This Talking Point is about the support carers said they received from carer support groups and charities, and through attending courses and workshops run by support groups and charities. This included getting information and advice, but also, importantly, making friends with other carers and getting peer support. Carers also mentioned receiving support for themselves in many different ways including from the person being cared for’s case manager, mental health unit, General Practitioner or mental health practitioner, seeing a psychologist themselves and through self-care (see also, Carers’ experiences of psychiatrists, counsellors and other mental health practitioners, Carers’ experiences of General Practitioners, Carers’ experiences of caring for themselves).
Most of the carers we spoke to had considered attending, or had attended, a support group. Carers often found out about support groups by searching for information on the internet, and a few found out about groups through articles in the press or word of mouth.
This section includes people describing their experiences of caring for loved ones who attempted to self-harm, which some people might find upsetting or distressing to read. All the material on this website is intended to support carers to develop a better understanding of these behaviours, and how to get help for the person cared for. If you need help, please visit our Resources and Information page which includes confidential helpline numbers.
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What support groups offered carers
Support workers and carer consultants
Getting more involved with support groups
Temporary Alternative Care (respite care)
Katherine talked about how she first came across support groups in her area.
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Who did you find out your information from at the beginning?
Well I just rang. In those days I don’t think we had the computer so I would have just rung numbers, just you know, people, places where the – I don’t know how I found it. But I would just start somewhere and I wouldn’t care where it went. So I eventually found out about an organisation called, [non-governmental carer support organisation] and you know, there was [non-governmental organisation].
But [non-governmental carer support organisation] used to run support groups, so I went along and the support groups actually had guest speakers. And so I went along to all those meetings. Not because I – I didn’t actually like going to support groups where people sat around talking about their ill person that they cared for.
I didn’t need that. I just wanted information, so I’d go along to all the situations where they had guest speakers. I’d go to conferences. [Non-governmental carer support organisation] would run conferences; sometimes I’d go to those. I just made it my business to get informed in all sorts of ways, you know, about the legal system, about the mental health system, about all the different therapies that were around.
I just went to everything I – anything I could. And I didn’t find it boring. I mean the part that I didn’t like was people just sitting around talking about the unwell person. I just – for some reason that didn’t work for me.
What support groups offered carers
Carer support groups could be a good place to find out information (see also Carers’ experiences of searching for information). Some carers gained valuable assistance with how to cope with some difficult aspects of being a carer, including instances when the person being cared for exhibited what they perceived as challenging behaviours.
Julie attended a few workshops run locally by a carer’s support organisation. They made her feel ‘more comfortable in what was happening’.
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But I did eventually – I spent [laughs] probably two or three hours at – went through all the links, read all these things and then I discovered [non-governmental carer support organisation]. And discovered that they were just – they were very close by, and went, “Oh, okay, here’s an organisation that’s here to help people care for people with depression”. And it was quite a – it was a fabulous thing for us because I could go there – I went along to two, I think they run three workshops. I went to all three of them. My husband came as well.
Those workshops were [on] things like ‘hope’ and ‘recovery’ and it was such a relief to know that – you know, we weren’t on our own and that there were – other people were experiencing these things and to get a perspective that was, yeah, from other people; other parents and people that work in the [mental] health industry as well.
And I tell everybody [laughs] that I come across, if they have any issues with depression and they’re caring for somebody, is to go and talk to them at [non-governmental organisation] and [non-governmental carer support organisation] and see what’s available there. Because that was – that’s what I needed was someone to talk to.
After you discovered [non-governmental carer support organisation], how long was that from when your daughter began to see the psychiatrist and he referred you to [mental health website], how long were you looking for?
Probably six to nine – about nine months, probably. So that sort of – that did help me feel more comfortable in what was happening. But I could still, but I could see that my daughter wasn’t improving. So after six to nine months of weekly sessions with the psychiatrist she wasn’t improving. And I guess what was happening in terms of improving was – so at school, she was having trouble getting to school, having trouble getting out of bed, getting to school. She couldn’t do any homework.
George described very useful advice he and his wife were given by a mental health unit on how to manage times when their son was threatening to self-harm.
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So that’s a big thing. But yes, this was through mental health, and we attended all of these courses to help us. And in particular one that helped us tremendously was where my son just kept threatening suicide. And of course we knew of kids that had – through this period we got to know people and there was quite a few suicides that we knew of. And he was threatening this and using this as a weapon.
And they told us that to – you can’t use it as a weapon, you must confront him with it when, next time he says it and say to him, “We don’t agree with what you’re considering doing but we we can’t stop you and you can’t use that as a weapon against us”. And fortunately, for me, it wasn’t me that he said it to, it was his mother, who had the strength to say to him, “I don’t agree with what you’ve decided to do but I can’t stop you, but don’t use that as a weapon on us”. And from that day, he never ever used it again. That was early in the – that would have been [when he was aged] about 23. He never used it once more.
What many of the carers we spoke to seemed to value most about support groups, however, was the opportunity to meet with and talk to other carers. This could be just about knowing there were others going through the same experiences. Bev observed, ‘It’s good to know that I’m not the only one’. Meeting others often meant, in Jeannie’s words, ‘sharing experiences’ and finding out how other carers, with ‘exactly the same … situation’ were finding ways to maintain ‘their own sanity and their own lives’. At a support group, carers could, Elena said, ‘talk, get things off their chest and not be judged for it’, and even ‘laugh about what [they were] going through’, Dianne said.
Rosemary talked about the benefits for her of being part of a support group.
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And how did you come to find the support group for carers?
One of the ladies at church, her son has been through much worse – for the son – than my son’s been through. Although you can’t really say that, can you, you’re not in someone else’s skin so you don’t know what they’re feeling. But she was, belonged to the carers’ group, and she said, “You must come along”. She said, “You can’t stay in isolation”. And this was way before diagnosis and way before his episode. And she said, “Just for your own sake, you must come”.
So I started going, and I wasn’t a member, I went as her guest. And then, as I started to go, I decided, yes, this is a very supportive group. And so you have about 15 or 20 people that you feel as though they care, they care what’s happening. And you can talk. And they offer respite, so you do get some good things in your life: they’ll take you to the pictures. And it’s horrible going to the pictures by yourself. I hate it [laughs], I tried it and it’s horrid. So going to the pictures with a group of carers. And then you learn what the latest legislation is, what’s coming up and, you know.
The carers’ group is a sort of anchor and a place where you can talk with people that care, people that are going through or have been through worse or better. And if it’s worse, you can say, well, you know, you can always find someone worse off than you are. And in a strange way, that’s a comfort. [Things are] not as bad as you thought [laughs]. And each week we ask each other to go around the table and say what’s been happening in the last month in each of our lives.
Many carers talked about how just having someone to speak to who knew what they were going through, and who was prepared to listen could be invaluable. Until he found a support group, Rich had felt ‘very isolated and on [his] own’. Marta thought people at support groups were the ‘only people that [understood] what [she was] going through’, and that most carers ‘[coped] better … once they join[ed] a support group’. Alexia said meeting other carers through a support group was what had ‘kept [her] going until now’.
Kate talked about how useful it was to hear about the experiences of other carers, and compare them to her own.
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He only, I really only know that he’s actually even thinking about working when he’ll let slip that he sent off some job applications. But, yeah, he hasn’t sort of got any help with doing that and he hasn’t really thought it through [sound of pet dog snoring loudly at times in the background]. He’ll just get really angry, because, you know, they haven’t responded to his application or something, and that, yeah, he’s not really getting any help. It’s very self-reliant so – and if I say to him, “Maybe you could get some help with that?”, he’s like, “Back off, I don’t want to talk about it”. So, yeah, not a lot of openness going on there around extra help.
And it’s hard to know how much of that’s the illness and how much of that’s just him. It’s like we don’t have anyone else to compare it to, so that’s been another part of the journey too, is like is this an inherent schizophrenia thing, or is this just him? So I think having a, being a part of a support group helps with that, because then you start to – I can remember hearing someone talk about how their son, who had schizophrenia, was able to talk about the symptoms and the early signs of when they weren’t travelling very well.
And I was like, ‘Oh okay, so that is possible’. They can do that, it’s just that my brother decides that he doesn’t want to talk about it, but I thought that everyone – that that was part of the illness.
Not everyone chose to attend support groups, which Lisa described as ‘not really [her] cup of tea’. Although Katherine found going to a support group and getting information was helpful, she said she went more to hear the ‘guest speakers’ rather than to take part in meetings where people talked about ‘the person that they care for’, which she ‘didn’t really like’. Kay, who regularly attended a carer support group, said she knew that support groups were not for everyone: ‘some people don’t like talking about it. It upsets them … and to listen to other people just depresses them’. Looking back, Tracey said she had probably been too ‘shy’ to attend a support group when she first became a carer: ‘it takes a lot of energy just to ask someone for help’. She thought ‘it’d be helpful for someone just to say, “I’m coming around”‘.
When
Elena first went to a support group meeting she didn’t want to go back. It was some time before she returned and realised she had been ‘retaliating against what the future looked like’.
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And we’d actually found a support group in an area outside our local area. There was nothing in our area, and we went to a meeting. I ended up in tears and never, ever wanted to go back to a support group meeting again. The reason being, these people had been dealing with a person they cared about with schizophrenia, and it was a group for carers of people with schizophrenia, and they could’ve been dealing with [a person they cared about with schizophrenia for about] five, 10, 15 years.
And they were coping and things were going on fine and they were talking about supports that they [had] looked at, or what they needed, and they seemed happy and getting on with life. I could not see how we could cope with what we’d been dealing with for the last three years [for] 10 or 15 years. That wasn’t going to be the life that we were going to have. So yeah, I left that meeting feeling really, really – no, running [laughs]- and never, ever wanted to go back.
Because that wasn’t going to be the way it was going to be like for us. I since [then], I did go back to that meeting and I gained a lot of support from those people who were at that meeting. It was just my retaliation against what the future looked [like], as though this wasn’t going to be something that would be cured in a short time, and that’s what we’d been hoping for.
Tracey said, in hindsight, she could have benefited from attending a support group: ‘I probably needed more of a – just a group that understood or were going through similar feelings or anything like that than, than a single psychologist myself’. A few other carers, like Rowan, could not get access to support groups they thought would be useful, because they were too far away or the times they met were not suitable.
Support workers and carer consultants
As well as support groups, carers also mentioned individuals (support workers, carer consultants, outreach workers) who had given them support. Sasha had a carer support worker who she had trusted ‘immensely’ and who had been ‘supportive … but very honest’.
Christene, who cared for her daughter, husband and grandson, was introduced through her support worker to a mental health outreach worker who she described as a ‘wonderful’ lady who always found ‘time to talk’.
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And [husband] is expected to face all this with no help. He’s had a government-paid holiday for five weeks, as I see it. No one’s talked to me. I’m just lucky I was introduced to a lady three years ago who works in the mental health system, who – when I’m at the point – I can ring her up and say, “Hey, it’s a put my head in the gas oven day today”. And I don’t know what’s going on in her life, how chaotic her day is, she finds time to talk to me then and there. We need more people like that.
And how did you come to meet the wonderful lady who put me in touch with you? Was it by chance? Or were you given her contact?
No. The [support worker] realised that I’m here, that Chris has got absolutely no-one, and she could see the road I was going to travel far better than I could at that point. And she said, “You need someone. I know someone. She’s lovely. You’ll love her. You two will get on really well. Is it all right if I give her your name and phone number and tell her a little about you?” And I said, “Mm, yes”.
I was a little wary, I think. I’d just had a little bit enough of the official people and I was a little bit wary. And then this lady rang me, and she came out and I met her, and thought, ‘Yes, I do need support’. And she’s been wonderful, yeah. And she works with [mental health non-governmental organisation]. She was an outreach worker. That’s her job, talking on the phone and visiting people, performing miracles, the impossible.
And the fact that she had mental health problems in her family, with one of her children [meant] she had an empathy and a real understanding. Yeah, it made her very real. Yep, she’d walked the road and knew all the bumps and everything. But that’s just been amazing support.
Alexia explained how, when she was very anxious, she had been helped by a ‘carer consultant’ and ‘support worker’ who had encouraged her to attend a support group.
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In December [five years ago], the previous treating psychiatrist realised that my anxiety level is high. He asked me if I’m seeing someone and I said, “No”. He referred me at the time to the carer consultant. When I went there I thought, ‘She’s going to support me and help me because she’s a carer consultant’. I explained the situation. I said, “[Son’s psychiatrist] is no help and my son needs to be treated properly and hasn’t been treated”.
It’s not the treatment for me, the injection. I can’t see it as a treatment. I’m not a professional but [the injection] didn’t work. She referred me to a support worker in another organisation. And this support worker supported me all the way. She used to go with me to family meetings. She used to encourage me.
She always encouraged me to be involved in our support group where I’ve met carers [who are] having the same issues, sharing our experience, learning from each other. And through that support worker I [became] involved in various workshops. I learned about mental health and what it means. How it works. How to look after myself.
Getting more involved with support groups
A few carers told us how they had got more involved with the support groups and become support group leaders, carer consultants (advocates) or volunteers. Alexia volunteered once a week helping people from diverse ethno-cultural and linguistic background communities. She worked with refugee-background people and asylum seekers who were often, in Alexia’s view, ‘scared to approach the system because of the stigma’ within their community, and who she said as a result preferred to seek support from a community centre, GP or counsellor.
Alex explained how he became Board Chairman for a mental health charity.
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You need to verbalise and find help because there is a huge amount of understanding and support in the community. And they give you leads on how you can find other support. And that’s really how I got into getting support originally from the [mental health non-governmental organisation], who later became [mental health non-governmental organisation].
And I’ve had a lot of involvement with them. You know the first two or three years of it I just used to read all the stuff that I got because I was a subscriber and then after that I think I retired. And they put out a call for some help and I thought, ‘Oh well, it sounds interesting’. So I went in there and on I suppose two or three occasions I did virtually nothing except tidy things up, which was very limited.
But by chance I had lunch a couple of times with [Chief Executive Officer of mental health non-governmental organisation], who was the Chief Executive and remains that today. And she’s a very intelligent woman who sort of knows how to find what she wants in the way of help. And you know in, I don’t know, probably six months or so I found I was on a committee [laughs].
She’s a very resourceful woman [laughs].
[Laughs] And it seemed an interesting committee, it was called [committee]. And I eventually had to, after another year or two, or whatever it was, I was put onto the board as well.
Temporary Alternative Care (respite care)
Only a few carers talked about trying to get some alternative care for the person being cared for when they needed to be away from home. Dianne said that a not-for-profit carer support organisation had helped her with respite care, including making it possible for her to have weekends away.
Rowan couldn’t get anyone to stay with his wife full time when he went into hospital for an operation. He worried for his wife’s safety while he was away.
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What’s your experiences with respite care?
Zero. Haven’t bothered it, except when I rang up to ask if I could have someone for – I had to go into hospital and have a hernia operation, which meant that I needed to stay overnight and I was hoping to get some help with that. I made a few phone calls from that and then, in the end, I never got return phone calls and I just gave up.
I get very annoyed at not getting responses back again and I think, ‘Well, if you can’t bother responding, I can’t rely on you to do what you’re doing’. And in the end, I just got the next door neighbour to pop over and make sure that [wife] was fine.
I ended up getting home. And I got inside the house and she’s still sound asleep and I woke her up and I said, “I’m home”, and she goes, “Mm-hm”, and rolls back over. I made a cup of coffee and had a cigarette and she got up about two hours later, she’d forgotten that I was in hospital. Simple as that, totally forgot that I’d been into hospital and had the operation and so, you can imagine what would have happened if she had of decided to cook something or something like that, you know and then gone to sleep.
So the fear of something going wrong just stops you from doing so many things, but yeah, that was an example that, yeah, you can laugh now, because nothing went wrong, but she could so easily have done something like that. And so respite care, quite often, isn’t about needing a week off or a weekend off, or [time] away or anything like that.
It’s about just those simple little things that I need help [with], because not everyone’s got family that are close by. Not everybody’s got neighbours that will pop over for a few minutes or anything like that, but you need to go for a few hours to do A, B or C.
