Carers’ experiences of person cared for first becoming unwell

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.

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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.

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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’.

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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.

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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.

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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.

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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.

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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.

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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.

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