Supporting treatment decisions

Yeah, I felt back then, this is, again, six years ago, that the staff at the psych unit, I may as well not have even been there, for any good that I was doing at all for my wife and her health. The only thing that was good was she was holding onto my hand and she wasn’t letting go [laughs], it was like having one of the babies, it was like, ‘You’re not going anywhere at the moment, you’re staying right by my side’. She was scared, really scared.

Because she’d been through a traumatic experience, then the traumatic experience of an overdose and being in ICU, you know, coming to and seeing yourself and now being admitted to a psych hospital. So, with a bit of skilful questioning, the voices came about and that surprised me. I stayed with her until she slept. She was so tired, all she needed to know was that I’d be back tomorrow and she knew I would. I said, “Yeah, I’ll be back tomorrow. I’m not going to work. I’ll come straight back out here, about 10 o’clock” and then I wrote it down for her, that I’d be back at 10, because otherwise she would forget or she’d have something to hold onto.

I guess I just wanted her knowing. And so I got out there at 10 o’clock and they said, “Well look, you know, you’ll be able to see a doctor shortly and we can go over where we’re at”. That was three hours later that I finally got to speak to a doctor. It was one o’clock in the afternoon. Fortunately at the time we were able to take her out the back. They had an outside area and could make coffees and just have a general chat and stuff and that’s when I was asking the questions and got some more answers about the voices side of it and then I was able to prompt her.

When the psychiatrist was asking the questions I could prompt her and say, “Well, you know, outside you were telling me this and that”. “Oh, yeah”. And that’s when the psychiatrist said, you know, “We’re looking at schizophrenia here”, and she confirmed her own diagnosis by asking more questions and stuff.

Well, to me, it’s now 20 years ago. To me it seems a never ending sequence of talking to different psychiatrists and psychologists and to the point where he ended up in [mental health unit] for a year to examine him. And I’ve always believed that’s the worst thing that ever happened to him. Because he went in hypersensitive and hyperactive and hard to handle, came out like a zombie. He was so overmedicated, and it seemed to me that for the last 20 years, he’s been controlled by medication, rather than that person we knew years ago.

So it sounds like in those interactions, that you had some … were you in communication with the psychiatrist when they were saying, we’re thinking of giving him this medication?

No.

No, okay.

No, there was never, “We think we should give him …”, it was never asked, “Could we do this?” It was, “Well, we will take him in and study him and do the best for him”.

And how do you feel about that process, in terms of the decision making being, well, out of your hands, essentially?

Well, I certainly don’t agree with it. And it was devastating to see him subdued to a zombie where he could only shuffle in his walk, it was devastating to us and it’s so long ago, I can’t sort of remember what reaction we had. You know, I can’t believe I just accepted it and walked away. But we did have meetings with the professor concerned and he said, “We need to do this,” and explained that was what we’re doing, “We’re giving him a lot and then we’re easing it back and we’ll find the right balance”. Well, not being anyone who had any idea of how to help, we accepted that advice.

But the psychiatrist we’ve got now is very good, we’ve got a new one, and what I liked about this psychiatrist was my husband thought he was overmedicated, and he said, “He can go to a place where it’s monitored to go off the medication, take him off the medication, but you can’t do it at home on your own. You’ve got to go to somebody, to rehabilitation to have it monitored”. Well, we did that and it’s been very successful because he’s come off the drug called lithium and it’s been very successful, but I think it’s good if you can find a psychiatrist that does change the medication a bit. They can be on the medication for years and years and just kept on that same medication when they maybe they don’t need so much.

What made your husband think that he was overmedicated? What sort of behaviour was your son…?

Well a friend of ours had a son with an illness like [son] and he said, “I think your son’s overmedicated” because he was pacing a lot, and he said, “I think he’s overmedicated”. So when we went to the psychiatrist we mentioned it and that’s what he said to do.

The other thing is that my son’s not really aware of what he needs or, I know it’s a bit of a male thing so I’ve got to take that into consideration too. But then he might think of one thing he needs to go to the doctor for but I can see that this needs to be discussed and the doctor needs to know this and we need to set up that and, so really a mentally ill patient needs to have an advocate all the time just to make sure the medical people know what’s going on and to make sure they get the best possible care to go forward.

So would you say that part of your role of the carer or part of what the carer does is to act as an advocate on behalf of their loved one?

Absolutely, yeah, absolutely. He tells me and I mean he’s intelligent he just, that’s the other thing he did the week before he went into hospital this year he’d just started a course in [field]. So he was in hospital the first week so he missed that week but he was in hospital the second week and he went for the day. He got out of hospital, he continued that course, he was suffering from anxiety and so forth. He said to me, “I don’t know what I would do without you mum, I really, really, need your support”. How many people have gone through the cracks who don’t have that and what if I had done what that policeman said and just kicked him out? What would have happened to him and how many young people are kicked out? Or how many parents are not able to support them in that way? It worries me.

Okay. Yes, I think I’ve really only had close connection to two psychiatrists. And the first one was just so open and honest with me, and showed a lot of respect to both me and to my son. And very calm, I can’t believe how calm these people could be. You just felt calm in his presence, which was marvellous. He was very good at being able to let me be involved in some of the sessions, so it would be half and half with my son, and my son was very open, and I was lucky, because he was quite willing to do that.

And I know that the psychiatrist wanted some feedback from someone who knew him well, so that he could help, which basically helps the treatment so much more if you can give feedback on whether they’re taking their medications or not. And it just gives an insight into the background of the family. I think the psychiatrist really likes to know where that patient is coming from, and so I was able to do a lot of that feedback. And it made me feel so much more involved, as though I really could help.

And he made you feel part of the treatment plan and made sure that I was on the treatment plan, [son] put me on the treatment plan. So it was part of what my son could, he could trust me because that was something that we’d discussed with the psychiatrist and that’s always a back-up, to talk to me. So it made me feel, not just important, but certainly part of it all. And empowered me enough to feel that I could actually influence my son more through this, rather than just be some sort of passive observer of my son, I could actually be part of the treatment, which was interesting.

When we had to change psychiatrists, because the original psychiatrist actually got promoted into another area, I found it a bit uncomfortable. Because he was not quite as open to, he was a bit surprised when I, because I actually sort of suggested maybe I should come to one, and he was a bit surprised at that. Because we did that just when, in the waiting room he came in to say hello, and I said, “Oh, should I come in as well for a little while, or something?”, and he thought, ‘Oh’. Not, he wasn’t really sure that that was sort of something we could do.

He did, once I had suggested that, he did let me into that session towards the end. And every now and then my son would sort of ask if I could come in. Because he liked me being there occasionally. Especially because he wants me to know how well he’s going, and he likes the idea that the psychiatrist will tell me how well he’s going. And it’s sort of like, “Well, that’s good, because that’s …” and I do like to hear that.

But usually my motivation for going is to tell the psychiatrist that he’s not going well, or something else, or to be positive. But it is sometimes hard to be too, to be positive, but I know that my son really wants me to have the positive feedback, to show that, “Look, he is getting better”. Because he doesn’t like the idea that he’s not well.

But yes, I couldn’t see any improvement after six to nine months of her getting to school, doing what she needed to do, feeling any better. And I spoke to the psychiatrist about that and so we were trying to get him to acknowledge that she wasn’t actually improving. And I very much got rebuffed by the psychiatrist. You know, that I was meddling, that it was my anxiety that was causing a problem, sort of thing. And he was quite rude to me.

So I spoke to one of the counsellors at [non-governmental organisation] about some of this and she said, “Well…” that my daughter should be doing cognitive behaviour[al] therapy which the psychiatrist wasn’t doing. He was doing personal therapy. And I mentioned that to the psychiatrist and he said, “Oh, no, no, no, this is what I’m doing”. And so in the end what I did do was, on my own, was talk to other people that I knew and found out about some local psychologists.

And thought, “Well I’m just going to give this a try. I’m going to go …” didn’t tell the psychiatrist, introduced my daughter to a psychologist who was younger and female versus a male, older male psychiatrist. And she, my daughter probably had weekly sessions for maybe three months with the psychologist. And at that, because I wanted her to be able to see whether she could make a decision about whether to go with one or stay with the other.

And in the end, she was able to say, “Yes, I don’t want to go with the psychiatrist any more, I’m going to keep seeing the psychologist”. And I think that was a good decision for her to make, but she needed to be able to make that. And I was, I guess, able to put those options in front of her. Yeah, but that was a difficult time when the psychiatrist was sort of rebuffing me and not listen, well, we thought not listening.

Did your daughter tell you what she felt her relationship with the psychiatrist was like? When he was rebuffing you, how was she feeling about their interactions, weekly?

I think she didn’t, not sure that she’d said specifically. I think she certainly knew how frustrated I was, and had a little bit of an amusement about, you know, she could see that mum and the psychiatrist were just bumping heads and not able to work together. But when she did actually stop seeing the psychiatrist, she did say something to me like, “It was helpful when I saw the psychiatrist, speaking to him and at the appointment. But he never gave me anything that would help me when I wasn’t, when I was home, when I’d left the appointment”. Which is, I guess, an indication that the cognitive behaviour therapy was what she needed to give her skills and strategies to help in her day-to-day life.

Yeah, I mean that last time he was unwell, we called, or mum called the local mental health centre and spoke to them about what was going on [sound of pet dog snoring faintly in the background]. And then someone started coming over, they had someone start coming over every day to talk to him and to monitor how he was going and to sort of watch him take his medication and monitor how that was helping him. So that was the main thing that we did. And then because they were sort of trialling different medication and they increased it and he was becoming more manic and I went over there one day and he had a cheque there for $5000, and so we started getting really worried that he was going to be playing around with his money and withdraw huge amounts.

And we didn’t know what he was going to do, because we knew that it was not outside the realm of possibility that he would just give that to someone. And so it was at that point that I spoke to my mum and said, “He needs to be in hospital”, and he then went to the healthcare mental health centre and was diagnosed there, well, was assessed there and they said, “Yes, we think that he is sick enough to be in hospital”. So then he went to hospital after that.

So your mum took him in and had an assessment done …

Well, he had an appointment to see the, I don’t know if it was the psychiatrist, or the case manager, or someone there that day anyway and he had missed his appointment. So we just said to him, “You’ve got to go to that”, and I can’t even remember what we said to get him there but, yeah, somehow he got there.

But you know, there comes a point when you know you have to weigh up the pros and cons. It’s just like ringing the CAT team. You have to say “Do I listen to what their concern is?”, which is “I don’t want to go to hospital”, or do you as a parent say, “No, I have to make a choice that’s in my child’s best interest”. And I’ve always done that. I’ve never hesitated to ring the CAT team and say, “My son’s unwell. My belief is he needs hospitalisation”. I have done that for every episode. I just am clear that this needs to happen, so I just do that because he needs to be in hospital for his safety. And also too you know when people are manic, I mean, they could do something to somebody else. And I don’t want to take that risk.

And there was a time when, just you know, a couple of years ago when he was given some day, I was going to say release, but he was given a day to just be with family and we could go to the park. And we were walking through the park and he misinterpreted something that a man had said or done and I really had to manage that situation carefully because all you needed was somebody who was a bit aggressive on the other side and there could have been a fight that took place. So, yeah, I’d hate something like that to happen, for both parties. So yes, I’ve always been clear that you have to look after people that are unwell and make decisions for them that they’re unhappy with.

It’s hard, I guess, when the person is saying they’re having suicidal thoughts to stand up for that right or that opinion. So, in those ways, you’ve got to actually go to the contrary of what they want.

Can you illustrate that maybe with a … ?

I would say probably in terms of the medications and that sort of thing, you try and empower them by them being the ones administering it or them being in control of their treatment, so to speak. But then, I guess, with suicidal thoughts, that increased fear or likelihood of an overdose probably comes into your consideration. And we had a couple of those instances, so then, she obviously still wants to be in control of her medication because she has that option to take more of it if, you know, she wants to, where then I would step in and take it all, hide it, put it away somewhere out of her control. So, I guess that’s something you do as a carer contrary to what their wants are.

Do you feel like you’re on watch at times?

Definitely in the period of the four years that she had depression. I felt like I was on constant watch of everything that she did, whether she was taking it or, there was times, I guess, in that period where I would leave her in control of it, but I would have to watch her take it every night because I didn’t trust whether she was taking it at all or taking too much of it. And then there would have been other times in that period where I would have been administering it to her every night because I just didn’t trust her to have those medications. And I would say that would have had lingering effects, even after her getting better and better and better. I still think that was probably the thing that took the longest to rebuild and not have those anxious moments of trust.

But then they also, we had this conversation about, “Oh, because he’s non-compliant, he has to be discharged on a community treatment order”. And that’s when I rallied quite hard to not have that. So we ended up having to meet with the tribunal. Is that what they’re called? The tribunal. Because he was involuntary, we wanted to get him off involuntary status and we didn’t want to have the community treatment order. And that was a really funny experience, because it was my brother and I sitting across the table from the tribunal members and a treating psychiatrist, who we’ve never met before. And I was visiting my brother pretty much daily, so I knew most of the staff. But this – a new person who came in had the wrong file, so proceeded to say, “Oh, so I see here that you were in prison”.

And my brother’s like, ‘What?’ Because he’s having delusions and that was the worst thing you can say to someone who’s psychotic. Anyway, eventually they found the right file and we were able to remove the involuntary status and leave the hospital without a community treatment order. But that experience was quite intimidating because it was just my brother who was really unwell, and me, who was completely new to this whole tribunal set-up. And not knowing whether we would get the result.

And for him it was a really devastating result. He really didn’t want to be on a community treatment order. Not because he didn’t want to take his medication, but because he just found it undignified, I guess. Just couldn’t understand why if he’s lived with this illness and managed it so well for so long and, yes, he’s had a giant relapse, but he didn’t see why he should be punished for being unwell. And he said it felt like a punishment.

What would you tell doctors, that you think carers know that they [doctors] don’t?

Well I don’t know, I just think they know more about the illness than what a doctor does. They know a certain amount that – We go through it with the patient. They don’t. They know what they’re taught, and all that sort of thing, but there’s varying degrees of the illness. That they don’t see, and I think it’s the same with anyone. They’ll say, “Well you don’t, no that’s not caused by the illness sort of thing”, and it’s just using a quick example. And it’s the same with my husband’s Parkinson’s and they’ll say, “No that’s not from Parkinson’s”, but all the people with Parkinson’s get it.

So it has to be, but the doctor will say it’s not, they just don’t know at all, but a carer knows what their child is or their spouse or whatever is going through. Because they see it daily and a doctor only sees the patient once a month, once every few months. And they just don’t know, and the patient goes in there, and they’ve got their good look and they’re normal look. They [doctors] don’t know.

Do you find as part of caring for your son you’ve encountered maybe psychiatrists or mental health practitioners not taking into account what you’ve told them?

Yes, I don’t think they believe you half the time, because they’re not seeing it. Quite often they would be in an episode, but when you took them to the doctor or whatever, they’re presenting well. But my husband would know how to get them to show their true colours, to show what we’re really going through. Which was really good, because other than that, they’d [doctors would] say, “What on earth are they talking about, he’s all right”.

Can you give me an example?

Oh I don’t know, he [husband] just knew what to say, to just to get him out of the thing that makes him seem normal. He’s got this little thing that could make him seem normal, and just to break that little whatever it is, just to put him back how he really is.

[Four years ago], that was the worst. For nine days, I tried to call the case manager and tell him he’s not travelling well, he’s relapsing and he used to tell me, “I just talked to him and he sounds all right” He brought the doctor to the house in between it was a Friday night, Friday afternoon 4:30 to discharge himself from being a case manager and to prove me wrong, that my son’s got an anger issue. We did explain, between me and my husband, to the doctor what’s going on and how my son is acting and it’s terrifying. The doctor said, “I believe you but I need to assess your son”. They left.

My son wasn’t there and until Tuesday morning when, we’ve had the weekend terrified. Monday no one took me seriously. Tuesday morning we found the rope and the chair under the veranda. I panicked. I called the case manager. He told me that he can’t come to my house anymore because my son is a danger to himself and others. I have to call the police. When I contacted the police that day they said to me, “We are not a taxi driver. It’s business hours. His case manager has to contact us or the triage”. I went back to the case manager and he said to me, “Leave it with me. I will call the police. I’ll get back to you”. No one got back to me.

I tried to convince my son to [let me] take him to the hospital so the case manager would discharge himself, [which would mean my son] won’t have a case manager anymore and [my son will] be free [and then I could contact the police directly without the case manager as intermediary]. On the way I said I would buy him McDonald’s and cigarettes. It took me a while to convince him. I did succeed. That day, God knows how I got to the hospital. I stopped with him on the way to get McDonald’s. He asked about the cigarettes, I said, “On the way back I’ll buy you the cigarettes because you just finished eating. You see the case manager, on the way back I’ll buy cigarettes”. Just to make sure he’s going to stay in the car. I got him there.

He was admitted to the hospital and when I went in that psych ward to see him, in the psych ward, the doctor asked me what do I think, “What’s happening?” The case manager answers straight away, “He’s got an anger issue because he came home and he found his room clean, he went into his room and he’ll be there for couple of days and he’d be discharged just to settle a bit”. Then the doctor said to me, “What do you think? How long will he be staying at the hospital?” I said, “I’ll be surprised if he stays less than four weeks”. And then she said to me, “You’re right”. And my son spent five weeks and a half at the hospital. I proved them wrong and I proved to them that I can identify when my son is relapsing. I can tell when that’s my son and when that’s the sick person. I can separate the two.

And certainly as he was leaving, when they were discharging him, after he’d been there for some weeks and they were going to discharge him, then we had a family meeting, which was very good. So I was able to get my dad and my sister and a couple of other people, we had a family discussion to find out what was wrong and what we could do to help. And they kept saying, “Oh well, he can go and see his psychiatrist”, in the regional area, in the town where I am. And we said, “Well, there isn’t one”. “Oh, there must be one”. They kept saying, “Oh, there must be one”. And I said, “No, no, there’s not”.

And there isn’t. There was a GP who was doing a course who was studying psychiatry. So he’d done a year or something of it. So he was based there at the hospital, you could see him. And they must have had, occasionally, like I said before with the other place there, they do have some sort of visiting psychiatrist occasionally. So there wasn’t much. So he ended up, that when we went home, he would be in the care of the CAT [Crisis Assessment and Treatment] team from the mental hospital area that was there. There was a hospital there, but they just didn’t have psychiatrists, they had psychiatric nurses and stuff instead.

And so there was a sort of a CAT team type triage, I don’t know what they were, that’s what they called them. And I think a psychiatrist nurse would come and visit him. And they apparently really shouldn’t have let him out as early as they did. The psychiatric nurse who visited him when he came home with me was horrified, that he was still way, way unwell. And yeah, was really a bit shocked, because all he did was sleep and he was still very, insight didn’t seem to be part of his vocabulary.

The law as I see it and I’ve experienced it protects the person who is mentally ill. When the person’s mentally ill, it’s the carer that knows they’re not well. It’s the carer that puts themselves in the hot seat of trying to deal with someone who won’t take medication, won’t seek help. It’s the carer that has to protect themself from physical assault, aggression, abuse, and they can see the person’s not well. But you can’t do anything. The law doesn’t allow you to ring a triage team or the CAT [Crisis Assessment and Treatment] team and say, “Hey, my child’s schizophrenic. They’re not taking medicine. They’re out of control. I need your help. I need it now”. It doesn’t happen. And if it does happen, it’s usually after police have been called and someone’s hurt, whether it be the carer or the patient. That needs to change.

Yeah, I definitely think it is in favour of the consumer, absolutely. There is less we can do as carers because even my daughter, she already said to me, “Oh my case worker told me…” that was just a few weeks before she died and she told me that “I have the right and if I don’t want to take my medication that’s all right”, and I said, “Yeah, I’ve already heard that too”. We are not in favour of it but then they go off their medication anyway, one way or another and they have more rights. That’s the opinion with the carers. We said right from the beginning that’s going to make it more difficult for us. I think so.

But because I mean even years ago, the first thing was, “You’ve gone off your medication, have you taken your medication?” It was always, it was a crime if they went to hospital and they hadn’t taken their medication. They were punished for it, just like that, that’s how it was. It was the number one rule. Well it’s not going to be like that anymore, so why put them on medication in the first place because some of them just won’t take it.

I don’t know, anyway, I’m free of that now anyway. That’s not life for me anymore, but already the carers did say that they all feel it’s in favour of the consumer and there’s nothing in it for the carer whatsoever, I would say, nothing. There will never, they will stand up and say, “I have every right to make my own decision. You can’t tell me what to do anymore”. I assure you that will come up. Maybe it’s a good thing, let’s wait and see. I can’t see it happening, but maybe it is a good thing if they’re making their own decisions, which they have done anyway, take it or not take it.

But if it continues that the carer’s just sort of regarded as logistics, the person who brings the cared for person to hospital, then that means, could be more work for the carer because as you say, the cared for person might be saying that they have a right to exercise not taking medication. If that is the case, then how can, how do you see, what can be done for carers, if that should happen?

Don’t know, carers turn away, get angry. If you care, I could see some of them saying, “Well, if that’s the case then forget it, you deal with it”. You know, “Take complete care of yourself and make decisions and whatnot, don’t come home crying to me”, that sort of thing.

And so then we’re dealing, if carers are such an important part of the mental health system, we’re looking at potentially the –

[Overspeaking] The carer collapsing. See in the past we would have sort of been saying to the doctor, “Oh look doctor, she’s gone off medication and she’s not right at all”. “Call the CAT team”. So that will all then probably be a thing of the past. Why do I need to call the CAT [Crisis Assessment and Treatment] team if they’re not concerned about her taking medication anymore?

Most of the time, sometimes he might have been actually the [metropolitan hospital]? They keep them in a while, he spent four months in hospital, we didn’t know because of the privacy act.* And unless [son] wants you to know where he is, they can’t tell you. So you just don’t know what’s happening, because of the privacy act.

What do you think of the privacy act?

I don’t agree with a lot of it, because he’s got a condition that we’re responsible for him up to a certain degree. And we should know what’s going on, and and in certain conditions, we should know what’s going on.

Can you talk a little bit about what you think your responsibility for your son is, and the limit, because you said, “We’re responsible for him up to a certain limit”. I’d love to know what you think the scope of it is?

Well I don’t know, you like to know what’s happening to your children, and where they are, and whether they’re well or not. The only, sometimes, if you haven’t heard from them for a while, as luck happens, at one stage he gave us his phone banking details. So that if I haven’t heard from him in a while, I can ring up and see if he’s been taking his money out of his bank account. And that’s the only way I can find out if he’s still alive. I don’t think that’s right, if he’s sick in hospital, I think parents should be contacted when it’s a mental health issue. I think that the privacy act can go a little bit too far in that way.

If you think it can go a little bit too far, I would like to know if you think that there are, you can understand that there are reasonable aspects to the privacy act?

Oh yes, yes. But …

What do you think they are?

Well, I suppose you can not want people to know your private business and all that sort of thing. But they could just ring you and say, ‘Your son’s in hospital’. That’s all you need to know, they don’t have to say what his condition is, or anything like that. Just to know that he’s alive, and where he is.

Note: This website does not endorse this account of privacy legislation, which was this carer’s understanding of the Privacy Act at the time of the interview. The Privacy Act is cited incorrectly here in the context of the circumstances described in this clip. The relevant section of the Mental Health Act 2014 (Vic) is 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.