Carers’ experiences of searching for information

When my son was diagnosed, we [went] just here, there and everywhere. Because I didn’t know anything about mental illness, that’s why I trusted the professionals. So I think we need to have a base, just one base. There’s too many organisations out there. There’s a lot of things we don’t know about. There’s a lot of things that aren’t advertised. They’re not known. You have to hunt them out for yourselves.

It’s – you know, even now the people I’m involved [with] in the groups, it’s just amazing what people don’t know that’s out there, that they’re not advised of. And that’s what we need. We need to know what’s available to us, what help’s there, from day one. And I think we need to be explained what schizophrenia is or what a mental illness is, “This is what it is”.

Don’t go home and try to find out for yourself, “This is what schizophrenia is. This is what could happen, will happen. This is the drugs that we need to use. We won’t find the right dosage day one. We will have to experiment, and that’s what it is”. We need to know all that from day one to help our loved ones the best way that we can instead of trying to find it all out yourself.

And I think 12 years ago the awareness and help around mental illness was different to the way it is today. I don’t know if it’s our level of knowledge and comfort with where we’re at in the process compared to 12 years ago, but it certainly seems to be different now. I think that we probably got a bit of information and a few websites to look at, but it was just really overwhelming [sound of pet dog snoring in the background].

And you know, I think with all the mental illnesses too, everyone’s a little bit different. And so we were trying to work out, ‘Well, does he have these symptoms that are listed here as the typical symptoms of someone with schizophrenia, or which ones does he have?’ Because he didn’t necessarily have all of them.

And so, yeah, that was sort of our learning, trying to get our head around what schizophrenia was, but then also what his experience of it was, and he wasn’t very keen to really talk about it. He was just like, “I just want to keep it all inside. I don’t want to share what’s happening for me”. So it was really hard to sort of know what to do with that.

Because I’m always interested – I picked up everything you could to read. I’m an avid reader of all the information. So I got a lot of information from the pamphlets and the booklet. You can’t just rely [on] the doctors and people because they can only give you so much. And I must admit, when you’re in a stressful situation, they probably told me more things than I remember. But when you’re very stressed, you just don’t – it doesn’t sink in. And it’s all very well, I’ve thought, you know, ‘You take a notepad and write questions and things’, and it’s like, ‘Oh yes, okay, I forgot to take the notepad’ [laughs], so it doesn’t work.

So I did read a lot of pamphlets and things. And there were a couple of good books as well, there’s a couple of really good books that I [read] about bipolar. Once I’d heard, once I sort of got the name of ‘bipolar’, there was a lot more for me to be able to look up and start thinking about. And one of them showed that there were lots of different types of bipolar, so I was sort of able to try and work out where he fitted.

We went to the nearest, what’s the word I’m looking for, sort of child psychiatric help, where we wasted 10 months. We would go weekly, fortnightly, monthly. He got no better. Eventually, we got into another [family support organisation] and a lady, a worker, came and saw me. She met the children and gave me a book called [professional resource for teachers working with traumatised children]. That made sense.

And the really sad bit was, we’d wasted a whole year when the psychiatrists and the psychologists that saw him weekly and fortnightly, never sat me down and said, “This is what happens to children: when this happens when they’re babies, to the developing brain, how it works”. A whole wasted year, because nobody talked to me and told me the simple things of how a baby and child’s brain works. Once I understood that, then everything made sense.

And I had started to do a lot of research and ask a lot of questions about the medications, interactions, what to expect. I wanted to know what to expect if something was to go wrong and all the rest. Because you’re given [medication] in the Webster-Paks [acompartmentalised medicine packs], you don’t get the leaflets to read or anything like that and they say, “Oh well, look, just watch out for that, in case you see that”.

And that’s like, “[Can I have] a more detailed explanation, please?” Because especially on some of the higher end medications things can go wrong and they can go wrong really quickly. I want to know what to look for, what to expect. When do I make the phone call? Do I wait until she’s dropped dead or you know, fallen on the ground or when. So I had to research all that myself.

Now as I was going along, I started to ask more about the tests that were being done, the therapeutic level, so I could actually look at the test results now, myself, before the doctor even said anything. I can tell whether it’s good, bad, in the therapeutic range, something that needs attending to or anything. And I learned the implications and what we needed to do about all of these different things.

[Five years ago], I found out that there is a support crew I was referred to, and I was allocated a support worker. She did support me. She encouraged me to be involved in various workshops and group learning about mental health and addiction. It wasn’t easy to get out there and try to have a voice. I come from a culturally and linguistically diverse background [CALD] where I copped it since my son had his first episode of psychosis.

I was judged and discriminated [against] and I copped the blame [with people saying] that I throw my son in the hospital, [and that I should] not [have] admitted my son to the hospital. And [people] said how could I do that, [and that there was] nothing wrong with my son. It was so hard for me, dealing with the judgement and discrimination and at the same time my son, who is part of me, [was] breaking down before my eyes.

I was feeling hopeless but I needed support and I needed to have a voice. It wasn’t easy to overcome the cultural discrimination [and] to overcome the cultural impact on my life. I now don’t have anyone from my own culture that I mix with. I felt that I can’t, I don’t fit there anymore. I started to interact with a support group, relate to the carers, to the carer’s story and that’s what kept me going until now.

From day one, I knew that I couldn’t be who I was, I had to change. I had to learn, I did a lot of courses with the [mental health organisation], I did voluntary work with them. I did all their courses, [peer education courses], yeah. And my main big experience was volunteering on the helpline. I did that for three years and I learnt a lot through that, through other people’s illnesses and challenges. And I helped them in their own [situations], that’s where my education was. And also on the internet. I used talking to other people, other carers, learning strategies from them, from the psychiatrist.

Most of it, my initial help, came from the services provided when [son] was admitted into hospital for nine months. They were excellent in guiding me and educating me and putting me [on] to the right departments. I got onto the services and I needed to – I knew that knowledge was power and knowledge of this illness. I needed to be able to comfort myself and to make myself feel secure, that it’s going to be a long, long journey but it’s worth the while. I was able – because I’m pretty good with the computer – [to] jump on, and my daughter also got on board. And a lot of other people, if they knew something, they would tell me, I would learn from other people as well. Just a whole lot – and also other services, they also were educating me.

Case management also came here with [son] and I always used to sit in on their interviews. I always made sure I was participating with [son] as if I was also ill as well. So if [son] was at an activity, I would, in the beginning, because he was so ill, I would participate in the activity with him, even though it was just for people with mental illnesses. I would, as a carer, go to these meetings, because this is the only way I would observe his ability to function and what type of medications he needed, how much and when, so on a particular activity.

And so then there were some weekly sessions with a psychiatrist that she started with. And I think those sessions were helpful for my daughter initially. Somebody that she could talk to about how she was feeling. My husband and I were probably still reeling from the shock and trying to understand, why? What was it? What was causing this depression? What was causing this anxiety? And nervous – is it bullying? Is it – what sort of issues? Were we doing something wrong? Because as a parent, you’re always concerned, you know, what have I done wrong? What – why is she not happy? And what’s gone wrong?

And she said, “Well it’s nothing”, she kept saying, “It’s nothing in particular, it’s everything”. Was what – how she responded. And it was very difficult for us to try and understand. We were trying to guess what the problem was. What made it hard as well was that [there was] the privacy issue* with the psychiatrist. So we did have a couple of sessions with the psychiatrist as a – [my] husband and I and my daughter. Where the psychiatrist was trying to get some of our family background and a bit more information so he could try and help her. So we participated in that.

But we got very little feedback from the psychiatrist at all. And he couldn’t really, I know, there’s privacy issues in that he couldn’t tell us what she was saying to him, but we found it very difficult during that that period of time that we didn’t know what was going on. We didn’t know whether it was something that we were doing wrong, whether it was – what we could do to help her. And the psychiatrist, yeah, was quite unhelpful.

Note: This website does not endorse this interpretation of the law pertaining to disclosure of health information, which was this carer’s understanding at the time of the interview. 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, and section 346(h) which enables disclosure of information to carers where this is reasonably required for determining the nature and scope of the care to be provided.

Okay so I tried – I don’t want to mention them [by name] but I’ve tried to contact different programs and it seems like it’s sort of surfacey [sic] or something where they have the website and they say that they have these services available. But then when you try to contact them for advice about something they’ll direct you to somebody else or somewhere else. And then you just get ping ponged around just like that for ages and you don’t often get to have direct contact with someone, like a conversation like we’re having.

Once I rang a hotline and I got someone on the phone who, yeah, I think I rang to get advice about the situation that I was in, and they were more concerned about my health and my stress level, which I found really frustrating. Because I was actually calling to get advice and help for the situation that I was in, and I didn’t want to be coddled in that way. Yeah, so there has been different attempts over the years.

I said to him, “Is there something I can read? Is there something that would help us?” And he said, “Oh, look at the [mental health] website”, was what he said. And I had other people that I knew, a friend who’s a doctor and I asked her, she’s a GP, and she said, “Ah, I’m not sure, have a look at the [mental health] website” [laughs]. And I had looked at the [mental health] website initially and there’s a lot of stuff there.

But because I was feeling so shocked and upset about the whole situation, I don’t think I was actually taking things in very well at all myself. So after probably six, nine months, I did actually sit down and I had a look at the [mental health] website. And I went through all the various links that I could find. Because there were things there I could see that weren’t relevant to – a lot of things that weren’t relevant to me. I was trying to find something that was really – was what I needed. And I probably spent two hours.

Can I ask what it is that you thought you needed? Just to specify?

Yeah, what did I need? I needed somebody, I needed a personal contact, I think, is what I needed. I needed somebody to talk to. And maybe [mental health website] did, probably did have some people I could talk to. But it didn’t jump out at me that that’s what I could do, necessarily. Because a lot of it, probably more of it’s, of [mental health website], perhaps focused on the person that’s suffering from depression. Not so much on the carer. That’s what I was looking for, what – how could you help a carer?

But I did eventually, I spent [laughs] I spent 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 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 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 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 experiencing these things and to get a perspective that was from other people, other parents and other 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 carer support organisations], and see what’s available there. Because that’s what I needed, was someone to talk to.