My son (24) has schizophrenia

[Barbara]

This is my first post but i am desperate. My son J. (24) has been very unwell for years and diagnosed with all sorts of disorders (C-PTSC, OCD, severe Anxiety, eating disorder, etc) but it he has completely deteriorated last year and recently been diagnosed with schizophrenia. he has become very violent, abusive, obsessive compulsive, messy and unhygenic, etc the list could go on for ever... I have to live in fear every day waiting for the next episode to happen (usually on a daily basis). it is not safe for my other 2 children to live with us so we have to keep them apart which is even more heart breaking and very difficult to manage (my daughter is meant to be doing her HSC this year, is struggling hugely to focus and sleep, she also suffers from depression).

J. goes completely 'nuts' when hearing car noise, aeroplanes, machine noise as sensory overload seems to be the prevelant symtom and noise triggers most episodes. living in the city under the flight path is horrendous for him so we have to move to the country and leave the other kids behind. J. did so well at school and Uni, all his potential and future is lost and often i dont see any hope. The pain and exhaustion i am feeling is beyond words !!!! he refuses medical intervention (and meds) as previous doctor visits and hospital stays were more traumatic than were of any help. i am in so much despair seeing him deteriorate and losing his sanity on a regular basis (he talks and walks like a complete 'drunk', behaves totally irrational and violent) he has terrible sleep and constantly sais he feels like he is dying. the cries a lot out of despair and pain, he does not enjoy anything, seems like a 'vegetable', has no friends.

J. has too much anxiety to see another doctor, it is a vicious circle we dont seem to come out of. i had to call an ambulance because he was getting so bad. When they came he suddenly pretended to be 'normal' and they did not take him. he sais if he has to go to a public hospital it would be the end of him due to more trauma (he had a very traumatic childhood therefore i can not bring myself to commiting him to a public hospital involutarily as it would add to all his traumas so we are stuck) i am waiting for him to come to the point that he voluntarily goes to a private clinic but he is adoment he will not do that.

often i just want to curl up in bed and never wake up. the other 2 kids are the only reason i am still here. it is too much to cope with and all my friends have deserted me. i am too exhausted to make new friends or do anything for myself. i just try and get through each day but so often feel like giving up. i am very scared of the future.

my heart goes out to everyone who cares for a mentally ill person, especially to mothers because i blieve they suffer the most watching their loved one! there is so little help out there and i wish we could all get together and talk, cry, exchange experiences, laugh a little. but i feel we are all very lonely, battling by ourselves, feeling helpless against something we can't control. it is heart breaking !! we just need a glimpse of hope and encouragement to get strenght to keep going... 

[CherryBomb]

Hi @Barbara

You sound exhausted. I wish there was something I could do to give you a break. It seems like your life has been dedicated to caring for your son, and there has been very little chance to care for yourself.

Unfortunately, it's not uncommon for parents to feel worn out, and helpless. Caring for someone who is suffering from a MI is taxing.

There are quite a few parents on these Forums who are caring for their adult children who I think are going through similar experiences.

@Jaye-Kay posted here just recently about how she is feeling exhausted caring for her daughter. @mia1 posted here about caring for her daughter who also has eating disorders and has been sucidal but is relunctant or refuses to get help. Also, @Concerned is caring for her daughter for the past 12 years. She writes here about how she is extremely concerned, and like you, worries about sending her daughter the PH system. And @MummyMountain writes here about caring for her daughter who she is struggling to care for as she has angry outburts and speaks of suicide. I wonder if any of these members could share some of their thoughts and experiences here? Alternatively, you can also write on their threads.

@Barbara you mentioned that you've thought about ending your life. It sounds like things have gotten to crisis point, and that life is hard. Please remember, that if you're having these thoughts that there are people you can talk to. Please don't hesitate to contact crisis support if you find that things are getting too much.

Lifeline: 13 11 14 or Crisis Chat

Suicide call back service: 1300 659 467 or online counselling

If in immediate danger: 000

CherryBomb

[mia1]

totally understand Barbara, it seems so hopeless. it would be great to be able to talk to people that know the burden you are carrying as many "normal "people just don't understand.and really you don't want to talk to them about it anyway.

[Zam]

Hi Barbara, very sorry to hear about your son and everything that has been happening.

i am not a carer, thought I should point that out. I myself am diagnosed with schizophrenia. Was diagnosed about 5 years ago now I think and have been in hospital numerous times. I'm 29 now

I mention that because you mentioned about not taking your son into a hospital. I was forced into hospital a few times and as much as I hated it, I can honestly say it helped a lot.. If I was never put in hospital there is no way at all I would have taken medication and eventually get a lot better.

i have no idea what it is like for someone caring for another with schizophrenia but I can tell you all about what it is like to suffer with it.. Going to hospital is always bad, especially when forced there but in the end it can make a lot of difference in getting better..

I hope things get much better either way for you and all of your family

[CherryBomb]

Great insights @Zam

@Zam can I ask if took you some time get beyond hating and seeing that it was helpful?

I mean, if you were to give some advice to carers about how they can talk to their loved one about going to hospital, what would you suggest based on your own experience?

[Zam]

@CherryBomb it took a pretty long time to get over the anger of being forced into the hospital especially at the time I thought there was nothing wrong with me. As the meds started eventually working while in hospital I started to slowly see things different and once I eventually got out and things started getting better, it was at that time I could see that I needed to be in there.. 

Of course I started to feel like I didn't need medication a few months later and went off them again and got put right back in and that went on for a bit.. But I have not gone off meds for a long time now and things are going good..

for anyone putting someone in hospital I would just be brutally honest about it. No matter what if you force someone into a hospital, they will be angry.. But I think once they start feeling better they could realise they needed it

[astrengthinever]

@Barbara  

while every situation is different I can not agree with @Zane more. A compulsory admission to hospital may very well be the best thing you can do for your son right now and once on medication and getting the best treatment he can get he will see that this was the best choice you made FOR him. 

You sound both physically and mentally exhausted and you need to look after you. 

My daughter' s mental health issues are different to your sons and we had had numerous hospital admissions which in her case were good to contain her but not enough to help her long term. When she was 16 and was at her worst and I was close to a complete breakdown, I was fortunate to have relatives interstate who were prepared to take her for nearly 6 months. This was the hardest but the best decision  I ever made. 

It was a major wake up call for her, she was under a whole new medical team and had a totally different carer. She'd had no say in the decision, I literally packed her bags, collected her from hospital and drove straight to the airport. She was furious with me. (On a funny side I breathed a sigh of relief once we'd gone through the metal detector knowing she had nothing on her that she could harm herself with) 

I continued to justify to her why I'd made this choice for her. Telling her that that she needed to take the help she was been offered and that I was taking the time to look after me so I could be an effective parent to better care for her. In This time I slept, and sought support groups and did courses in gaining a better understanding of how my daughter sees and experiences the world, I also learnt the art of mindlefulness (which is nothing like the  sitting in the lotus position chanting um that I thought it was) 

This education and perspective has helped me tremendously in understanding and in turn managing my daughter. This has resulted in a far more harmonious household and has also helped me realize the importance of looking after myself. Even now I can see that when I start to become sleep deprived it amplifies my concern for her which in turn only causes added conflict to our relationship. 

I share this with you because I would like to think that if you make that hard decision to hospitalize your son he will get the help he desperately needs, and hopefully you can take the time to gain perspective and take that time for yourself too. And in time it will be valuable for both you in long term management. 

Life is certainly still no bed of roses but I can assure you it is easier. Even after her recent relapse with a major suicide attempt I  am proud to say that I managed the entire crisis so much better than I would have a few years ago I I really to credit that to all the work I gave done in educating and looking after me.

remember......You can only change You. No one can change Them except Them. 

[Barbara]

Dear Zam, thank you so much for sharing your experience and story with us - it is always very helpful for others to hear your point of view and how you feel about things. i feel so much sadness to know there are so many young people out there struggling with mental health and there does not seem to be much support or help. ii have been going round in circles trying to get help unsucessfully. though i still feel reluctant to force my son into hospitalazation but maybe there will soon be no other choice when he gets out of control, i am still i putting up with it over and over again, hoping it will get better, giving him time.

I have watched many psychiatrists and other experts in documentaries who oppose medication, saying is not the answer and there are better ways to help. There are some good programs out there but unfortunately not in Australia? Why are hospitals such stark places with heartless doctors and feel like prisons? these should be in a nice healing environment with compassionate people and green space in nature. you are our most vulnerable people of society and should be looked after with the most care and love. but it seems more the opposite. i wish we could all get together and exchange experiences and friendships. 

thank you again Zam for your post, it is very much appreciated!! 

[Zam]

You are most welcome @Barbara. I truly hope things get much better for yourself, your son and other children.. 

Like I previously wrote, I have no idea what it would be Like caring for someone with schizophrenia. But I know what it is like suffering with it and I know it is family members who normally get treated the worst but it makes a huge difference to have such supporting parents.. You sound like a fantastic mother and your son is lucky to have you. 

[Pamina]

very interesting your experience and opinion @Zam! my question is how did they get you to the hospital? if you refused any treatement how could they force you?