Friends, Family & Carers Forum

[jude]

Hi

I was given this site - late last night - in distress - whilst I was looking for a 24 hour phone line I could find to talk to someone as a carer not a lifeline - beyond blue - suicide line - I'm not suicidal - I'm desperate to connect with others who do a caring role for a loved one.  The walls of my dam burst last night and the floods of tears and hoplenesses poured forth without control last night - after finally getting my 21 year old asleep - after giving him all his meds and more if things aren't settling - I lay beside him cradling him like I did when he was a baby - knowing this is not normal - but what he needed to just get him to sleep - so his relentless, panic and anxiety leaves for the 14 hours he then sleeps.  Caring for my son through his major depression onset at age of 15 - I always had hope things would get better - I provided as much as I could that was on offer to help him through - it never improved - going through a messy divorce - of control for another three years - found us having to admit my son into a private mental health clinic under his private psychiatrist.  Who doubled his medication that changed him into a euphoric state within two days - then they discharged him without follow up or discharged summary back into my care.  But guess what he was over the age of 18 by then - and I had no privy to his treatement. Long story short 4 months later he suffered seizures in our home that led to a heavy fall down our sloped shared driveway - I found him close to death - and administered first aid -whilst waiting on paramedics - who when arrived - called for back up - and called the hospital to prep them what was coming in.  I backed up the driveway when help came with his blood all over me - witnessing them bagging him and taking him away.   He was flown two and half hours south of where we lived for life saving surgery.  Induced into a coma with not much hope - he recovered - three months down south - away from my business, my daughter, my friends - we finally came home.  He can walk and talk he is lucky - but he has a severe frontal lobe brain injury and since - been disagnosed with Bi-Polar 1.disorder.   Three months ago as we were battling with human service for a carers pension, disability pension for him - me trying to keep my business afloat to provide income - he suffered a psychosis- was locked up into a High Dependency Unit Psych Ward - the clever Dr's wanted to rule out a brain bleed from his brain injury before making any further diagnosis - he suffered - claustrophobia when they tried to do MRI - because claustrophobia is not a proved medical condition - he was put under a mental health act order and treatment order - to provide a general aneasthetic to him to give MRI - we had to wait a week for the tribunal meeting. I said to Dr well if he has a brain bleed he'll bleed out before then!  NEXT!  he was transferred to a locked psych ward - I stayed with him - a long way away from home - so I could be his voice and brave for him whilst he was on unstable ground.  He was discharged back into my care from a locked psych ward late on a Friday afternoon back North against my knoweledge and wishes - even though he was still not stable - but they needed beds - and I was such a good carer they trusted discharging him back into my care - with 8 more new medications - at a huge cost to my own mental health. Since 2nd June I've been caring for him with intensity - I now need to go through process of closing my business, finding a home for me and my children.  Have been finally approved for financial hardship under pressing circumstances and will get a little super released - have all the systems in place - but it is all taking so long to prooooooove!  and still no respite = no availability - I've locked myself away in a room today - ignoring my sons needs - which is cruel but only way I can get a little respite.  x

[Janna]

Hi @jude,

I'm so glad that you've reached out to the forum for some support.  Your story sounds unfathomable and you've written it in a very poignant and touching way.  I can hear your distress and sadness.  I'm so sorry that you are going through this.  It must be so difficult.  You are most definitely going through an extremely difficult time and I can only imagine how stressful and all encompassing this must be. Things for your son don't sound great and I'm pleased that despite the ongoing hardships you've still managed to find the strength to power on through this adversity.  I wish I was able to offer you some solution or provide you with some tangible comfort; but I can't. What I can do is acknowledge you and your situation and give you moral support.  I have an 18 year old son who has given me a lot of grief and I can fully relate to the place you are in.  It's only human and normal to break down under such pressure so go easy on yourself and give yourself permission to do that.  It's very healthy to let all that stress and grief out.  What you have been trhough with your son was very traumatic.  Pariticularly having to administer first aid.  When dramatic things like that happen we kick into an adrenaline based mode of operation and that tends to keep us going strong for a while.  However, when that adrenaline stops and things quieten down it's very normal to break down, feel our emotions and cry.  I am so sorry to hear that your son's MI has resulted in you having to give up your business, but I fully understand how pervasive and all consuming MI can be.  Although my son hasn't forced the closure of a business, he has restricted my ability to work and thereby impacted significantly on my socioeconomic situation.  Getting through our beurocratic sytems is a nightmare +++ and not for the fainthearted. I'm happy to hear that you've managed (finally) to get somewhere and I hope that this helps ease your situation.  I want to stress the importance of looking after YOU in all of this.  The one thing that is going to get you over the line and keep you strong is looking after yourself.  Although that may be easier said than done, I urge you to get some sort of psychological support for yourself, and make sure that you do some things (even if their small) that give you some respite or are just pleasurable.  When things become overwhelming it's really easy to swirl away into that overwhelmingness and forget to look afer ourselves.  It may not come naturally, but you need to do it in order to stay sane.  It doesn't have to be much, and may just be giving yourself 10 minutes of time out intermittenly to do something you like.   I fully understand the difficulties you've been through and applaud your tenacity, strength and resilliance.  Well done!  You are incredibly strong.

Try not to let the situation get the better of you.  Allow yourself to get emotional and feel the situation, but don't allow this to dominate.  Emotions are very strong and it's very easy to fall into that maelstrom.  Give yourself time to feel but also give yourself time away.  It's all about balance.

Keep posting and offloading.  It helps.

Take care
Janna ❤️

[Former-Member]

hello @jude @Janna

I wanted to tell you how brave you are. Talking about very raw emotions takes great courage.

Your love for your son literally jumps off the page. What a strong bond you both have.

Words are meaningless in your situation.

You have both been tested continually.

I have a son who is very unwell mentally and not receiving any medication or help as he believes that he is well and most others are unwell. This fact has led him to move away f rom everyone whom he knows and not divulge his whereabouts. Finally I have texting contact with him. This becomes unbearable when his delusions take hold.

I feel at my wits end and so helpless with his situation.

When we have a child so very unwell and we cannot make it better for them, our pain becomes insurmountable.

I am not trying to diminish the extremity of your pain. I am not trying to compete with anyone.

I just want you to know that there are many of us experiencing suffering due to lack of help and understanding within the realms of the medical world.

Some of us write on here in different styles about different topics.

I find when someone responds to me I f eel briefly that I have been heard, noticed, acknowledged, validated.

Please keep writing on here and allow others to hear you, empathise with you.

There are no solutions, promises, magical cures only worthy people hearing that you are suffering so.

[Lunar]

Hello @jude

A very warm welcome to the forums, thank you so much for sharing your story, like @Former-Member and @Janna said so beautifully, that you are very brave for reaching out at this point that must not be easy at all.

I am so sorry you have not received any respite as yet, have you tried getting extra support through: Carers Aus

and

Mental Health Carers Aus at all?

They also have helplines that can be helpful for those times late at night when everything seems incredibly overwhelming and they have that extra knowledge around support for families and carers rather than lifeline, beyond blue, etc.

Keep reaching out here and looking after yourself, we are here for you

Lunar

[Shaz51]

Hi @jude,

I'm so glad that you've reached out to the forum for some support

wondering how you ae going today my friend , love to hear from you

[Former-Member]

How are you and your son? @jude

I saw that you responded to another thread reaching  out to help.

I just want to let you know that we don't want you to feel all alone with your situation

I know that I feel that and my son doesn't live with me

he still lives inside me though...

sending you hugs xxxxx