Help on what to expect and what to say

[Sukiwuki]

Hi all

My 46yr brother suffered a drug induced psychotic episode in Oct 2020. He lives in New Zealand and I have not been able to make it back to NZ due to covid. I am finally flying next week.

He is currently living with my mother as he still suffers delusions (his partner is organising someone to get rid of him, he sees codes in pictures and strange files on his computer and phone. He's scared of leaving the house because people are after him)

He is on medication but I think they are still trying to find the correct one for him.

He has not been very open to seeking psychological help. He is aware that his brain has been affected and that his thoughts are scrambled but he believes that they are all real (which of course to him they are).

My question to you all is how can I prepare myself to see my brother like this? How can I help him while I am there? How should I speak with him during his delusions? Should I try and distract him during delusions or get him to focus on something else ie exercise with me or play a board game etc? 

I'd like to try and build his confidence regarding leaving the house - even to walk to the end of the street or to the nearest park. What is the best way to try this?

I also would love to help him get professional help. I have been saying over the phone - what do you have to lose? He's not enjoying living his life like this, he's told me that. What have you found to say that is helpful and doesn't feel pressuring?

Any ideas and suggestions would be greatly appreciated!

I'm also aware that maybe I won't be able to help at all and need to be careful of not flying in and trying to fix everything!

I'm starting to feel anxious about seeing him and know that I will probably burst into tears as soon as I do as I feel so sorry for him.

[Former-Member]

Hey there @Sukiwuki,

I wanted to start by acknowledging how wonderful it is that you care so greatly for your brother that you'd reach out to ask for help in the way that you have. That's such a lovely bond it sounds you have with him. It's also pretty amazing that you're able to honour your own pain in this – watching a loved one go through mental health struggles can be quite tough.

The questions you've asked are all valid, and all quite common to the experience caring for someone living complex mental health needs. I share this in the hope that you'll know you are not alone, in fact there is a growing community of family and carers in our forums, and I'll tag a few of them here as they might be able to share common ground with you: @Shaz51 @Krishna @ShiningStar @Joonbug @maddison @Anastasia 

I'm a peer support worker here at SANE, so that means I have a lived experience of mental health, but I also have a lived experience of being a family member to someone who experienced a similar diagnosis to your brother. I'd be happy to share my experience here if that is something you'd find useful? Following his journey from the beginning to where he is now is quite amazing...there is light for us all, and for some, that light can be very bright. Let me know by tagging me like this @Former-Member and I can jump back in for a chat 🌞

Rhye ☘️

[Sukiwuki]

@Former-Member thank you for your message. I would greatly appreciate you sharing your experience. The more I can learn the better equipped I can be to help my brother on this journey. I know that he will come out a stronger man if he can get through this.

[Joonbug]

Hi @Sukiwuki , 

I can't be of much help, but I wanted to say that we can see how much you care by reaching out and trying to understand and gather resources. 

I have seen friends go through episodes and they are difficult to watch. 

I think your mother will definitely appreciate the respite of having another carer/support available. 

[Sukiwuki]

@Joonbug thank you for your kind words. Yes Mum says she is fine but we all know that Mums protect us from the truth sometimes. So supporting her as well is definitely on the cards.

[maddison]

Hi @Sukiwuki 

I'm Maddison. I live with someone diagnosed schizophrenia.

I really love how you have reached out here & I agree with the responses from @Joonbug   & inspirational @Former-Member.

Whilst it is difficult to give specific advice - as each situation & moment can be vastly different, & efficacy of strategies can also change moment to moment - the best tool you have, is what you have already expressed, that being compassion & unconditional love for your brother.

I can share some strategies that I engage, based on your specific questions. 

• Unless his delusions are putting you or someone else in physical danger, then avoid correcting him. Try to be an observer. It may not be your perception of reality, (& you can express that) but you also accept that for him it as real as things are to you. If he mentions things like 'people are after him'. Your response could be something like "that must be incredibly frightening".

• In terms of what to expect, again it is difficult to answer - I would say 'expect the unexpected'. There may be times when you feel overwhelmed, & things are a bit loopy, or you are living in a Twilight Zone. It can be confronting & heartbreaking.

Try to focus on the fact that your brother is still in there somewhere, even though his thoughts are confused at the moment. 

• You mention distraction. Probably the thing I rely on most (you are already on track👍) Boardgames, walking (music - singing, dancing art - drawing, painting, crafts, poems etc, movies)

I don't know where he is in his recovery. Motivation to go on walks etc could be exactly what he needs, or it may agitate him. Use your own judgement. 

Also, talking about yourself, anything you are interested in could be really helpful to get him out of his head & 'back to earth'.  

It is ok to feel however you feel💜 You simply being there will  be more help & support to him than anything. 

(Although it may not feel like it at times)

I know some other members can also offer tips. These are only my opinion. Maybe they will be useful. You have lots of support on this forum, including me!

[Former-Member]

I'd be happy to share my story @Sukiwuki, I hope it's helpful:

When my family member first got ill we (our family) naively dismissed it as run of the mill anxiety. It turned out to be a little more than that – their symptoms escalated in a relatively short period of time, which was terrifying for them, and extremely concerning to witness as a sibling.

I remember feeling scared and helpless, once they were assisted to find care (which resulted in an inpatient stay) we were thrust into a world unknown to us. Medications, involuntary admission, ECT, group therapy...all these terms were so foreign, and frightening at the time. Could they not just take a pill and things go back to normal? The answer to that was yes, kinda, but not for a while and not without a tonne of work on their part.

I also remember preparing for my first visit to the hospital – what do I bring? Flowers were no good, they weren't up for eating much, and couldn't focus to read. I so desperately wanted to bring something that could bring a sense of relief and comfort, and I remember choosing a colouring-in book and pencils. I'm not sure how much of a help that was to be honest, but as a family member it was important for me to try. What did help was our presence. They were so distressed and naturally scared, and I think just knowing that we were there was a tiny bit of comfort in some pretty dark days. So that's what I made sure I did, I showed up. The inpatient stay lasted many months, and I made it my mission to be there for them as much as they needed. I understand that may be tricky given your brother is in NZ and covid is a pain in all our butts at the moment, but I truly believe that your presence will be all he needs and the best comfort you can offer him.

After the admission my sibling took a long time to recover, and they were never quite back to the self they were before the admission, but what they were left with was a resilience that I've not seen matched by many. They have achieved a huge amount, both academically, professionally and personally, and they are living a life many would covet. Sure, sometimes they have their wobbly moments, but they know their triggers and they adjust accordingly. 

You mentioned trying to build his confidence by encouraging him to go for a walk etc, and I think that sounds like a good idea, so long as he has the confidence to do that on his own and it's safe for him to do so. Perhaps when you're over there you'll be able to get outside with him and support him in implementing that routine into his day. I also suspect a therapist or counsellor may be able to help your family out with suggestions, and I'm wondering if it might be worth giving the SANE counselling line a call – it's open Mon-Fri 10am-10pm and provides support to people living with complex mental health and those who love them. The number to call is 1800 187 263.

Lastly, please look out for your own wellbeing. Being a carer ,and/or someone who cares about a loved one experiencing distress, can be emotionally difficult. We must always remember to fill our own cup. If things feel a little overwhelming at times, know this is a common experience to many, but also please remember that there is support to help you through the journey too 💜

Rhye ☘️

[Krishna]

Hi @Sukiwuki and welcome to the forum. My daughter suffers from drug induced schizophrenia. My only advice is to not overthink your arrival in NZ as there will be no set way of how your brother will be. My girl during psychosis would be very frightened and compassionate calm reassurance that she was safe always helped to calm her down. Conversation was very limited as the voices she constantly hears makes having other conversations quite difficult so there was always a lot of silence. When I did broach a subject to hopefully talk about I did so in a slow calm manner, giving her time to think about it and possibly respond, keeping things calm and simple.Music is always soothing and a good distraction. I did manage to get her out of the house for short walks now and then but took calm convincing. She would spend a lot of time on her own in her room so I would pop my head in every now and then just to let her know I was there. Once again simple calm reassurance. It will be lovely for your mum to have your support and yes it will be heartbreaking for you seeing your brother unwell and I am sending huge hugs your way. We want to be able to arrive and fix this but all we can really do is love and support. Just letting your brother know how much he is loved and supported is good medicine and I wish you a safe journey. 🙏

[Sukiwuki]

@Krishna Thank you so much for supporting me. I truly appreciate it. I'm sure once I get there I may have more questions as each situation arises but until then yes I'm learning to expect the unexpected and also try to not have any expectations.

[Sukiwuki]

@maddison Thank you so much for your reply. I truly appreciate it. What a difference it is making having support from others who have experienced similar situations. I will keep you all updated whilst Im home.