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Son (22) with schizophrenia

Grasshopper3Senior Contributor24 Mar 2017, 1:25 pm AEDT

Son (22) with schizophrenia

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.

470 replies

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In response to: Son (22) with schizophrenia

Unknown userMember28 May 2017, 10:19 am AEST

Re: Son (22) with schizophrenia

My brother is upset that MH are increasing his antipsychotic injections. He thinks they're trying to poison him. Having said that his home is a little tidyier than usual, he gets upset less, less argumentative and eating better. It seems. Maybe CTO's do have a place.

Hope you all have a good day today, try rest 🙂

In response to: Re: Son (22) with schizophrenia

Grasshopper3Senior Contributor28 May 2017, 1:49 pm AEST

Re: Son (22) with schizophrenia

@patientpatient, @Former-Member, @Former-Member, @Former-Member, @Jo, @Faith-and-Hope, @Shaz51,

at whoever is interesting in my journey, my story as a carer for this terrible, horrible illness we call 'Colgate'

I had to take two half a days of this week to drive my son to his appointment, lucky I have a supportive employer. The week before I took the whole week off.

I just seem to have the feeling some of my collegues are getting resentful. If I leave, it means they have to work harder. So it is a natural reaction, and I understand.

However, something is not right.... and I find it hard to explain as I don't understand myself nor can I give this feeling a label.

I just write it down and see if you can help me give this thing a name.... I tend to lean to jealousy but no, I am not like that... and not fair to have this feeling. I'll try to explain to this forum, and see if you understand how I feel. I was just watching a youTube clip from an American carer, (I will see if I can copy and paste the link underneath, it takes about 15 mins) It is very close to how I feel:

A lovely collegue of mine is struggling too but with a different illness in her family: her daughter has cancer, only 14 years old. This is just tragic, no words can describe how she must be feeling.

She also, had to take few weeks off. We raised money and two other collegues went by with some presents, flowers, and.... extra money to put towards the purchase of a little puppy dog.

The daughter has been operated on and is making remarkable progress, lots of photo's of her cuddling her beautiful puppy dog.

This makes me so so sad.... and I dont like I am going through this horrible feeling of.... life is just so unfair.

I try not to get caught up in this unfairness, it is what it is.

Its just.... I had to take time off too, to look after my son. No flowers, no home visits to show they care? This 'Colgate" my son has, will never, ever go way. Cancer is curable.

Lucky for the 14 year old, she has premium care, lots of fund raising has been done to look after research for Cancer and I wish her and her family all the very best, and I would give more if I could.

This is why carers can feel so incredible lonely.

The American Ladys name is Liza Long. She is trying to lift the stigma around MI. She is showing respect for her son, as she is not showing his picture for the whole world to see.

She also talks about fundraising etc. I felt a bit icky when she compared some psychopaths shootings with MI. She explains, it could have been her son. I get that. It is not fair to compare violance with MI but it could go hand in hand, if people are not being made aware of it. It could be preventable, I'm hoping, in some cases. I dunno, but I do get it with the fundraising and awareness of some illnesses but mental health is not easy to talk about as we have to respect the person suffering from it as well.

Here it is:

https://www.youtube.com/watch?v=EkL6Qx07aiU

In response to: Re: Son (22) with schizophrenia

patientpatientSenior Contributor28 May 2017, 2:13 pm AEST

Re: Son (22) with schizophrenia

Hi @Grasshopper3,

I haven't watched the video yet. Just wanted to comment on a few things.

"Its just.... I had to take time off too, to look after my son. No flowers, no home visits to show they care? This 'Colgate" my son has, will never, ever go way. Cancer is curable."

Sz may not go away but it also isn't static. My son went through a "sleep all day" stage but that eventually changed. For years he couldn't watch anything with a screen (TV, mobile phone) and went to great lengths to avoid screens. I watched him on a train trying to hide away in a corner to avoid phone screens. That's changed too and I now see him at the computer with the phone and ipad, three screens blazing away and no problem. There is progress to be made.

There is a genuine feeling of isolation in our situation. We have limitations that others don't have, the limitations restrict our activities and modify our work patterns. Some work colleagues have a level of understanding and others don't. They're used to people being sick and getting better and, after a while, they (and friends and some relatives) just stop asking.

In response to: Son (22) with schizophrenia

Unknown userMember28 May 2017, 5:01 pm AEST

Re: Son (22) with schizophrenia

@Grasshopper3

I had listened to a different podcast where the speaker said when she had a brain tumour removed, people visited and called by with casseroles but when she was hospitalized dir depression ... nothing.

Long haul struggles can be overtaken by flavour of the month crisis situations.

Providing on going long term support takes effort and endurance, throwing a few dollars at an emergency situation is so much easier.

I know I was one of those that did not understand a thing about mental illness until it affected me. I don't think that I associated Sz with violence, I simply did not know and certainly did not understand a caregivers struggle.

I understand @Grasshopper3 it is not a case of jealousy, it is perhaps an absence of understanding the depth of the struggle. I don't know how to get the message across at a work place ?perhaps as part of in service training

Would you like a dog too @Grasshopper3 for your son? Do you have a dog @patientpatient. I don't think we could be without one for my husband, he dearly loves our older dog. I believe in America they now have psychiatric service dogs, have seen something on TV about dogs for PTSD here in Aust.

Take care,
Darcy

In response to: Re: Son (22) with schizophrenia

patientpatientSenior Contributor28 May 2017, 7:51 pm AEST

Re: Son (22) with schizophrenia

Hi @Former-Member, yes we have a dog, bought a puppy for my son's 18th birthday. She's been with us through thick and thin. She's good company and very therapeutic for both of us.

In response to: Son (22) with schizophrenia

Unknown userMember28 May 2017, 8:05 pm AEST

Re: Son (22) with schizophrenia

@Former-Member
CTOs are not all bad, there is the powerlessness but a lot of patients do so much better on them. Having someone who could tell the treating team these observations would be good feedback.

In response to: Son (22) with schizophrenia

Unknown userMember28 May 2017, 8:12 pm AEST

Re: Son (22) with schizophrenia

@patientpatient
Our dogs provided me with great comfort when Mr Darcy was an inpatient.

In response to: Son (22) with schizophrenia

Unknown userMember28 May 2017, 9:15 pm AEST

Re: Son (22) with schizophrenia

Thanks @Former-Member, don't like bothering them they have my number and don't return most my calls, and my bro thinks the worst if he knows i've talked with them, but I'll try again.

Hi @Grasshopper3, you're sure right in saying 'its not fair!' soooo not. I hope your son is one of the few who's "Colgate" (sz) is short and he stabilises. So far so good (re illness). And yes its very good you have a supportive boss. I hope your college's daughter survives this cancer scare.
It is hard to talk about MI, even my minor panic attacks and having to leave gatherings last week (I left discretely knowing when its coming on and don't push myself anymore) but an acquaintance popped by and quized me, she just didn't get the social phobia and crowd thing, was more interested in the headache and faint feeling and SOB, I found myself agreeing with her it was 'just' a stress headache. Find myself making up physical co to cover MI behaviours mostly anyway these days as that's all they understand and they don't judge it like they do MI (not saying that's a good way to be, just how I cope).

When my brother first got his sz dx I was very taken back, felt sad and a sense of loss that my little brother was broken but also that statistically (at his age and drug use and paranoid psychosis) research indicates prognosis or recovery likelihood was poor. That was almost 10yrs back, I'm still in hope but its got worse in reality. Just keep swimming, savour the good days. Chin up ❤

Hiya @patientpatient 🌿

Lpz

In response to: Re: Son (22) with schizophrenia

Faith-and-HopeSenior Contributor28 May 2017, 10:11 pm AEST

Re: Son (22) with schizophrenia

Our mi issue is still invisible and no dx possible yet .... "living a lie" to try to hold home and hearth together ..... very lonely.

Nothing teaches like experience tho ....

😔

In response to: Son (22) with schizophrenia

Unknown userMember29 May 2017, 9:07 am AEST

Re: Son (22) with schizophrenia

🌷💐 faith-and-hope

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