on impossible. I find it very hard to concentrate on anything else and that’s one of the issues with me going back to work. Like, I’ve got the concentration span of a five year old and the memory of a goldfish. And that’s a bit scary when you’ve got a responsible job.
Most people described an activity they routinely engaged in which provided, as Mike described, an ‘outlet’ from caregiving. For some this was important for maintaining their own sense of self beyond their caring role. Rich said he made time to pursue ‘things that are important to me as an individual’. For many, self-care took the form of a hobby, interest or sport. Mike played cricket and went on fishing trips; Elena played squash and Bev spent time gardening. For others, such as James, Rich and Tracey, their ‘outlet’ was going to work, while Ballagh’s was her studies.
George identified ‘having something for yourself’ as vital for carers.
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And I – because I think there’s one area that’s a must. And the must is, you must have something for yourself. Because in the end your whole life revolves around them. And some people, we’ve tried to make [son] as independent as he possibly can be. Well, I’ve lived with him, and even through this period, through all the periods, there’s one thing that I’ve, that I have to have, is you must have something that is yours and something that you look forward to tomorrow to do. In my case, I get up very early in the morning and I go to the gym and I swim and exercise.
And I don’t – that has never interfered with my son because he’s never been awake when I’m doing that. And it gives you something that is just yours and I describe that in things that I’ve written about as being a must. Because I know of people who – they have them living with them and they just surround them, they cotton wool them. And from my experience, that’s not good for them, I mean, I was going to do that here. And I spent a lot of money on this house to accommodate him with his own apartment, and then I realised this was probably the worst thing I could do for him. I’d isolate him from the world.
And, no, you’ve got to – you can’t do that, but at the same time, you must have something, it doesn’t matter what it is. Whether it’s knitting or yoga or anything, reading. And the example I spoke to you of the two women I’ve met lately, and they’re extreme, but still they demonstrate what people are doing. They’re carers of a type, in the case of one woman who’s a carer of a granddaughter with cancer, and she gets up at four o’clock in the morning.
And from four o’clock to seven o’clock, that’s her time, because the baby or the child is asleep, but she does the things that she wants to do and she exercises or she does anything that she wants to do, is done. And I know another woman the same, that has three grandchildren that she looks after. She gets up at three o’clock in the morning, and from three ’til six, she says, that’s hers alone. And these are people that I’ve met, probably because that’s what I do and it’s come up in conversation, that I’ve become aware of it. But it’s important to every – that you must have something for yourself.
Christene described her daily morning routine, which she said prepared her for whatever ‘life’ had to ‘throw’ at her that day.
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Yeah. I get up at six o’clock in the morning, and I have the first half an hour, I read a book. I make coffee. I read a book. Then I take a deep breath and, ‘Okay, I’m ready to deal with whatever life’s going to throw at me today’. And that’s – happens religiously. If I have to take the kids to [city] for an appointment and we’ve got to leave at six, well, hell, I’m up at half past four for that half an hour of read my book and my cup of coffee. That’s my way of stepping out of the world before it even starts [laughs].
Okay, I’ve done that. That’s my little routine. I’m ready to deal with what you’re going to throw at me today, life. You know, you do have to do something that’s my thing, is read my book so I can escape to, you know, William the Conqueror period if I want to. Or we’ll go Greek or Roman this week, whatever I want to read; whether it be fiction, non-fiction, yeah. That’s what I do. But you do have to have something, and that’s easy to do.
Another aspect of setting limits on caregiving which a few carers talked about was learning to say ‘no’, to the person cared for. For example, Jeannie told her son he could not live with her anymore after she started to feel her preoccupation with his wellbeing was ‘taking over her life’. She said she felt she needed to put some ‘distance’ between them in order to ‘actively look after’ herself.
Elena sometimes said ‘no’, when her son asked her to spend more time with him. She said this ensured she did not resent caring for him.
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I needed to have a life, so that when I was with him, I could show that ‘Hey, you know, living is not just staying cooped up in a room. It’s being involved in the community’. And it’s something which I hope that I impart to other carers: that you need to have your own life. You need to look after your relationships with other people. You need to be doing things that make you feel good for your own health, mental health as well as physical health. Because the stresses can take over and take control. Even now, my son will try and coerce me to spend more time with him. You know, if I’m there, he’ll want you’re undivided attention, sometimes he might be doing something, and sort of try to extend that time.
So I’ve got to weigh up how much time I’m willing to be – not that I don’t want to – but how much I’m willing to, without feeling obligated. Because once the obligation is there your attitude changes. So it’s being there with him. Because he can – he’s very astute, very astute. He’ll know. And he’ll know when he’s coercing me and try to, and you know, I’ll just be upfront and say, “Look you, you know, you’re just trying to manipulate me” [laughs]. But yeah, it’s trying to make it valuable time. And he needs space to himself and once he’s had enough of you, he’ll have no compunction saying, “Hey, you know, I want to go to sleep now” [laughs]. So it’s a matter of being honest with yourself as well.
Tapping into beliefs and personal strengths
Carers differed in their explanations of the purpose of self-care. Many said they thought they needed to care for themselves in order to continue caring for their loved ones because otherwise no one else would look after their loved ones. Some carers described self-care as important for maintaining their own identity or sense of self and wellbeing. Alexia said challenges she faced when she became a carer for her son provided the catalyst for her search to ‘find’ herself.
Tracey reflected that caregiving could ‘easily’ become a ‘vehicle’ for carers to lose their sense of ‘who they are’. She felt it was important to care for her own well-being as well as for her partner’s.
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Yeah, I guess one of the main points is you kind of need to look after yourself as well, because if at the end of the day they’re not there or they do get better and the relationship dissolves, you’re going to be responsible for you. So, it is important to care for yourself through the whole illness and, and what comes before it or after it.
How do you care for yourself?
It’s hard, I suppose. It’s probably something that I wouldn’t have known what to do when I was in the middle of the worst part of the illness, I think. I think it’s important to still do things for you. So, don’t just, you know, if you need to go out one night because you haven’t been out for two months, I think it’s important that you do that. And, you know, it may be that you need to make arrangements that, you know, your partner’s cared for or that there’s some other care plan in place on that night, but that it’s important that you still do things for yourself and your own sense of well-being and importance, I suppose. Because it’s quite easy to feel like you’ve just become a vehicle for – or you know, you’ve solely become someone that’s helping somebody else rather than who you are.
Many carers described resources which helped them maintain and develop their sense of self. For some, such as Rich, Ebony, and Alexia, religious faith or spirituality was a source of inspiration. Alexia also found personal fulfilment in her volunteer work as a carer consultant. Saskia said she tried to ‘inspire’ herself though pursuing her ‘passion’ for making art. Rowan emphasised the value of ‘laughter’ for carers’ sense of wellbeing.
Elena said she enjoyed contemplating nature, which gave her a feeling of ‘light-heartedness’.
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I guess, you know, taking, I guess, the sunrise and sunsets, the water – like, really feeling that – doesn’t cost anything and it’s so therapeutic. And I feel sad for people who [laughs], who can’t, feel that. Do you know what I mean? Because not everybody can. But for me, I’ve got little fairy blue wrens and they’ve nested around my place for years and I’ve seen them – the numbers grow and it’s just – I hear the noise every – you know, they’re tweeting every morning. I’d miss it if it wasn’t there. It’s sort of, yeah it’s just, yeah. So I guess, that’s taking enjoyment of the now and it’s a good feeling. So I think…
What’s that feeling like? Can you describe it?
It’s just a light-heartedness, you know. I guess the sunrise and sunset is nature and it’s just the colours and the – I guess we don’t have control over that. It’s just something that has been given us. The same with the birds, the noise and just a magpie’s warble. It’s just, I don’t know, it’s there and it’s pleasurable. Like, some people listen to music. Yeah, it’s sort of, it is that…
Is there a sweetness and a sadness? Is it all unmitigated pleasure or is there something…
I think for me I would prefer to tune on that than dwell in the sadness. But if you hadn’t had the sadness, how would you know that was the happy noises [laughs]? Do you know what – like, it’s having the contrast, the being aware of it. And I know when I’m feeling down and, you know, I have to admit I do feel down. You know, I’m not a young person anymore. There’s different things and I’ve had aspirations.
But I prefer to let my mind wander away on those things that make me feel good, and I guess I’m lucky I’ve got that ability to, because there are some people who don’t. And like I said, if you haven’t had hard things happen, you don’t know you’ve had it easy. I’ve always said, if some people who’ve had what we would think was an easy life, when tragedy happens they haven’t got the equipment to deal with it the same as somebody who has dealt with different things in their life.
Rowan said it was important for carers to look after themselves by having their own goals. He believed his passion for working on his recipe website contributed to support his wife’s personal recovery journey.
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It’s different than that. So it’s never going to go back to the way it was anyway, sort of thing. So reality has to kick in and say, ‘Right, what do I want’. It’s not just what do I want for my wife or anything like that, I have to ask, ‘Where do I want to be, what do I want to achieve?’ and so you have to start setting a few goals for yourself and working out how you’re going to achieve those, as well.
For yourself or for her?
For yourself. To know what you want to do for yourself, what sort of achievement do you want to do? We talked about – I haven’t …
So you’re saying personal recovery is also about the carer knowing what they want for themself, as well as the …?
Yeah, because you can’t – you can’t be much help to someone else if you’re not looking after yourself, it’s as simple as that and so, if I find that the happier I am my wife can pick up on that and she says, “Oh”, or I’ve got a website going and she’ll say, “How’s it going today, dear?” She gets excited about it, even though the numbers and that might not really mean much, but as soon as I say, “Well, you know, we’ve had a big increase in traffic today” or something, she’s excited. It buoys her, but for me it’s my goal. I’ve got a goal of being the number one non-commercial recipe website in Australia and so I have a big goal ahead and I’ve got time to look after my wife by being at home and I can do that as well.
And another thing is, is that you might get a bit of insomnia or you want time to yourself, I find that it’s very – for me, doing the website or with web work is – it’s therapeutic for me. I enjoy it. It’s not like a challenge – a task, it’s something that I would like to do and I’ve got – you know, I treat it like a business, even though it’s just a hobby and no different than you write down what you need to do. I’ll write down what I need to do for the week and all of that. I answer emails and questions that get asked of me and things like that or put them on the right track and it’s such a good feeling [laughs] that you know that you’re doing those sorts of things and learning along the way.
But if I get up at two in the morning because I get woken up by someone who wants to know something, she will fall back asleep again within two minutes and I’m up. Once I’m up it’s hard to go back to sleep, so I make a cup of coffee and I just go and work on the website for an hour or so and it brings the sleep back and then it tires me out and I go back to bed and you sort of go back to a good sleep. It’s not sleep apnoea, it’s just being woken for whatever reason, but I have something practical to do and it’s really good.
So having something outside of the caring role that you can do, I think, is important for your own health and well-being, sort of thing. Whether it’s like I mentioned earlier, golf, you know, if you’ve got a sport try and find some time to do it. But, for me, I needed to find something that interested me that I could do from home and still do both roles and in this instance it’s the website and I’m very lucky that it is like that. So…