I am the 21st century slave.

[21stCenturySlave]

No real point posting here but I really have hit the wall today and I was pointed in this direction by the offices of one of our esteemed former Prime Ministers.  It's Miss Julia Gillard's fault that I'm in the spot I am right now and so I wrote to her to ask for help advocating for me and my family.  She wasn't interested in helping but instead directed me towards the suicide hotlines and these pages.  It shows her lack of understanding of what her policies have done.  Killing myself is not an option for me, I have too much responsibility.

As the subject line for message says, I am a slave.

I am the 24/7 carer for my brother who has cerebral palsy, is quadriplegic, non-verbal, has one functional lung  and is subject to violent seizures that can put him in intensive care at a moments notice.  I last had a day off in February 2020.  I work minimum 9-5 every single day.  For every other hour of the day I am on call.  If the phone rings at 2.45am I have to be ready to jump out of bed, answer it and get to work.  I feed my brother, toilet him, exercise him and I am in actual physical contact with him throughout the entire day.  There's no choice on providing this level of care.  NDIS will fund for around 11 hours of care a week.   This is so that I can (and I quote) "go out and earn some money".  Well, maybe Miss Gillard can earn enough in 11 hours to support herself but I can't.

We can't even use those few hours of nursing provided though.  My brothers needs are incredibly complex and require an intuitive understanding of his needs that takes years to develop.  Without that understanding he winds up seizuring and putting himself into hospital.  He last saw a nurse 15 years ago.  Since then it's been almost entirely me.

I do this for free.  I used to be paid the princely sum of $300 a week by the Melbourne City Council but when the NDIS was introduced they stripped away all those supports.  Now all disability services go through them.  They are a manufactured $20billion industry built to support a legion of middle managers and one of the central tenets of their scheme is that no money should filter through to family's.  Since then I've worked for free.

 

[Sophie_M]

Hi  21stCenturySlave,

We're so sorry to hear about what you're going through; it sounds like it has been an incredibly tough and overwhelming time. Thank you for being part of our forums, it takes a lot of courage and strength to reach out for support and we are so glad that you have done so.

We really do hope that you can get the support you need and want so desperately here. Please don't forget that you can also reach out to our counsellors here at Beyond Blue 1300 22 4636 or Lifeline 13 11 14. Sometimes it really can help having someone to talk to...

We sincerely hope the online community here will be able to offer you some comfort and valuable advice and support.

We're here for you. Kind regards,

Sophie M

[quirkywords]

21st. Century so sorry you are overwhelmed by your responsibilities.

National careers may be able  to listen and help.

We work to improve the health, wellbeing, resilience and financial security of carers and to ensure that caring is a shared responsibility of family, community and government.

www.carersaustralia.com.au

i know people for whom NDIS works for them so it is frustrating you can’t get help.

look after yourself. 

[Summer Rose]

Hi 21stCenturySlave

The frustration in your post is palpable. What you’re experiencing is beyond tough and I’m so very sorry. Hugs to you.

I care for an adult child with a serious, chronic and sometimes disabling mental health condition and have battled through our nation’s broken and dysfunctional mental health system for over a decade. I know how it wears you down not to be heard and to endlessly suffer—and watch your loved one suffer—because there just isn’t enough empathy, integrity, resources or expertise in the system.

Couple of ideas to help you gain attention for your plight…If you haven’t already, write to Bill Shorten. He is the relevant Minister and I’ve heard via media reports that he is intervening in some individual cases. Wouldn’t hurt to approach your local MPs, too. (My local Federal and State MPs both once helped me with a State issue, regardless of party).

I’d also try to generate some media pressure. Virginia Trivoli’s morning program (ABC 774) is a good place to start. You can also approach The Age but try to pre-identify a journo who may already have an interest.

It’s also really important that you take some time to care for yourself. I know it seems impossible, but fearlessly guard half an hour for you each day. Then do something you enjoy—a walk, coffee, call a friend, meditate or whatever will work for you.
This is really important because I suspect you’re at risk of burning out. I’ve been there and ended up in a mess, please do what you can to protect yourself.
I will be here for you if you want to talk some more. You’re not alone, lovely.

Kind thoughts to you 

[white knight]

Hi 21st

I have little to offer you sadly. I dont know where to start nor finish. I'm in total admiration of you, what a great human being.

In terms of politics, city councils and the whole system of Governance, I compare it to a game, whereby we play and they play and it all adds up to "society". I feel your anger however, in this game we play, people in high places cant address individual cases. Eg Julia Gillard is unlikely to not have the qualifications to help you. Being an ex PM and current head of BB doesnt give here automatic abilities to assist the needy like yourself hence the better action to refer.

The other game if life itself and some people have drawn the "short straw". Yes, it isnt sufficient for carers to be slaves and indeed your description is not an exaggeration, it is apt. In every challenging situation I've faced I've ended up getting the best out of that poor situation. Yes, made an attempt on my life once when my marriage crashed, had two young daughters, then I recalled my fathers words "better a part time dad than no dad at all". That phrase saved me. So I left a week later and carried out being the best part time dad for the next 14 years until they reached 18. No one can take that away from me.

You wrote your post in a low point, but you display courage and dignity, two assets that make you who you are today. I have a couple of threads you might like to read, the first post of each. Feel free to comment.

30 minutes can change your life - Beyond Blue Forums - 154525

Motivation.....search and rescue it. - Beyond Blue Forums - 38279

TonyWK

[Learn to Fly]

Hi 21st,

Your post has been a huge eye-opener for me. It's just beyond me that things like this are happening in a country that is considered one of the most developed countries in the world. Shocking, sad, and true. 
I truly admire your courage, strength, and unbelievable resilience. I realise you are tired, frustrated, at the brink of having absolutely enough, and maybe my words won't mean much to you now, but I do think highly of people like you. 

I agree with Summer Rose and would also encourage you to set aside time just for yourself, daily, and stick to it no matter what. This might be easier said than done, but this is for you, and you alone. You need this. And yes, this might not be the solution to your situation but little "me time" in longer run might prove to be something that will give you a sliver of break, re-group, to take a few deep breaths in. This might or might not help but as I said before, this would be for YOU. You need much more than this but in the meantime, this might work.