Training and support for carers of loved ones living with schizophrenia

Thank you so much for sharing these resources @Banjo123 I'm so glad that you've had such positive experiences with these services. I have just edited out the name of the lovely worker you spoke with at Tandem, as we like to avoid names here with it being an anonymous space.

I'm sorry to hear that you were running into dead ends when going through the SANE website. That's really valuable feedback and I wonder if you might feel up to sharing it through our Feedback form? Absolutely no pressure to, as I hear this has been a difficult and frustrating week already.

I'm really glad that you've found some supports that you're feeling hopeful about and so happy that you've shared them here with the community 🌻

Hello,

I can relate as my brother has Schizoaffective Disorder, and he has slowly lost all contact with the outside world, he turns 40 this year and he has been diagnosed for 20 years, half of his life.

I do not have formal training or advice to give, but I can tell some of my personal lived experience and atttitude, things I have learned to remain an ally with my brother and to be his friend and sister.

It has been really sad to me to see people see him as the symptoms of his condition, and his diagnostic label, rather than a person who lives with a "loud radio station in his head which tells him horrible things".......so, he says horrible things and thinks horrible things, but is it based in reality, or is he expressing his truth?

I try to separate the illness from the person, and remember that inside my brother is a tiny scared soul who 'once was normal and had hope for a life' and now he is fairly stuck with limited options.

Also, some of his fears/delusions are somewhat based in reality and history, others are confabulations where his brain is trying to understand all the emotions and 'radio station' in his head.

So first up, I listen to what he has to say and if he's emotionally agitated I put boundaries in place and say, I understand you're angry but I didnt cause it so quit screaming at me. If he keeps screaming I just hold the phone away from my ear as he screams on and sometimes i will even put the phone near a background noise so when he actually listens, he realises and learns that screeching = will not get absorbed.

Over time he has really responded well to this tactic, and it helps me because I know he is not screaming AT ME but its still unpleasant to absorb. My mum takes it all and resents him, I put boundaries and respect him, enjoy him once he simmers down out of whatever set him off.

I always let my brother tell his version of reality, and then I will ask direct questions back to him.

- TOPIC:The neighbour is plotting against me.

RESPONSE: Do you truly believe your neighbour is plotting against you....what is he doing? Are YOU sitting inside your house, thinking about your neighbour? It actually seems to me, like you are afraid of your neighbour and you are wishing he would go away. I think you are plotting against your neighbour, and you should stop that before you make trouble for yourself (again).

- TOPIC: The government controls me and shoots me up with drugs.

RESPONSE: Yes, I agree its absolutely horrible to be shot up with drugs (he gets injections every few months) and it must be very humiiliating and awful to go to the doctor and he puts a needle in your backside to put medication in. I would hate that, myself. BUT, due to "all the bullshit" (breakdown era where he got medicated) .....you and I both know that is awful and bad luck that you had to go through that. But remember things used to be really bad, and now your life is settled down a bit more. Remember how you used to be violent and nearly got arrested? Well, you had two outcomes - go to gaol or get medicated. (He says, they gaoled me and shoot me up). I say, well, you are in medication gaol but you still have a life. If you were in lockup gaol, you would have no garden, no car, no one to love, no one to hate....(he enjoys hating our other brother, for fair reasons).....so in fact, you should thank the government for shooting you up with drugs because without that your life would be a lot worse.

- TOPIC: Everyone hates me and is against me and nobody loves me.

RESPONSE: Everyone loves you but you live very far away from all the people in the family. It is sad that our lives were very affected by abuse, but you have done really well for yourself all things considered, and I love you very much. The family are grown up, they all have their own lives, they have to go to work and look after their lives and, in a different family we might live close to each other. It is really sad that we are all separated by time and circumstances, but you are very loved. You just can't feel it because your mentall health gives you a lot of self loathing, and you have a lot of time on your hands to dwell on problems. Just because you can't feel it, and you don't see people, it doesn't mean they dont love you. (repeat) If we lived close together you would see and feel how much everyone loves you.

(But that one is really hard because our Mother resents my brother and she complains about him constantly, she has created a really toxic situation because she does actually hate us, her kids...or "our father's children" as she calls us.)

TOPIC: Someone did something to my stuff/house/garden and its dead/broken.

Response: I think YOU did that and forgot about it so, have a think: whats more likely....

a) someone came into your yard and put the shovel in the wrong spot/killed a plant/broke something or....

b) YOU accidentally did that without noticing, or it was just bad luck/worn out/end of time, and you are blaming the outside world but I think its a lot more likely that it just happened and your brain is telling you a paranoid scenario.

The saddest thing is he was so abused that all of his delusions make sense from historical events.

But the reality is he is now living with complex MH issues.

Our mother will say, "stop it, thats not true, you're deluded, keep going and you'll go to psych ward"

I say "OK I will listen to you, but I don't believe what you say and I will always turn it back on you so that you get to talk and be head, but also you don't get to create delusions"

More often than not he will blow off some steam then settle into talking about his life, and I just listen to him talking about his life as if he is unaffected. He IS a normal person, he DOES have abnormal thoughts. He IS hard to deal with, he DOES deserve recognition and support for his life.

Thats my take on it all.

In private I grieve for my brother and all he could have been, all he was. But I also take the view, "it is what it is" and if I deny reality, try to wish things were different, I deny myself and my brother to have a genuine and loving relationship.

We grew up together, we share a similar sense of humour, values and things we enjoy. I always remind myself that I'm stronger, wiser, have more in my life and it's a one-way street of a relationship. My brother will occasionally attack me or try to insult/upset me, I just say if you're going to take your problems out on me I will ignore you for up to three months and you'll be all alone.

I am the only person in his life who keeps him on the straight and narrow. NDIS treat him as a stooge, family treats him as a novelty. I treat my brother as a soul who is in a difficult existence, and needs strength from other people, requires me to be there for him, and as I love him I will always do that for my brother. He enjoys a fight and I will fight back with him, like many people he wants to have a bit of argy bargy to feel strong and then he simmers down. People hear us talking and think, WTF! But we have our own unique language, we call each other rude words, we get those theatrics out of the way then it settles down to "angry and lonely person who is ashamed and outcase from society vents and chats away and is listened to by his sister who always builds up his good side".

After he fights or screeches I always tell him he's put up with a lot in life and is an amazing and strong person whom I love a lot. I would be sad if he died, and the day he dies will be the saddest day of my life because my best friend won't be there to talk to, as he always talks about dying or "When I'm dead". i also say, did you know I will tell you the same thing even if you dont fight and carry on? Youre like a cat scratching a couch, trying to shred away but all you want is a pat on the head."

He just goes quiet then as I have called out his BS, then quite predictably he will turn it round that I have this and that and he's hard done by.

I agree he's hard done by but he is doing well, all things considered. We hang up the phone and have a similar conversation in a few days, or a week, or a fortnight. He will predictably ring my phone then say a predictable complaint. I say, THATS ENOUGH OF YOUR BROKEN RECORD, WHATS GOING ON TODAY? ........!!!! just to save my time and headache.

I hope all of above is not too much all about me but it's how I stay in control of the deluge and how I stay LIKING my brother. Hes not a big scary out of control person, he's a cartoon character who replays the same show with a few new twist and turns every week.

Hes not a boring angry whinger, he's a person who is burdened by so many problems they overflow constantly and he needs help to stop drowning.

I am not pitiful for him nor mourning who is not, I love having a brother who trusts me to open up and relies on me to sort out his BS.

I don't resent the time he takes up, I'd rather be listening to his real dramas than watching made up dramas on TV.

He's not hurting my feelings or "making me angry", I have detached enough over the years to make sense that he's "a person so angry at the world and the people who abused him, that he must feel so bad inside, he carries so much shame for what happened to him, he didnt get justice and hes just like a kettle whistling loudly until the pressure dies down".

All of that makes it relatively easy to deal with him, appreciate him and love him.

And I hope you can find the same or similar understanding for your own relative.

There are concerns in the back of my mind when we are in the same space that he MIGHT get a delusion and try to hurt me, I don't sleep easily if I stay over at his house. But, I also think that fear creates fear and that I dont want to live with fear nor keep my brother at a distance. I just tend to observe closely and ensure that he remains relaxed and I make sure I act very relaxed, never doing something to trigger fear or "make myself a scary/negative influence".

If he 'arcs up' I put him in his place, he always settles down. I have said, dont be ucomfortable because I'm here - you always beg for visitors - if you carry on Ill leave and you'll be all alone again and I'll never come back. Instantly he realises that his anxiety from having a person in his house will bring about what he most fears, and I bring the conversation back to something nice and he loves to have a visitor, ESPECIALLY IF THE VISIT IS ALL ABOUT HIM AND FEEDING CONSTANT PRAISE INTO ALL HIS STUFF AND HIS HOUSE AND HIS STORIES AND HIS CHATTER!!!

Yes its exhausting but it doesnt happen too often as we are painfully distant. I get to be the celebrity every day in my own life, I go to his house so that he gets to be the celebrity. Fair is fair...........!! Everyone wants to be loved and, most of us have no shortage of it. For people who are starved of love and affection - whats wrong with giving heaps of it at once?

Isolated people cling onto 'someone visited me 10 years ago and we ate cake and did gardening'. I want to be that rainbow of happiness for my brother. He doesn't have many rainbows of happiness, it costs me nothing but a bit of effort to do that for him, and that's fine by me.

I hope you can come to comfort and feel free to write back with any scenarios about your relative, if it helps you out. I am busy with work but in my spare time I am always happy to contribute to the forums and uplift the greater wellbeing of our world. Once upon a time we all lived for each other, now we all live to escape each other thru digital media etc. And we wonder why there is a mental health crisis in society? We need to be there for each other, strong and weak, great and small. As I have people who are there for me, I try very hard to be there for others, it's the "brotherhood of mankind" or, "the network of all people who need each other and life is better for all when we have trust and truth between us". Its the mistrust and mistruth that puts people down the diffucult path, it's the trust and truths that heals it.

Have a great weekend.

Wow wow and more wow. That's powerful. I learnt so much from your post. Thank you for sharing. I even added your post to my 'favourite' list on SANE @Sugarshack

I hope it's okay I tag you in when I see others who may require this insight when caring for someone with schizophrenia?

Hello @tyme , I am very flattered and thankyou for your generous support of my post.

If the information can help anyone I would love for you to share it.

Regards from SS

It is a very unknown area for me, and I can see how may carers come through wanting to know more. Hence I really appreciate your post. It is so real. So authenicate and so easy to relate to.

Thank you, thank you, thank you! @Sugarshack

Wow @Sugarshack , you have blown my mind. I could not reply straight away because there is so much to process in what you've said, so much that has hit home for me. Thank you so much for the time you have spent giving your detailed, deep, and honest perspective. I need to stew on it more, but thank you thank you thank you 🙏

@Banjo123 I'm glad to be of some assistance and, that post is always there to reflect on if needed/wanted. Feel free to ask for any other perspectives and.......

NDIS.......without opening a very difficult and complex can of worms.....let's just say that it's fairly obvious they pick and choose the easy cases and they tend to be errmm conveniently lacking in commmitment to the difficult cases.

One thing that helps me "UNDERSTAND" and "TOLERATE" the NDIS system is this:

1. Once upon a time, health professionals underwent extensive training and had a fairly relgious based culture of wanting to help and assist people.

2. Politics and demographics changed so that extensive training was reduced into fairly basic training with very little transmission of knowledge from the oldschool workers who delivered results by hook or crook, to the newschool workers who simply do not have the same level of grit and commitment to a very hard job.

3. Politics especially, has made it that NDIS workers are largely made from people who have to work in the industry, rather than people who WANT to work in the industry.

4. It is an industry, and some of the great controversy has been about big business vs needs of clients. (I refuse to expand on this detail as I do not wish to undermine the efforts made by any 'good' workers/companies nor deny care to any person who receives any level of care).

5. In society, it has become fairly epidemic that underequipped, well meaning workers have suffered physical attacks, mental breakdowns, emotional breakdowns from being placed with high-needs clients and not having the training, resources, etc to deal with severe and complex issues.

6. That all of this tracks back to POLITICS of care where people are seen as a cost and a problem, rather than funding being seen as investment in the total wellbeing of society.

7. That rorting, scamming, misuse of resources given on a basis of goodwill tends to undermine all the notion of goodwill.

8. That advocating for people is inherently difficult and that quite often, "barriers and tests" stack up to feel really defeating.

One of the things that I do to maintain peace is to think "most entry level people are doing the best they can with relatively limited resources".

"Most managers are responsible for checks, balances and budgets which are dictated (GRR) by finances more than the day to day reality and emotions of life".

That COMPASSION FATIGUE is very real and affects all people, that it's root is "I care/cared so much that I can no longer display or give extra care".

That it outright sorta hurts to feel powerless and that "I have so much and the other person has so little, and needs so much" ----> "The other person's life is theirs, and I love them and give them grace by accepting that their life is very different to mine, and that does not change my ability to be a tall tree relative to an angry possum." That you/me/everyone is entitled to their own feelings and conflicts and can only do so much at any given time.

One of my coping methods is to turn my anger and sadness against "the system" into advocating for change. To give physical and financial support to charities. To constantly educate people, advocate for disability rights, human goodwill, the network of humans. I dont really like or respect people who live a "selfish, material" existence. Maybe I am jealous, maybe it's true that MY PEOPLE are the battlers and strugglers and I will never relate to the other type of people. That where possible I engage with politicians and community groups, to constantly advocate for systemic change and to support the works of people who actually care and take action, as it's too easy to get angry about what isn't done than it is to keep applying political pressure and to honour the ordinary people who do great works.

Point being for 20 years Australia has sold off it's core values as quickly as it sells cheap ore or downgrades the quality of life in a race to the bottom of global politics.

NOPE! Boycott chain shops, boycott crap products, boycott stupid concepts, and put all energy, effort and dollars into enterprises that make our direct society function well - at risk of being cheesy when I spend money at the LOCAL grocery, everything costs more because they don't have AI, they do pay staff, they do unload trucks by hand. When I save a few dollars at the big place, I am feeding into everything that undermines the actual day to day lives of humans who lost their jobs when the robot machines came into the grocery industry.

Ugh its too complex but, using that energy for those things stops it piling up in my body as to THIS PLACE SUCKS AND IS GETTING WORSE! I can say, I choose to focus on the good things and I am doing my level best to not only support those good things but to influence and grow the grassroots things that create a strong society directly around me.