Lived Experience Forum

[Queenie]

Hi @utopia... I think you read my post wrong (or I typed it wrong)... I meant I have no friends to stay with and I can still hear voices even underwater. 

I think I am a lost cause sometimes!

Apologies for misleading you. 😞 

[Former-Member]

I'm sorry to hear you're struggling @Queenie, and I'm sorry you're not getting any respite from them.
Have you seen your psych to see what they suggest? Have you been able to talk to your Mrs?

[utopia]

You didn't mislead me @Queenie. We just got the messages crossed.
Wouldn't it be good if SANE had a safe refuge we could use when we needed time out. That would be ideal.
I'm not sure why this place you checked out say you don't fit the criteria, when you fitted the criteria at the other respite where you used to live. Are they owned by the same people? Or is it this new beaurocracy that it causing all the kerfuffle? They have to stop cutting funding to current services and clients. Seems the Government has taken money from one service to pay for another.
Hope I didn't upset you when I got the water & the voices wrong. I thought you'd finally found a way when they quieten down for you. Sorry

[Queenie]

Hi @Former-Member, I spoke with my Mrs and we had a massive fight. In the heat of the moment she told me to move out (which half an hour later she retracted) so it wasn't very helpful. It seems the only help I've got is hospital, but my normal psychiatrist is overseas at the moment so unsure if I'll even getting admitted privately. It's all a hot mess at the moment.

@utopia even though the respite houses are operated by the same umbrella organisation, they apparently get their funding from different bodies. Before it was Commonwealth funding and that is relatively easy to get. Now I'm in a different catchment area because I've moved, funding is from the Department of Communities at a state level. Almost impossible to get and it wasn't helped by the fact I have to speak on the phone on behalf of my carer as she doesn't like speaking on the phone. They believe I don't qualify as having a diagnosed psychiatric disabiity even if I am on the disability support pension because of one. I don't get it. When I moved here to the city I was promised all this support but now I have none at all! 

Getting really close to the extent of my limits.

[Queenie]

No need to apologise @utopia about the water and the voices situation. My post wasn't that clear.

[utopia]

That's ridiculous that your funding now needs to come through a different source @Queenie. Sounds hard to try and navigate through all their rubbish to try and get the help you need. Add in the fact that your wife and carer struggles to talk on the phone. Then you need to speak for yourself. And I guess they take that to mean that you are doing well. Stupid thinking on their part.
Respite is for when you feel your slipping into ill health - but not sick enough for hospital. They need to make something available for you.

[Queenie]

Exactly @utopia, I feel like I am headed downwards but not yet sick enough for hospital. I've been researching like mad and there is a recovery house available, but you cannot go there if you're in an acute phase of illness (which I am). Also the organisation has very cliquey, the participants of the program don't like newcomers and don't make them feel very welcome. Therefore I am reluctant to go there.

My Mrs has sent an email to the carer's counsellor (gaol warden) to see if she can help. They were going to put me into respite a while ago against my will, but rethought against it. We shall see how they go if I volunteer to go. Maybe she has resources not normally available to us?

I came up with a new colour yesterday as part of the traffic light system - black. I just feel like I'm overwhelmed by black at the moment. I just hope we can get this sorted, before a lapse into a depression episode. I seem to have those every 6 months.

[utopia]

Depression is a nasty bugger @Queenie. I hate it.
Surely someone out there can help you with respite. What about the consumer consultant from the local hospital. He/she may have some suggestions you haven't thought of.
I hope some light shines on you today.

[Queenie]

@utopia you know, that's not a bad idea actually! She normally only sees inpatients as she goes only on the ward, but we can see how we go. The worst she can say is she can't help us, right?

I pulled money out of my savings account to pay for respite at the respite house, but seeing as they are near impossible to obtain for services (the Department of Communities refers you and pays the worker there overnight, however you pay for the food you eat at a rate of $20 per day). I'll just hold onto it.

[utopia]

@Queenie - yes keep that money aside for when you get a place. As I'm sure you will find a bed in respite soon.