Lived Experience Forum

[Cazzza]

Wanting to know if anyone out there is a cater for anyone with Negative or positive Schizophrenia.

[patientpatient]

Hi @Cazzza, my son has Schizophrenia and we've had to try to manage positive and negative symptoms. I read your other post and your list "blank expression, lack of care of himself, lack of sleep, (awake all night then sleeps part of the day). Lack of interaction with people, limited conversations..." sums up the negative symptoms really well. As @Former-Member pointed out, there are a number of carers here who have experience with Schizophrenia.

[Cazzza]

Hello, It’s extremely frustrating to know how to know how to get my son out & to get him interested in doing things again. He loves the beach & surfing but he doesn’t have a car license to drive. Plus he isn’t well enough to drive. I work and can’t get him out enough. Then he sleeps most of the day as he was awake all night. Please give me some advise. My sons Pchtrist has spoken to him about getting a support worker to take him out. He feels overly anxious about that idea and said no. Then the Pchtrist explained that it would be extremely hard to get a support worker due to government funding. My sons Pchtrist is private and is very good and my son likes her.

[Cazzza]

I am 56 and I worry about my sons future when I am not here. Our family live around Australia and even though we are a living family we don’t see them all. My other son is busy with his family.

[patientpatient]

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@Cazzzawrote:
I am 56 and I worry about my sons future when I am not here. Our family live around Australia and even though we are a living family we don’t see them all. My other son is busy with his family.

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I'm a bit older than that and have similar concerns. Family situation is also similar.  In our experience, the negative symptoms have moderated over the years but occasional relapses negate the gains. My son's on DSP and has been required to work. One job ended very badly when he had a relapse and was very unwell for months afterwards. The most recent job also didn't last, due to stress and this time we heeded the warning signs. Psychologist support has been very helpful and he visits 10 times/year under MHCP (mental health care plan). My son also doesn't drive (is fearful of driving) and is very wary of people when out. He's on daily medications: antipsychotics and anti-depressant (which is used 'off label' for OCD). Doses were once very high but have been gradually reduced. 

[Former-Member]

Oh this must be so hard as a parent. I watch my middle age brothera struggling with this. I wish someone would sue Centrelink for the damage inflicted on the mentally ill by forcing them into stressful workplaces. This angers me so much. Where's all the 'dogooders' on this issue???

Cazza, see what you think GROW has to offer. Might help...

https://www.grow.org.au/

[Cazzza]

Thanks lapsed.

[Cazzza]

I totally understand your concerns. My son isn’t under any health plan. His Pchtrist would like him to have a support worker to take him out. But he doesn’t want that as he is fearful and also feels humiliated that a stranger has to take him out. I try to encourage him to agree, but his anxiety won’t allow him to make that step.

[Cazzza]

I don’t let people know he has Negative Schizophrenia due to the stigma it has. That in it’s self is just unfair.

[Violacorso]

I felt the same way when I was first diagnosed with Schizoaffective disorder. I felt I needed to keep quite about it. But then I realised by keeping quiet myself, i myself am contributing to the stigma... Just know that with mental diagnosis or not, people will judge you no matter what your situation is. I hope your son can eventually rise above the negativity, I know he will. He needs to come to terms with the Schizophrenia in his own time in my opinion. When he is ready hell reach out and adjust. Just stay by his side like you are doing as a loving mother. He's not alone! I have great days, even weeks at a time, but I fluctuate and have my bad weeks. And that's what I realise, they are just bad weeks, not a bad life! Good luck X