Brother’s illness, sister’s pain
As many as 1200 Taranaki people live with schizophrenia. For some the condition upends their life and the lives of those who love them. Helen Harvey reports.
Deborah has been through hell the last couple of years. It wasn’t because she had custody of her 6-year-old granddaughter. Or because she was fighting lung cancer. And it had nothing to do with Covid-19.
Deborah was put through the wringer because her brother lives with schizophrenia. And constantly fighting the system to get him help and keep him safe pushed her to the edge of despair.
The Ministry of Health describes schizophrenia as a lifelong disorder characterised by a reinterpretation of, or a loss of, reality.
These disorientating and frightening episodes are referred to as psychotic episodes or psychosis.
The individual may experience hallucinations or delusions that they believe are real, and may behave and communicate in a way which does not make sense to others. Not all those with schizophrenia develop paranoia, but it is one of the common symptoms.
In Taranaki, population 122,000, there are around 1200 people living with schizophrenia.
It can be treated, but isn’t curable. And while some people can live entirely normal lives with the condition and others can recover and never have it return, for some it is frightening and debilitating and entirely upends their life.
Deborah says their family and friends can also find their lives drastically changed as they realise without their help those they love would be left floundering in a health system with few enough resources to cope.
For years after he was first diagnosed Deborah’s brother, Jack, who the Taranaki Daily News has chosen not to name, was receiving a monthly injection of antipsychotic medicine. He had no choice in the matter. Under the Mental Health Act he was required to be medicated.
Looking back it was heaven, said Deborah, who has asked her last name not be revealed to protect her brother’s identity.
‘‘You didn’t worry, apart from him wanting money all the time. He was fine. He kept himself clean. He lived with people. It was just so stable.’’
But six years ago he was taken off the injection. And that’s when the problems started, Deborah said.
She still had no idea why it was stopped, she said. Jack hadn’t told her why, or doesn’t understand completely himself.
After coming off the injection Deborah said Jack would smash up the house. He smashed every door, every window.
He would stand out on the street and kick people who weren’t there off the section. He would wake up in the middle of the night and kick non-existent people out of the house.
He sold the stove. He sold the television, anything that wasn’t nailed down. At one point Deborah found out he hadn’t had the power on for six months.
She tried to get him help, but it was like banging her head against a wall. She couldn’t get anywhere. She got angry, frustrated. She cried.
‘‘I blow a boiler. Then I can’t function. You go to work, and you’re angry and upset at what’s going on. I’m like this all the time.’’
In June 2021 it got worse. Jack’s house burnt down. He didn’t cause the fire, but he was in the house at the time.
Then in September, when Jack went to court for assault a ‘‘lovely probation officer forced a psychiatric assessment on him’’.
In the meantime he was in and out of emergency housing, because Deborah was still grappling with insurance before she could start the process of getting the house rebuilt.
Jack got kicked out of most of the motels that were used for emergency housing in Central and South Taranaki, but another ‘‘lovely’’ woman from Kainga Ora kept him from being homeless, Deborah says.
On a positive note the cancer in her lung was cut out in January, 2022, and she spent the next few months recovering. While she was getting her strength back, the psychiatric assessment was finished with the forensic psychologist saying Jack was worse than when he was first diagnosed, Deborah said.
She thought it was a breakthrough, and his treatments would resume.
But that wasn’t enough. It took Jack jumping in front of cars going 100kph along State Highway 3 for him to be taken to Taranaki’s mental health unit, she says.
‘‘It all fell into place, because I still don’t think he would have got into that unit unless he had jumped in front of those cars. That’s my feeling, because I had tried for years. I had rung the crisis team. You know, the mental health nurse, everyone.’’
And if Jack hadn’t got some help at that point, Deborah said, she would have broken down. She was falling to bits. Trying to organise getting a new house built was ongoing – it was still not finished – and she was worried he would end up jail.
So Deborah had a bit of respite knowing he was OK. But it didn’t last long. Within three weeks Jack was sent home from the mental health unit.
And they still wouldn’t put him on the injection.
They don’t listen to her, she says, they ‘‘preach’’ the Privacy
Act.
‘‘The only way they can apparently talk to me as if he’s actually sectioned under the Mental Health Act, because then I’m his only next of kin. But as he’s not they tell me as little as possible.’’
Under Section 7A of the Mental Health Act, there is a mandatory requirement for practitioners to consult with the family or whānau of a patient being treated under a compulsory assessment and treatment process, unless doing so would compromise their care.
There is no such provision in the
Mental Health Act in relation to voluntary patients, meaning families can often be shut off from information they believe they have a right to know.
She’s been told her brother doesn’t want her to know what’s going on. But Deborah says that’s because of his paranoia and she’s his only relative.
It’s more than frustrating and Deborah’s anger and frustration sometimes comes out during her interactions with the health professionals she deals with.
‘‘They must think I’m a right awful person. But, I went through all sorts of organisations and emailed them when everything was first happening. And nobody really came back to me or did anything.’’
And that’s when she reaches the end of her tether. She has nowhere to turn and feels alone.
‘‘Whenever the phone rings and someone tries to tell me something about Jack, I’m like, oh God, here we go again.’’
* At the moment Jack is staying on his medication and doing OK.