Didn't we know it - ageing before our time

No wonder I don't recognise the old lady in the mirror, I've just got older. Professor Elizabeth Blackburn is really ahead of the pack in this regard and has a cellular eyeview of the stresses placed on long-term carers, particularly their ageing before their time.

More about Professor Elizabeth Blackburn

Tasmania's contribution to medical and health research by Professor Elizabeth Blackburn

Carers get some serious Media coverage

Mark Metherell's story in the Sydney Morning Herald Saturday 16-17 June, 2007 covers a lot of the rugged territory which is the Carers' journey.

Carers UK

Check out Carers UK a website which shows clearly how carer activism has brought about legislative changes for unpaid carers

I wrote as follows to Carers UK today for moral support:

I am a parent carer and have become an activist for carers rights in the last few years. I want to say that your Carers UK is such an inspirational site. I one of a group of parents who want to see the same changes in Australia as in the UK.

I am particularly impressed with the activism that has gained legislative recognition for the rights of carers. We have no such activism, we have diplomacy instead.

Here in Australia by comparison the peak carer organisations which we have contacted want to go along the path of diplomacy without antagonising the powers that be by strident activism. This has proved extremely frustrating because the grindingly relentless and enervating experience of tens of thousands of unpaid carers is never properly brought to the attention of government by those who are funded and who purport to be the national voice of carers.

In the meantime all the activism and hard yards are done by parents and family carers (of which 91% are women) and they do so without resources and without funding. All campaigns of an activist nature are initiated and carried out by the most powerless in the community, that is the mothers and fathers and families of the disabled, the mentally ill, the chronically ill and the frail aged.

I would like to be in contact with some from your organisation who can help us here in Australia. WE have a national general election looming in the next six months and we are in the process of registering a federal political party so frustrated are many who see little likelihood of change which will significantly improve their lot.

Why a political party? We need a rallying-point a symbol for all carers that there are people who have had enough of the tokenism and platitudes. Because we need a full armoury in our struggle for the equitable provision of services and support to unpaid carers. Without a fearless, vocal and activist national body we cannot hope to apply enough political pressure to bring about the change which is so desperately needed and which unaddressed hitherto has left a chasm between the funding and the unmet need of Grand Canyon proportions. Particularly pressing and in persistent crisis are ageing parents in their 50s, 60s, 70s and 80s still caring for disabled family members for whom there is no provision for supported accommodation and little respite which is regular, accessible and available.

There is currently on the table a re-negotiation of a multi-lateral agreement between the Australian states and the federal government. Yes in sunny Australia we have the remnants of colonialism with the states forming a federation --- and of course so much more opportunity for politicians and bureaucrats to blame-shift, buck-pass, and prevaricate while over-wrought families and carers crumble.

It is a terrible thing that in this rich first world country there are parents who pray that their children die before them. This is exactly what these elderly parents are doing. After a life time of patient loving care for their family member with disability they see nothing is planned by way of supported accommodation for their loved son or daughter. Many go to their deaths without the peace of mind of seeing their adult child transition into secure, safe and caring supported accommodation in a timely, measured and humane way. How will they rest in peace when they know they are leaving someone who is vulnerable and unable to speak for or care for themselves ?

This is an abomination .while in march the UN Conventions on the Rights of people with disability is trumpeted as if it actually matters.

It is a constant wearing battle for services, a war of attrition and too many casualties of this war have been carers. Well I hope that with some help from Carers UK even if it is just moral support, we might out-flank and out-manoeuvre those who have had the upper hand for too long.

Parents tell it like it is

These 2 letters were published in the Sydney Morning Herald in response to Jasmine Smith's Heckler piece mentioned in my last post.

Finally a Heckler I can relate to I am also the parent of an autistic child. I can assure you Jasmine Smith is not exaggerating. A report on teh same day alleged Pru Goward advised a mother of a 31-year old disabled man to threaten to kill her son, and then herself if she wished to receive help. Thank goodness we are finally getting coverage of this rotten situation. It seems the only way we can force politicians to listen. Every little bit helps.

Lynda Slade, Oyster Bay (letters 11/6/07)

Followed by this post from Jenny Rollo:

It doesn't matter whether the exact words were spoken to Lola Marmont about suggesting murder-suicide as a method of obtaining help. The fact is that to get supported accommodation, and in many cases, respite care, parents have to show that they are in dire circumstances. Those who continue to struggle along quietly will never get help. Only 5 percent of disabled people who need it are given supported accommodation. Who, then, inherits the disabled peole when their parents die? Answer: the siblings. Lucky them.

Jenny Rollo, Putney (letters 11/6/07)

Getting attention at last

This item appeared in the Heckler column of the Sydney Morning Herald which is usually given over to quite fluffy topics. Jasmine Smith, the mother of an austic child, managed to have her piece published by giving it a dark comic bent.