Friends, Family & Carers Forum

[Suzi]

Hi my son was diagnosed with schizophrenia 14 years ago. He lives with me and always takes his medication but often has periods of paranoia where he believes the neighbours are constantly talking about him, people are posting nasty comments via computer games etc. and during these times he demands I make them stop. His personal care gets worse around these times and he starts drinking. He will not go to a psychiatrist but we have a very good family doctor who supports us both. I am really struggling with his illness at the moment and with the lack of any sort of support. I am very worried about what will happen to him in the future. Guess I really need to see how others manage being a long time carer for someone with this awful condition and what the do to stop themselves from losing it. I also work full time and have an elderly mother I help care for . Thanks

[CherryBomb]

Hi @Suzi 

Welcome to the forums.

You're not alone with feeling unsupported and like you're struggling to cope after caring for a long time. Many carers on this forums have similar experiences to you. @PeppiPatty @Dexy @Patricia @Daisy and @Jo just to name a few also care for their adult children.

While waiting for a response from our other members, you might find reading this post useful, it's a discussion among parents who care for their adult children. You might also want to connect with @nanna who just posted last night about caring for her grandson who has been diagnosed with schizophrenia.

Also, you mentioned that you have a supportive GP. It might be useful to enquire about getting a referral to a psychologist for counselling. It may help with getting some ideas on strategies on how to cope, and if not that, then a space to air your concerns too (as well as here).

Also, ARAFMI is a support agency that provides support carers, which might also be useful to link in with. One of our moderators, @Hobbit works there. He might be able to point you in the direction of some services in your area too.

 @kristin @Alessandra1992 @Cazzie any ideas for self care for Suzi?

CB

[PeppiPatty]

Dear Suzi,

I read your message and am very sad for you on reading you are not getting support. Today, I am thinking on what would be the best way how to deal with your situation....but depending on what state you live in, the state I live in....I see my GPwho can arite a letter to HACK a social support team who will come ou one or twice per week. Or whatever re you need.
Can I get back to you tomorrow or tonight ?
You are not alone

[Rover]

Hi @Suzi 

My 20 year old daughter is due to be discharged from a mental health unit on Wednesday. She has been in there for a month and will be released into my care despite not listing me as her primary carer. She was living with her so called partner when her 'episodes' occured and he didn't know how to help her so he contacted us. By the time I found her she had been highly psychotic for about 5 months and had hit rock bottom. 

I too am apprehensive on how best to help her when she gets home. She is taking medication willingly, however I feel she is just doing so to be compliant so that she can get 'released'. She is calmer and presents as 'normal' but she writes in her journal about her thoughts and I know her dillusions are still with her. I do not believe I will be able to get her to see a psychologist either as she is in complete denial around her illness. I haven't been given an official diagnoses as yet but I have been reading widely around schizophrenia and bipolar treatment. 

I read a good book by Xavier Amador - "I am not sick I don't need help!". I highly recommend it. It has good strategies for coping with different situations. I also found helpful information on The Black Dog website. It has a 'mood' chart that you can download so that patients can record their moods and look for triggers. Once a get a confirmed diagnoses I will definately be exhausting all avenues of information and help so anything I find that works I will share on this forum. I am ready for a long battle and I will most definately be seeking help for myself first. 

I have also booked an appointment for family counselling with my husband and my son who is 18 and still lives at home. My son's boss went through exactly the same thing with his nephew and once my son confided in him he has been so much better. His boss even rang me to see how I was coping and to give me some advice. Talking to someone who has shared your experience really helps.

I will let you know how we go.

[Suzi]

Thanks Rover. I will definitely have a look at the book. My sons story started very similarly to that of your daughters with him being scheduled back 14 years ago. Looking forward to seeing how you get on

[Suzi]

Thankyou justanother47yr . I am in SA and tried to look up HACK but can find nothing. I have seen a psychologist who has told me I am suffering from 'burn out' . I get this but I find that talking to someone who doesn't 'live' this experience isn't a lot of help when I get home and find myself surrounded by the same things. People say they understand but really they don't and i feel they would rather not know. I feel I have more understanding in two or three posts on this site than I have had in a very long time... Thanks and let me know about HACK if it's in SA

[PeppiPatty]

Hi Suzi,
To be honest you probably are burnt out and.....no wonder
I get burnt out just remembering my complex years...

I went to see my GP about two years ago with all these issues happening
1, married to someone chronic paranoid schizophrenia
2. Recovering from caring for my son....many years of hospital visits but now has recovered.
3. My own psychological well being from head injuries.....

And the GP got my name on Hack. The Government organisation that assesses people in the community. I was assessed and they asked me what I needed.
I said... Someone for social support 3 hours per fortnight and someone to help clean my place....one per month. . The support workers always happy to see me.
I am very grateful.

[PeppiPatty]

Dear Suzi,
Thank you for your message. I've been thinking about you.

I think that we need to think of your life in two ways
One is your son managing his life
One is you managing your life.

To get your son to manage his life...for instance showering ....is something that can and should be taken out of your hands.
This can be dealt with by seeing your GP about either getting a caring agency that employs persons who are living with his condition or getting a male carer in from say... ARAFMI ( I think they employ carers)
Or another place as amazing as ARAFMI is.

When I called a place in Western Australia who were a support agency for Schizophrenics, I asked if we could be interviewed and the employee of this agency allocated a carer to us once per week. The carer, someone with lived experience, ichanged my ex husband experience of his day by day well being. He held onto that weekly visit, constantly talked about it. It was good.

I personally enjoy spending all my time alone. I have a coffee in most mornings with one of my neighbours. I make sure to hang out with my other neighbour, a 64 yr old lady and we play heaps of scrabble. Have you thought of joining a place not far away but you could meet like minded people ? I was thinking of joining the library what about you ?
Meditation group?
Also, because of my aloneness, silver chain makes sure someone visits me three hours every Tuesday arvo to talk to me. Could you see the GP about that? This is what hack is.
We write letters to people (I still prefer slow mailing people ) and organise my artwork.

There is something very nice about people coming out To listen to you. It's a great service.

[Jaycoco]

Hello Suzi

My son also has the paranoia about the neighbours talking about him or people posting stuff on the computer.  I usually say to him in these circumstances " are you posting on other peoples computers? His reply with be No so then I say why then do you think others would be doing it to you. remember it is the schizo that is mixing your thoughts up and I am telling you that this is not happening also ask your brother to test it to see what he says."  I dont know if this approach of bring ing him back to baseline is helpful to him,  but it does seem to stop him worrying so much about it.

If my son starts drinking he really gets very pychotic and aggressive and wont listen to reason at all and you know something bad is going to happen.  Luckily he stays off the alcohol most of the  time. with the occassional slip and then he gets very remorseful.

There is a general lack of support as one needs the help when a calamity is occuring .  I dont know if there is a help line one can phone like life line when one is in the midst of a crisis as I feel this would be a great help to me.  I usually phone my mother but she lives overseas and it is not good as she worries.

Anyone have any more info to share about how to cope as I do think most of this caring is like hunting for something in the dark and a lot of going round in cricles.

[JT]

Try HACC @Suzi .  I'm in the NT and that's what ours is.