Advice for mental health practitioners

[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”. My support worker did write a letter to the case manager to try to work together. He got back to her and said that he has an anger issue and “the mother doesn’t give him space to breathe and she’s always on his back”. But [the case manager] always used to say that to my son and to me. So he didn’t say anything new. “She’s overprotective mother. He should move out from home because he wasn’t, he doesn’t have freedom”. That day, God knows how I got [son] to the hospital.

When I went in that psych 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 he will 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. But I’m still the overprotective mother who wants to hold on to her son and not to let go. I was like that when my son had his first episode of psychosis. It wasn’t easy for someone to come and tell a mum, “”Your son has a mental health issue””. I didn’t accept it. I did my best to – I wanted to protect my son. I wanted to hold on to him and not to let go. For years I was waiting for someone to come and tell me, “”Your son is dead””. And now he’s unwell. He’s stopped the drugs. I did my best to protect him, yes, because I don’t want to lose my son.

But when I started learning about mental health and addiction I became a different person. I can understand more about mental health, about addiction and identify which is my son and which one to call the sick person [who has] a mental health issue.

How did you feel when you spoke out to mental health practitioners, to psychiatrists and how did they respond to you and how did you respond to their response to you? Did they listen to you?

At times, yes. Finally, it took a long time though and like I said, there was one particular one she went to for many years in, in [outer city suburb]. He was one of the first ones that would allow you to, to speak, or have your say, or I could ring at times and say, “Look, she hasn’t been well, she’s got an appointment with you today. I know she hasn’t been taking medication, sort of, but she’s really …” da, da, da, da, da and that was because most of them don’t want to know about it, you know, as a carer but most of the time she didn’t want you to be there either and if you were with the doctor it wasn’t very recognised whatever you had to say. It was one of the things that carers are still quite, what’s the word, upset about it and they say, “Oh I went with her and they didn’t want to hear what I had to say”.

Unfortunately that still comes up a lot. Is it of no importance to them? Because whatever, they still have to deal with it. I don’t know, but quite often carers do get upset that they’re not being heard, like I said, until it’s time for them to come home, then you’re number one call so.

What would your message to mental health practitioners be? With new carers. Like yourself.

Talk in layman’s terms. Ensure that everyone is on the same page. Acknowledge them and I guess show them some respect and show them some understanding and compassion. Listen to what they have to say and take on board that this is all new to them and give them as much information. And suggest help organisations for them, maybe the admin staff in the medical centre can you know, do a little flyer or something to say these are [all the] organisations. Here’s their number. A simple thing like that would be great.

If you had advice for professionals and a message to other people caring for loved ones, is there anything you wish professionals had told you sooner, is there anything you wish you’d known earlier, for example?

Oh, yeah. I think with professionals it’s if they can be – if they can understand that you are probably coming from a situation of not knowing anything about mental illness, that certainly the first time you come into contact with the system, you don’t understand anything about mental illness. I sort of really didn’t at all. I mean, I sort of understand the words depression and, you know, manic depression or something, and I think they were at the time. But not really understanding what it really means.

And if they can explain that to you and how long these things, that these things – if they can give you any sort of timeline of when your person will be able to come out of it, you know, how these – what these drugs might have, what effects they might have, I think that would be really useful. Because I really didn’t understand the effects of the drugs, particularly.

And the fact that yes, he might come out of it one day [laughs]. You know, when that’s in that acute space, you really, I found it very hard to think, ‘Is this what it’s going to be like for the rest of my life with him?’ Was that his life? But knowing that people come out and do get the recovery stage, I didn’t understand about the recovery stage until it started to happen.

You need people with positive – that should be the prerequisites for recruitment in that area. You don’t need clinically devoid doctors with no feelings. You need to have empathy.

You need to have some sort of relationship building, you know, [wife] and I used to see the same doctor. Now, to me he’s a great doctor. You know? He’s to the point and all that. [Wife] doesn’t like him because he’s not, he’s just – she seems to think he just churns and just gives him her drugs, whereas I I think he’s great. You know? He just – we have a chat. I was one of his first patients when he split from his old job. So he started up his own practice and all that. So I’ve been with him a long time. I hardly see him anyway [laughs].

I might go see him twice a year, which he says, “No, you need to see me a bit more”. Because I have to get my prescriptions for my medications and stuff – the blood pressure and all that. But they’re the sort of people you want in the public sector. Positive people, I suppose and it will have an impact on them.

When he left hospital we knew that there was going to be a team coming out to see him on a regular basis, but it was really, as far as like our relationship with them goes, it was really my mum saying, “Well, I’m going to call you every week and find out what’s going on”. There was no ongoing support offered from them to keep us in in the loop and I suppose, you know, he’s 38 and, you know, he is an adult.

But at the same time we are the ones that see him. Like, they see him for maybe half-an-hour once a week; we’re the ones that talk to him every day. So it makes sense to me – if this is to be managed properly – that we would have a bit more involvement in the process.

And do you know how long that they were going to have that support for him?

I don’t know. I think at the moment his, well, it’s been a couple of weeks since he left hospital and I think he sees them a couple of times a week and then it’s going to go to like once a – he’ll have to go in and see the case manager once a week or something.

In our society, for carers and people who are being cared for, there isn’t – you know, you have to go out and you have to ask for support. And then it’s not as though anyone out there is pre-aware that someone might need help or that there is something that requires help, at all.

Yeah, I think that’s absolutely true. And I think that probably adds to your, to a carer’s isolation, in that, you know, you’re the one doing all the thinking and, and that for two people pretty much. And, and sometimes you just need someone to look after you or just come around and look after your interests or put their hand up and say, “I’ll do this for you so you don’t have to ask for it”.

Because, it’s – you’ve got enough on your plate or you’re dealing with enough, especially if you’re shy like me. It takes a lot of energy just to ask someone for help. So, when you’re already low on energy because you’re doing all you can to look after someone, it’d be helpful for someone just to say, “I’m coming around. You need to find something for yourself to do”.

So, in a sense, if people, not just carers watch this website, but also friends of carers, who might not know that when someone can’t ask for help, maybe don’t just offer it, but just do it [laughs].

Yeah, I think so. I think sometimes that’s what you need as a carer, because you actually don’t want to think or you don’t want to take up someone’s time. So, if someone was just to do it, then you don’t have that option of saying, “Oh, no thanks. That’s fine”, or that sort of thing. You’re just like, “Oh, okay. Cool. I’ll plan something to do for myself”. Yeah, I think, if someone was just to do it rather than ask, it’d be a lot more beneficial to the carer.

And could you talk a bit about this clinician – it’s a psychiatrist? And he contacted, or she contacted you?

He contacted me when we first knew that we were going to have to move again, and said, “Do you realise how concerned he is?” And I said, “Yes, I do, and I’m feeling similar”. We’ve actually spoken together about how we feel. And he said, “I don’t actually have permission, but he didn’t say no, I can’t talk to you”. He said, “I feel so concerned about him that I want to open the channels between the two of us. And so I’m available if you want to talk to me, and I will tell him that I’ve spoken to you”. And I said, “I will tell him too, that I’ve spoken”.

And so it was a relief that this clinician took the time just to ring me and say, “Hey, I’m here”. He’s going to help me get the carers allowance. I have never had anything like that, and apparently it’s not means tested. So since [son’s name], my son lives with me, all that length of time, you know, every day, all day, then we will be eligible for a little bit. Which yeah, that will help. But I don’t know about housing, that is my biggest concern at the moment.

So in terms of how you feel and the impact it’s had on you, having this channel of communication open up with a clinician who has insight into your son’s frame of mind, what difference has that made?

I’m not quite so alone, not quite so alone. And he’s there for me to contact. He only works Wednesday, Thursday, Friday, so I wanted to talk to him last week and I thought, ‘Oh, wrong day’. [laughs] So I have to be aware of which days he’s there. But it’s okay, I plan to call him tomorrow.

Okay, so I think what I’m thinking now just with all these things in mind is that there seems to be a lack of actually building real relationships with these people with mental illness. It’s not something that you can walk into their lives and offer care and support and it be useful because they have – it has to – it takes a long, long time. And if you could build, and I think you have, you know there needs – I mean it seems like a huge ask but it seems – it needs to be over like 10, 20 year kind of relationships I think.

Because you know there’s not one single person that I can name or think of that my sister has gone back to over the whole time of the entire time since she’s been diagnosed with her illness which has probably been about 10 years now or 10, 15 years.

And I don’t know like I think you know [pause] maybe back in the day when families did have family doctors that were there for their whole – maybe there’s something to that you know. Like they are there for their whole lives and their children’s lives, you know, and their grandchildren’s lives, that are part of that family as well. It sort of needs to be that kind of intensive I think in a way.

Not necessarily there every single day but to be there, not on holiday, not referring to someone else, not wanting to deal with your case anymore you know. Because I think from my perspective, my sister gets a lot of rejection in her life having, dealing with her illness and that to receive that from the care end of things is really disappointing.

Her rejection doesn’t put someone who’s rejected in a frame of mind where they think they can participate.

Yeah, and it also doesn’t leave any doors open to you – like I don’t think that in an emergency I would know who to call or if there was anyone to call or that someone else was invested in our situation like that. I don’t know.

It’s quite a radical [laughs] vision.

It is. I’m not saying it’s, I don’t really feel like it is a vision but I do feel like maybe there just needs to be a little bit more reliability and knowing that once you’ve found someone there that that person is going to be there to, if once [sister] say met a psychiatrist whom she liked and got along with that they could build a rapport and that that person would then pursue that end of things. So then you could feel comfortable knowing the family members and knowing the patient well enough to know what makes them unwell or you know like we talked about earlier.