Friends, Family & Carers Forum

[Angie6]

Hi,

I'm new to the forum.  I'm hoping to connect with other carers who might be in a similar situation and maybe have messages of hope or have had a positive outcome for their family member in a similar situation.  My son has been unwell for 9 years.  He had a psychotic episode followed by seeing a GP who had been recommended and referred him on to psychiatrist.  After a few terrible months it was suggested that we back off a bit and let things settle down.  Since that time he has made small steps over a long period of time.  He helps round the house, goes for a daily evening walk, enjoys cooking.  He won't talk to us about whats going on for him.  He refuses to see any professionals and he appears to have some form of schizophrenia.  This is not diagnosed.  He had a day in hospital a couple of years ago and was given a drug which really relaxed him and he talked to us about everything.  He refused to stay and get further help.  As soon as he got home he reverted to flat mood and told us not to believe anything he said in the hospital as it was the drugs talking not him.  He talked at that time about having hallucinations and he appears to hear voices.  It's all guesswork as he doesn't talk to about these issues. He's a thoughtful, sensitive, kind person and can be very moody and withdrawn.  He had a lovely group of friends who tried in the early days but understandably have given up after many rejections.  He has two brothers, both younger.  His youngest brother is still angry with him and they have a poor relationship.  No arguing but live separate lives in the same house with us here.  His other brother is good with him but he has his own life to live now and he makes visits home occasionally.  I want to help him but don't know if it's enough. I am calm and kind and offer support but feel I am letting him down as we are the only people who see him.  He strongly resists help.  His Dad is good with him but frustrated.  He is 30 now so we need to think about the future and make plans, he needs some independence, we won't always be here.  Sorry if that was a bit long winded.  Any thoughts or suggestions would be greatly appreciated.

[RiverSeal]

Hey @Angie6 

Welcome to the Forums and thank you for posting about your experiences with your son.

It sounds like you are going through a tough time with your son and thinking about the future and his well-being. You are demonstrating that you are a loving and caring parent by reaching out here on the Forums and looking for similar experiences to learn from. I do encourage you to continue to use the Forums and they are a good source of information about what others go through and how they cope and live life.

I wanted to share some of my story with you to provide some hope that you are seeking on the Forums. I have a diagnosis of schizophrenia which I received in my 40's after 9 years of psychosis and being in and out of hospital on a psych ward. I engaged with my treating team and focused on recovery in 2016 and with much support I have been able to regain my life and find meaning in supporting others. I started studying and created a pathway to return to work after my life declined for 15 years and became unmanageable. I accepted that I needed help if I was to have any sort of life beyond living on the Disability Support Pension and being totally isolated from the community. I'm now enrolling in my 7th year at TAFE and work part-time supporting others with complex mental health issues. 

SANE has the Guided Service available to most of the country depending on the PHN you live in. You and/or your son can have the support of a Peer Support Worker or Counsellor and learn more about how to cope and what options are available for you both. I encourage you to continue to support your son as he holds his own potential for recovery. Your son is the only person ultimately who can walk that path if he chooses to make changes to his life and work with people who can support him to recover and find ways to cope.

There is an amazing YouTube channel Living Well with Schizophrenia where you can learn about the symptoms even if your son doesn't have a diagnosis at this stage. Learning to treat the symptoms and not focusing on a diagnosis can be helpful as it can be less stigmatizing which is often the root of people denying and not accepting what they are going through. Also learning about the symptoms can develop better coping skills as more understanding is gained. Please see the SANE Fact Sheet for schizophrenia here: Schizophrenia (sane.org). The internet holds some invaluable information to learn about what your son is going through for both you and him.

Please ask me any questions you would like and I will be happy to support you here on the Forums and the community may be able to provide some similar stories from families too.

Take care

RiverSeal 

[tyme]

Hey @Angie6 ,

I just read your story and wanted to know how you are going with your son?

[Angie6]

Thank you, I am used to the situation now so I am coping well.  I am just keen for my son to engage with support outside the family, for his own sake and for the rest of the family.  I appreciate that is his decision and not ours. It's frustrating.

[tyme]

I hope he comes to the point where he says, "Maybe I do need help. I want something different". 

Reaching out can be a scary thing. Some people think it's a sign of weakness and that's why they need to reach out. @Angie6 .

I hope you look after yourself in the meantime. 

[Angie6]

Thank you 😊