Consumer

[Alessandra1992]

The times they are a'changing..it might be State by State, or Territory by Territory but many consumers and even mental health workers recall the asylums.. We are improving and the more we agitate and join up together the better our voices are heard..
Welcome back Gray..have you signed up with the Consumer and Carer register in South Australia?

[PeppiPatty]

Yes I did miss you....you have been on my mind this morning.
Then I needed to attend to my little life.
A long time ago, I also wanted change. I married my childhood sweetheart and joined a well known but small volunteer group fighting mental ill health laws in the state I live in.
I spent a couple of weekends writing a paper on : caring for people who experience times of mental ill health .... just some little ideas that could change general day to day care ; brought up work for the dole can be changed and meaningful volunteer work.
Nothing happened.
No one read it.
Marriage collapsed and I was still exploited for being vulnerable.
Ide rather handsew and draw pictures any day.

[PeppiPatty]

Gray,

Am happy your here.
Wanna write anything about what you wrote about when you wrote goodbye ?

Have you ever written good day to Loony? He's cool, you know Allessandra1992 who has the pretend name of Sandy (lol)
Kirsten (clever lady), Bat Guana, Kudo, Rick, Giving Mick,
They keep me all centred.

I always have good dreams and
A couple of nights ago, I dreamt I was in a time machine and I went to revisit my Step Mother and half sister in America. It was raining and I was thinking something while I watched them. I was standing outside in the rain when I woke up.

I've written and written trying to work it out. Nothing's come but tonight, before I opened up my ipad....I remembered what I was thinking. I was thinking, they haven't changed.

These two I women who are so much on my mind, who have done some things which dunno I would do....
But I've thought of them for so many years.....
It was both relieving to get that dream and sad. These two women live in America. I am quite vulnerable and .....well.....they aren't. The raining is my crying. The time....my whole life.
Just rather live my life now.

[PeppiPatty]

Are you including WA ? Yeah, they might be closing the doors to the main Psych hospital but let's see if changes happen with the staff.

[Gray]

Hi Sandy and @PeppiPatty 

Thanks for the welcome. It almost brought tears to my eyes, I'ver been gone for so long.

Most interesting to read how you guys deal with your issues. I wish I could help you, but I can't.

If I had my way, I would have my son living in a flat in a suburb next to mine. (he lives with his mum interstate)

I would be his dedicated Loon but he would be closely monitored by a proactive, caring Case Manager

I would spend the rest of my life as his Loon.  His mum would thusly be relieved of that responsibility and could live her own life. What little there is left of it.

I've tried to put that package together several times over many years and have I failed.

It's not going to happen.  His mum won't let go. He won't let go and the system will fail us.

One time, when I contacted a local mental health establishment for assistance suggesting that he migt be coming here and might be manic, they said OK, take him to an Emergency dept at a hospital.  And I said "What if he won't go?" and they said "Call the police.'  and I shouted "HE'S MY SON FOR GOODNESS SAKE! I'm not calling the police on him.  I don't want him tazered!" and they hung up on me

Aaaaaaaa well.

Gray.

[Alessandra1992]

I suppose @Gray that perhaps just keeping in contact with your son is a good ordinary thing to do
If he does come and visit you one day, he may not go manic..so you won't need to call the police..

Perhaps over time he will manage his own mental health, perhaps better than he is now and you will be able to emphasise the positives in his life rather than the negatives.

I think a good place to start this conversation is with the forum..you sound as though you have been staying in contact with him, good on you..it is too easy to see the negatives..your son is well loved by you both... Maybe you share a common interest?

Having your way so to speak is not something you can force..offering a welcome space and a friendly ear..now that is something you might enjoy as well as your son..
Sounding a bit bossy but not wanting to be...

[Gray]

Hi Sandy,

and @PeppiPatty 

Thanks for you friendly considerate advice.

More later..  Not so well today.

Gray 

[PeppiPatty]

Hi Gray,
It's nice knowing people care.
Cya JA47yr

[kristin]

Hi Gray,

A very belated welcome to the forums! I'm so pleased to see some of the others have already welcomed you with their usual warmth and care.

I'll keep it short because I'm not great myself at the moment, but I hear/read a lot of grief and regret as well as overwhelming stress in your post. Sounds like you're immediate family has been to hell and back whilst many of those you looked to for help watched on or walked away. I'm so sorry. I would like to say it wouldn't happen today but it does in many ways. I think it is vital that we find our collective voice and speak up; both to support each other as we do here, and finding our joint voice in society so that this doesn't keep happening. 

Blessings.

Kindest regards, 

Kristin

[kristin]

@Alessandra1992 

Hi Sandy,

I agree this is definitely a worry with NDIS. Much (most?) of the states' MH $ will go into NDIS - that is the most acutely long-term ill/debilitated who also have a tick the box diagnosis (I'm still trying to find out all the box names: I know from VDoH that schizophrenia & bipolar both on list). The only bypass of the formula, as I read it, is direct approval by NDIS CEO. Not likely to happen often or quickly.

This seems to ignore several important issues:

1. It can take years or even decades to get an accurate diagnosis, particularly with bipolar - as often the mania is misunderstood by the sufferer as "being well". (As you know this was my experience over 30+ years before I figured it out & asked the question of my new psych).

2. The more debilitating effects of a severe MI can be experienced before the diagnosis, whereas getting a good diagnosis can be helpful in providing some handles for treatment and management meaning a person can be more well afterwards.

3. It assumes that MI is a one way down-hill street, and diagnosis equals a life-sentence. Not the case necessarily.

4. For many people suffering MI to get more than the 16(18?)/year Medicare subsidised psych sessions under NDIS they will have to get much sicker before they get any more help. So much for early intervention!

Don't get me wrong. I think NDIS has much going for it, but it's no panacea and I worry that in some respects MH is an afterthought. Many others in the sector, carers and some people with physical disabilities, don't seem to see that NDIS applies to MI at all. The joys of an invisible disability!

I also worry that those of us who aren't sick "enough" to qualify for NDIS may find oursleves kicked off DSP too. My reason for this concern is that I noticed a very striking similarity in wording between the NDIS criteria and this year's McClure report on pensions and payments. So I'm watching this space. I've heard very little further since the report's release. At the time I was too sick to respond to it in the very short feedback window (about 6 weeks?). One worrying thing was I couldn't find a definition of disability anywhere in it.

Cheers, Kristin