Issues Concerning Carers (relatives/friends as opposed to paid Carers)
All Governments are very big on ‘Mutual Obligation’ these days. Whilst to many this seems a clear cut issue, Government and community awareness must be raised on the issue of long term, and knowledge able neglect and abrogation of any Mutual Obligation or human rights to the hundreds on thousands of family carers in Australia.

This issue seems a complicated one to those who have never been involved in long term, full time care for an ill or otherwise disabled relative. To those of us on the “inside”, and that’s how it feels at times; it is a simple issue. The issue is that there are growing levels of Government Bureaucracy coming between us and the funding we are supposed to be receiving, so as to provide urgently needed respite, to help manage financially and to just begin to right the great injustice that is being done to all long term carers, by the system. That system consists of firstly Government bureaucrats, who are grossly ignorant, not because they have not been informed, but because of sloppiness, self interest, and the desire not to rock a very comfortable boat. Then we have a three tier system of Government sponsered Carers Associations, National and State, Resource Centers, Respite Information Centers, and on. None of these achieve anything at all for the home based carer, and manage to eat up millions of our dollars, ensuring that although there is plenty of information out there, it never translates into anything useful. Also none of the above are accountable.

I urge you to keep reading, as it is vitally important that you come to as complete an understanding of the rightful anger and feeling of total betrayl, we Carers all share. A growing number of us are aware of what the problem is, whilst most have no idea of the depth of the rorting that is going on, and are just hoping that someone, someday, will help them. Most of us do not really have the time and mental energy to keep on tackling this issue. It is about time someone in Government, or hoping to be in Government, helped us hold up our banner of grievances, because to date, although all Partys have been contacted by many of us individually, they have all turned their faces away.



The Australian Federal and State Governments are denying carers basic human rights. Though they are generally considered “Welfare”, they would be the only people to be on active call twenty-four hours a day, seven days a week, year in and year out, over periods of decades. Carers are ‘a hospital of one’, but there is no superannuation, no sick leave, no weekend and certainly no holidays. There is no workers compensation for back injuries, or other health issues caused by long term caring for the loved one or loved ones in some cases. There is no Union. Many of us along with our role as Carer, are also Mothers of small children, wives, fathers, and have other responsibilities, which can be neglected through necessity, due to the role as principal carer.

The Federal Government provides funds for a bevy of ‘information services’ to advise carers about Respite, which does not exist, and services that are only there on paper. We have three levels of ‘information providers’; not one of which ever achieves anything practical for the Carer in the home – at the coalface.

Who are the Carers?
Carers are often disliked, distrusted, and dismissed by doctors, nurses, and others who come into contact with the loved one they are caring for. Generally this is because we are the ones who insist on adequate medical, humane and dignified treatment for our loved one. We ensure that society can keep its hands clean of the realities of disability, because we are generally eager and competent in our care for our loved one.

There are short term Carers, such as those who nurse and provide care for a few months, or a year. There are middle term Carers who may have a relative or close friend needing four or five years care. Then there are long term Carers who will care for ten, twenty, thirty years, and some for the rest of their life. There are also people who have full care for more than one person. Carers are the only people who work for any pension they may receive, be it a full pension or Domiciliarry Nursing Care Benefit (under $80 a fortnight). They work hours that leave most physically, mentally and emotionally exhausted. There is for most, no respite, no home care, no regular time off, unless they are able to pay for it themselves, which most cannot afford.

If and when they finally collapse, they can be treated dreadfully by others, especially official bodies, and made to feel as if it was all somehow their own fault, when in fact the reverse is true. Most Carers will endure levels of illness and discomfort and still manage to provide all the personal care needs of their loved one, keep the house going, do banking, groceries, and cope with whatever health crises that happen regularly with the one they are looking after.

The mental strain, isolation; desolation at their inability to be an autonomous individual, (a basic human right); back injuries and other illnesses such as flu; pneumonia; heart disease; or cancer, are often caused by the unrelieved stresses and relentless nature of their role. That and the lack of any suitable assistance from Government bodies charged with ensuring that the system looks after its people in real need.



1. What would you do, if you had to provide 24 hour a day, seven days a week, year in and out, care for your Husband, Wife, Child, Brother, Sister or Friend who was a High Need Disabled person?

a. If you cannot continue this level of care by yourself, the Government will pay, without question or hesitation, $100,000 per year to take over. (You were only paid $1352 per year – Domiciliary Nursing Care Benefit - for the same work.

b. If the Government take over, your loved one will not receive the same level of care and attention you can give. Their chance of recovery is reduced. They can suffer neglect, abuse and even sexual assault.

c. The government will provide a few hours a week of Home Services, if you are lucky. They will pay strangers $15 to $20 per hour. They will pay you only 16cents an hour. The Services provided are not always suitable.

d. Failure to maintain proper care will result in the death of the one you care for.

e. Duties include feeding, (naso gastric), and toilet functions – cleaning, incontinence – attending to all personal needs around the clock.

f. There is no Superannuation, Holiday Pay, Sick Leave, Overtime or Workers Compensation.

g. The work is onerous, exhausting and relentless, and delivers isolation by its nature.

h. The Government will allow you only 42 days off per year (not even one day a week), but you can only take this time if you can find someone who can stand in for you. How you pay them is your problem. Try working out the wages, at $18 per hour, 24 hours a day for a week, and see how easy it is to try and afford even minimal respite. At the minimum it will cost the Carer $2,324, just to pay for this care for the one week. Money still has to be found in that week for groceries for the paid Carer and your loved one, for yourself and for any travel or accommodation you might incur. For most it is financially impossible.
This is a serious abuse of Human Rights. Why can not the Government assist the Carers in their work? There are only a few people saving the “System” a huge amount of money. Legislation has been passed which has not been enacted. Why not? Ten patients at home saves $1million dollars per year. The Health System does not provide for long term care.

No Union would tolerate these conditions for one day.

1. Aquired brain injury can be caused by:-
Motor Accident… Heart Attack… Stroke… Sports Injury…
Electric Shock… Assault… and others.
The only hope is that your family can take you home to care for you. Sedation is commonplace if you are placed in a Nursing Home or Hospice. This will make your recovery highly unlikely.

2. The Nursing home will cost the Government some $2000 per week, to care for you. This will cost the Federal Government $ 100,000 per year.
3. If you family take you home, apart from any Pensions you may qualify for, the Government may pay the Domiciliary Care benefit to cover the cost of your care. This is 16 cents per hour. That is $26 per week. $1,352 per year..



Appendix 1. – Therese Mackay
How do you get proper Respite? My husband is self employed, working from the home, but also needing a lot of care. He is a C5/C6 Quadriplegic Complete, and has been since 1982. Respite in a hospital or ‘Home’ is inappropriate for someone like him. He works, uses his computer and is able to access so much himself about our home, because of how we have set it all up.

I do not agree with the draconian changes to the Industrial Relations Legislation about to be enacted by the Federal Coalition.

But perhaps those workers threatened with loss of four weeks annual leave ‘rights’ might spare a moment for those of us one million plus full time family Carers who are on duty twenty four hours a day, seven days a week, year after year, decade after decade, with no adequate respite, far less a real holiday, free from care.

We have no Industrial Relations Act to protect us and no rights to the basic human rights workers expect and deserve. We have no Penalty Rates, no Sick Leave, no Superannuation, no Workers Compensation and no retraining if we are injured. We just keep on going because we have made the only choice available to decent human beings, and that is to love and care for our loved one.

If we are still standing at the end of our caring, we will endure dreadful grief, because of the intimacy of our role and the understanding and compassion that brings. We will be left untrained, old, often unwell, often poor, often uneducated, and after usually lifetime of incredible levels of responsibility and heartache we will find ourselves needing care but without any decent resources to access it for ourselves.

So with all the justified protesting by Unions and workers, please remember us when you are facing just one slither of our reality. Please Union officials, Union Members, paid workers, politicians – please remember us.

We are the glue which holds a civilised compassionate society together and you have all neglected us for far too long. You have allowed a triple, or is it quadruple layer of paid advocates in organisations to siphon off any funds which might have been meant to dribble our way. Advocates who all have penalty rates, sick leave, super and workers compensation. Maybe many of them are out there on the streets dear darlings that they are protesting alongside you all.

We, the one million plus of us, realise that it is easier, more convenient for you to forget we exist, even though our hard work, endless as it is saves the country well in excess of $25billion per annum.

If you have any conscience at all we ask you to please unfurl a banner or two for us in your marches. We are unable to march because we are on duty full time, and we would never strike because those we love would suffer.

Think about what you are facing now and try to begin to comprehend what we have endured for decades with no outcry from the community, no outcry from the Unions, no outcry from the politicians, and little real coverage by the media apart from some syrup.

Think and then give us your support too because, ‘there but for the Grace of God go all of you Workers, Employers, Union Officials, Bureaucrats and Politicians.

No one is immune for our plight, but pretending we are invisible is shameful.

I intend to blog a s

I intend to blog a series of articles I wrote in 2001-2002 which may only be of interest to others in our situation. In Australia we have 19million people. Of those 19M well over a million of us are full time unpaid family carers  - and I bloody well hate that word carer -  we are wives, mothers, husbands, fathers, children, brothers sisters and other…but we are called “carers” by Social services world wide… and even in doing this we lose our identity if that makes sense to you.

This is the first article I wrote…

It is clear to most Australians that we are becoming a nation weighed down by bureaucracy, government information services, call centers and paper shufflers. The result of the billions of dollars spent in these areas, is that little of the money we are told is provided for Carer Respite, Home Care, Community Nursing, actually gets through to the people who need it the most.

If you succeed to wake up a politician about a real issue of social justice or human rights, the first thing that they want to do is have an inquiry. Expensive adds are placed and submissions are called for. Then a committee has to be appointed. The committee needs an air-conditioned place to meet in. They need stenographers, computers, and phones. The have to have access to catering of some sort. Months down the track, a report is released with much fanfare.

Those of us needing to access basic human rights, such as home based respite, home care; whatever, naively get copies of the reports which invariably say that we have a case, that things must be changed and that more money must be allocated. Hearts sink from past experience when as time passes, nothing changes for those at the coalface. There is no decent or adequate home based respite for the elderly looking after brain damaged adult children, nor any human right to sleep at night for those looking after those with chronic illnesses, but there is always money spent.

The Government, Federal and State are big on providing multi-levelled layers of Information servers, who after ringing a swag of 1300 numbers direct you, often back to where you started. Then they let you know that there actually are no services available, because there is not enough money and there are so many needy people, but that they are very sorry and fully understand your position.

It seems to many of us that what qualifies as “needy people” are the Conference organisers, the Facilitators, the Social Workers, the useless Call Centers, the editors of Government backed ‘Carer’ magazines; a seemingly endless list. This is what leaches the system dry before it comes anywhere near the actual people we are told it is put in place for.

So what to do about this shameful state of affairs? You can’t work from the inside to change things, because you are then powerless, and this happens to many who honestly seek to change things. Submissions, surveys, meeting or writing to your MP is worse than useless because it steals your precious time and usually results in an “acknowledgment” possibly but not always followed up with letters form Minister’s secretaires which do not address the actual issues raised. Like many I know this from experience, so this is not anecdotal

It is a fact that the bureaucrats have set up an infallible system that protects all levels of bureaucracy from any real changes, questions and accountability. It is also a fact that the bureaucracy is self-replicating, so that any irritation or questioning of its existence sends it into a flurry of internal activity, which only calms down when yet another level of bureaucracy has been created, to absorb the irritation or question.

It appears that Australian Government is unable to control the monster it has created, and the monster is growing more ravenous, more out of control, and more stupid and self-serving.

And that word “self serving” is the key. As the cogs in the wheel each clock off from their various Centerlink, Carer Link, whatever other bloody link, they sincerely believe they did a good days work. They have created more surveys to fill out; more reports to be read; more useless letters of acknowledgment and placation; all ‘gently but firmly’ worded in the language that only they can understand. I don’t feel that we are meant to neither understand nor make sense, because when you do finally nut the terminology used by the bureaucrats in place, it is actually nonsense.

And just in case we are feeling low, there is a special sort of bureaucrat, called the Editor, of whatever Government funded publication we have subscribed to in a vain effort to keep up with the bag loads of Legalisation, and rules we are governed with, and for which they have lobbied so hard. A construct that they spare no amount of glossy paper and coloured print to remind us of, just in case we should start wondering what they are actually there for and how much they are costing. Along with these reminders of their dedication, are the endless editorials telling us all what wonderful people we are to endure; how much we are worth to society; how stressful and sad our lives must be and how much they really care about each and every one of us.

And do you know the really tragic thing? We believe all of their lies some of us never wake up, and that is the betrayal. Those of us who wake up become increasingly disgusted, and in our little spare time begin to contact others who are of like mind. We start to write letters first of query, then of disbelief and then of anger. We realise that nothing we say will ever penetrate the Teflon coating of any of the Members of Parliament, nor of the various people between us and treasury.

I believe that this is how it is meant to be, was set up to be, and it is only when you start to test the system set in place which syphons off millions of Australian Taxpayers dollars, but which pretends, even to itself, that it is all there for our benefit, it is only then that you realise the sinking reality of how things really are.

I don’t know what the solution is. Even suggesting a solution bears the very real danger of someone setting up a committee, another arm of officialdom, complete with money wasting accoutrements.

Somehow, the money allocated specifically for those who care for loved ones (as opposed to those who are paid carers and who go home) at home for long periods, must be made available to them directly, and cut out the incredible waste and useless levels of so called ‘information’ providers. This must be in the form of regular payments for in home respite, at least six monthly breaks, and for other things only Carers know about, such as retirement homes where parents are able to be with disabled children, and not have to face separation as their own health worsens.

We are the ones who know and we are asked too often what is needed. But what is needed is never delivered. Those of us, full time Carers save the Government at least $400 a day, and depending on the level of care, this would escalate. Yet here we are out here in the community, hidden. We are the gold and glue which holds our society at a certain level of civilisation but the level of human rights we experience in this ‘generous’ country is anything but the treatment we deserve. We are given scraps, no hope and no say. We have no ‘career advancement’ to look forward to, no reason to dream. And we work hard and long hours constantly being responsible, being on call, and being able.

There are no basic human rights for us. No sixty-hour week, much less a forty-hour one. For most of us we are on call, or on active duty, one hundred and sixty eight hours a week, all year round, for years on end. There is no union. No workers compensation for injuries received on the ‘job’. There is no Superannuation, no holiday pay, and most of us go for years, decades like this. If our time of ‘Caring’ comes to an end generally through the death of someone we love more dearly than life itself, we emerge only qualified to clean toilets or wash floors, as nothing of our vast knowledge is valued by the ‘system’. How we survive is our own business. Most of us pace ourselves. After time it appears to others, heading off to gyms, to the movies wherever, that we appear not to want to take part in these activities – hard for them to understand. But our spare time is too precious to us to waste with others, and the experience of just being one, on call to nobody is sweet to us and we know what this is about. It is an internal thing seldom spoken about, because what is the point? But we all know what this state of affairs is.

But as a seeming contradiction it is not just the workload, but it is mental isolation, which continues even in company. We know what this means. When we have time out, we do not really want company. Most of us just like to wander, not speaking just looking about, with no one needing us to look at this or to participate in any way shape of form. We know about this.

The NSW and National Carers Associations do not ‘know’ about this. Their knowledge is second hand, and I would query how many full time and current long-term carers they have on their boards. I think that one of the big problems is their total lack of accountability, and their political correctness. It is very hard for you to question people who are supposed to be working so hard for the good of carers.

The NSW Carers Association and the National Carers Association need to be held accountable. Like many, for all the time I have been a paid up member, apart from the “Kit” and a Ceramic Mug one Christmas, (I know who the real mugs are) they have not produced one single thing I can say has eased my lot which has personally improved temporarily due to my husband being more stable. It was almost unbearable at times and I feel I came very close to a breakdown. What would happen then? I doubt the lot of other carers has been practically improved by them although they talk a lot about what they achieve. Where are the results?

Its not just in the area of GST and petrol prices and other very important areas that the people are throwing up their hands in frustration. If the Coalition and Labour do not hurriedly address areas such as the issue of the millions allocated for respite etc not getting through to the carers, because the triple levels of bureaucracy eat up all the funding first, then they will find a very angry electorate at the next Federal Election.

Carers need to be spoken with, especially those non-metropolitan based. They are the only ones who can voice their concerns. It is an insult to us to appoint others to speak on our behalf. Unfortunately many of us are unable to travel, due to our roles and the fact we cannot get away from home without financial disadvantage, and worry as to the care of our loved one when we are away. This is very important to consider.

I wrote this in 2002…the only thing which has changed is that this has become much worse.

My youngest sister's Husband who was ritually killed after sending us this "glamour shot" of his wife...(it was she who killed him) to all and sundry. He made a big blue in doing so. WE are not a "glamour shot" kinda family and she knew how we'd chortle when it turned up...

we were a bit bemused by the large vaselined eyebrows which seemed to go on for ever...she has never plucked them and we would all like to have a go with the tweezers... a bit of a "wolf hound there" albeit a peerrtty one... (please zero in on the eyebrow and you will know what we mean!)


Don felt rather underprivilidged and although initialy so shy he posed for his very own Glamour shots and I don't know but I think he miht be the prettier one... hm... maybe... maybe not...its all up to the viewer or the voyeur...isn't he just lovely?

And such white delicateee skin.

 

I was looking at Mirk's bog and one of his posts reminded me of this . Truely penny dreadful but from the heart...I had forgotten this poem and time till I read about the chopping down of trees in Mirks blog 

And this lovely little girl was my mother...directly descended from the lady in the previous post. How good it would be to tell my great great grandmother that...yes we did survive and yes we are good people and yes all her heartache was worth it because here we all are...a testimony to her . . 

This lady is my great great grandmother. She was born Anne Lilbyrne in Fermanagh ireland as far as I can tell. She married an "Neilan" or "Neilon " and had two sons, James and John. Later she remarried a Thomas McGoldrick and had three sons to him...Francis, Patrick and Thomas..she also had a baby daughter.
This family travelled out to Australia on the Admiral Lyons in the late 1850's. The baby daughter died on that trip out.

I descend from her Thomas. He was my grand father's father.

But sometimes I look at tis photo and at this woman and I want to reach out my arms to her and hold her.... I want her to know that we did survive, that we are good people and that her life was worthwhile...also that I do remember her... 

This photo of my mother, still a teenager in the mid 1940's and her dad...my grandfather always makes me smile. She was such a wag and he was or seemed to be so "proper" ...but we knew he realy wasn't.

I look at them... at he, who would be 120 yrs old if still alive and my lovely mum who died much too young ... if she was alive she would now be 79.

Sometimes photos do catch the moment... the moment of laughter, of fun of a joke shared that wee the observer can know nothing of.... Ahh I just love my old photos so much.

Beautiful mind

What can I say? The power of the human mind is as amazing sometimes, as it is unamazing also.

wtc7 - I was sent a link this past weekend... just type in wtc7 on google and the first one which came up for me was this http://www.wtc7.net/ but there are pages...I had never heard of this, andcan't imagine how this 3rd WTC collapsed in 9 seconds, late on the same day of the earlier two...it wasn't hit by anything at all, supposedly just caught on fire from the others then "imploded" There is not way this was not a detonation, but as anyone involved in such detonations knws...these projects can not be done in half a day... not to work so perfectly...

What on earth has our Government (Australian) signed us up to? The ridiculuous farce of 9/11 is unravelling at the seams and they are just pretending alls well as usual. How can WTC7 be explained?