Caring relationships between carers and people being cared for do not exist in a vacuum but, rather, emerge in the context of individual families living in particular communities. This summary is about the impact of caring on family relationships. The carers interviewed described different ways in which caregiving affected their families, and some talked about what helped them address the impact of caregiving on family relationships (see Carers’ experiences of caring for themselves, Carers’ experiences of support groups, support workers and respite care) and Carers’ experiences of psychiatrists, counsellors and other mental health practitioners.
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Tensions and challenges
Social isolation from family
External supports
Julie described how her teenage daughter’s depression meant she had sometimes felt unable to take part in family activities.
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I – all of the family are affected by it. Because her behaviour’s being affected by it. And so there’s frustrations. When, you know, normal things that you would expect to happen in a family, people to help each other, participate in the family activities, and they can’t do it. Or they can do it one week and then they can’t do it the next week because they’re feeling anxious about it. And very difficult for people to understand if they’re not experiencing it themselves. And causing pressures within the family. Yeah, so that was something. I mean, my husband and I did go to some sessions together to help talk about these things. Because it was something we hadn’t experienced ourselves.
So we have a son who’s three years younger. And he’s been affected by how things are in the family. I try to talk to him reasonably often just to, well, to explain to him what is happening, what my understanding is of what my daughter’s feeling. Not sure how much of it he actually took in. But I would keep saying to him, “If this is starting to impact on you, if this is starting to affect how you’re feeling, you need to let me know”. And he would go, “Yeah, yeah, yeah, mum”. [laughs] In true, sort of, teenage boy sort of style. But that’s the way I’ve tried to at least keep him informed of where things are at.
The people we spoke to described how maintaining family relationships sometimes could be challenging. These challenges varied depending on whether the carer was a parent, a spouse/partner, or a sibling. While most people described how caregiving had caused tensions that in some instances adversely affected their family relationships, one carer said she felt caregiving had in some ways influenced relationships within her family for the better.
Sue described herself and her two children as ‘survivors of family violence’. She thought the onset of her son’s mental health problems may have spared them from further harm.
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Well, when we were living overseas and things were going alright, well, I thought we were going alright, I was living day to day because it’s a struggle in a different country to sustain income. It wasn’t unpleasant but it was hard. Hard work to keep a family and to maintain some sort of stability and to educate your children. With the change, I was pretty – I acclimatised, but my children didn’t. And I found that I initially wanted – I explained to my partner that, if it wasn’t going to work in the year, that even though we decided to move because that was his intentions, not mine, that if things didn’t go well, I would get up and come back home.
But he wasn’t negotiable. He trapped us. He made us, yeah we were traumatised and we were, you know, he trapped us. And we couldn’t move because my passports had expired, my children’s passports had expired and he wouldn’t renew them. And I was going to get out of there ASAP but he wouldn’t renew because he had custody, he had to sign off. And it only – I wanted to leave but he was very – yeah he was traumatising me. And he was- he sort of like was blackmailing me to stay. And I wouldn’t leave without my children because I knew he was a horrible human being, I don’t even know why I even made the decision to go. But I thought he might change in a different environment.
Being here in a business under a lot of stress, I thought maybe in a different, more easy going environment, he would be different. He wouldn’t have the stress and he did – he was the same rotten human being he is. So yeah I found it very difficult and I wanted to leave in the first year I was there but I wasn’t capable of doing that. And so in a way [son]’s illness probably saved me and my son from further exposure to other things that could have happened.
And thank God I came back because things looked much – I could see things better here because I was very clouded by a lot of anxiety and stress. So I thought, if I reduce all that and find myself because I lost myself in all of that, and be who I was before all the stress, that I would eventually make it for myself and for my children. So I yeah – both of them were affected by him. And yeah we’re all survivors of family, probably family violence and abuse.
Tensions and challenges
Most people talked about how caregiving gave rise to different tensions within the constellation of family relationships. Parent carers, spouse carers and sibling carers all described how caregiving impinged on family relationships beyond the relationship between the carer and the person cared for. Most people said caregiving significantly affected family relationships. Many carers described how caregiving had caused disagreements to arise within families that had been difficult to resolve. Kate reflected that her brother’s illness had ‘massive repercussions on the whole family’, and George reflected on how his family was ‘torn apart’ due to the ‘enormous amount of tension’ his son’s mental health problems generated within their family.
Elena emphasised the importance of ‘looking after your own relationships’ with the rest of the family.
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I guess once I’d accepted this illness – which was a big step – accepted that illness is there and it’s not going to go away, what I hoped for was the person I cared about would accept the fact they had this illness and work with it for the best quality of life. Unfortunately, in our case the person did not want the illness and wasn’t going to be tagged with the illness or given that diagnosis, wouldn’t believe that, so didn’t comply with treatment. And in not doing that, it caused friction within our family. Because some family members would be trying to just, well, “We need to abide [by] what the doctors are saying and the psychiatrists are saying because they know more than what we do about this illness”. But we could not see the benefits, all the medications were doing was sedating. They weren’t taking the symptoms away. So what damage was that doing to a young person’s mind? You know, I guess we weren’t in agreement.
So within the household it became very difficult. And when we were talking with the clinicians, showing a united front was very difficult. A lot of clinicians were doing the blame – blaming families for the illness itself. So it was very difficult and hopefully things have changed now so that there’s more understanding of the issues that families face. So one thing I guess is having to learn to support the person with a mental illness but in the same time, looking after your own relationships in the rest of the family, which can be a tall order.
Parent carers and sibling carers who were in relationships described how caring for their loved ones who had been diagnosed with ‘mental illness’ had placed varying amounts of strain on their relationships with their partners. Lisa described how she and her fiancé had recently supported her brother by having him live with them while he was experiencing a ‘severe and prolonged episode’, which she said she thought had ‘exhausted’ her fiancé.
George said caring for their son created ‘enormous tension’ between him and his ex-wife to the point that their marriage ‘broke’.
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Any time you’ve got somebody ill in the family in this manner, it causes an enormous amount of tension and as I’ve written in that – that’s what it’s like. It’s just everyone walks around being torn apart but just trying to survive the best way they can. And in the end, it – marriages just, quite often just – they just break, because it’s just too hard.
And, you know, mine broke. But we still have got this dual role of looking after our son, so we’re – even with that sort of a situation, we can still manage it. Every now and again we must communicate, for example the reassessment, I would communicate with her to say, “He’s being reassessed – if you want to discuss and learn more about it, contact the nurse or the psychiatrist, but be aware”.
Some parent carers and sibling carers interviewed were single, widowed or divorced and had not remarried, and were the sole support person. One single mother, Elizabeth, said she felt not being in a relationship meant she had been able to give most of her attention to her son with mental health problems, but she wondered whether caring for him had caused her ‘not to have another partner ever’.
For many parent carers, tension existed between themselves, their adult child with mental health problems and their other children. A few parent carers said their other children did not mind the amount of attention received by their sibling who was unwell. Elizabeth said her other son was an ‘independent person’ who did not get ‘upset’ by the amount of time she spent supporting his twin brother, and Iris’s youngest son helped her to care for his older brother with whom he lived in shared accommodation.
Many parent carers, however, described the relationships between themselves, their other adult children and the person being cared for, as strained. Elena said there were ‘still repercussions’ today on her relationships with her three other, now adult children, due to the fact that her son became unwell when they were teenagers. Most of her and her husband’s ‘energies’ then went towards her son at a time when ‘all needed support’.
Dianne felt ‘torn’ when many of her children moved out of home at a young age because they found it ‘difficult’ living with their brother after he became ‘unwell’.
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Yes, well it makes you feel sad as they’re leaving home, but one of them was sort of half living at home and half at his girlfriend’s anyway. And one of them was older, he went and lived with his grandparents, so I don’t know that he ever came back. But the young one who was younger, he went and lived in the next street with his aunt and uncle, and it’s really hard when they don’t want to live with you. You feel like they don’t want to live with you, even knowing that it’s because of him.
And then you’re torn, you know what do you do? Do you get him out of the house so your children come back, but he’s sick, and you’ve got to look after him as well? And it’s [a] very difficult situation, but then in the end you’ve got to make a decision and you’ve got to look after yourself, as well. And early on we joined the [mental health support organisation]? We had a lot to do with them, we took a lot of their advice, and they used to stress that you come first. You have to look after yourself, and you really do.
Ballagh said that ‘jealousy’ between her son and his sibling who felt ‘neglected’ had taken a toll on her relationship with her other child.
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How has it affected his relationship and your relationship with your other children?
Our other [child feels] neglected, they feel as though we’ve built a house for him and why can’t we do the same for them, they feel that all we ever talk about is [son], is about him and you know, that we don’t care about the other person. There’s jealousy between both of them and I’ve said to one of my children, “You’ve breezed through school, you’ve got a double degree, you’ve travelled the world, you’ve got a great job, you’ve got a partner, you’ve got a really nice place to live in. Do you want to swap sides with – do you want to swap places with him?”
And I think that was like a slap in the face and [my other child] burst into tears and I burst into tears and I said, because that’s basically it, you know? “Look at your life, look at his life. Do you really want it? You know, I mean, we built a flat in in the back garden, he pays us rent. Do you really want to be living with your parents at 35? No, you don’t”. So it hasn’t resolved itself. It never will. It’s really been detrimental to my relationship with my other [child].
A few of the spouse carers interviewed talked about how caregiving affected theirs and their partners’ relationships with their children. Of the three husbands who were caring for their wives, two had adult children and one had young children under the age of ten. Rowan described how most of his adult children who lived interstate kept in regular telephone contact with him and were supportive, but that he felt they avoided ‘dealing with the issue’ of their mother’s mental health problems.
Rich described how his two grown children did not ‘want to talk’ about their mother’s mental health problems.
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Oh, basically don’t want to talk about it. Having said that I’ve done my best to try and get them to talk about it, explain to them the situation. I find them very supportive, that they’ve seen me in some very down moments when I’ve been pretty upset because of timing of episodes. I believe it has helped them understand a lot about kind of family issues and you know the – but they certainly struggle with it a lot I believe, there’s no doubt about that. I think I’d go so far as to say they’re not – certainly not emotionally supportive of their mum.
And don’t – you know they just basically see it as bad behaviour and you know I think I’d be, fair to say that I’ve got past that. I understand it’s not acceptable behaviour but you know kind of it’s not bad behaviour as such that there’s, where there’s reasons behind it. And clearly I think from our discussions we can see that there is reasons behind it being the diagnosis which you know I think is very clear. I’ve done my very best to try and get both our [children] to understand that. I’ve given them information leaflets and things to read and explained to them that this is where it’s at and that’s what the diagnosis has been.
They’re very supportive of me, they understand kind of the challenges that I’m dealing with. But kind of as a threesome or a foursome there’s no way we can sit round a table and have this discussion because my wife would see that she’s being picked on, that you know she’s kind of a victim in all of this and you know she’s the one that needs all the support and the caring. Now my [children] understand that I need some support and you know they support me. I’d have to say possibly more than they would support her but again I can see – I can see why that’s the case. I don’t like it, I don’t understand it. Well I do understand it, I wish it wasn’t there but it is what it is.
Mike talked about trying to ‘minimise’ as much as possible the impact of his wife’s mental health problems on their young children’s daily life.
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Look the kids are well aware because [wife]’s spoken to them about it, about her illness, and well aware of what what can happen. I just talk to them in terms of, you know, mummy’s sick. She just needs some – our help as much as possible, meaning: ‘be good’, most of the time. I talk to them about, you know, what triggers [her] off. And sometimes I feel that they deliberately do it [laugh], you know, but they’re kids. They just – they don’t understand fully. You know I made a decision I’m not going to visit [wife] in hospital any more. I don’t believe it’s a positive environment and when I have taken the kids there earlier on, I don’t know, I saw things that I didn’t like.
The kids got access to people that probably [they] shouldn’t. So I said to [wife], “We’re not coming to visit you any more. You need to know that we’re at home and you’re welcome back here, but we’re not coming to see you any more”. So if the doctors, like if the psychiatrist said, “I think you should go”, I’ll go. But other than that, no I don’t go and see her in hospital any more. I don’t think her illness should affect the way we grow up as a family. You know, it shouldn’t affect, the impact should be – oh [I] try and minimise the impact as much as possible on my life or the kids’ life, which is hard in a way. It’s a very fine balance. So …
Social isolation from family
Many carers said caregiving contributed to their becoming isolated from their extended families. Several factors caused their sense of social isolation, including geographic distance from family who lived interstate, attitudes of blame, and fear of mental illness leading to relatives and friends or colleagues staying away and/or not talking openly with caregivers about mental health issues.
A few carers who were the sole support person found it challenging to visit immediate and extended family who lived interstate. They talked about the difficulties involved in leaving the person cared for at home while they were away, or travelling together with the person cared for.
James, a widower, described how he had taken his son interstate to visit James’s daughter for a week. He said it had required ‘military style’ planning.
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The only thing that did surprise me last year, we went, I went – my daughter lives in [interstate city] – and we went up to [interstate city] for a week. He went up to [interstate city] with me and I didn’t know how that was going to work out but it worked out. There were problems in that, I mean people with this illness don’t look after themselves very well and don’t wash and they don’t worry about their clothes and so on. Now we went up there and he didn’t take, I mean I’d ask him has he got clothes and he’d say, “Yes”, but he didn’t take enough clothes. And then when we got up there we tried to go to a shop to try some on but he won’t try the clothes on and things like that. I think that’s one of the signs that people have this mental illness. So that was all a headache. Now we’re going up there again at Christmastime but I’ll make sure, I’ll do a sort of military type exercise before we go where we inspect the [chuckles] inspect the kit so to speak.
For some carers, it was their relatives’ attitudes towards them that contributed to their sense of isolation from family. Bronwyn described how she turned to her brother for support after her son was arrested by police when he had an episode. She said her brother told her he was ‘not surprised’ about what had happened to her son and that it was Bronwyn’s ‘own fault’ for ‘spoiling’ him.
Dianne said her parents stopped talking to her after Dianne’s son moved out from Dianne’s home.
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My parents had moved to [interstate], I went up and visited them, and explained to them all what he had. Because he was from my first marriage, and so they were pleased that I could tell them something that he had. As the years went on, they weren’t happy with what we were doing when [son] wasn’t living with us anymore. And they tried to put the foot down and say that [son] had to live with us.
And they said mainly, my mother, who’s a very strong person, that if he didn’t live with us, they would wipe me, which they did. She still doesn’t talk to me, all these years later, my father has passed. I’m an only child, I found it very hard. So it really affected me, so it’s one of the effects from the schizophrenia, how it affects other people. I now suffer from depression, anxiety, so I take antidepressants, anxiety medication.
I tried everything to try and repair the thing. It’s hard not having a mother when you know she’s there. But she said she likes things how they are, so she’ll still talk to him, she still gives him money. But my youngest son, has had no contact with her, so strange woman. She’s the one who’s missed out, I’ve had a lot of counselling over the years because of this. The last counsellor was excellent, and he helped me, so we got through it.
Some carers identified a ‘fear of mental illness’ among their family members as leading to carers and the people being cared for becoming socially isolated within their own immediate family. Rowan said he thought his grown up children, aside from one daughter, ‘kept away’ from him and his wife because they did not want to ‘see’ his wife’s symptoms.
Sue described how her daughter’s fear she might ‘get schizophrenia’ from her brother meant she stayed away and ‘isolated herself’ from Sue and her brother.
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Even to some days, I’m going to admit this, but I feel like if I’m not around, if I don’t – if I pass away, I have scary thoughts about what will happen to [son]. And I’ve now, you know, even though my daughter is around and she says that she will look after [son], I’m just scared that, I don’t know if she’s capable. It’s just such a, she’s scared that she would also get schizophrenia as well and she disappears, she doesn’t, she can’t be around [son] a lot. She sees [son] and she’s just, I don’t know, she panics. She just can’t be around [son], she can’t understand [son]. Yeah they’re not very close, although she loves him, but she can’t be around him too long. Yeah and that’s shattering as well. That she has to isolate herself from us and she’s lived an independent life, and it’s just [son] and I.
Rosemary described her youngest son’s ‘mental illness’ as the ‘elephant in the room’ which she thought her older adult children were too ‘afraid’ to talk about.
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I think it’s pretty awful, pretty terrible. Because it’s like the elephant in the room. If I go and visit them, I don’t talk about this younger son, I don’t talk about how he’s going, and they don’t ask. And if they visit me, occasionally they would go out to the bungalow and try and engage him, but very often they would visit in the house and not even go near the bungalow. And the daughter who came from overseas this year, she came, I can’t remember the month but it was recently, yeah, April, didn’t come to the house to see him. So she stayed in a unit and we went and saw her, but…
And what is that like for you?
It’s terrible. That’s terrible. There’s no shared – and this is their brother, this is their sibling. You know, are they that afraid of an illness that they can’t even look at it?
External supports
Some people talked about what had helped them to navigate the impact of caregiving on family relationships. The main supports that people identified were seeing a counsellor and attending carer support groups.
Dianne said finding ‘the right counsellor’ enabled her to ‘cope’ with the breakdown of her relationship with her mother who had disapproved of Dianne’s decision to ask her son to move out.
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You need to find the right counsellor. A lot of them were excusing my mother and finding reasons why she might have done it. Which wasn’t helping me cope, and the last one was excellent and he got it all out of me, how I felt, and I have a right to feel angry that, of what I was going through. And maybe she had had a hard upbringing or something like that, but it wasn’t helping me, and she should have been supporting me as well. And we had the right not to have [son] live with us, when he was obviously not well, he had to learn to cope on his own, we’re not going to be there forever. And what’s he going to do when we’re not there?
Talking to a counsellor helped
Julie and her husband ‘work through’ their different views on how best to support their teenage daughter.
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So well, being a carer in what it entails, I guess, and particularly when you’ve got parents as – so husband and wife, a mother and father trying to work through this as well and having different views on how it – how different understandings of how our daughter was feeling different ways of coping with the frustration has been a challenge for us as well. And it puts pressure on our relationship and we’ve dealt with that as best we can. But we were able to access [non-governmental carer support organisation] counsellor when we were getting to the point where we were really struggling.
We sat down with a counsellor and talked about things and we do have, we have to have regular times of actually sitting down and talking about how things are going. So that my husband can express how he’s feeling and I can express how I’m feeling. And we don’t necessarily always agree on things. But we try and then, try a different strategy [laughs] if you like.
So as a partnership it’s critical, yeah, I guess it is really critical. And my husband did come along to those – the workshops as well which was fantastic. And we really needed to be working together on it.