Sharing your stories

I care for my 87(soon to be 88) yo mother. As carers, we are a diverse group, but all have our everyday battles. There are the physical and emotional battles of caring for our loved ones, and then there are the battles with authorities that think they know what it is like for us. Let me say, most have absolutely no idea, and although sometimes well-intentioned, they can sometimes create the worst situations, and often forget why they are there, it is not for the "pats on the back for doing a good job", it is just doing the job, making that persons life a little more comfortable, or bringing some happiness into their lives. So to all those who think they know better, never lose sight of what it is all about, it is about the person who requires the care, not about the administration costs, or the rosters or how to cover for the staff member who just called in sick. Remember it's their lives, their time, their dignity and their rights. Carers know, we put our lives on hold, our ability to earn a decent living is set aside, and we give our all. And we wouldn't have it any other way,so don't expect us to accept less than the best care for our loved ones. Every day we battle for them in one way or another.

Less than one week after my 18th birthday, my adoptive father died of leukaemia. My adoptive mother was bereft, and was soon diagnosed with clinical depression. She started having panic attacks over such things as housework, going to the corner shop; just everyday functions that become second nature to most of us. My sister was by now living overseas and our mother mourned her, making her depression deepen. She relied heavily on me, throughout my university and early working life, to take care of the running of the household, grocery shopping, taking her places, cooking, cleaning. She was then eventually diagnosed with lung cancer - but by that time it had already spread to her brain, and there was no hope of survival beyond a year.

For the years I cared for her, through the depression and the cancer, I received no payments (I had no idea of such things), had few friends, no social life to speak of, and the pressure of caring for someone who did not like me and would rather be looked after by anyone but me. No matter how hard I worked, I was reminded of my worthlessness as a human being. However, I stayed - isn't that what one does for family? Plus, this was still my mother and there *was* no-one else to help. Friends of the family were not aware of how hard it was for me, looking after someone who disliked me so intensely.

My mother died approximately six and a half years after my father - it was too long for her, really, to be separated from the person to whom she was most devoted.

I was 24 and knew little of the usual life of a young woman, and having had received no guidance into womanhood, and knowing I would now never receive any, I felt very lost and alone. Even family friends drifted away. My only guide as a young adult was to help those in need.

These years of caring had a huge impact upon me. I am now the mother and carer of a boy with an ASD, who requires my constant assistance and support. I was surprised that I was able to get a Carer's Allowance, as I would care for him anyway. But I still do it all basically by myself, as that is what I learned to do all those years ago.

I see the support that young people receive who are in a similar position to mine when I was so young, and am glad times have changed. The community is beginning to recognise how caring for someone is not only something you do, it is WHAT you do.

Fiona

I have been caring for my two elderly parents for years but have been an official Carer for the past 7 months and never knew anything about carers week.
Sometimes I feel very overwhelmed and very alone and would have loved to be able to participate in some of these activities.
Is this because I and only on a carers allowence and dont count in these activities.
I take my parents to many places and always have to pay full price as I dont have a carers card and find that it does become very costly at times but I would never deny my parents of anything they wish to attend. Can anyone let me know if I am entitled to a carers card.

In Carers Week, I am invited by DADHC to be hectored by government about developing "resilience". If I have time and private transport, I can go to a far-flung one-off pamper and information session on Wednesday.

Like heck! I do chemo that day.

It is infuriating that cancer treatments involving expensive drugs of varying efficacy are on Medicare, and yet supporting my 8 year old son to overcome autism and get him job-ready costs the family capital that is fast running out. It's not being spent on horse riding, cello and surfing classes.

Cancer is primarily related to stress and lifestyle; not genetics or pollution. Despite drug company propaganda, it is clear that shutting the gate with chemo after the cancer horse has bolted is not especially cost-effective. [Dean Ornish, Ian Gawler and others].

The most common meditation courses developed for cancer patients (by the Gawler Foundation) are not on Medicare.

I ate organic, didn't smoke, do drugs or drink, breastfed for 8 years, was vego for yonks, walked heaps, meditated and cycled occasionally ... and yet I was stressed.

Why wouldn't I be? Because of the need to provide autism and provide for my sons in later years, I can't always afford essentials, let alone to indulge hobbies, go for a holiday or procure appropriate in-home childcare during the end of term (and my kids are, quite obviously, unsuited to mainstream after school and holiday care programmes).

If autism therapy was on Medicare and if there was a special needs education revolution, I might have afforded mammograms in time. I wouldn't be needing the whole body and bone CT scans, the nuclear medicine, the 4 surgeries, the FEC 100, the Taxofere or the 5 year course of Aromatase Inhibitors, expensive radiation therapy, the specialists, the palliative care and all the emotional support that goes with managing a 3b breast cancer.

Because autism isn't on Medicare, I have 4 years to live (give or take), according to the oncologist.

The hair loss, bone aches, surgery, radiation burns, the nausea, the falling nails, lowered immunity and mouth ulcers are meant to fit around making school lunches and homework supervision.

And yet ... Centrelink wants me to do a job test!

Although sick and financially stuffed, I don't qualify for a disability pension, sickness benefits or Carer Payments.

I know of another woman whom Centrelink is harassing to attend job interviews, despite the fact that her doctor has written to point out that she is undergoing chemo prior to a bone marrow transplant.
The sensitivity is impressive.

One would think that all money clawed back by forcing parents back into work, would be best deployed sorting out social problems and assisting the severely disabled with therapies and accommodation.

Oh, and happy Carers Week!

Jane Salmon
Lindfield

A Reflection for Carers Week

When acknowledging carers across Australia please bear a thought for those who are caring for individuals with a Fetal Alcohol Spectrum Disorder (FASD).

Raising a child or supporting an adult with FASD is challenging, tiring, emotionally and financially draining and parents/carers and families who are supporting these individuals are in crisis and are burning out.

These parents/carers have become the information source for the providers rather than the other way round and this adds to their burden.

More often than not their concerns that their child may have a FASD have been dismissed by the medical specialists they have consulted, often without any formal investigation or examination even taking place and they feel they are the ones perceived as having “the problem”.

Even when their child has been diagnosed most parents say they have experienced a lack of professional awareness when seeking follow up support by health, education, and social service providers and that the services offered by these agencies often exacerbate their child’s condition and sets them up for further failure.

So parents/carers say cold fear grips their hearts because they know their child is in desperate need of appropriate treatment and intervention, while at the same time no one appears to be listening.

Sue Miers AM
Spokesperson
NOFASARD
PO Box 206
Normanville SA 5204
Mob: 0418 854 947
www.nofasard.org.au
Email: sue@nofasard.org.au
Patron: Her Excellency Ms Quentin Bryce
Governor-General of the Commonwealth of Australia

Hi, My name is Toni and I have been a community carer in the Southern Highlands area of New South Wales for over seven years. I have looked after many different types of aged, disabled and mentally disabled people along with some children in our community, for their carers too (usually parents or spouces), not only offering personal care and other functions but also offering a day or a few hours respite for their carers. Because of my love and satisfaction of the "job" of community carer, I have written a book titled "Strong Hands, Gentle Heart" which looks at the role of the community carer, offering inspiration, humour and some education as well. It is a subject of huge proportion.
Carers in our communities are a very special breed of human being. They are caring, patient, mostly well educated, altruistic and thinking types of people who are lowly paid and often not looked up to as people who provide a great support to society in general. Sometimes they are even seen as people (usually women) who are unable to do any other type of job. Ironically, this type of job is a specialist type of job, being multi-skilled and multi-tasked. Not everyone can do it. A job of service to mankind, it can be viewed as a type of public service.
I am proud to be a community carer and it takes a huge amount of talent, skills and compassion to be one. My hope for the future of community caring is that there is more and more on-going training along with the Certificate 3 and 4 in Aged Care at TAFE colleges and as we all learn and train to enhance life for those less fortunate than ourselves and work to make our communities better places, the rate of pay will increase to somewhere where it should be to reflect the skills and talents the job requires. It would also be wonderful to see more males taking on the role of community carer as they also have a sets of skills to bring to the table which could also equalize the imbalances in our pay.
Community carers should all be commended for the wonderful role they play in our society and respected for such. Toni

My mother in law is 88 and lives alone. I am a recently retired art teacher aged 61. For the last 21 years I have willingly looked after her gardening and other chores since her husband passed away. Two years ago she broke her hip and after a long recovery is still able to live at home with family assistance. She is no longer able to be independent and I have enjoyed providing a lot of assistance.

I visit daily, do the gardening and mowing, organise her daily medication, provide at least one meal daily, take her to doctor's appointments, do her grocery shopping, collect her prescriptions and pay her bills.

I enjoy being a support for her and willingly give up a few hours of my time each day. I sincerely believe she wouldn't cope at home without such support and most likely would be in an aged care facility. I'm sure my willingness to be there for her is repeated all over Australia by families acting as carers.

I do love helping and have never even considered enquiring about a carer's allowance. Is it selfish of me to look into this?

My mum had been there for me all my life even after my marriage she migrated to Australia and lived with us, taking care of all my three children and us and cleaned and cooked as well.

My mum became disabled as a result of multiple strokes in October 2000. She was in the Canterbury hospital for almost 6 weeks which in itself was a very stressful and emotional time as doctors informed us that she was not going to live through the coma and we had to make a decision to switch off the life support machine.

Out of 10 children, I am number 8 and I alone voted against the decision as I could not do this to my mum who had given so much to me as I believed that such a decision was for god alone to make.

When she finally came home after a 6 week stay in hospital, she was totally disabled and reliant on the hoist lent by the Canterbury Hospital for 3 months only.

We had also explored the option of a nursing home but numerous issues were pulling at out heart strings. Firstly, there were no Muslim nursing homes, the cultural, food, language, cleanliness and the location etc which made this idea impractical.

She had lost her centre of gravity and would fall to the right side if she was placed in a sitting position or stood up. Rehabilitation, a lot of emotional support, and private physiotherapy has seen a certain degree of improvement in her overall condition. She was able to work within the room only with the assistance of a worker and a person on each side of her. I walked her in the corridor approximately 4 metres in length each morning and night.

She was also on the peg tube which had to be monitored 24 hours. I learnt a lot very quickly, how to clean the stomach area, the peg tubes and to change the peg feed etc. This alone cost approximately $800 per month in maintenance costs.

An electric air mattress was also required to prevent bed sores which cost $120 per week.

Added to this, there were diaper costs of approximately $100 per month, increased electricity bills, water bills and medication bills.

I had to give up work for 9 months to be a full time carer and had never imagined that it would be such a tiring, demanding and costly exercise.

In the 9 month period I weaned mum off the peg tube and weaned her on soft puréed food.

I was not eligible for the full cares allowance as it was asset tested (although assets/home do not produce income) and received only the minimum untested carers payment.

Doctors have indicated that mum will never ever be the same as she was prior to the stroke. She is emotional and cries a lot and I have learnt to handle her. I cannot be emotional if I want to continue to care for her.

I also give thanks to my local GP who provided mum with home visits and medical support for the past has 9 years without which it would have been impossible to continue care at home. I also wish to give recognition to the chemist for his support in this period.

Home care did not commence service until late in March of 2001 when she had resumed some mobility in her limbs. I need to give recognition to Home Care as well which enabled me to resume work full time.

While there are ongoing small teething issues with Home Care (these are usually resolved with discussion) generally they do a fantastic job in caring for the elderly in their home.

I work full time and my day begins at 5am and usually ends around 11 pm as I have 3 children (two of whom are now married).

Dad was a very sporty, outdoor person who travelled a lot and was very reliant on mum for everything and did not take her illness very well.

In late 2001, early 2002 my dad was diagnosed with Dementia.

His condition was very bad and with mum as well to look after I had to make the heart wrenching decision to place him into a nursing home close by. It was a cruel thing to separate my mum and dad as mum had her full mental capacity but I had no choice.

Both dad and I cried the day I moved him into the nursing home. In the beginning I would bring him home every week end but the nursing home informed me that it affected the funding they received from the government although my monthly contribution was for the full amount.

But I still brought him during the day both Saturdays and Sundays weekly. Dad over time forgot everyone but his face would light up every time he saw me. Over time he lost all his faculties and mental ability and started to lose his dignity as the Dementia progressed. I prayed to god to give him peace. The Dementia advanced very quickly and he passed away within a two-year period in late 2003.

I sincerely believe that the nursing home was not the right environment for him and led him to an early grave.

Some of the people who visited mum have since passed away and mum is still around after 9 years mentally alert. She has just seen her great grandchild, my first granddaughter.

Although I would do the same things all over again for my parents I myself do not want to be a burden to any of my children. If given a choice by the hospital and the doctors, if ever I am in a similar situation, that my children and my husband respect my wishes and switch off the life support.

My name is Tania Hayes, I live in Wollongong, NSW, and I became a carer at 22, when my fiance, Warren Hayes, was diagnosed with a life threatening brain tumour. From the moment that Warren fell sick I decided to give up my job and the carefree life I knew, to be by his side in the hope that together we could somehow pull through.

After 446 days in hopsital which involved 20 different operations and many life threatening infections, Warren was paralysed and wheelchair bound and doctors suggested he should be placed in an old age nursing home on his release from hopsital. After hearing this news I decided that there was no way I would allow it and brought him home to become his fulltime carer.

12 years on I am still caring for Warren each day and I love him more than ever. Even though he relies on me for every aspect in life, from toileting, showering, dressing and all day to day activities, today he has a better quality of life than any doctor could have ever expected. And after all the pain and suffering of hospital, 4 years after coming home, we were finally able to get married and now have a beautiful little boy named Josh. How life has come full circle. We are truly blessed in everyway to have been given this second chance at life.

This journey has certainly been a long and eventful one that I could never have expected going on at such a young age. But having been through these moments I am immensely proud of what we have acheived together and as a family we now live our life to the fullest and cherish every day we have.

When I first became a carer, I was quite ashamed of telling people that I was a carer, having given up everything in my life to perform this role, that was not very recognised. Now 12 years on, I am proud to stand tall as an inspirational speaker sharing our story throughout the country, lending strength, hope and encouragement to all who hear our story. 'Love Has No Limits'.

By being a carer, I am giving my loved one the greatest gift of all, a life worth living in society and this is the most rewarding and fulfilling job I could ever imagine doing.

All carers in Australia should stand tall and be extremely proud of what they do. They save the Australian Government in excess of $30.5 billion dollars in unpaid care. They truly are the unsung hereoes in Australia and I am proud to be one.

I have news for Carers Australia: at my house, every week is Carers Week. Carers Week is a cynical exercise is acknowledging the work done by carers. It is a "pat-them-on-the-head" and tell them they are good little girls (I know they are not all female) and while they are about it, just keep on doing the same for another decade or two. It ranks in the same league as the $600 bonus and the miserly $50 per week carers allowance.

There is a very big difference between carers who choose to look after an ailing spouse or ageing parent at the end of their lives or a friend or family member who is recovering from an illness or accident and carers like myself. My group of carers has been caring for a child with a disability, now a man or woman with a disability, for decades. My own son is thirty-two, but some of the parent-carers I know are in their eighties and one is in her nineties. It is a disgraceful situation that there exists in this rich country nowhere for our sons and daughters to go. What, you thought there were group-homes? You must have been watching "Home and Away". The only way to get your disabled family member into a group home is to be dead!

Just pause for a moment and think what that means for people who are the most needy, innocent and vulnerable in our society. At the same moment in their lives, a person with the cognitive capacity of a small child will lose in one fell swoop, the primary carer, the only home ever known and the local community. How would you cope with all that? And yet that is what we expect of our intellectually disabled people. In case you were wondering about the local community part, this is because a bureaucratic nightmare known as the Vacancy Management System ensures that if a disabled person gets one of the rare vacancies, it is almost invariably away from the local familiar community.

And where are the carers in all this. We are getting older and more careworn, frantic about the futures of our precious people and in many cases, afraid to die. We feel abandoned and exploited and we look to Carers Australia to advocate for us to improve this appalling situation. What do we want? We can say it in a few words: Supported Accommodation that is appropriate and local by the time our sons and daughters are 25 years old. Why should this be so hard? It happens as a matter of course in the United Kingdom and many other countries around the world.

We need to retire after decades of caring. We choose to retire from caring but we have no freedom of choice. We need to have the peace of mind of seeing our people settled in an out-of-home residence and we wish to assist with their transition while we are still able. We don't need any more acknowledgment or pats on the head, we don't more money or more respite, we are way past all of that. We don't need laughter workshops and we certainly don't need Carers Week - we've already had thousands of those.

Hi, I’m Paul Livingston, a National Ambassador for Carers Australia. I’ve made my living for the past quarter of a century as a comedian and I’ve always been amused by the general definition of comedy as “light entertainment”. Comedy is anything but light, it can be a weapon, a tool, and more importantly it can be a healing tool. When recalling the two years I spent caring for my terminally ill mother, I find my memories of the times we managed to laugh together to be some of the most precious. As humans, even in the darkest places we find humour, it doesn’t cure, but it does heal, it provides relief, it heals suffering. Humour can be described as light-hearted and I find this definition more satisfying. It lightens the heart. And hearts can get pretty heavy under the circumstances experienced by both the carer and those cared for. Toward the end of my mother’s life she became frustrated at her gradual loss of independence, and for the first time in my life, I heard her curse. “Bugger” she would say occasionally, nothing ever stronger than that. Then she’d apologise to me, her middle-aged son, and I’d call her a potty mouth and we’d both laugh. There were many small moments like this. I now find these moments are like little treasures from that time. I would love to hear from carers who have also found such inspiring humorous moments.
Paul