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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 userMember30 May 2017, 9:22 am AEST

Re: Son (22) with schizophrenia

Hey @Grasshopper3

I have been thinking about a couple of things you said in particular in relation to the link that @patientpatient sent.

In the talk it said how we can watch for mood changes, behaviour changes and thought changes.

In your sons case you have noticed a change from poor sleep to too much sleep. Have you noticed if his psychosis is less, is he taking more care of personal hygiene, has motivation plummeted or is it similar. As suggested in the talk, write these down, it may be that a further med tweakage could be done to balance out the sleep. Mr Darcy was not good at reporting these things and he is starting to do a lot better once I stepped in and mentioned them. (did have a bit of a hiccup recently but hoping we have nipped it in the bud).

P-P I was really helped by the talk, at last pdoc appt I let her know Mr D not so good, did not articulate why I thought this. I am ready for next appt with info set out under headings given and the improvements I have noticed since meds adjusted. Thank you for posting this.

Darcy

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

patientpatientSenior Contributor30 May 2017, 11:48 am AEST

Re: Son (22) with schizophrenia

@Former-Member wrote:

....P-P I was really helped by the talk, at last pdoc appt I let her know Mr D not so good, did not articulate why I thought this. I am ready for next appt with info set out under headings given and the improvements I have noticed since meds adjusted. Thank you for posting this.

Hi @Former-Member, I'm always writing down observations. Problem is how to report them to the psych. It's rare that I'm included in appointments and, when I am invited, it's very awkward to be open and honest while my son is sitting there wondering why I'm being "so negative". That's how he sees it and I've been told off a few times. I did quietly email observations to the new psych. Apparently he printed them out then waved the page around at the beginning of an appointment, asking, "What's all this about?" The drive home after that appointment was awfully quiet and tense. I know that the psych is only getting part of the story. If my son was in hospital, the medical staff would record and share their observations... and I'm on the team, or should be. Thankfully, our psychologist is open to receiving information that could help with understanding and treatment. I try to be careful and only report observations. Lately it's difficult to untangle my own anxieties from my son's illness, if that makes sense.

@Grasshopper3, in our case the sleep pattern did improve as my son got used to the meds. More sleep is much better than less. But it's difficult to manage the late sleeping if you have appointments (or planes to catch).

edits: The sleep pattern didn't change gradually, it was sudden, like "turning a corner", to use the same phrase as Dr Sederer in the video.

And hello to @Former-Member, sorry I didn't reply earlier.

In response to: Son (22) with schizophrenia

Unknown userMember30 May 2017, 12:22 pm AEST

Re: Son (22) with schizophrenia

@patientpatient

Hear what you are saying loud and clear Bro.

If your son is being seen as a public patient their are obligations to the carer under the mental health act (particularly if consent given).

I have a complaint in at present and the result is the docs are going to have to do some training in relation to carer communication.

It is well researched and documented that patients have better outcomes when carers are involved.

There are good ways of complaining and not so good ways, I am doing my best to ensure the docs know in no uncertain terms that I do not wish to undermine the therapeutic alliance and and I appreciate what they have done, Mr Darcy's wellbeing my sole concern.

One thing is as clear as daylight, until I put together a concise history setting out meds given, responses to meds, behaviours etc things were getting no better and in fact were getting worse. We are now hopefully on our way to stability.

Darcy

In response to: Son (22) with schizophrenia

Unknown userMember31 May 2017, 7:39 am AEST

Re: Son (22) with schizophrenia

Good morning @Former-Member @Grasshopper3 @patientpatient

In response to: Son (22) with schizophrenia

Unknown userMember31 May 2017, 10:20 am AEST

Re: Son (22) with schizophrenia

Morning @Former-Member, how are you, how's hubby? My bro has been quiet. So many drugs in his system. Mother's chest infection is slowly on the mend. Always worried it may progress to pneumonia which is what often takes them out with such comprised immune systems (metas cancer & massive weight loss. She's a fighter. Makes me laugh though, she was excited about a shawl she found on sale so mailed me one - turns out its a maternity modesty shawl. Her MH symptom has always lacked social discretion. However, I would have appreciated such a shawl with my babies 20yrs ago. Seen her deliberately cough on things she mails to people when she is sick, then puts in accompanying letter "hope I haven't passed on my flu to you..." Maybe she's saying she wants a visit.

Its hard to give flailing family time when I know I'll come away mixed up and sad for days.

Just saying hi, hope we all a have a good day.

Lapses🌿

In response to: Son (22) with schizophrenia

Unknown userMember31 May 2017, 10:51 pm AEST

Re: Son (22) with schizophrenia

@Former-Member that is so funny about the shawl. Families can be complex at times. Mr Darcy relatively steady.

How are things with you @Grasshopper3 and @patientpatient and your Colgate men?

Darcy

In response to: Son (22) with schizophrenia

Unknown userMember01 June 2017, 5:36 am AEST

Re: Son (22) with schizophrenia

I leaped for joy yesterday to receive this s tx from my 'colgate' bro:

"Hey Sis how's it going. Just to let you know mum's having trouble breathing this cool air coughing a lot. Other than that something I recalled witch I wasn't sure of wasn't true witch was a relief to know. The spirit world playing tricks on my thoughts. Now I have a greater need to find out if my boys are still alive or not"

Mightn't seem like much to the outsider but to hear him say: "The spirit world playing tricks on my thoughts" is the first time I've ever heard him indicate that his thoughts might not be based in reality. This is a step fwd, but early days, he's also good at knowing what people want to hear.

Never stop hoping 🙂

In response to: Son (22) with schizophrenia

Unknown userMember01 June 2017, 7:30 am AEST

Re: Son (22) with schizophrenia

@Former-Member
That is lovely to hear, hoping he can somehow connect his clarity of thought to medication... quite possibly not and this is where it gets very hard. (This is really something his treating team need to hear)

He may still be rejected too by his children, this is a very delicate situation. I don't know if his kids would even be amenable to listening to the loss of insight talks or learning about Sz.

Darcy

In response to: Son (22) with schizophrenia

Unknown userMember01 June 2017, 7:51 am AEST

Re: Son (22) with schizophrenia

Thanks @Former-Member, must try find his MH teams number and findvout who his new case manager is. He had acwin on the pokies this wk so maybevon a bit of a high.

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

Grasshopper3Senior Contributor01 June 2017, 8:22 am AEST

Re: Son (22) with schizophrenia

@Darcy, @Former-Member, @Former-Member, @patientpatient, @Shaz51

Isnt is like winning the lotto if you get a message like that, Lapses? My heart jumped from joy for you.

I have to be back in the kitchen, preparing sandwiches for my collegues Big Breakfast, at work, we collecting more funds for Cancer Research, so we all bring in morning tea, and donate $10.

We have already collected money for my collegues daughter, who has an operation to get some cancer removed. She was given flowers, some pressies, and money towards her new puppy dog. She is doing much better and has even gone back to school! yay! Good news.

Thinking of you all xxx

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