Most of the people we spoke to talked about the time when the person being cared for first became ‘unwell’. Many carers interviewed were parents or siblings who noticed a change in the person cared for during childhood or adolescence.
It was not always easy for carers to pinpoint when the person being cared for first started to become ‘unwell’ or what exactly had changed. Changes in appearance or temperament could be put down to adolescence or lifestyle choices. Realising that the person cared for needed help, and getting help, were mentioned as particularly difficult when a family member first became ‘unwell’.
This Talking Point includes people describing their experiences of caring for loved ones who attempted to self-harm, which some people might find upsetting or distressing to read. All the material on this website is intended to support carers to develop a better understanding of these behaviours, and how to get help for the person cared for. If you need help, please visit our Resources and information page, which includes confidential helpline numbers.
Quick Links
Adolescence
Signs of first becoming ‘unwell’
Getting help when the person cared for first became ‘unwell’
Drugs and alcohol
Traumatic life events
Although his son was ‘a little hyperactive’,
George hadn’t realised there was anything wrong until his son reacted badly to an aunt’s death. In hindsight George realised his son had started to change.
> Click here to view the transcript
Yeah, well, we didn’t notice anything really about [son] other than he – you might’ve said he was a little hyperactive, that’s about all. But you just get to accept that’s his nature and away you go. Until it gets more intense and more intense, and then one day it explodes. And in my son’s case, it was that he went to his auntie’s funeral and he came home and he had his own room and we heard a lot of noise and we heard glass smashing.
And I ran down to his room and he’d taken some glass and slashed – I don’t even know what he was trying to cut now, but he cut something and then he wrote messages across his mirror in blood and ran out of the house. Now, this was an extreme advancement of anything we’d ever noticed. This was – we were in shock. So I had to chase him, and I had to to physically fight him to bring him back. And twice that happened in that night. And that’s when we knew we’ve got a problem.
How old was he then?
He would’ve been 17, maybe 18. But I think 17. He was doing VCE, which is the Year 12, yeah. And he couldn’t handle it. He just – even though he was a straight A student in earlier days, he’d entered a fantasy world, it seemed to me. Only in retrospect you start thinking back do you [realise] – he’s changed, and he was starting to live this – an act or got wrapped up in people like James Dean and any film star that he – He just sort of – they were real, they were life to him. Whatever roles they played, he believed them to be real. Well, he acted as if that’s the way he saw it. We just thought it was something just a little unusual, that’s all.
Adolescence
Most carers told us they noticed mental health problems beginning for the people being cared for during adolescence. Almost all the people we spoke to were mothers or fathers and many of them described their son or daughter before they experienced severe mental health problems, as being sociable, popular and intelligent children and adolescents.
When her late stepdaughter was a child and teenager,
Marta said there were no signs her stepdaughter would later be diagnosed with a ‘mental illness’.
> Click here to view the transcript
So she was a beautiful girl, about six years old then. She was a brilliant student, a lovely teenager, a lovely – never gave any trouble. She was happy with what she was doing, there wasn’t anything – I never saw any signs of depression or being unhappy, upset. She was a normal kid like any other kid. Fitted in well into my family, there were cousins; children on my sister’s side and they became her cousins immediately, you know. So she was – wherever Auntie went, [daughter] went too.
Because my sister filled up the car with all the kids in the street, so she didn’t miss out on anything. There [were] never any signs there. So a very good student, not the best. I’m not saying that she always – never gave any trouble there. There [were] absolutely no signs, or “I don’t want to do this”, or “I’m not happy”, never, never ever, until she was about 16, I would say .
So she had her first episode, I believe, when she was 19 years old in [metropolitan hospital] and we were living [interstate] at the time, so she never told us. I found out later on. We weren’t aware of it sort of, but soon after that she started a lot of trips to [Southeast Asia], still working there, where the drugs were quite easy to get, sort of thing. And then she started moving, like suddenly she left there, [coastal town], went to somewhere, [interstate], over there sort of thing and one day we got a phone call. A young man rang and said, “Well, I’ve got your daughter with me, I’m bringing her home”. She came home for what? She hasn’t been home for so long.
Apparently he met her somewhere [interstate] at a party there and he said, “If she would have stayed, she would have overdosed on something”. So that’s the first time we really found the drugs had a big thing to do with it.
Some recalled being unsure at the time whether changes in behaviour were a normal part of adolescence, or something else. Katherine’s son was ‘difficult to manage’ at times when he was a teenager and she thought it was just ‘the sort of stuff that you put up with in adolescence and try and manage’. When Bronwyn’s son started becoming ‘very angry’ she just thought it was teenage hormones.
Lisa recalled when her brother was aged 19 that he was not sleeping or eating very much and seemed not to be interested in anything. Lisa’s mother thought he was ‘just being a boy’, until he tried to self-harm.
> Click here to view the transcript
Yeah, so initially he became – so he wasn’t living with us at that point. He was 19, he was – I don’t know what he was doing. All kinds of colourful things. So trying to study, taking a lot of drugs, you know, things that you’d describe as risky behaviours, I guess. So eventually things came to a head in terms of his drug behaviours and he moved home and in with us in the country town that we were living in.
And we noticed that he became very withdrawn, quite agitated, didn’t really want to talk to either of us. He’d lock himself in the laundry and just sit in front of the tumble dryer, because it was warm. He wasn’t sleeping very much, wasn’t eating very much. But yeah, I guess the most striking thing was that normally he was quite bubbly and conversational, and then at this point he was just quite non-verbal and not particularly interested in anything.
And then we, I think we suspected that something was wrong, but I think my mum at that point didn’t. Thought it was either drug withdrawal, or just the fact that he was a young boy. Just being a boy. But things escalated and eventually he tried to commit suicide.
Signs of first becoming ‘unwell’
Although many carers commented that change in the person cared for could be gradual, there could also be very clear signs of something out of the ordinary that alerted the carer to the fact that help was needed.
Carers like Rosemary, Kate and Bronwyn, talked about the person cared for ‘experiencing paranoia’, Lisa remembered her brother became ‘withdrawn’ and Rich’s wife, Lisa’s brother and George’s son attempted to ‘self-harm’. When her brother was traveling in Europe Kate recalled phone calls he made: ‘…he just didn’t sound right… he just seemed to be living in a different world’. Dianne remembered that when her son began hearing voices he would ask her and other family members ‘What did you say?’ when they had not said anything.
Bronwyn’s son began to show ‘signs of paranoia’ and revealed that he was hearing voices. Around that time he told Bronwyn he had been sexually abused in the past.
> Click here to view the transcript
Okay. It was about three or four years ago that my son became – his personality changed and he became very difficult to live with. He became aggressive and verbally abusive whereas before he had a very gentle nature, very very quiet, gentle, caring young man. He became very anxious, he showered constantly, and I began receiving strange text messages. This went on for several months and I was really confused about what was going on. I tried to talk to him and he eventually gave me the description of an episode of sexual abuse.
He wasn’t sure when the attack occurred – he wasn’t sure about the whole time frame. Anyway, he was convinced it happened and he knew who’d made the attack. He convinced me that it occurred so we eventually went to the police station and reported it and were referred to a crimes unit in another town. We went to a lawyer but over time he found that he couldn’t pursue investigation of the offence because he emotionally wasn’t up to it, and his behaviour was still out of character but at the time I put it down to his really bad experience.
However as time went on over that year he revealed that he was hearing voices, that the TV was speaking to him and he’d been attacked many times by lots of different people. So then I began to doubt the first claim that he’d made to me. He used to put pieces of furniture against his bedroom door so that whoever was after him couldn’t get in. He’d sleep with knives, he insisted I have the locks on the house changed because people had come to visit him and they knew where the spare keys were.
A few other carers mentioned noticing a change in appearance or something very out of character of the person cared for when they first became ‘unwell’. Rowan said his wife started dressing ‘completely out of character’ and her ‘normal bubbliness had gone’. Bronwyn said her son, who had been ‘very gentle natured, [a] very, very quiet, gentle, caring young man’ became ‘aggressive and verbally abusive’.
Kate described her brother changing from being ‘very good looking’, to looking ‘frazzled’ and vacant.
> Click here to view the transcript
It was very sort of confronting, because like this little – this brother and, you know, for my parents, this son that they had was sort of like just not there anymore you know? He used to be, you know he’s very good looking. He used to be very popular, have lots of friends and girlfriends and, you know, he was school vice-captain and all these things and you know all-football vice-captain and house captain and all this stuff.
And you know, he’d done really well at life, well, we thought he had up until then. He seemed very happy and normal and all of a sudden he was just paranoid and he looked really scared, really sort of frazzled and just not there.
Can I just I ask what drugs? Was it marijuana?
Don’t know. I know that he was doing a lot of – he was doing Ecstasy over in the Greek Islands, but I think he was smoking some marijuana before he was going over there, not a lot but just sort of the odd dabble there. So yeah, we’re not sure exactly.
It was not always the carer who first noticed something was different with the person cared for. Some, like Bev, mentioned concerns being raised about their loved one at school or work. For others it was only when another family member mentioned changes they had noticed that carers realised something was wrong. Rowan’s daughter raised concerns that his wife was not ‘her usual self’, which prompted him to take her to the doctor.
Getting help when the person cared for first became ‘unwell’
Some carers talked about the difficulty of knowing what to do when the person cared for first began to experience mental health problems. Lisa lived in a small country town and said that when she and her mum became concerned about her brother, there were few services in her town, no one talked about mental health and she did not really know who to turn to for help (see Carers’ experiences of searching for information).
Quite a few carers described a difficult period as they became increasingly concerned about the changed character of the person cared for, while at the same time the person cared for, who was later diagnosed with ‘mental illness’, did not want to see a psychiatrist (see Carers’ experiences of person cared for receiving a psychiatric diagnosis ). Alex said it took his son two or three years before he recognised he needed help; long before that, Alex had noticed his son was increasingly ‘intense’ about having his say in how his family lived.
Drugs and alcohol
Quite a few carers talked about the person being cared for using drugs or drinking heavily before or around the time when they received a diagnosis of ‘mental illness’. Some carers, like Jeannie and Lisa, mentioned the person cared for experiencing ‘drug induced psychosis’. (For experiences of carers of family members diagnosed with ‘mental illness’ who were also experiencing substance use problems (often referred to as ‘dual diagnosis’), see Carers’ experiences of hospitals and mental health units .)
Alexia felt that more help was needed for her son to understand the impact of drugs and alcohol on mental health.
> Click here to view the transcript
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”.
Some carers attributed the perceived change in the personality of the person being cared for to social pressures to drink or use drugs, or to life choices on their loved one’s part. A few carers said they thought problems experienced with drugs or alcohol could obscure the fact that the person cared for needed mental health practitioners’ help.
When her son was experiencing problems with drinking and using drugs
Jeannie thought he was depressed and needed help. But other family members didn’t agree.
> Click here to view the transcript
Well, I first noticed that things were not right with [son], probably, close to 10 years ago when he first moved to [city]. Things had been a little difficult at home for family reasons, with a marriage breakdown. However, he was only 17 or 18 and I just thought, ‘Oh, look, you know he’s going through the teenage rebellion stuff, it’ll settle down’. I knew that there had been some dabbling in drugs, but I think that was all it was, that he was drinking too much. But, again, I just thought, you know, ‘Things will settle down’.
It was clear to me that he was depressed and anxious. However, again, I suppose I put a lot of that down to maybe too much alcohol, you know, fiddling around with drugs and that he would just settle down and get his act together. But it didn’t happen. I did suggest to him a number of times – many, many times in actual fact over the years – that he should seek some counselling because I believed that he was suffering from depression and anxiety.
He wouldn’t hear of that. And when he eventually did come around to admitting that, yes, it was quite possible that he was depressed, he spoke to his father about it, who told him it was all in his head. His siblings, particularly his eldest sibling, just poo-pooed the whole thing. I think it was seen as me trying to make excuses for his bad behaviour. I don’t believe I’ve ever done that. I don’t condone his behaviour, however, I think – and have for a long time – believed that he needs help because he is struggling with mental illness.
Traumatic life events
Some carers described traumatic life events that occurred just before they noticed that the person being cared for was having problems. These events included divorce in the family, family violence, moving to another country, serious illness of the carer or the death of a parent or close relative.
James thought his son may have had a ‘genetic predisposition’ to schizophrenia. He believed the death of his wife, who was ‘very close’ to his son, could have ‘triggered’ his son’s first episode.
> Click here to view the transcript
Yes, very close to my wife and that’s probably, as one of the psychiatrists or carers explained that people [diagnosed with] mental – schizophrenia and other mental illnesses – some people might have a genetic predisposition to an illness. But unless there’s something that triggers that -and that’s what triggers it into a mental illness. And it was, they thought that it was probably my wife’s death that triggered the mental illness with my son, you know.
And it was – because it was the first time I noticed any problem was that incident on the Christmas of the year my wife died. We went out at Christmas time and he wouldn’t get out of the car. So that’s indicative that something’s wrong. But you just might have thought, ‘Oh well, they’re people he doesn’t meet all the time and they’re a bit strange. So you don’t put two and two together.
