Background: Alexia lives with her son and husband in an outer metropolitan suburb. She moved to Australia when she was 18, and identifies as both Middle Eastern and Australian.
About Alexia
Alexia cares full-time for her son, and works as a volunteer one day a week with families of people living with mental illness and addiction. Alexia’s son was diagnosed with episode psychosis when he was 21, schizoaffective disorder when he was 26, and personality disorder when he was 29. He has been hospitalised involuntarily eight times, and has been placed under several Community Treatment Orders (CTOs).
Carers' experiences of person cared for first becoming unwell - Alexia felt that more help was needed for her son to understand the impact of drugs and alcohol on mental health.
How are they expecting us to -they want -now there is a new Mental Health Act -they want the consumer to be treated in the community. How do you expect me to look after him when he hit rock bottom, when you’re not, you didn’t prepare him and explain to him the impact of the mental illness and the drugs on each other? He doesn’t understand that.
He lives in denial about his mental health issue. [He believes] that he doesn’t suffer from mental illness, and with the addiction, [he says], “Yeah it’s not damaging me. I am fine. I’m on top of it”. And then he would say, “If I don’t take the marijuana I’ll be very unsettled and agitated”.
Carers' experiences of searching for information - Alexia described how joining a carer support group helped her to 'overcome' the discrimination she said she had experienced within her ethno-cultural community after her son went to hospital following his first episode of psychosis.
[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.
Carers' experiences of person cared for receiving a psychiatric diagnosis - Alexia described seeing her son's psychiatrist with her son and asking the psychiatrist to explain his son's 'personality disorder' diagnosis. Her son didn't agree with the diagnosis and left the appointment.
In December, I went back to see the psychiatrist and I said to him – my son was with me at the time. The first time [I had seen the psychiatrist] [son] wasn’t with me. I said, “Last time you said that my son suffer from personality disorder. Could you please explain more because I didn’t get it. It didn’t hit me at the beginning but it did after that”.
He said, “I’m not going to give it the label”. Then my son said, “No, I don’t have personality disorder”. [The psychiatrist] said, “Yes”. [Son] said, “No you don’t know anything”. [The psychiatrist] said, “Yes, you do have a personality disorder”. That’s the psychiatrist: “You are a liar. You are manipulative. You are a very hard person to live with”.
Then my son said to him, “You’re a f… this f… that. You don’t know anything. You don’t know me. You only see me every five/six months for 15 minutes. How could you give me a label like that? I am not going to sit down in the meeting and listen to your bullshit. I am [going] outside. When you finish – if you want to stay and listen to him, I’m waiting outside”. And [son] left the room.
Then the psychiatrist said to me, “It’s not a mental health issue, it’s a behaviour”. I left and I went on the internet googling. [To find out] what’s the psychiatrist been talking about? Yes, maybe my son got a personality disorder. But it’s not the behaviour. It’s a mental health issue.
Carers' experiences of hospitals and mental health units - Alexia recalled witnessing her son experience a 'horrendous' withdrawal when his case manager failed to follow up Alexia and her son's request for support to stop using ice (crystalline methamphetamine).
My son approached his new case manager and told him that he stopped the hard drugs which is the ice (crystalline methamphetamine)* and he needs support. He told him, “I’ll get back to you. I need to talk to the psychiatrist”. My son came to the car and he said, “I told my case manager that I stopped the hard drugs and I need support and he’s going to get back to me to give me something to support [me]”. We have a holiday house and he said to me, “We go to the holiday house and spend the long weekend so I don’t see anyone”. I said, “Yep no problem”. That day I kept on trying to call the case manager.
Unfortunately there was no-one at the reception and no one returned my call. We spent three days in the holiday house away from here, from where we live. And watching my son going through horrendous experience with the withdrawal and just me [to support him], was hopeless. The only thing I had is Valium, which was 12 months out of date. I used to give him two tablets four times a day and it didn’t help but at least I was saying, “We’re trying. We’re going to do it mate. I love you. We did it before, we can do it now”. We did it.
When he came back I called the triage just to tell them what happened and they said it wasn’t right. The case manager on the spot, he should’ve called the psychiatrist and gave him something so he doesn’t go through this horrendous withdrawal. No one called me on Monday. They said they would leave a message so the case manager would contact me on Monday first thing in the morning. No one contacted me.
When I called them back no one was there and the receptionist asked me if I would like to talk to the psychiatrist because he’s around. I said, “Yes put him on the phone”. And then she got back to me and she said, “He’s busy”. I said, “Okay”. I left a message that the people who [are on] the adult treating team [in] this place, they need to be sweeped out and [the] head of them is [the] treating psychiatrist. I said, “Please make sure to pass on the message from me. Thank you. I’m so sorry. I don’t mean to be angry at you. You’ve nothing to do with it. But I am angry at the treating team. Thank you very much”.
When the case manager came, [he] got my message as well and he contacted me and he said, end of the conversation was, “We are here to support his mental health”. I said, “What about the addiction? You haven’t been successful since 2007. Until recently you’ve been treating my son, treating the mental health, and the addiction has the biggest impact on the mental health, and the medication’s not working. It’s just keeping him hanging from relapsing. Until he get discharged from the CTO, he’ll stop the medication, then he’ll relapse”.
And they said, “If he needs support for his mental health we are here to support him. With his addiction he has to call other Alcohol and Other Drug (AOD) services. Thank you very much”, and [that] was it. I sent a complaint and starting from [health minister] at the [government department]; Chief Psychiatry, [mental health non governmental organisation] and the rest of the crew at the treating hospital, the heads and the lower. And it took the Chief Psychiatry one month to get back to me and to ask me if they can act on my behalf.
I said yes. Already arranged, already had an appointment but unfortunately they did a new treatment plan and the new treatment plan said, “The depot every fortnight ongoing. Support to my son with his addiction see AOD service provider ongoing. Psychologist to my son ongoing. Support to myself – to the mother and the family ongoing”. The only support there, the only thing going there is an injection every fortnight. The rest – there is no plan to start with, to begin with, [that is] going to be ongoing. So there is nothing at all. And I have to deal with everything. How am I going to juggle everything? I don’t know.
So yeah, it does make me wonder are these people professional? Because when I sit down in front of psychiatrist and I said – and every time I mention, “[Son] need a dual diagnosis counsellor, you’re not successful so far dealing with one without the other”. End of the conversation always, “You’re right. But we’re here to deal with the mental health”. Full stop.
Carers' experiences of support groups, support workers and respite care - 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.
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.
Carers and supported decision making mechanisms - Supported decision making mechanisms were less 'valuable', Alexia suggested, for carers of people with severe mental health problems who 'live in denial'.
Maybe it’s valuable for some people. Not the person who lives in denial. The person who lives in denial, he’s not going to do it. They have to work with the family. Even with the advance statement, the treating psychiatrist, they can override that. When it comes to treatment and the psychiatrist can see that he doesn’t know he should be on such a medication or do ECT. And without the consent they will do it. So the psychiatrist can override that. They said that we can call the [Mental Health] Complaints Commissioner and we can ask for a second [psychiatric] opinion. By the time we get the second [psychiatric] opinion it will be too late. Because by the time you arrange for a second [psychiatric] opinion the damage is done and the psychiatrist will do whatever needs to be done. So it can be overridden. But if they involve the carer in the treating, in the treatment decisions, and they listen, we can, this prevention state, it can be done.
Carers and Community Treatment Orders - When Alexia's son told her he had been discharged from his CTO without a plan in place for therapeutic support, she said it hit her like a 'bucket' of 'ice' cold water.
I remember my son was discharged early [last year] from the CTO in February. Before he was discharged from the CTO, I contacted the case manager and I said to him, “Please before discharging my son from the CTO, could you please prepare him? Talk to the psychiatrist. He needs support. He needs to acknowledge that he’s got mental health issue. He needs to acknowledge that he’s got addiction issue as well. And my son, he’s into this cycle where new friends, new drugs and soon he’s going to be in trouble with the police”.
I said to him, “If you go back to his file, you will see the cycle I’m talking about. He’s neglecting his hygiene, he’s smiling and laughing to himself, he’s doing more drugs, not sleeping and [has] new friends”. “Yes, I know what you’re talking about. I will talk to the psychiatrist and we’ll get back to you”. I said, “Please arrange for a family meeting before the discharge”. “I will get back to you”.
The minute my son showed up for his meeting, they wanted to discharge him from the CTO. The minute he showed up, it was only the case manager and the treating psychiatrist, which is the one who’s still there, his psychiatrist. Fifteen minutes later my son ran to the car and he said, “Wow, I’m off the hook. They discharged me from the CTO”. And I felt like, it’s like you hit me with a cold, with ice bucket. I said, “Oh that’s good. I’m so proud. I know you’re doing very well”. He said, “You’re laughing at me”. I said, “No no no, I’m not laughing at you. You’re doing very well. Yeah, you don’t need to be on a CTO”.
On the way home at the lights here, he opened the door. The light was red while I was approaching the light. I saw that. He said, “I want to go and celebrate”. I said, “Don’t open the car, don’t open the door”. He said, “Stop stop”. I said, “I can’t stop. The light is turning green. It’s orange turning green. There’s cars behind me, cars in front of me. It’s a busy road”. He didn’t care. He opened the door, I braked, he jumped from the car. He crossed the road without looking and went to his friend to celebrate.
In February [he was discharged] and in June he relapsed, [which is] when we called the police. He had the knife and he walked off [out of] the house. He wanted to kill the treating team. He wanted to kill the police. He was admitted. About 40 police squads surrounded the area where he was. [They had to] drive him to the hospital because he stopped the medication and they didn’t listen to me. When he was relapsing if the case manager [had taken] me seriously, he would’ve seen that yes, this woman is right. That’s a cycle.
Supporting treatment decisions - Alexia described her 'terrifying' experience of caring for her son for nine days when he was 'relapsing' and did not want to seek treatment.
[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 cigarette, I said, “On the way back I’ll buy you the cigarette 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 psyche 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.
How to increase carers' participation in supporting treatment decisions - Practitioners needed to 'involve' family carers more in decision making about treatment after their loved ones left hospital, Alexia said. This could help 'prevent' carers' loved ones from becoming 'unwell' again.
If they involve the carer in the treatment decision and they listen, we can … this prevention state, it can be done. We can catch the person before hitting rock bottom. Because it doesn’t happen overnight. Hitting rock bottom, it doesn’t happen overnight. There are stages that the consumer will go through. Sometimes they stopped eating, sleeping. They neglect their hygiene badly, they hear voices. It depends on the sickness, the voices, the talking, imagining stuff, paranoia. So there are bits and pieces there where the puzzle can be put together before hitting rock bottom. So if they do that, involving the carer in the decision making and they work with the carer closely and the family, the carer doesn’t have to be a mother or it can be a friend or a sibling. So they can have this prevention and we can have a better outcome but first we need a proper structured treatment plan.
Impact of caring on working life and finances - When the Disability Support Pension was paid to her son's bank account instead of to Alexia's, he began purchasing expensive items and went into debt.
Because the money, since [eight years ago], the previous psychiatrist was telling the previous case manager to put my son with the state trustee to manage his pension. My son is on disability pension. Less money, less drugs. And at the time, my son didn’t have any debt because his pension used to come under my name and I used to manage his payment. I was not getting any money from him because if we did then we [would have had a] fight because he would say I’m stealing his money.
The case manager convinced my son to transfer the money, his pension, into his account instead of coming into my account. The pension would go to my son’s account. Then we’ll see if he’s going to have debt and how he’s going to manage his money. In December, he applied for a credit card loan from, I think, [bank]. And it’s been approved $5000.
He spent the money before he got the card because he only needed the number [of the loan account]. And he bought himself a desk, executive chair, a desktop [computer] and microphone speakers for his music, because he was doing music, rap music and so far he didn’t pay anything off from that. Then he bought in between a car, a $13,000 car. He didn’t do road worthy, he drove it, travelling and getting fines from the [Victorian toll road].
And then he [sold] the car but he got stacks of fines and three months ago he went and applied for a loan and he bought a motor bike – $11,500 loan. How? I don’t know. I took him to see a financial counsellor. The last four payments of his pension have been coming to my account where I give him all the money except the $250 every month to pay off the motor bike. But the rest of the debt hasn’t been dealt with.
Advice for mental health practitioners - Alexia admitted initially she had wanted to 'protect' her son and 'not to let go'. However, she said this was no longer the case because she had gained 'understanding' of mental health issues through education.
[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.
More about Alexia
Alexia says that one benefit of her quest over the last ten years to find ‘holistic’ treatment for her son is that she has changed for the better into a ‘different person’.
A homemaker, Alexia is 52 years old and married with two adult children. For the past decade, she has cared for her 30-year-old son who lives with her and her husband. Alexia described first suspecting her son was using ‘illicit’ drugs when he was 14 and said she thought this was an escape from tensions at home. When her son was a teenager, Alexia feared he would be found ‘dead in a gutter’ due to his ‘addiction’ to drugs, which he continues to use.
Alexia noticed her son was acting ‘paranoid’ when he was 20, and he was hospitalised and diagnosed with first and second episode psychosis at 23. Five years later he received a diagnosis of schizoaffective disorder, after which some members of Alexia’s cultural community claimed there was ‘nothing wrong’ with him, and ‘blamed’ her for ‘throwing’ him into hospital. This made her feel ‘judged’ at the time when she needed support.
A main obstacle Alexia feels she has had to overcome has been the ‘unprofessional’ behaviour of some mental health practitioners. Her son’s case manager told him when he was 26 that he was not mentally ill but just had ‘anger issues’. Alexia believes that since then her son has ‘lived in denial’ about having a mental illness, which she said has made caring for him difficult. Alexia said her son’s treating team also ignored her whenever she tried to warn them that he was relapsing. She also questioned the quality of treatment her son received at the hands of a psychiatrist who she said called her son a ‘liar’ when he diagnosed him at the age of 29 with personality disorder.
Alexia’s son has been hospitalised eight times in ten years and discharged each time on a CTO. Alexia feels that he is stuck in a ‘cycle’ of receiving a fortnightly mandatory depot injection of antipsychotic medication whilst under a CTO, then relapsing after the CTO is lifted. In Alexia’s view, depot injections do not count as ‘proper treatment’ for people like her son who have both a mental illness and a drug addiction. She said they just ‘keep him hanging’, and described her worry that there will be no one to prevent him from falling through the ‘cracks’ of the mental health system after she dies.
Alexia thinks her son urgently needs a dual diagnosis, in recognition of both his mental illness and substance abuse problem. This would make him eligible to see a dual diagnosis counsellor who could explore the ‘layers’ behind his mental illness and addiction.
Although the challenges she has faced have been ‘heartbreaking’, Alexia said they have also enabled her to find her voice and to speak out about her experiences. She hopes that hearing her story might help others facing similar challenges.