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Something’s not right

aussieboi
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At The End Of My Rope

I am at the end of my rope.

I am a carer for my brother, who has a diagnosis of Schizophrenia.

He's gone off the rails over the last three months, and I am just not coping with him. He has such extreme behaviours.

He has stopped taking his medication and believes he is not sick and thus does not need it. When I call the Adult Community Mental Health Clinic, I am met with buck-passing and just general unhelpfulness. With the mantra of what's in the best interest of the client.

I call the MHERL line and am told repeatedly if I'm in danger call 000 otherwise there is nothing we can do".  So helpful.

His mental health support service through the NDIS has also ceased support services due to his recent behaviours and his extreme experience of reality which have put his support workers in danger.

He is quite dangerous when he is not on medication, and I keep telling his nurse/case manager, but he just does not listen. I am worried he will hurt somebody. What do I do? It's just ridiculous all I hear about is what's best for the person with the mental health issue under all this new legislation.

I understand people with mental health issues need and should be afforded the same rights as everyone else, and that they should have a say in their treatment. I believe that 100%. But it is not always practicable.

My brother has withdrawn his consent for me to speak to his doctors and the rest of the mental health team, which is just the last straw.

He is mentally and emotionally exhausting, and I have my own family and own employment which is all suffering.

What is the use of the mental health system if it makes people worse? What is the use of a mental health system if they enable his mental health condition? And make him more unstable with a mental health nurse who does everything he can to avoid talking to you.

What happened to help and assisting somebody before it becomes a full-on meltdown and episode? Why do services wait till the very last moment to act? 

The mental health system in WA is a complete farce.

5 REPLIES 5

Re: At The End Of My Rope

Hi There, I read your post and feel for your situation. I have a teenage son with Boarderline Personality Disorder and it's so hard caring for loved ones and not getting the support you need from the health system. My son is in a private psychiatric hospital for a 21 day program, we had a meeting this morning and the head nurse wanted to discharge my son for some verbal comments he made to one of the staff members who triggered my sons anger outburst. I literally had to fight with them and remind them that they are working is a psychiatric hospital and they are there to help my son and if my son was to be discharged that wouldnt be helping him at all. I'm so fed up with the health system as well. Your brother needs to take responsibility for his actions and apologise when he's done the wrong thing, I know it's easier said than done. Or give your brother an ultimatum that he needs to follow your rules if he wants to continue living with you, that he needs to make some changes and if he can't then unfortunately, you may have to find him somewhere else to live, but always let him know he's welcome back anytime as long he's willing to follow your rules which means taking medication and doing therapy. I found out when my son refused to take his medication he was self medicating with other substances, and this could be happening with your brother as well. You should try and find out why your brother doesnt want the medication, then deal with that reason and change meds if you need to, he may be having some side affects that he didnt tell you about. You need to get the control back, it's very hard work, and draining, no one really understands unless they are living with a loved one with mental illness. Best of luck, I hope things get better soon.

Re: At The End Of My Rope

Hi @aussieboi  and @B_01  I have schizoaffective disorder and a son with multiple diagnosis including schizophrenia but am lucky that he accepts he needs his medication even though he still hears voices and is delusional at least he is not a danger to himself or any one else. Unfortunately the case is for adults unless they are a danger to themselves or others they cannot be hospitalised BUT compare that to the bad old days where people could be locked away at the whim of a parent etc I know which one I would choose. There is nothing fair in this situation. I feel for both of you. I, like my son take my medication because hospital scares me and I dont want to go back..... aussieboi if you feel threatened call the police and have your brother taken to hospital as many times as it takes to have him properly looked after.  In the past we had the police on speed dial for my son to take him to hospital as he was violent and out of control but as I say that is in the past when he was unmedicated and so unwell. Good luck to both of you I really hope both of you experience some peace in your lives. greenpeaxx

Re: At The End Of My Rope

Hey @aussieboi

You're definitely not the only one to feel very stuck in your support role when someone is in crisis and mental health services are saying it's not at the point where they can intervene. How are you managing for now? 

Re: At The End Of My Rope

@aussieboi 
When you get to the end of the rope, you may find a life raft.
I don't know your full situation or what it's like for you 100%, though,
I am someone with lived experience and feel that I can relate and understand what you are going through on many levels, both for yourself and your brother.

You are correct in your evaluation of the mental health system, and that is all going to be reformed and changed before too long.

From a lived experience perspective it is traumatic just to deal with the incompetant system.
I won't talk too much about all of that in this post, though I suggest that you read my other posts if you are interested,by going to my profile and previous posts.

It's important to try and place ourselves in your brothers percpective here.
For your brother, I imagine he'd be up against alot, knowing the system, no-one would really understand him yet he'd feel entrapped and "on a leash" to it and anything he'd talk about would be automatically interpreted crazy and automatically dismissed, if he shows any signs of emotion or fear then they will just try to use that against him to stick more labels on him out of ignorance and lack of experience or knowledge of the journey and mind; of which can only be gained by experience.

Medication may or may not be suitable for him, everyone is different. The right medication can be a life saver too so please don't misinterperet what i'm about to express.
Now, there are a number of reasons that he may not want medication, it can be very traumatic to be abused and used as a guinea pig for pharmaceutical companies and thier experiments, many medications feel terrible, in my experience it's poison quite frankly, and after going through the whole journey we discover that it's not needed anywhere near as much as they deal out to people and if only the psychs and "professionals" told us from the beginning that we are not our thoughts and if only they taught us self enquiry meditation, to help us recognise and see that we don't have to buy into any beliefs and thoughts of the mind then most mental illness could be avoided altogether.
So obviously they either don't know the basics of the mind themselves, or they are corrupt.

In my experience I believe that medication is only needed in extreme situations for example: when one is crippled by fear and anxiety unable to listen and the person is completely losing it, all fear and anxiety comes from a future oriented mind though which is drilled into us from early child hood through education systems and media, this can be healed with meditation, though doing meditation + medication can be difficult because the Medication can make the patient lethargic, docile, and numb.
When people try to control and tell him what to do, it feels like an attack, for the parents and the carers are also brainwashed/programmed by the system to give far too much significance and authority to academic qualifications and the "professional opinion", but that's another topic for another day.
When I threw away the labels the so called "professionals" tried to stick on me and I stood in my power and said "no! i'm not buying into that".
That's when I truly started to get better, because I chose to no longer identify with the one who was ill, the one with this label and that label stuck on by bullies, and identification is the key, of how he defines himself to be.
My point is that a diagnosis is not an ultimatum as they suggest it is.

As you would know, the human brain is maliable and changeable, i.e "neuro plasticity" , it is not a solidified structure and we can change our own brains, to write our own program of who we are, to put ourselves in the driver seat of our lives and from my view I would say that is precisely what your brother is trying to do.
Your brother's behaviours may also be upset and angry at loved ones because he feels misunderstood, and whenever he get's the lecture it triggers him, because on a deeper level he would know whats going on but perhaps he's just unable to put it into words and so he chooses to react uncontrollably because it's the easier choice than explaining everything which can be difficult especially when he is in the fog, so it's also important not to take anything personally even if he directly means something personally because it's just a state of unconsciousness and that is really what it's all about, moving from unconsciousness to consciousness.

The deeper I went, I could also see that I was responsible for the situation and life I had created, and also that I wasn't going to play the victim, regardless of a failed system, instead I set out to educate them now and to improve things.

Do not fear, this is a rough storm, but after this period of transformation everything will change for the better, no storm lasts forever and every crisis is an opportunity to enhance our lives.
It is the pressure upon the coal which makes it into a Diamond.

I hope that this is helpful in some way,
Namaskaram

Guiding_Light

Re: At The End Of My Rope

My brother was diagnosed with schizophrenia when I was a teenager, and I am now in my fifties. It took nearly 15 years for him to get to any kind of stability, and he will never be "well".Maybe he has bipolar disorder as well as schizophrenia? My brother does, and once he got medicated for that too, he stopped going in and out of hospital every year. Before then, when he was in the early stages of bipolar mania, he would feel (and sometimes convince others) that he was "better" and go off his medication. (Many "well-meaning" people would encourage him in this, which they would'nt if he was diabetic, or asthmatic.) Then after a two or three months it would be just as you describe it. I can only offer suggestions from my own experience. Put yourself and your needs first- now and always. Your brother may never benefit from your care and concern, but there are others who definitely will- especially yourself! I love my brother dearly, but I will never sacrifice myself to his illness.I put into our relationship only what I can without damage to myself and my other loved ones. Our mental health treatments and system are woefully inadequate, but there is no ideal alternative. Try not to allow the health system to make you the fallback line- if you believe your brother is likely to harm himself or others, you can demand crisis intervention. Schizophrenia is a terrible illness, and when severe it makes people behave in ways that are impossible to deal with effectively, even if they are trained mental health care professionals, that's why patients who are severely psychotic are heavily sedated in hospitals. It sounds to me like your brother is well on his way to a full-blown psychotic episode. So, you can try calling some shots of your own. Doctor's etc  won't talk to you about your brother? Maybe you could tell them that without full information you  won't (you can't) continue to care for your brother, that you won't remain as an emergency contact for him, and that they will have to come up with alternative arrangements. I may sound harsh, but exhausting yourself will not help your brother get better,  only the medication will.  I notice that Anne Devison is mentioned on the Sane website. I remember reading about her experiences just after her son died. She is an important example that all our love and care may not be able to save someone who is really ill. Just as we can't do much to help someone with lung cancer who keeps smoking, or someone with liver trouble who keeps drinking, we can't help someone who has schizophrenia who won't take medication. So help those who you can, especially yourself.  

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