Depths of Despair

[allylee]

Thanks everyone for your words of wisdom and support.
Im a strong character and a coper and never imagined Id hit the point that I have...amazing the effect that sleep deprivation has.
Im taking this on a day by day ,night by night basis, seven more sleepless nights for me, and seven more anxiety filled ones for mum. I hope she finds some inner peace when she has 24 hr care.
Love to you all
Ally xx

 

[jenniferpa]

Good for you Ally. I'm sure they could detect the light of desperation in your eyes. It's extremely deperessing that that's what it comes down to, but many people have indicated that when it comes to scarce resources, about the only way to get them to cough up is to essentially break down in front of them. Fire fighting I call it, and no way to run a system, but that's how it is.

Jennifer

 

[Nell]

I did hit rock bottom this morning, but have reflected on it, and will carry on day by day, like we all do.
/QUOTE]

Hi Allylee!
Please don't misunderstand what I'm about to say! I applaud you and all carers who "keep on keeping on" in the face of insurmountable odds, . . . .BUT!!

After many years of dealing with (Australian) bureaucracies (which seem to be much the same as bureaucracies anywhere!) in a professional capacity, I advise against being seen to "keep going" no matter what. In most cases (unless you strike it lucky!) government organisations will simply accept your ability to soldier on and keep putting your situation in the "not urgent" pile.

My advice is "move your case into the urgent pile immediately!" If necessary,over state your case. See a doctor and tell her/him you are about to have a break down. If possible, apply for stress leave from work (for family reasons not work reasons). Tell SS you cannot cope for another 24 hours, unless you have something positive to look forward to.

All a bit "over the top" I know, and perhaps more than you are willing to do - but please don't be too stoic! Over the years I've given this advice (unofficially!) to many parents with disabled children who have been heroically coping forever with little or no help, because the organisations meant to help them are busy looking after the "squeaky wheels"!! Well, eventually, you need to become a squeaky wheel!!

Good Luck! Nell

 

[allylee]

Dear Nell,
you are so right!
I step in for my own patients and their families when I know theyre desperate, and have fought and won many battles with SS to get care and support for them
Havent been so good at doing that for myself though.I have taken many of decisions made about mum without questioning or challenging....Im sure thats because regardless of training and knowledge, Im just another exhausted carer, who as you rightly say will soldier on regardless.
In agreeing to keep mum at home till the 9th, I told myself that at least there is an end in sight now.THe reality is that Ive had more disturbed nights, and that the week seems an awful long time.
Ive surprised myself that I havent fought harder, if it was one of my patients, Id be like a dog with a bone

THanks Nell

Lots of love
Ally xx

 

[Grannie G]

Dear Ally,

What you say is so true. Why do so many of us have the shtrength to fight for the rights of others, but are unable to fight for ourselves.

Is it because, for others, we can be less emotional and more objective, whereas for ourselves or family members, we become more vulnerable.

I was once referred to as a complainer, when I was fighting for one specific issue. It didn`t bother me at the time, it was an issue I supported.

If it had been personal, I don`t thing I`d like to be thought of as a complainer. There might have been repercussions.

I suppose that`s the difference.