Friends, Family & Carers Forum

[Grasshopper3]

@Former-Member. Hi again... you know, you are not super woman. Of course a text like that upsets you. It's pure mental abuse. And I think your reaction sending him a text back signing off love mum, is all you can do.
If my son asks me to buy or do something that I can't understand I tell a little white lie and say I'll get it or I will look into it, thanks for your help, better be safe etc. In his world he is trying to help you...
I wonder where your son is staying? I mean would he sleep in his car or does he really have some one helping him.
Anyway I hope you don't take his text seriously as he is trying to make your world safe, his way of helping you.
My son is on about we're all living in a fictional world and news is all puppetry.
He is following a lot of radio broadcasts on YouTube: 'secret energy. Com and he is very close to cracking the code of nature and how the energy works and he said something about Alchemist.
Maybe that's where your son gets those ideas from too.
There are many websites and YouTube and podcasts for them to watch. I always think those websites are cults and our boys are just getting brainwashed and thereds nothing we can do.
Hope you're OK
🌷

[Former-Member]

HI @Former-Member

Am replying to you in this thread as the other forum members here have sons with Sz and is perhaps a spot where you might feel at home with carers having similar feelings to you.  

I think in many ways we all feel at the bottom of the heap, as carers we are so used to putting others needs well before our own. I know it took me a long time to realise that I needed to look after myself and of course there were times of crisis when my needs did need to take a back seat. 

For me, education has been the key, both to understanding the conditions that have been put forward as a potential diagnosis for my husband as well as how best I can manage our relationship in spite of his mental health. Self care features in that mix as the usual relationship rules need to be adjusted as what are deemed normal emotions are out the window; "normal" parent-son relationships can be similarly compromised.

Learning how not to engage with a patients delusions is one of the things that might have been touched on in the "loss of insight" talks by Xavier Amador that are posted on the "whats new" thread 

The weight we carry is heavy at times and can seem very lonely, but you are not alone. We would not be here if we ourselves did not at some stage need mutual support and understanding.  

Take care my friend, 

Darcy

[Former-Member]

hello @Former-Member

Thank you for redirecting me back to a safe spot

I was feeling quite lost and alone

I rang helpline and he was helpful, he said he had an understanding of paranoid schizophrenia

I explained that all of my supports are not available this week and the calls and texts last night

would you believe. after i hung up and resigned myself to living in the now my son rang back

he is trying to get something on line and was blocked so i clearly told him that i would not use my card details

also that i was not happy with the way he spoke to me yesterday

he threw stuff back at me with the icy tone and i steered away only letting him know not to use the language

it must be all consuming - constantly feeling that people are after him

[Grasshopper3]

@Former-Member
@Suki1

how to react to these odd behaviours and copping abuse from the MI affected loved ones?
My son blamed me yesterday I am stealing from the bank... and I am a mass murderer...
I work at a government department and he says they brainwashed me, I am a sheep. I didn't sign a birth certificate so lose your name, or commit fraud.
I knew his MI was talking and he is due for his needle next week but... I worked 9 hours, felt tired and had a headache so I looked at him and said how dare you say all these hurtful things, if I didn't work, we would have no roof over our heads and no food on the table? How dare you say I'm a fraude and a mass murderer.... He said but mum it is, you are making money for the government and they are buying weapons and they shoot innocent people in Syria!
I looked at him and said, OK so what shall we have for dinner?
So sad...if I don't live with him I'm worried sick like @Former-Member, not knowing where he is, and him being so paranoid.
Now he has moved in with me, I feel so lucky, he even rang his new psych. back reversed charges yesterday as he is refusing to put credit on his phone.
I apologied for getting cranky with him before and told him I'm proud of him.
I am dreading our 3 week overseas trip.
How will he cope with all these changed, travelling, not sleeping in his own stressfree environment, and how will he cope with the jet lag? I must stop over thinking and stressing out, but easier said then done.
I don't want to lose him again
I'm off to the hairdresser, getting rid of some greys.
My son wants to check her out, and told me to wake him up @ 8am.... He normally doesn't get out until 2pm ish.
I told him when we come back from holidays I like him to try something like volunteering so he has something to do.
He said but mum, I'm studying, at night!
I had a look at the YouTube videos he's watching and this guy (James Evans Bomar III) who he listens to gives me a headache too lol
Anyway gotta go.
Look after yourselves
🌷

[Former-Member]

hello @Grasshopper3 @Suki1

Yes I write on here one day that i have told him that i wont take the abuse that he has hung up on me etc

then lo and behold he is ringing me back with his urgent voice,"now, right now!" icy tone.

sometimes he listens to my setting the boundaries, other times he doesnt

I have noticed a difference in our calls now though bearing in mind also he allows me to have his mobile no now, huge

there are gaps in between the paranoia, moments of silence where I feel he is needing me as his mum. I try to talk about his new life what he has achieved in living on his own. I too have told him how proud I am of him. I told him yesterday not to spend so much time thinking about all of these bad people, government CIA etc. I said that he is aware, he has put things in place therefore he is safe. he is doing the right thing in looking after himself. this was accepted. there is never a thank you just a silence where he is digesting the information and i imagine the delusion is distracted momentarily. so i do experience windows of my real son at times now.

i cannot begin to tell you how this feels. Others would think that I have lost the plot.

I know that i have to accept every little precious moment and value that. a reminder over and over again my son is still there.

I think that you handled your situation well Matosh. His response to you showed you that he listened.

I smiled when i saw the comment about checking out the hairdresser.

I was told about coconut water yesterday and of course the one that i am drinking is rubbish. I told him that it said no concentrate. yes yes he said but it is only 99.9% and has preservative (0.01%) plus he did point out that it was made by coca cola which i had not noticed. reading the finer than fine print.

these are signs that we are so important to them. this is their way of letting us know that they still love us. i did manage to tell him how much i love him and on one more pleasant phone call was told back that he loves me. priceless.

please keep sharing your trials and tribulations on here

our journals of our loved ones

[patientpatient]

Hi @Grasshopper3,

Just a comment about meds. My son's not on depot injection. He takes tablets every day and there's an opportunity to adjust doses (after getting approval from the psychs) if there's an escalation in symptoms. For travel, you could ask about extra meds that your son could take if things get out of hand. In our case that's an anxiety medication... and only for last resort use.

I've taken my son for two short (1 week trips), Qld and Tas. It went OK but a little difficult to manage around his sleeping schedule and various routines, so it wasn't possible to do too much. 

[Grasshopper3]

@patientpatient.
Good morning and thanks for the tip.
I will bring it up with his new Doctor next week.
My mum is in last stages of Parkinson's. My dad is turning 80. I promised my parents when I was 24 and about to migrate to Australia: if they can't fly to me I fly to them. So for last probably 10 years I've been back.
I see my mum (75) deteriorating and she now has blackouts so can't walk unsupported.
They made the decision to live independently until death does them apart.
So every year I MUST see them and put things in place for them. I've organised carers to get mum out of bed and wash and dress her and a cleaning lady too, lovely girls.
My dad is now very happy with all these ladies helping him out.
Sometimes he is cheeky with them and tells them he wants to be washed by them as well.
He is looking forward to their company and sometimes complains he goes through a lot of coffee as he offers them a cuppa every day. 🙂
It would be awesome if carers looking after the MI could use this carers system.
My son doesn't need to be washed, but it would be wonderful if a carer comes at home and cleans and talks to us and perpaps take him on an outing.
Anyway, as my son and I only just moved in together, I didn't want to leave him, and bought him a ticket too.
We wont be doing or venturing out a lot, perhaps visiting friends and family.
My son and I will be staying at family friends close to my parents.
They have spare fold out beds in the attic. If my son wants to smoke at night thefe will be 3 flights of spiral staircases... and their backdoor to their garden is locked with three different locks! This will be a challenge for him! Trying to go down in the dark on spiral staircase and trying to open backdoor... He'd do anything for a smoke tho. I just hope he doesn't wake anyone up. I would love to ask his Doctor for some light sleeping tablets. Although he has been refusing totake them. (more poison)
Anyway, my hair looks lovey, went to hairdresser yesterday and she is such a wonderful girl, had a great chin wag with her and she made me feel likea mlion dollars.
I had that much courage, even went past my ex to pick up a jacket I forgot to pack when I moved out.
I was happily greeted by our dogs, but I stayed outside and kept my distance.
He asked how my son was and I said 'good and he said well he will never be good, is he working yet? I stayed callm and said I have accepted my son and the fact he will NEVER live a produtive life but volunteers when he can.
He smirked and I thought I did the right thing moving out....
I miss those dogs and living on 5 acre property but I have moved on.
It is what it is.
Thank for reading my story
🌷

[Grasshopper3]

@Former-Member
I am so pleased for you, at least you know, the 'not knowing' is heart breaking.
Any more news?
I spoke to a friend I hadn't spoken to for over a year. I know she's got a daughter with SZ.
She told me, her daughter got married last year!! The daughter is 44 now and my friend and her husband have gone through so much with her, as you would with SZ.
The daughter and her husband had no place to go tho. So my friend and her husband moved out and let them move in.
The sacrifices will never stop.
She said the hardest are the text messages she gets from her daughter, even now she is married and have a roof over their head. The messages just don't stop and she has many sleepless nights.
I hope your son gets an inside he is unwell and walks into a hospital one day.
I kept telling my son if he couldn't cope with the chaos in his head, to walk into emergency dept of any hospital.
I kept telling him I loved him but I'm not a professional and there is help but you MUST go to hospital.
Eventually it kicked in.. when I was overseas last year. As you know he went voluntary and then kept him in involuntary. He is still asking for a full disclosure and the 'world suffers from SZ.
I so hope you too, get your son back so you can hug him...keep me in the loop xx
Please take care
🌷

[Former-Member]

@Grasshopper3
There are social and domestic supports available, if you are happy to tell me what state you are in I will provide links.

[Grasshopper3]

@Former-Member! Yes please! Thanks for giving me heads up.
I'm in W.A.
🌷