Advice for other carers

Well just being an ordinary housewife, you know, if you go to the doctor you just say, “Oh yes, doctor, oh that’s fine, doctor”. You wouldn’t speak up against what he said or anything, but we’ve learnt with mental illness it was a different thing and we weren’t recognised as a carer. So I needed to learn more about it and find out and I finally had enough, enough confidence to say, “Excuse me doctor, but I would prefer da, da, da”, or, “Couldn’t we do something in case of …”, “Can that be changed?” And finally [a doctor might say], “Yeah”, occasionally, “Yeah well, maybe, what do you think, [daughter’s name]?” Da, da, da and it could work and you feel much better because you did have an input over the services too. At times you say, “No, that is not correct, that is not good enough. Maybe that’s what she told you, but that’s not”.

And this is finally we’re getting enough confidence to speak up, but that was again a big learning. The [mental health support organisation], they were the first ones that used to have seminars. There were some, where was it, God, I used to drive way over the other side, I wouldn’t go there today. But they were the first ones, the only ones that were there in our day. They are the ones and oh, we had lots of talks there and different things, you know, and they were for the carer, to teach us to inform us also.

That’s interesting because I’ve never had that connection, that link pointed out to me before, that the information for the carer, learning, education for the carer helps the carer to speak out about …

Oh absolutely. You gain confidence, absolutely. You know, I often have said ,”Oh, I wouldn’t …” You have every right to speak up, if that is your opinion do it, see what happens. What can happen? Are they going to punch you in the face? Honestly, you know, but that is definitely to get that confidence to – I’m not saying argue about it, but have a discussion about it maybe. But you can only do it if you’re well informed, I would say. Tell me about it so that I know about what I’m talking about, so I’ll get it over right, is very important.

You can’t just develop rapport, it’s simple. I think it’s like anything else, a GP would probably know his patient and the carer a lot longer than the psychiatrist, one would think. You know, hopefully it’s a family GP so you’re going to have a lot of rapport going on there anyway, hopefully. And with the psychiatrist, that’s – rapport’s not something that you can just build on either. They either trust you or they don’t. You need to give them a bit of time to get to know you and I think that, if you make the diary and if you have the information, then the more you’re able to provide the more – I’d use the word trust – they can trust your judgment and will listen more, as you prove yourself.

So to, I guess, to develop a rapport at the start is to be able to assist in what’s happening along the way, help them to do their job properly and that’s the important thing, that’s what I found. Also I made sure that medications, any medications that needed repeats, anything like that, it was all written down. I had it all, everything written down and I could take it with me to the appointments, be prepared for an appointment, have any questions ready and stuff like that.

But, more importantly, for the psychiatrist, make a note of any, ask them if you need to, “Hey, what sort of things should I make note of for next month, that you’d like to know about?” Because there could be some specifics that they’d like to know about that, you know, “Can you let me know how many times that she falls in a month? You know, we might have to look at something on that one”.

If there’s a change in medication, definitely write down anything that you notice, day-to-day, that they’re sleeping more, sleeping less. Because by the time you see the doctor next, you’ll have forgotten the little things and it’s important to [write] those down. So, getting back to your question, how are you going to get that rapport going? That’s – you can’t just create rapport, it has to be built along the way, I think and so I guess that’s it.

I think supported decision making – I think the advance statements are a really great start to that, because they allow the consumer to put down on paper their preferences and what they’ve learnt from their own experiences. I think it is absolute, or it should be absolutely mandatory for carers or whoever the primary support person is to be involved in the decision making, if the consumer consents to that. Yeah, for all the reasons I mentioned earlier. Just that they have that familiarity with the person and hopefully with the person’s condition. I think it just needs to be a bit more collaborative.

If clinicians don’t feel that the consumer or the carer have the right end of the stick, then I think that there should be a place to educate them and give them the resources they need to help inform their decision making. I think that’s a big thing that’s lacking currently. So where they might discard someone’s preference, because they don’t see it as, you know, being conducive with the therapeutic aims, then I think, rather than just doing that and doing what clinicians feel like anyway, there should be a place for providing educative materials.

Yes, I felt when he was first diagnosed, I felt as though carer was going to be my life’s work. And I look, and at the time I thought, that’s fine, I’m a single parent, no partner, I didn’t have to worry about anyone else. I was working, but that was all right, that’s good, that’s money to help with the whole thing. And I could be, I could give all my attention, or most of my attention, to my son.

Even though I had another son, but he’s a much more independent person, he’s now married and he’s got children and stuff. So he’s actually I sort of feel that he’s all sorted out, and I can still give a lot of attention, without upsetting anyone else, I can give a lot of attention to my mentally ill son, and I don’t feel that I’m making anyone jealous or that there’s no, I haven’t any, no other claims.

So I feel very privileged that I’m able to do that and I don’t know whether that’s actually caused me not to have another partner ever, but I don’t know whether that was part of it. It’s really interesting when you start thinking about these things yourself, but I think, oh, I think I was quietly pleased that I had something else I could put my attentions and my efforts into. So I feel like [son]’s, I feel like he’s part of an ongoing project for me, almost.

But we get on so well, it’s been wonderful. It’s sort of has, it’s all benefited me as well, because we have such a great relationship, we really do, and we tell each other all sorts of things, so I can be very open with him and he’s open with me. And it, that trust means that we have a much better chance of his medications working and him telling me if they’re not, and and me able to be, then connect with the psychiatrist and be able to keep making sure that his journey is sort of fairly smooth.

I think, as a carer, you’ve got to have that trust between you, the two of you. That if you can, it was very hard in the early days, and they said, “Don’t lie to them, or to him”. And when, sometimes when they’re agitated, you know, “You must believe me, you’ve got to believe me, you believe me, don’t you?”, he’ll be saying. And you can’t say, “Yes”. You just say, “Well, look, I don’t think that’s quite right”, and “I think you might be a little bit exaggerating”, or you might, “You’re not quite well at the moment, and maybe we need to just talk about other things”, sort of side-track him a bit.

But if you start agreeing with his psychosis, then you’re really in trouble, because that just reinforces their, that position and it’s very hard to move them on then, because, “You believe, last time you said you believed me and now you don’t, what’s going on?” So you’ve got to be as honest as you can, but even though you do worry about upsetting them and making them angry.

There’s this sort of, that’s where you’ve got to know your child, if it’s a child, or the one you’re caring for, you do need to know how far they’ll go and are they likely to be so upset they get violent? Usually it’s only violent with themselves, but you still don’t want them to run off and do damage to themselves or anything else, either. So it’s a real, you’ve got to be able to work out a real way of calming them down, and I think if you can do that, then that’s probably one of the greatest skills you can develop.

Is some way of side-tracking them, getting them on to something else, getting them … talk about something different, and try to have something in common that you work on together that you’re, like I said, projects you can do, or get them, whatever they’re involved in, you’ve got to be trying to be involved in as well, in some way, so that you can talk about it. In my case it was my son’s university courses and stuff and we could talk about what was going on with that, so he could immediately talk about something there. But yeah, it’s definitely patience and trust are very important.

I think in terms of stuff I wish I’d known earlier is probably stuff around what your rights are as a carer. I wish when I was younger – not 10, but when I was [25], a few years ago, I wish that I was perhaps better at writing down information and recording everything that happens. Because I think that should you wish to make a complaint – and now since 1 July we’ve got the wonderful establishment of the Mental Health Complaints Commission – I think writing everything down in an organised and kind of non-emotional way can be really helpful.

And it’s not making a complaint for the sake of making a complaint, or because the whole situation is really distressing for you. I think it’s just, so it’s a really key way that the whole system can be improved, if carers kind of use, and consumers for that matter, use their experiences to flag what’s wrong and what can be done better. I think, I mean, when I was 10, I used to say that my brother broke his leg. [Laughs] So it did take me a while to kind of be comfortable talking about mental illness.

But I think that’s really important, just to (a) reduce stigma across the board, but also (b) just to get the right support that you need. And one thing I’ve found is that everyone seems to know someone and statistics definitely support that. So I think being open and honest about it is really important for those two aims.

What information on day one should the novice carer have given to them and by whom, looking back on your own experience?

I guess the GPs, there needs to be a package or a support system there I think, that first port of call. So yeah, first visit to doctor, “This is what he’s been diagnosed”, okay, “These are the people that can help you. If your loved one refuses to get treatment these are the people who will guide you through that and help you get him to treatment”. So there needs to be more case managers, the carer needs to know exactly what their role is. And the case manager needs to support the carer in getting the best possible care and the carer needs to be listened to because they know that person the best.

So imagine you were describing what a case worker is to a new carer, how would you describe that?

Well first of all a case worker is a barrier [laughs] between you and the psychiatrist. So he communicates with the psychiatrist regarding medications which I think cuts down on the visits needed to the psychiatrist. If I am worried or have a problem with my son I ring him and I say, “This and this is happening, what do you suggest?” He comes and regularly visits and talks to him to ascertain his health. He’s made suggestions about what programs he can join to help him rehabilitate back to good health, of course it’s up to the patient whether he takes them up.

I can discuss my fears with him and he can explain what’s going on. If there’s an emergency and things are really bad he can usually arrange to come within 24 hours. But they’re – they just need to be there for you whenever you’re got a problem. It’s a great idea but there’s only five of them now [in Bronwyn’s regional town]. Two years ago there were about 25, I think. Yeah, there need to be more.

Yeah, information about depression. And I think my daughter actually, I mean, she knew she was depressed. She knew because at school they’d actually in their subject, ‘Health’, they’d actually covered things like depression. So that’s a really positive thing that at school, kids are learning about mental illness. So in a way, she kind of self-diagnosed herself, going ‘Oh, this is how I feel about these things’. She just wasn’t able to, well, she tried to tell me and I didn’t understand and then I guess she gave up trying to tell people and just internalised it herself.

So educating parents, I suppose, is an important thing at high school sort of age group, educating parents about what to look out for. Because I don’t know that I – I didn’t know what to look out for. I do now, I can see, if people tell me something about what their child is doing, I’m thinking, ‘Oh actually you should, might be, need to be careful here because that might be something that, it might be a symptom of [them] feeling depressed’.

What should they look out for?

So it’s things like, well, I guess it’s things like not wanting to go to school and if they’re not doing their homework – it’s not, they’re not doing their homework because they’re being disobedient, there’s something that’s not right in how they’re feeling. And that’s stopping them from progressing and participating et cetera. And if they’re withdrawing from things. And if somebody totally withdraws from life, well that’s probably what I would have initially thought. Oh, well, that’s depression if they’re – never come out of their bedroom.

But people can be depressed, yeah, maybe that was the idea that I just had before. That people can be suffering from depression and anxiety and still functioning in a way that looks sort of normal. But that’s not how they’re feeling. Does that make sense? And I think and I believe it’s something that teenagers particularly are very good at, of being able to put on a face and keep going because everybody expects them to keep going but they’re feeling really bad.

And you hear about those stories of kids who suicide and their families and people around them had no idea that they were suffering from depression. So I think, so getting to more education of parents, to what to look out for.

I used to talk to families about, you know, encouraging people to do things. Like, in a family home, you’ll have mum – maybe European mum – cooking, washing, cleaning, does it all, you know and particularly sons – daughters might be expected to help – sons, no. They don’t do a thing. Do you know what I mean? And that’s the way life is so they’re not encouraging independence. And that’s an expectation that they will do that.

Other households, it’s different and there’s an expectation that, you know, mid-twenties people are gone from the home – doesn’t happen as much now because the kids [laughs] stay at home no matter what their background is – they stay at home to save money or have a better lifestyle [laughs]. So, it’s a matter of well, okay, are they doing any of those things like self-support for themselves like cleaning, cooking, budgeting. Are they doing any of that? If they haven’t been and haven’t been for a long time, how do you change that?

So it’s looking at a program to change that. And it’s very hard for a family to do that, particularly with someone who might be manipulative because that’s the way they’ve coped to get what they want. Because I used to give talks on managing difficult behaviours, which has happened because someone’s had a mental illness and they’ve got away with things which they wouldn’t have if they hadn’t had a mental illness. Then it’s factored into the way the person with a mental illness copes to get what they want. So I’d say to families, “If it’s bad behaviour, they won’t get away with it in the community so you’re not doing them a justice if you’re not here. They’re going to have to find other ways to manage”.

So learning to cook, clean, now that’s where the Disability Support Services came in, to support people to do those. Then they were sort of supporting people to leave home, to be independent because they weren’t doing it when they’re at home with mum – because mum was doing it. That’s the way it was all working. With my son, he’s a very good cook, because he wanted to learn to cook because he didn’t trust the cooking of anyone else.

So, sort of teaching people to become independent and why they’re co-dependent at home. Yeah, look it is a hard one. And I know from experience at home, if someone’s been entrenched in a way of doing things, it’s very hard to change it. And if they’re unwell as well it makes it harder. So I used to say to people, change things little bit by little bit. Make a pact, or not a pact, work out a routine with someone to change something.

And if you’re going to have repercussions for behaviour, make sure you’ve agreed upon them and it’s something that you’re willing to instigate so that you’re not going back on your word. So it’s making small changes, you know, and in an agreeable way. But it’s not easy.

I just think despite the person with the illness acknowledging it or not – which may well be the case – either way, recognising a male as a carer in the situation is the first thing. A commitment to being what’s seen as a carer rather than walking away from it which as I’ve said is always an option and realising that part of that might well be that part of your day, part of your life might have to be focused completely on the person with the illness, presumably your partner which is what we’re talking about.

And equally as important is for you as an individual as part of basically caring for you or caring for the carer you need your own, clearly your own passions is probably quite a good word although not a word I use a lot. But your own passions and interests in whatever field it is perhaps to do your own thing or even some of those can be done together like theatre or even sport, which isn’t applicable in our case but if both partners enjoy sport then that sort of thing together.

But as well as that as the carer to seek, particularly if you feel overwhelmed and overburdened is to seek support of some of these really strong networks of carers, supporters of carers such as [carer mental health organisation] who as I’ve said have been a life saver for me and I’m sure others would find the same in my situation. Again particularly given that I’m an introvert and necessarily don’t feel comfortable sharing these sorts of things. It gets to a point where it is damaging to myself and any other male carer who’s a similar type of person just to keep the whole thing inward and very beneficial to be able to share on whatever level is important to that individual.

So in a sense you are encouraging men to talk about – to share their experiences.

Most certainly. I’d always do that, always, always have seen the importance of it. The struggle that I’ve had is that I’ve not been that sort of person and health, healing is really important. Obviously to heal you need to recognise there’s possibly an issue.

So, I used to love going dancing and stuff like that. But, you know, the kids come home and it’s really fun that they come home with a song and well, ‘What’s that song?’, and so I’ll look it up on Google and stuff like that. Oh that’s really funny. So, [daughter] and I have this and [son] – we have this song. It’s called, you know that ‘Red Foo’? I didn’t know who he was right? And he’s got this band LMFO or whatever it is. And they did this song, everyone’s shuffling right? It’s such a funny song. I just pissed myself laughing. That’s how I find – that’s probably – the kids and I share that joke. You know? It’s, everyone’s shuffling and [daughter] will come up to me and do the shuffling song, you know. And it’s enjoyable. You know?

That’s – you find little things, you know, not very often but it’s something that I’ve got to get better at doing with my kids and with [wife] as well. You know, I’ve got my – my desk has been moved out of [wife]’s studio and it’s in the living room now. I bought this big chair, you know, swing around chair and all that. And [daughter] gets the cat and she does Dr Evil on it. You know, this is, “So you have returned”. And stuff like that. You know? And it’s little things like that. And you know, in the way, you can be the most terrible parent or you don’t think you’re doing the right thing by them but they love you implicitly and they enjoy any time you can spend with them.

And in a way I need to do that with [wife] – find the enjoyment and the passion – and not just in the cooking and stuff like that, but other things. You know? We enjoyed that movie. I really hate movies now. I sat there and I’m going – we went to the [cinema] in [metropolitan suburb] which is really nice. It used to be really nice, but yeah I struggled to sit there for, I think it was two hours or something like that – but I didn’t say that to [wife]. I said I enjoyed it. And we had a bit of a discussion about it. So that was good.