Son (22) with schizophrenia

[Grasshopper3]

Living with someone who suffers from schizophrenia is very difficult. Even medicated it seems he lives in a different world and stares a lot whilst smoking cigarettes like a steam train.
Sleeps during the day, spooks around at night.
Any advice about healthy diet, less coffee and smokes, is ignored.
He will never live a productive life.
We've lost family members close to us on the way because of his behaviour and them not understanding mental illness.
Ofcourse I worry about our future.
I need to be single as no other man can live with us.
I need to work full time to provide a roof over our heads and pay the bills. Without me, he'll be homeless, jobless and suicidal as his paranoia would kick in, specially when he thinks the meds are only given to him as he is a guinea pig and 'they' are trying to change his DNA...
I've always wanted children but no one never told me how tough it would be if a mental illness strikes the 'Brady bunch' family image with a thunderbolt.
A medal to anyone who cares for someone suffering mental illness.
They need all the help and support they can get. They deserve better too. Mental illness you don't see from the outside, my son looks like a healthy good looking young man but has no future. Maybe with support and someone pushing him out of his shell but some have tried and given up.
I have given up a marriage and another 7 years old relationship and noe bought a small unit to care for my son, indefinite. We have no other family here as Migrated here in 1987.

My love for my son is very deep and I am so proud of him he went to hospital last year and still takes his depot shot every month. However, I feel anxious and worry all the time. He has applied for DSP (disability pension) but he tells me if he gets rejected, and 'they' want him to work, he will stop the depot needle. It takes his motivation and energy away, He knows he can't work 8-5pm, neither with or without meds.
My good sense of humour is slowly fading but where there's life, there's hope, right?
Thanks for reading my story.

[patientpatient]

Hi @Grasshopper3,

Thanks for writing your story. My son's a few years older than yours. Just him and me at home. He's on DSP. 'They' did a job capacity assessment and decided he's fit for limited-hours, part-time work so he's required to attend DES (Disability Employment Service) interviews every two weeks. He did work for a while, then became very unwell and we had to get medical certificates to exempt him from attending interviews. I understand what you're saying about worry and anxiety and it's difficult to see how to manage in future, especially long term because he's very poor at practical things. I also understand how a sole carer's life can become confined by the situation. Holding on to the sense of humour is essential.

[Former-Member]

Hello @Grasshopper3

A very warm welcome to the forums, thank you for sharing your story and experiences caring for your son, it sounds like you have made some really big changes and been so very supportive of your sons mental health concerns, he is very lucky to have you looking out for him.

You mentioned you have found it extremely hard to get him help other than that shot he gets and I am wondering what kind of support you are getting to handle all of this, it sounds very difficult looking after him all on your own without family around too.

It would be helpful if you could contact these Mental Health Carer organisations to get linked in with support for yourself, it might be hard for you to reach out for that help as you are used to being the carer of someone else, but it will not only help you but also him. They provide counselling, support groups, respite and programs which might allow you some time away from caring and take some of the pressure of yourself so can you still have a sense of humour

Carers Australia

www.carersaustralia.com.au

Carers Australia is the national peak body representing Australia’s carers, advocating on behalf of Australia’s carers to influence policies and services at a national level. It works collaboratively with partners and its member organisations, the network of state and territory Carers Associations, to deliver a range of essential national carer services.

Mental Health Carers Australia

1300 554 660

http://www.mentalhealthcarersaustralia.org.au/

Look forward to hearing more and it is really good you are reaching out to the forums for extra help,

Lunar

[CherryBomb]

Hi @Grasshopper3 and @patientpatient,

When I read over your posts, my first thoughts were that you are really dedicated parents that have sacrificed so much. Please remember to look after you too. Burning out is neither good for you or your children. Humour is a great way of coping, but when you feel that slipping away, it could be sign that you're starting to reach your limit. 

You might want to connect with some other people on here who share similar stories. @Barbara wrote here about caring for her 24 year old son who has schizophrenia. @concerned_mum has written here about how she suspects her son might have bipolar. And lastly, @Janna has written here about the difficulties she has with caring for her young son. They may have somehting to add to this conversation, but also feel free to write in those thread.

@patientpatient and @Grasshopper3, I'm wondering how you've made it this far? What has kept you going? 

[patientpatient]

Hi @CherryBomb, not ignoring your question just unsure what to say on a forum. There don't seem to be any other workable options or choices. My son (who used to be independent) now can't seem to manage by himself so someone needs to be around. I think he also needs company, even though interaction is often minimal. There are some very basic issues (taps left on, fridge left open, lost house key and locked out, sellers at the front door, forgetting to take meds, taking meds then forgetting and taking them again) that require someone else in the house. I understand what you're saying about burnout and have been close a couple of times. I have two strategies. Every month (or two!), I have time out and other family members have to find time to help out. Sometimes that's just one day away but that's all we can manage and it seems to be enough. Second strategy is to see a psychologist who has experience with Sz. It has been very helpful to have in-person discussion with someone who knows about the illness and has helped others deal with it.

[Grasshopper3]

Hi @patientpatient , @CherrieBomb,<br>Appreciate you replying to me very much.<br>I am only new here and reading your posts etc makes me feel I'm not alone.<br>I hope one day I can give advice too. For now it's all about me sorry 😉<br>I work full time, son sleeps most of it. <br>You would think I have plenty of distraction from my caring role being at work but I am worrying about him and rest of my family all the time.<br>I have made an appointment with a psych as I want to be able to cope with him when he comes of his meds.<br>This needle he is on is a blessing, he can't forget. But it takes his motivation away. Instead of being overactive (ADHD) he is now the opposite. He says he feels like a zombie.<br>We are in process transferring his mental health care plan to the area we live now as we recently moved in together again. <br>This means new case manager, new nurse, and any change in a routine could set of his paranoia. Consequently he could stop attending the clinic for his shot. <br>I am taking him overseas to my patents in few months, I'm hoping that is not upsetting him either. He won't be able to smoke in plane but he refuses nicotine patches. <br>Then I have to be on guard as some of my family members smoke weed. If he gets his hands on that, we be straight into hospital.<br>I better check the travel insurance in case they won't cover as it's a predetermined illness? <br>I was in a relationship with a wonderful man, <br> (7 yrs) but he wants to retire in peace and I moved out and bought this pretty little villa near the hills. Very pretty but can't really enjoy it as always anxious yep. I have put about 10 KGS on as I overeat a way to cope with stress.<br>I have also attended couple of group meetings with other carers (Helpingminds). <br>Other then that, I wish there was a place for my son to go to in the area where he could 'fit in, and help out so he has something to get out of bed for. He doesn't want to get in touch with a volunteering organisation here though. <br>What keeps me going? My son, who I dearly love, my daughter who has just been through this terrible cyclone Debbie in QLD and my family even though so very very far away.<br>I have some gorgeous friends as well but we're all working so not much time to catch up.<br>This weekend I'll take my son camping too, to do something different and to get him out of the house <br>Thanks for reading my long post<br>It's feels good to write it down. <br>Take care of you, I am trying it too<br>🌷

[Grasshopper3]

Whoops, @CherryBomb 🙂

[CherryBomb]

@patientpatient and @Grasshopper3

You are both doing as much as you possibly can within a trying situation, and I can what you mean about not having many more available options. 

It's good to hear though that you are managing to take some time out for self-care - even if it is once a month, or just five minutes in the day to have a cuppa in the sun. 

@patientpatient, you are right, sometimes just getting your thoughts out, and connecting with other people can help get stuff of your chest, and less alone. 

If you have some spare moments in your day and just want spend time with others, drop by the hot chocolate thread. It's where a few of our regulars hang out. Like you, they are long term carers of someone with a mental illness. 

[Grasshopper3]

Uhhh, what is a Kudo and how does that work please 🌷

[ivana]

Hi Matosh,

How are things today for you and your son?

I just wanted to say that I could really feel the love and dedication for your son in your post and you sound like a wonderful mum.💐