Friends, Family & Carers Forum

[Grasshopper3]

@ivana
Thanks for your interest.
I took him camping and tried to get him up early to make the most of the first day. He didn't get up until 1pm.. I decided to still go eventhough this meant we could be pitching up in dark as it was a three hour drive.
I let him wake up and smoke for an hour, then we left.
He drove, and that made me so happy. We actually had fun driving there.
I pitched up tent while he smoked but he helped me with the matresses.
I cooked us dinner and went to bed. He 'slept' in back of car with backdoor open with flyscreen for mozzies. I slept in my tent. I took panadol and ibrufen as I suffer from fybromyalgia which means my body aches all the time.
I woke up every hour and heard him still being awake.
Most part of night he tried to sleep. He said this happens every night. He didn't have his phone so no entertainment but just being awake. I feel so sorry for him.
(he refuses sleeping tablets)
Consequently he slept the whole morning. I was up at 7am and went for a walk and had brekkie by myself and even did some reading.
When he woke up we walked 12 kms nd a little swim in nearby lake and had dinner.
I went to bed and he was awake most night.
We still had fun though and he made a huuuge compliment which made it all worth while... He said while he tried to sleep he was really happy now.!
He drove back for couple of hours after two nights under the stars then he got tired and I took over driving home.
He helped me unpack car at home, I made us dinner, I went to bed and so did he but didn't sleep. He fell asleep by time I got up to go to work.
Don't worry we try everything to get him to sleep but most nights I hear him still awake in his bed. I know he's awake as I hear him cough, get up to go toilet or make noodles in kitchen. I told him to stay of internet at night and no TV but it's almost like punishment and it still doesn't help.
I better get some sleep myself, I have work in few hours.
To be continued.....
Take care of you.
🌷

[Former-Member]

hello @Grasshopper3

what a beautiful way to spend time together.

you gave your son an opportunity to camp under the stars

that was probably like winning the lotto for him

you know him so well, his lack of sleep, his need to smoke his cigarettes

you are so non judgemental and patient

you are a very loving mother and your son knows this, appreciates this and loves you back the same

given the life he has dealing with his illness, he still pushed himself and still was able to feel how special that time away was

i am in total awe of you

I have cried non stop most of today. my appointment with my psychiatrist at least brought on the tears and then i felt angry with him. i cannot explain the extreme despair i am feeling of not being able to contact my adult son. does it make any difference that he is an adult.. not to me.. he is still my son.

thank you so much for sharing such a precious camping trip for you both

love to you both xxxx

[Grasshopper3]

@patientpatient
@Former-Member
@Lunar
@CherryBomb
@ivana
Hello again,
Thank you for your kind words, they mean so much to me. It makes me realize how lucky I am. At least I have him with me now after a looong rollercoaster ride. He just couldn't work anymore, his hands were red raw of his hard labouring job end 2015. He kept going till his boss saw his hands and told him to go home) He ended up breaking up with his g/friend (6 years in relationship) homeless as couldn't pay rent) no money, chucked out all his ID like passport, Medicare card, ATM card... No matter what I did, his mental state of mind was almost like an anarchist, against government, Medicare, Centrelink, banks, pharmaceutical industry I heard it all. I almost rejected him as my son as it was just too much But how can you give up on your own son? I could not, I ended up trying not to argue with him, kept telling him I love him and urged him to go to hospital if it all got too much in his head. When I was overseas mid 2016 he ended up in hospital... I had no contact with him other than via his sister who was also on overseas holidays... I was a wreck and eventhough I knew he finally was is a safe place, just the fact I couldn't tell him I was thinking of him and I loved him and I missed him and I wish I was there for him and how proud I was of him and.... As soon as I stepped out of plane I went to visit him in hospital and I gave him the longest hug ❣️
So dear @Former-Member, I have a good understanding of where you're at, at the moment. I can hear your despair and feel your pain, and hear your cries for your lost son. Like me, you're going through a huge amount of emotions (grieve! )and trying to cope and live a 'normal life' I hope your have the right support for yourself. I read your psych made you angry and I wondered If the visit was beneficial to you? I have seen a few psychs with my son, and when he didn't feel OK with the visit he refuses another visit. No good if you suffer from SZ, it takes a lot of effort to urge him to see another one. I have booked myself in for a visit with a psychologist too, theres a bit of a waiting list mine is 18/4/17. I have seen counsellors before and they have helped me. I just need to understand my own coping behaviour a bit as I feel I am losing my ''Mojo" and as I get older I'm losing my sense of humour and feel quite down myself lately, eventhough everything is 'fine now.
But I have sacrificed a lot in my life, moved to the other side of the world for a better future for my kids leaving my family behind and just finished a relationship to care for my son and now I feel I'm sort of stuck for the rest of my life, caring for my baby. I need to look at plan B for when I'm no longer in the position to look after him. This is where I get stuck and thats what I mean with losing my Mojo. I'm getting tired of always coming up with solutions and problem solving. (PS that's how I earn a living too, working full-time in demanding & stressful job, solving other peoples problems and there is no rewards - such is the life! But... I still count my lucky stars he is still with me, eventhough he still believes we all live a fictional life and he's only 'complying' at moment and we're all slaves and sheep. (well, he might have a point there) 😉Thank again for your kind words and please let me know if I can help you in any way.
🌷

[Former-Member]

hello @Grasshopper3

Thank you for your reply to all of us.

I feel myself, one of the major issues is that I feel so terribly alone in all of this. My family care, my husband cares, my other son cares but is also still angry because he grew up and was a victim so often throughout my older son's changing persona. I do talk when he will listen about those times and reassure him again that I know how much he was affected also.

i keep being told when family ask have I heard from him that I have to realise that it is up to him to seek help.

Yes I know this. However, in the meantime I cannot just bury, ignore such extreme grief. I am trying so hard to think in the now. Some of the time I am succeeding.

Then unwanted thoughts flash across my mind, that he is so vulnerable. all of the things that could happen to him. How frightening the voices and the hallucinations are for him. yes he is an adult and yes he is still my son who I love so deeply and need to hug him.

I booked an overseas trip before I found out about his diagnosis. I lost my aunt last year, i still have an uncle and other aunt overseas who are elderly. I have not been back for 50 years and need to see them. So am going to meet all of my relatives, my family. I was so excited when the trip was first booked. first big thing i have ever done for me in my whole life. so exciting meeting all of my overseas large family who are all so close to each other. then boom, son detained, diagnosis,disbelief, shock, autopilot visiting him, patiently listening trying to understand. constant belief that he is being followed, listened to, persecuted, by government. he used the term sheep snidely too. How can two separate people with schizophrenia who have never met hear that same voice, sheep?

i worry that if he rings me i wont be able to answer because overseas mobile calls run up into the thousands of dollars. I cant contact him to tell him about this. I can only hope that he will ring me again. The phone even comes in the bathroom with me. I am worried that he will call when i am overseas and when i dont respond he might take that as my not loving or caring for him and am worried how that will affect his voices. Nothing can be further from the truth. i would love to text him, skype him but he allows no contact details.

so providing i dont have a heart attack myself, i pray that he will ring within the next two months.

matosh you have come to a point where you have some levelling out. Now you are finding that you are far more exhausted and drained than you thought.

are you able to take some sick leave or annual leave or long service leave from work. we often do not know how much we are affected until the pressure is relieved. Then we breathe and feel the pain and what it has done to us mentally and physically.

I just spent 3 weeks in hospital; i should have gone in last year but was adamant that i had to keep going to avoid a domino effect.

that took it's toll and eventually i succumbed and was admitted. i told my psychiatrist that i was ready to leave. i was ready as in did not want to be in hospital any more; not ready to go home and face every day life. this is where i am now. finding myself breaking down and sobbing so much, too often.

what i hope for: not even worth going down this track yet as i remind myself that i am living in the now.

I was angry with my psychiatrist because I am angry with the whole health system in this country. I am angry that carers of people with mental health are not better supported, looked after, compensated.

I want to take on the whole system!! So I need to look at where all of that anger is coming from. This I will start in my next session.

For now I wish all of you some moments of rest, comfort, pleasure, laughing. I wish that I could wave my magic wand. I will just have to settle for talking to you this way. I am also on living with schizophrenia first hand. reading experiences from Zam.

stay safe xxx

[patientpatient]

Hi @Grasshopper3, the lack of a "Plan B" is a huge concern. It's not needed now but the long term picture is really unclear. I've thought of moving to a small unit, hoping he could manage if on his own but can't see that working. That leaves assisted or shared accom. There are some residential services (in Vic) that I'll investigate. There do seem to be more options for over 50s and fewer options for younger people. I think he'd find shared accom very stressful. The camping trip sounds like an epic effort on your part and it's great to see some positives came out of it. (I attempted something similar, but it failed completely and triggered a relapse.)

@Former-Member, 'not knowing' is an awful experience and I feel it every time I read a missing persons report. Anxiety can create a huge snowball of negative thoughts, and we (I do it too, all the time) have to find a way to stop those thoughts gaining momentum and dragging us down. The OS trip, once you're there, could be a good way for you to "recharge" and the situation at home just has to manage itself for a short while.

[Grasshopper3]

hi @July7, @Jemima @Former-Member @CherryBomb, @patientpatient
@ivana

Thanks for sharing your stories and boy, it makes me realise eventhough it is really tough, we love our kids very much and do anything for them, I feel the burden is just too much at times, financially and emotionally.
We were never trained in this 'caring' role, and I feel at times we are taken advantage off...
I am not blaming the MI as it's not their fault and they need all the support they can get specially from their families and loved ones (if they have any left) but where are the professionals?
When my son was in hospital June 2016 for four weeks, I was told by his dad he will be living in an institution for the rest of his life.
His dad (my ex) took him out of hospital after four weeks and pledged that would never happen to his son and he would help him. I was so naïve...
He would help him as he could see so much of himself in his son. So he took him back to an isolated block of land (without a house, only a garden shed and a toilet block) about 1 1/2 hours from the city and you can only imagine what total isolation does to someone with SZ. My son tried to rest (he was on a lot more meds than what he is now) but his dad tried to get him to do things and started generators up early hours in the morning and my son never got any rest and he walked out a few times but had no where else to go.
His dad, in August 2016, one day, packed up a bag and left. He found a Philippino lady online and I havent seen him since.
He left our SZ son stranded there, no money, no house, no car, nothing. He left my son in dispair, even though now medicated. I tried to see him as much as I could and rang him twice a day. I gave him a car DVD player and heaps of DVD'S... And bought him loads of shopping that couldn't go off without a fridge.
I was then living with my now ex partner who didn't want anything to do with 'that lot'.
I just couldn't bare it anymore bought a little villa.
I can offer my son a roof over his head now, proper food in his belly and clean clothes to wear. But.... It has certainly taken it's toll.
I am over my ears in debt as I had to take a mortgage out over 30 years.... I'm 55. So working full time for a looong time, I really don't know if I can to be honest. So tired...
My son has come to terms in accepting money from Centrelink. (you might have some idea someone with paranoid SZ, how they think about government.)
So he now pays for his smokes and phone and extra food and he is saving up for new clothes. He seems happier now but the mental illness ...we sometimes have to beat it off with a stick, it's always there....
So I'm left with mortgage, car loan and all the bills that come with owning your own home
Oh and when my son still lived on the block he got a phone call from someone from Homes west as his then case manager had seen the living conditions where he was living with his dad so he put him up for emergency accommodation. The person who rang him, woke him up whilst he was trying to sleep in a 50°C yes! 50°C little garden shed on that block of land his dad owns, and he was asked. 'do you at this moment have a roof above your head' and my son said well yeah If you can call this a roof, and the man said, 'then I have to take you off the list, goodbye'
My son then asked me if he could live in my car. He was not allowed in the house as my now ex partner didn't want to know him.
I had to say no, as I needed my car for work and that's when my heart broke and I decided to leave my partner...

So I can hear the sacrifices we go through, we have just gone through so much, and I don't think anyone should be going through this with such an intensity. Where is mental health help?
I was surprised they let my son go with his dad, even though I warned them his dad has never been diagnosed with SZ but he's got all the signs and I have copped a lot if abuse of him in the 20odd years I was with him. Even ended up in a refuge with my two kids as life was unbearable with him and copped a lot of mental and financial abuse. And left me totally isolated from my family and friends as he argued with everyone!
I was able to rebuilt my life found work and a cheap rental and we marched on, not seeing my kids dad for years and hardly any child support. I always spent a lot more money on my son then my beautiful daughter.
My son needed specialist care, growing up, starting with speach therapists, after school help, pediatrists, psychs you name it. He started off with ADHD now paranoid SZ.

I hope my story helps other carers and that it'll give people interested in mental health an idea on what needs to change to make it better for families caring for people suffering a mental health condition and cannot look after themselves. A lot more needs to be done.
As I feel very tired I cannot think of a solution but surely there must be a housing facility where they can live part of the time and get slowly taught how to deal with money, looking after yourself etc etc? Part of the time and weekends home sort of thing...i really can't do it all?
I must stop now, it's becoming a book lol
Take care
🌷

[Former-Member]

hello @Grasshopper3

I only just saw this last post.

Words fail me at what you, your son and daughter have been through.

Yes of course you are tired, drained, exhausted, not knowing how much longer you can carry on.

you have had to deal with far too much without the schizophrenia.

I dont have a pleasant story either with my marriage.

I read also that your son stuttered when younger.

My son started stuttering at 2 then it went away to return when he started year 3 in primary school. it worsened throughout his schooling to the effect that he basically went to school to socialise as his top priority. i used to dread hearing the telephone at work ring thinking that will be the school wanting me to go and see them about my son.

i took him to psychologists, speech pathologists, psychiatrists, social workers and he always slipped under the radar. Yet my maternal instinct knew that there was something different there. This is the pain inside me that pulls at me now. Doctors, nurses, psychiatrists, families do not get this part.

today i received several text messages from my son warning me again about radiation from electronic devices and that I could pay $100 (normally $199 now on special today only). They are

[Former-Member]

hello @Grasshopper3

sorry i am quite upset and clicked on post instead of return

my son is stressing that i need to buy an EMF neutralizer to block out cellphone radiation, to prevent heart attacks, brain damage and brain cancer, i have to buy the white one that has a tamper proof seal and an extended warranty for only $50.

i thanked him for the information and told him that i cant afford to. I also said that i spend limited time on electronic devices love mumxx i am going for a walk now (thinking to distract from subject)

i literally dread and feel physically sick responding for fear i might worsen his paranoia.

he sent a text message back " ok just die miserably then, just like the rest of the idiots in your son's family."

i replied much later when i got myself together " i do appreciate you thinking of me. did not want to upset you. love mum xx" trying to settle him.,

i am just back to square one. i know that i was told that this would get like this. How do you prepare yourself for that??

So just tell myself that is the illness and  dont think about it??  that doesnt work for me.

[Grasshopper3]

It must be full moon! My son tried to tell me stuff today.... My gosh what goes on in their heads?
I talk to you later, I have first appt with a psychologist. Wish me luck 🌷

[Former-Member]

---

@Matosh wrote:
It must be full moon! My son tried to tell me stuff today.... My gosh what goes on in their heads?
I talk to you later, I have first appt with a psychologist. Wish me luck 🌷

---

I do hope your appointment was helpful and that you had a good rappoire with the psychologist. 😅😺