This Talking Point is about the support carers received from family members in caring for the person being cared for who had been diagnosed with a ‘mental illness’, and the share of responsibilities for caregiving between family members. (For carers’ perspectives on the impact of caring on relationships with family and the wider community, see Impact of caring on relationships with family and Caring and community).
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Dynamic of care in the family
Outside support
Most of the carers interviewed were providing support for one family member diagnosed with a ‘mental illness’, with a few, like Alex and Christene, supporting more than one family member diagnosed with a ‘mental illness’. Most carers we spoke to were parents caring for a son or daughter, and most of those parents were mothers.
Four of the carers were caring for a sibling, five were partners or spouses, and a few of these were ‘young carers’ in that they had become carers when they were under the age of 30. Lisa began supporting her mother in caring for her brother when she was 10, Tracey began caring for her same-sex partner when she was 22, and Ebony was about seven when she began supporting her father in providing care for her mother.
Lisa described how she became a carer for her brother when she was only 10 years old.
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Okay, so my journey as a carer started when I was 10. So my older brother was 19 years old and he was diagnosed at that point with something that resembled a drug-induced psychosis. Or, I think at the time they called it schizophrenia. And because our family unit is quite small and my mum, who’s the only other member of our little family, has a disability, a lot of it fell on me, which was quite a strange position to be in as a small child.
Trying to navigate the mental health system, which at that point was probably even worse than it is now, although we are making some improvements. So at that point my brother spent quite a few months in hospital. And we weren’t really given much, or I certainly wasn’t as a child given much information about what was happening to him, or how we could support him in his recovery process, or just even what his prognosis was, or how any kind of instruction about what was really going on with him.
So it kind of triggered off quite a long fumbling of our way through the whole system or systems. I guess there’s – can’t really talk about it as an isolated thing. There’s lots of systems within one.
Dynamic of care in the family
While many people were the only carers for the person being cared for, some shared their caring responsibilities with other family members. People caring for their own child or a sibling especially mentioned how their spouses, former spouses or parents worked with them to provide support. While George was the main carer for his son, he described how he shared caregiving with his former wife who he said had been ‘very strong’ in her support by taking their son out on shopping trips, visiting him in his home (which George had bought and set up for him), doing his laundry and preparing meals for him. George said ‘its been a joint effort’ which they’ve developed over time.
The support could be two-way, with carers supporting each other and the person cared for who experienced ‘mental illness’. Sasha, for example, said when confidentiality agreements made it difficult for her and her husband to get information about how to support their son following his ‘diagnosis of schizophrenia’, she and her husband provided ‘really good support for each other’. Although it was a struggle, ‘when one tired the other one kept going’. (For disclosure of health information, the relevant section of the Mental Health Act 2014 (Vic) is section 346(g) which enables disclosure of information in general terms to a friend, family member or carer, providing this is not contrary to the views and preferences of the person concerned, while section 346(h) enables disclosure of information to carers where this is reasonably required for determining the nature and scope of the care to be provided.)
Kate described how she and her mum cared for her brother. She saw her role as providing general support for both her brother and mother.
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I think that my mum and myself are the main carers, I think that mum’s probably the main carer [sound of pet dog snoring faintly in the background]. I feel that my role is also to care for my brother but as a sort of support for my mum as well. I think, initially, it was a lot around education and trying to get our head around what was going on, and then as its moved on its more about acceptance and learning to live with the illness and what my brother is sort of capable of.
As far as my role as a carer goes, I speak to him a lot, like nearly every day. I’ve helped him quite a bit with his money, with sorting out his finances and budgeting and learning to live on his own.
Katherine explained that when her son would not take the advice of his psychiatrist or listen to her, she asked her former husband to speak to him. She thought their son seemed to listen to his father more than to her, when he was ‘unwell’.
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And so as you said before, there is that window of opportunity where I could actually encourage my son to take some responsibility. After a certain point that doesn’t happen. I really have to push much harder. I’ll involve his father who he’ll listen to more at that stage too. So during his period when he’s well he listens more to me; when he’s unwell he listens more to his father, so we sort of work together [laughs] to get things happening.
So for instance last time I could – so my son went to see his psychiatrist and I was at the meeting. The psychiatrist said, “You need to go back on your antipsychotic”. My son said, “No, I don’t think I need it”, and of course the psychiatrist can’t force him to unless he’s hospitalised. And so he says, “Oh well I’m not going to. I’m not going to, I don’t need it”. So what I do is I ring his father and say this is what the psychiatrist has said: do you think you can work to get him to change his mind about that? And his father was able to, so we go back to the psychiatrist.
And I mean I – just sort of amused in a way that, you know, he’ll listen to one person and not another. But so we go back to the psychiatrist and the psychiatrist said to him, “What made you change your mind?” And he said, “Well my father” – But what his father had said was, “You’re going to one of the best psychiatrists” – whether he is or not, but he said that – “You’re going to the best, one of the best psychiatrists. Why wouldn’t you listen to what he says?”
And so my son said, “Well that’s true, why wouldn’t I? So I’ll do what he says”, you know. But you do have to sort of gather the resources that are available to you to persuade the person, because you know it’s in their best interest.
A couple of carers talked about how input from close family members who shared caring responsibilities could create challenges where there were different approaches to care and supporting treatment decisions.
Whereas
Saskia, her sister’s main carer, took a ‘preventative’ approach to her sister’s care, Saskia said their mother preferred to provide support when situations arose.
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And she stays for quite a long time, sometimes a month or two at a time or sometimes just a week, it just really depends. It depends on my sister if she’s, you know willing to have that extra person around her all the time. Sometimes she really likes it and sometimes she doesn’t at all. She wants her independence. So yeah, I have this attitude that I would rather the support before a catastrophe rather than after.
Whereas my mother has more of the attitude of, ‘I will be there when there’s a catastrophe’. Or, you know, when we really need help rather than more preventative [support], I guess. Well, that’s how I feel that she treats the situation at the moment and that’s where we’re conflicting [laughs] at the moment. I mean it’s been really, really difficult because we often disagree about the ways to deal with situations when they arise. But we try …
You and your mum?
Yeah, but we try to communicate as best we can and come to a decision about what to do with a particular scenario or drama that’s occurring.
A few carers who were caring for a spouse mentioned challenges related to receiving or not receiving input on caregiving from other family members. Although Rich said he found his adult children to be ‘very supportive’ of him as caregiver for their mother, he felt their reluctance to ‘talk about it’ meant they had not yet developed an understanding of ‘the reasons’ behind what he said they at times perceived as his wife’s ‘unnecessary’ behaviour.
Tracey said she had experienced some ‘conflict’ about treatment decisions with a member of her partner’s family.
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So, I think, yeah, the first hospital admission would have been [five years ago]. Probably in the first few months of …
What was that like for you when she went in?
It was pretty heartbreaking. I didn’t know what to expect of any instance, and she wasn’t 100 per cent sold on doing it herself, so it was kind of, you know, she was a bit, I guess, annoyed at having to do it, but, you know, understanding that she probably needed to. So it was pretty hard on me being the one saying, “You know, I think you, you should do it”.
Because I guess her – she had a family or a mother that didn’t agree with medication as a treatment, let alone a hospitalisation. So yeah, it was, it was hard to find that support for me in having her away from home for so long. There’s been quite a lot of conflict since with my partner’s mum and myself, in that my main priority was to protect her and that meant, you know, sometimes her mum didn’t need to be informed of things that were going on.
But she seemed to want to be involved in, or at least give her opinion on the contrary. So there was, yeah, there were times of conflict in that respect, I suppose.
Outside support
Although most people interviewed were the main carer, outside support from other family members was also mentioned as a source of help for them and for the person being cared for. Carers felt supported predominantly by extended family, spouses, former spouses, children, grandchildren, friends and even family pets.
The kind of support carers talked about getting from family members varied. It could mean just feeling there was someone who cared about them, or who they could be ‘open and honest with’, as Lisa put it. Similarly, Rowan said one of his daughters was a good ‘sounding board’ and often suggested questions for him to ask his wife’s medical team. Financial help was also mentioned. For example, Sue’s father gave her financial help, which she said she would have struggled without because she was living on a carer’s wage while caring for her son, and in turn, Sue helped her recently widowed father: ‘We’ve lost my mum and I’ve been helping him as well … So we’re all helping each other’. In another example, Tracey’s mum asked her and her partner to move in with her so they could save money to go overseas. For a few carers, sometimes just having a family member pay a visit could make a difference.
Following receiving his diagnosis of ‘mental illness’,
Rosemary’s son kept himself isolated. When Rosemary’s youngest daughter and grandchildren visited, the grandchildren played with Rosemary’s son and got him to come out of his room.
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And in many ways, she’s been the most consistent. She’s my ray of sunshine [cries]. Sorry. She was adopted. And she comes every week, and the little grandchildren, the little girls, they go into [son’s name] room, they go into my son’s room and they say, “Come and play games”, and they play on the video with him, or they just wave. And the baby, who’s now 12 months, just walks in there and looks. And they actually bring him out of his room. So he will come out and talk with them sometimes.
And I got the very best Mother’s Day present this year. My daughter asked if we could go over to her place for Mother’s Day tea. And she said, “Ask him if he will come”, and he came. Very uncomfortable [laughs], and we bought Chinese food, but he was out, and I had to go home quickly, I couldn’t make it too long, because you could see that he wasn’t going to cope with a long visit. But, and this is since he’s got the diagnosis, and since he’s got the medication. So I am hopeful.
Outside support could, however, be sporadic, or related only to some aspects of the life of the person cared for. Some said family support had only been offered some time after diagnosis. Lisa mentioned that from her perspective, extended family were more supportive when her brother started to get better. Then they spent more time with him and acknowledged ‘what he’d been through’.
Elizabeth described how her relatives had offered different ‘sorts of support’ including Elizabeth’s sister who had been like a ‘second mum’ to her son.
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One of my sister’s has been very – she’s sort of more like a second mum, I suppose, for my son. Because he feels that he can – when I was busy and working and I couldn’t just leave a classroom to talk to him. Because every now and then he’d go through a terrible sort of nervous panic attack or something like this, he would ring her instead of me. Or he’d try to ring me, and if I couldn’t get – he’d ring her, if he really had to.
I mean, he has rung Lifelines and things before, but he’ll ring her and she’ll just have a bit of a chat to him, and she understands pretty much. She’s been very supportive of me as well. The others are just not as available and haven’t connected quite as much. But they’re very supportive of his music career.
And all of sudden they’ll come to things that he does, and they’re very interested in what he does, but it’s not quite the same sort of support. So I just, yeah, I’ve been the carer, and it’s been good most of the time. But yeah, you have your moments.
A few carers mentioned getting support from friends. Christene, who was caring for her daughter, husband and grandson in a regional area, described how she had no parents or husband to give her support. The only respite and relaxation she said she got was when she met a friend with a large family: ‘So we sort of might swap kids, or we’ll take all the kids out there. They’ve got an in-ground pool and we sit back and make sure no one drowns, and dream that we’re sitting on a beach drinking pina coladas’.
Outside support could also be missing because family members lived far away or were not involved due to their attitude towards ‘mental illness’. Jeannie described her former husband dealing with their son’s ‘illness’ as something she said he told her he could not ‘handle’, and Sue and Rosemary said they believed some of their children were ‘afraid’ of their sibling’s condition.
Although she had one very close friend who was a support,
Bronwyn said she felt some of her relatives and work colleagues did not ‘understand’ hers and her son’s situation.
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Apart from your niece – have you been supported in your role as a carer by anyone else, friends or family?
One friend, people stay away. We don’t have visitors except for probably a couple of close friends. But one lives out of town so I don’t see her very often but there’s another very close friend I’m in contact with her every day but we’ve basically become, well it’s a bit reclusive, yeah, people don’t drop in. Family don’t understand, the day after he was taken by the police, arrested, the morning I was beside myself.
So I rang my brother which I think was a mistake but if I can’t rely on my family … [laughs] So I rang my brother and he said, “What do you want me to do, do you want to come?” So he came from [city], sat on that couch and said, “Well, you know it’s your own fault, he was always spoilt. You know, it’s your own fault. I’m not surprised this has happened, he was always the spoilt one.” So that’s the kind of attitude from the family. Yeah, so I wouldn’t do that again. People just don’t understand it.
And then since it’s happened, if I’ve been, I go back to work to do some relief work and I might sit in the staff room and say something about my son, it’s like you can hear the crickets, people don’t respond, they don’t say, “Oh, how’s he going?” Or, “Oh, yes and what did he do next?” And like I might tell a little anecdote about something that we did or – there’s just total silence. People are embarrassed and I don’t know how you get over that. Yeah, it’s an embarrassment.
Pets could be an important source of comfort, not only to the carer but to the carer and his or her loved one’s whole family. Kay described how her son ‘just absolutely adored’ his dog, and Bev mentioned a strong ‘connection’ between her son and her ex-husband’s dog who Bev said was ‘beautiful’ with her son ‘from day one’. The dog had once escaped from the house and found its way to the unit where Bev’s son was living.
Kate spoke affectionately about how her family’s dog gave emotional support to her, her parents and her brother.
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Yes, my mum often says that, you know, he’s like this little counsellor for our family. He’s just always there and there’s been a lot of grief, a lot of sadness, it’s been very difficult, a lot of confusion. There’s been a lot of really uncomfortable, difficult emotions around dealing with mental illness and having a beautiful little snoring [sound of big audible snore from pet dog asleep in the background], loving, little furry friend, has just been this constant source of calm and joy.
Like, there’s been many times when my brother has been not travelling well and he’ll just come and lie on the couch with the dog and if he’s been having trouble sleeping, you know, the dog will help him sleep. And it’s just been this amazing calming loving influence on our family. It’s been quite massive and every single family member would say that he is without a doubt the most popular family member [laughs]. He is completely spoilt but we don’t care. He’s yeah, it’s been quite big.
I don’t know if it would’ve had such an impact if he’d been a lot more of an active sort of dog. But the fact that he – that he’s sort of so chilled and and slow and quiet and you know just sort of wants to hang out, yeah, it’s been massive for – because he has been around for the vast majority of the time since my brother was diagnosed. So he’s very special to all of us.
