Warning signs for carers' wellbeing Print E-mail
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Adele Horin
The Age
October 15, 2007

CARERS who look after frail, disabled or mentally ill relatives suffer "extraordinary" rates of depression and have the lowest level of wellbeing of any group in society, a study reveals.

Their dissatisfaction with all aspects of life is more pronounced than other marginalised groups surveyed, such as unemployed people who live alone and people on very low incomes.

"This is truly sad stuff," said Robert Cummins, of the school of psychology at Deakin University, who will present the findings today at the launch of Carers' Week. "We have been doing research in this area for more than six years … and I'm not aware of any group that has ever been found to have a wellbeing score as low as carers."

The study, based on the responses of 3750 carers to a detailed questionnaire, showed 56 per cent would be classified as moderately depressed, compared with 6 per cent of the general population.

"This is an extraordinary result," said Professor Cummins, who publishes the Australian Unity Wellbeing Index, a regular measure of how satisfied Australians are with their lives.

Almost 40 per cent of the carers were estimated to fall in the "severe" to "extremely severe" range of depression. The average carer also experienced moderate levels of stress.

The special report compares carers' wellbeing in July 2007 with that of the general population. It shows high levels of life dissatisfaction among carers even in the presence of mitigating factors such as having a higher income and being in a relationship.

Among the 83 per cent of carers who live with the person they are looking after, the level of wellbeing was the lowest ever measured for any group in 17 wellbeing surveys since 2001.

Professor Cummins said the average wellbeing score for Australians sat between 73 and 76, while the average score for carers was 58.5; for those who resided with their frail, disabled or mentally ill spouse, parent or child, the score was 58.4.

Joan Hughes, chief executive officer of Carers Australia, said 2.6 million Australians were carers, and half a million were in particular distress from being on call 24 hours a day. As well, 104,000 were dependent on a Centrelink carer pension and a further 400,000 received a small fortnightly Centrelink allowance.

The study revealed sole parents to be the most distressed carers. Carers who looked after children were worse off than those who looked after a spouse, and women were much less satisfied than men. Professor Cummins said there was no evidence that carers adapted to their situation if their duties continued for longer than two years.

A third of carers 'severely depressed'

The Age
October 15, 2007 - 7:54AM

More than a third of Australia's carers are severely depressed and they have the lowest sense of well-being of any group ever recorded, a new report shows.

Across Australia there are about 2.6 million carers who look after people with a disability, mental illness, chronic condition or who are frail.

Their struggle has always been evident, but a report released on Monday by Carers Australia goes into detail on how unsatisfied with life the majority of carers are.

"We know from previous research that the health and well-being of carers is compromised as a result of their caring role," Carers Australia chief executive Joan Hughes said in a statement.

"However, this study quantifies it in a way that has never been achieved before on a scale that has never been attempted before. The results are incredibly disturbing."

The research paper is based around the "well-being index" which is a measurement of how satisfied people are with their lives, using economic, environmental and other factors.

More than 4,000 carers were surveyed for the study and found to have a "well-being index score" of 58.5 out of 100.

That is well below the average score of the Australian population which currently sits between 73 and 76.

"This is truly sad stuff," said Professor Bob Cummins from Deakin University, which developed the well-being index in partnership with financial services and health insurance company Australian Unity.

"We have been doing research in this area for more than six years now and after 17 surveys of the Australian population, I am not aware of any group that has ever been found to have a well-being score as low as carers," Prof Cummins said in a statement.

The study also found startling results on health in general and found that female carers had a lower sense of well-being than males.

More than one third of all carers were found to be severely or extremely severely depressed or stressed.

Some of that could be attributed to the financial strain involved in caring.

"Many had such high levels of worry about being able to pay their household expenses that it was having a clear impact on their well-being," Ms Hughes said.

"It's a double jeopardy when there is less money coming in, and often more going out to pay for medical expenses and other needs."

The report also found that caring does not get easier with time and the sense of well-being decreases as the amount of caring hours increases.

Professor Cummins will officially hand down the findings at the launch of Carers Week at the National Museum of Australia later on Monday morning.

Both major parties will make commitments to carers in this federal election campaign, but are yet to give details.

"I salute them, I admire them and I feel for them, and to be fair I don't think it is right to say they have been ignored," Prime Minister John Howard told Southern Cross Broadcasting.

Labor leader Kevin Rudd followed suit.

"Carers are doing a huge amount out there in the community. We'll have something further to say about our policy for carers during the course of this campaign," Mr Rudd told Southern Cross Broadcasting.

© 2007 AAP
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Family carers of disabled the most depressed: study

October 15, 2007 06:35:00

Researchers at Victoria's Deakin University say people who care for disabled relatives are the most unhappy demographic surveyed in an ongoing project about Australia's wellbeing.

Psychology Professor Bob Cummins has been measuring the happiness of the Australian population for more than six years.

He says carers have the lowest wellbeing rating because they have to curtail all their prospects and social interactions.

"All of their normal life has to revolve around the care of somebody else and this is just extremely draining," he said.

Professor Cummins says young carers are the most unhappy because they are seriously deprived of opportunities, but they get more content as they age.

"You can't as easily engage in social contacts, you can't overnight somewhere else and so on, and it may well also compromise you in your employment," he said.

Professor Cummins says most carers are clinically depressed, meaning they use lot of community resources and are not very productive, so he says the government should help them financially and invest more in respite services.

But Professor Cummins says by the time people reach their 50s and 60s they are more content.

"They engage in thought processes that are more tied to their reality than people are at the age of 20, when they're still imagining a life that's full of all sorts of wonderful things," he said.

"At this Federal Election time in Australia, ...governments need to take serious the needs of young people supporting a parent with mental illness and provide adequate funding to NNAAMI tailored web based counselling and support services for this vulnerable group.
NNAAMI is shocked but not surprised at prof Cummins findings. You only have to view the stories on our Forum on our NNAAMI website www.nnaami.org.
These young people know what they want. We try our best to provide email and telephone support via NNAAMI, but our service needs funding so it is manned appropriately to take these calls on a consistent and responsive basis. Many organisations, often the same old organisations, get funding. We need innovative approaches funded not just more of the same, dedicated funding made available. These kids don't approach the same services their parents utillise, why should they? Many of their parents are not even receiving treatment. The burden of care these kids endure is huge, they deserve support. You need to know how to reach this group, ...they want to talk to people who have been there and understand their situation, NNAAMI reaches this group ...but funds from government are needed to assist and support them.
Paul Mckillop, convenor of NNAAMI, said in response to Prof Cummins Report on ABC Radio 774 15 October 2007."

Also see NNAAMI's letter to Mr Howard, Peter Costello, Mr Rudd and Nicola Roxon, 07


Jarvis Walker     Arlec

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Featured Articles

The 'Forgotten People'

by Anna Malbon from the Progress Press October 22, 1996

WHEN nine-year-old "Tom" was asked to draw a picture of himself with his mother be drew her trying to strangle him.

Tom entered the world of adults too early. If he was ever immune to the complications and pain of life that adults try to shelter from children, he says he can't remember.

Bulletin Board

I had to struggle extra hard

Her doctors did not bother to enquire about my father and I.

They only listened to her stories ”

“ I grew up thinking - Nobody wanted to help. Nobody wanted to know.”

Hi, I had a mentally ill mother. She passed away last year. I literally grew up hanging around mental hospitals because my Mom's condition was a cycle that always ends in a mental hospital. When I was younger, there was a long period when I cried my eyes out every time I was separated from my mentally ill mother because she had to stay in a mental hospital. After I grew older, my Mom's mental illness became impossible for me to bear.

Literally, my Mom's mental illness ruined my life. I think. I had to struggle extra hard for everything because of my big handicap at home. There was no support at all from anyone other than my father. Nobody else wanted to know about it. My mother's own cousin even said to my father not to bring my Mom to their place. I grew up thinking - Nobody wanted to help. Nobody wanted to know. My mother's own sister has been complaining since 2000 and her last complain was on 5 July 2014. This particular aunt keeps complaining about the same thing. That she had to take my Mom for her weekly injections and complained that my father and I was not around to do it. Then, she goes on to say that she saw my Mom beat me up with a cane. When she said that, I asked my Aunt, you saw my Mom beat me up with a cane? She said yes and than, she walked away.

I feel very sore with this aunt. Number one, the period she was complaining about was when I was still schooling and my father's and my mental health had deteriorated so badly that we had to leave the state for our own sanity. Before joining my father, I had to live alone with my Mom and my baby sister for almost a year. My aunt who lived a few minutes drive away did nothing when my Mom beat me up every day for months until my father managed to cut the red tape to remove me. My body was full of bruises and I was terrified to go home after school. Nobody helped. Not the neighbours who can hear all my mom's shouting at me, nor my aunt, nor my grandparents, nor my school's teachers. Someone should had intervened for a 12+ little girl. No adult helped. My father was trying his best to get me away to stay with him. Nobody helped him.

On XXXXXXXXXXXX, my Mom's sister let slip she saw my Mom beat me with a cane. And yet she did nothing! My aunt even had the cheek to say that my Mom beat me up because I said I wanted to go live with my father. The way my aunt said it was like the beatings were wholly my fault. What is wrong with the picture? You have a 12+ girl being beaten up daily, you are an aunt who knows something is going on and did nothing. Yet for years later you complain about having to take your own blood sister for her injections. And, I do not think she did it for longer than my own experiences. Probably only a few times because my father and I had to travel frequently to see to my mother. Due to the cyclic nature of her illness.

I have been going with my father when he took my mother for her weekly injections as a little girl, knee high, ever since I can remember. My own aunt is so calculative. There was a nurse that visits my Mom to give her her injections. But, the problem is my Mom will not let the nurse into her house that is why the intervention is needed. I have lost count on the number of times I had to go with my Mom for her injections as a little girl.

Her doctors did not bother to enquire about my father and I. They only listened to her stories and full stop. I think my Mom's doctors are the most heartless people I have ever met in my life. Until today, I do not like anyone who officially practices psychology because those doctors etc... contributed to my life being ruined. That is how I feel. I have been scolded by my Mom's medical team and they even dumped my Mom on me after I just turn 18 and there was no other adult around. And, they knew the situation. I was terrified because my Mom was a very violent. My Mom has pitched me, beaten me up, she has biten me with her teeth, she has smashed my head against the table and threatened to beat me with a piece of hard wood. I experienced all these as a little girl at the tender age of 12+ I had to learn karate to protect myself from her violent ways. And, when my Mom was home, I would lock my room's door and place a chair against it. I was that terrified of her.

All our belongings can go missing because my Mom is good at that sort of thing. You never know what is what with my Mom. It is like having a criminal live under the same roof as you.

My aunt kept repeating to me that on my mother's death anniversary I will have go visit her cemetery. I live in a different state from where my mother's cemetery is located. And, my aunt knows that very well. However she repeated her question to me until I said yes. I hate being forced to do something against my will because I have been forced to do things against my will my whole life.

My life is in ruins because of my mother's mental illness and people like my aunt is perpetuating the troubles for me after my mother's death. When I was 12+, my mother's mother said to me that it is my father's job to take care of my mother. In other words, my father's job and mine. And, they never lifted a finger to help. Just helping a little, my aunt has been complaining about the same thing for more than a decade. Unbelievable. Shameful.

Even though my father and I lived in a different state from my mother, we had to travel up and down every weekend because that is demanded of my mother. Sometimes, we had to travel after school and upon our arrival, she won't let us in and we had to travel all the way back. And, my father will not let me sleep at home as it is a school day, I had to go to school. My education was very important to my father. My mother could not be bothered if I succeeded or not.

I have seen more than any of my Mom's relatives have seen with regards her mental illness but people whom I just met behave like I have no idea about my Mom like they are the authority on her behaviour and her illness. Goodness gracious.

Despite this huge handicap in my life I persevered with my studies. My Mom did not give me any moral or emotional support at all. In fact her mental illness cycle will peak just or during my important exams. In other words, I had to deal with my exams and on top of them a mentally ill mother. By my final year in university, I could not take the pressure of exams and a mentally ill mother's break downs anymore.

When I was in my teenage years and early adult years, I was suicidal. I had to call Befrienders a lot. Thank God for Befrienders.

Before XXXXXXXXXXdate, I do not wish my experience to be experienced by anyone else because it is torture. However, after feeling how hard hearted my aunt is. A so called holy person, a church goer, rich person who has successful kids and grand kids. And, she can talk like it is my fault that my Mom beat me up and she (my aunt) had to take her (her own sister) for her injections when I was a kid. I really wish that my aunt must reincarnate as my father (a few lifes) so that she can eat her own words. If my aunt reincarnates and is put in my father's shoes, she would really deserve it. Hope she learns compassion through it all.

Why can't the world give children of the mentally ill a break? I am so fed up with all this troubles that stem from my mother's sister's attitude towards my father and I. After all shel lives a great lives. Rich live. What is wrong with these people? I really cannot stand them. This is my story.

After I wrote the above - I am more myself now, and I totally forgive my aunt and everybody who did nothing to help my father and I. And, everybody else who were heartless towards my father and I. However, I still think that by living a few life times as my father (my aunt) - would do her some good. But, knowing her character, she might become a psychopath and pose a threat to humanity. My father is a very, very kind soul. My aunt is a hard hearted, prejudiced, narrow minded, one tracked mind person.

How I cope? Trying my best to keep out of their way, and hang out with positive people. There are plenty of great people out there. Nnaami is included :)


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