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Jia1342
Casual Contributor

New to forums - looking for a bit of insight and respite

I've been reading quite a bit on this forum and am hoping that writing things out will help bring some sense of acceptance and coming to terms with the situation at hand. 

I've just finished year 12. Starting uni this year was always something I looked forward to, but now, it only brings me sadness to think that this year, the year both me and my sibling would have been at uni together will never come to fruition.

 

My sibling who is three years older than I am, went into relapse. They were diagnosed at 16 with schizophreniform as the symptoms were mild and lasted for a short period of 6 weeks from start to finish. This came as quite a shock to my family and I. There was no family history and my sibling has never used drugs or had a glass of alcohol in their life which is thought to increase your likelihood of psychosis etc. Since then, thanks to medication, the symptoms have not come back for almost 5 years - that is, until they abruptly stopped medication for 10 days. We didn't realise this until they deteriorated quite drastically, way back in November. Although medication was quickly resumed, it appears that they've developed a resistance towards many antipsychotics. They've been admitted to an in-patient unit for two weeks now, medication has changed again, but there isn't a single sign of improvement. 

Having read some of these forums, it is incredible to see the resilience and strength that it must take to assist someone living with a serious mental illness. This relapse has really taken an enormous toll on my family and I. It feels very much like I've lost someone important in my life; not physically, but emotionally. Relapse has changed their personality a fair bit. A sibling, who, a few months ago was outgoing, bubbly and showed me all the love and care in the world, so cruelly snatched away, so much so that they almost antagonise us for taking them to hospital when they were so clearly unwell. I know that it's the mental illness that causes them to behave this way, but it doesn't make it that much easier to handle, and there doesn't appear to be an end in sight. 


I'm not sure if these questions can be answered but maybe someone with some experience may know. Is it really possible that after one relapse, someone may never recover to their baseline function? What happens when you have cycled through 3-4 medications with no improvement? If someone isn't well enough to leave hospital, what happens after that? They can't stay in there indefinitely, but taking them home would present considerable difficulty and danger. How would this be approached?

 

thanks guys

6 REPLIES 6

Re: New to forums - looking for a bit of insight and respite

Hi and welcome to the forums @Jia1342 👋 ..... I am glad you have found us and have drawn some strength from the amazing carers you have been reading about here.

 

What a terrible set of events you have encountered with your beloved sibling ..... my heart goes out to you ..... you clearly love them very much and it is so hard to sit back without being able to do much other than care ..... but it does help ..... it helps you in ways that you probably are not feeling at the moment, but it does.

 

I am going to tag @outlander  here, because she is one of our younger members who is a carer, but with lived experience as well.  Part of the support of the forums is the connectivity ..... having forum friends here ready to listen and understand, based on the experiences that come through our individual, and communal situations.

 

My experience hasn't been in the same direction as what you have encountered, but I have sat back, unable to help someone I loved very much, as they couldn't accept their unwell state and it has affected our lives very badly ....  at the moment ..... but there can be strange and mysterious paths to recovery, and sometimes people need to land at rock bottom before they can accept the help they need.

 

Here and listening ..... good to meet you.

Re: New to forums - looking for a bit of insight and respite

Hi @Jia1342  and welcome Heart 

 

thanks for the tag @Faith-and-Hope  Heart 


firstly well done for reaching out, I know its not easy to do so I commend you on that. Things sounds very tough for you and your family at the moment.

Unfortunatly sometimes mental health illnesses can strike without warning and sometimes without a reason so it makes it very hard to manage along with coming as a shock like youve mentioned.

I am a young carer myself for a loved one with early dementia and im also someone who experiences mental health issues myself so I can see from both sides and am happy to try and answer any questions and listen to any concerns you may have.

 

It is very difficult to watch our loved one go through something and not know how to help, what to do and also how to maintain our relationships when it seems they are totally different people. Often they will take it out on those closest to us even without realising it and seems like your sibling may be doing the same. I would suggest that you and your family ask for support for yourselves as well. The hospital should be able to help you find carer support groups for your siblings condition, or possibly suggest a psychologist that you could speak with.
Carers Australia and Young carers australia have quite a few resources that might be helpful to you. They have different services based in each state and also provide phone counselling as well.  Sane's helpline is also very helpful so i reccomend calling or connecting with webchat anytime you need as well along with Kidshelpline
Do you think youd be comfortable in speaking to your family about accessing some support, speaking to the hospital social worker or even having a chat with your gp about getting a mental health care plan drawn up for yourself?


Another thing id also suggest is to practice a lot of self care especially when things are very tough, find those good moments in each day and still try to do something for yourself. They dont have to be extravagant, it could be something as simple as going for a walk in your favourite place, having a cup of tea (or your choice of drink) outside in the sun, meditation, journalling, reading a book, arts/crafts. Do you have things that you like to do?


Your questions are definently valid and your welcome to ask as many as you like, we will try our best to answer and share our experiences with you.
My loved one hasnt been in hospital for their mental health however I can speak from my own mental health illnesses.
Unfortunalty MH is unpredicatable in nature and varies for each person and the way it gets treated. For me, yes one relapse hasnt really allowed me to be the person I use to be. While I still might seem abit the same, its very different for me in the way I feel, think, act/react things and more even with medications, and support from professionals. I have been on many many different medications including mood stabilisers, antipsychotics and antidepressants both individually and as a combinations (ie one mood stabiliser and one antidepressant) but I havent had much success with them either. Currently Im almost out of options (thats how many I have tried out), sometimes medications arent an answer though depending on how each individual reacts to things like counselling sessions or even group therapies.


Can I ask if your sibling has tried any forms of counselling and if you might know what methods (such as CBT, DBT, ACT etc), I may be able to suggest something but wouldnt want to give you a list if theyve already given it ago.

For someone who still remains quite mentally unwell longer term, things like the NDIS may be quite helpful in getting more permanat supports in place. It can take a while to go through the process but it might be worth speaking to your family about having a look into it. With the NDIS your sibling can access things like a peer support worker and/or support worker that can be with them while your at uni, your family is at work or you simply just need abit of break.
You can find more information on the NDIS here.

 

In saying all of this, there is hope. it does take alot of work, help, support, and self care but it can get better. please look after yourself as well, dont be afriad to reach out for any supports you may need. 


Please feel free to have a look around and join in where you like. A forum tip is to put an @ before a members name and itll tag them for you, this way they receive a notification your talking to them.
Hope this helps and again welcome! Feel free to tag me anytime and ask any questions.

Re: New to forums - looking for a bit of insight and respite

Hi @Jia1342 

 

There are a number of resources here on the forum that might be of a help to you. 

 

Understanding psychosis , 60 tips for helping people who have schizophrenia , Sane fact sheet - schizophrenia .

 

As with most conditions there is variability in relation to recovery and hopefully your brother has nominated a person as a caregiver in relation to hospital communications, his treating team are the ones best able to give what they feel is a realistic expection of functional recovery.  Without direct permissions, general information only can be given, however they are able to listen to anything the family would like to pass on to them.

Re: New to forums - looking for a bit of insight and respite

Thanks @outlander , @Former-Member and @Faith-and-Hope for the info, resources and help. Will look into some of these options. Right now, it's not looking very good at all. Sibling is under the Mental Health Act thing so we cannot take them out of the hospital. Unfortunately, the treatment there is sub-par. The other day, the nurses could not read their own charts and there was a significant mix-up with the medication. Communication is poor, and it's only adding to my sibling's distress. Imagine being given different tablets at different times of day that look completely different 24/7! Of course, mentally ill or not, one will become suspicious given the circumstances. They're now in high care and seclusion, we've been refused visits too. The doctor says one thing and the nurses action something entirely different. 

Their tribunal hearing will be in March but even then we might not be able to get them out if a treatment order is firmly set. It's just really tough, and it's being made worse by immense feelings of guilt for bringing them into hospital. There were no other options, but hospital treatment is poor. The other day my sibling said "you don't know what they do behind closed doors".  Obviously, given their condition, there may be things that they misinterpret as malicious, but there is no doubt in my mind that at times, my sibling isn't being treated with the dignity that I feel that they should afforded. Isolation only makes them more agitated, they're desperate to get out and there's not much we can do to help the situation.  Hopefully they'll get better, but none of the medication seems to be helping in the slightest. 😕

Re: New to forums - looking for a bit of insight and respite

It can feel very disheartening @Jia1342 .... and the forums are an important coping support when things seem so open-ended and there is a lot of treading water involved.

 

I was struggling for a long time with my now-estranged husband's unidentified condition, and have been with the forums for four years now ..... I can honestly say I don't know how I would have made it through without them.

Re: New to forums - looking for a bit of insight and respite

Feeling a bit defeated today. Just been told that its definitely treatment resistant schizophrenia. They'll have to use a last, last resort antipsychotic and electroconvulsive therapy. How does one's life change so drastically, so quickly. From appearing to be so 'normal' to being this unwell. Talking to a few friends right now  but it's quite difficult to open up. Sometimes I wonder why illness has struck them and not me. How I wish it was the other way around. Does anyone know what happens if ECT doesn't work?

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