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| Monday, 15 August 2005 07:05 | |||
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We are continually gathering stories from working carers. These stories provide an insight into the experiences of other working carers and provide a source of inspiration and support for us all.
Here is our list of working carer stories. We will continue to add more stories as they become available so keep checking this page. CARER STORIES Residential care dilemma John Hess feels blessed to have had his mother, Mary, living in a unit just down the street from him for the last few years. He has been able to give her the physical help and emotional support she has needed as she ages – but he knows there will come a time in the not-too-distant future when he will have to make a decision about accepting residential aged care for his 86-year-old mum. [READ MORE] Jenny wants her life back In her twenties, Jenny London's world held the promise of all the happiness, financial ease and fun that go hand in hand with the good life. [READ MORE] Jono juggles stardom and care Jono, as he is affectionately known to millions, has returned to Sydney with his wife Margot and children Oscar, 13 and Emily, 10, to be closer to his 81-year-old mum, Sylvia. [READ MORE] Daniel's story Daniel* lives two hours drive away from his mother and works full time. He is the closest family member to his mother and when her health began to decline, he was thrust into the role of caring from a distance. His biggest problem though was his lack of knowledge of the aged care system. This is Daniel’s story. [READ MORE] Cheryl's story My son Dominic who has Down Syndrome has grown into a delightful young man. He is still attending school and is in Year 10. The class is an IO and IM mix (support class for students with intellectual disability) with mainstreaming for electives. Dominic is doing woodwork, visual arts and agriculture. He is very happy at school and loves the social interaction. [READ MORE] Doing the Aged Care Assessment hokey-pokey Samantha’s mother had been assessed as eligible for a place in a nursing home through annual assessments by the Aged Care Assessment Team (ACAT) – a necessary requirement to determine eligibility. This year Samantha arranged for the annual review secure in the knowledge that her mother had been assessed as eligible in three previous assessments. [READ MORE]
Rosemary's story
I am a single Mum with two children, a son and a daughter. My son who is 12 years old has Klinefelter’s Syndrome, a chromosomal disorder which causes him mild behavioural and delay problems. However, he’s mobile and can look after himself pretty well. I’m a pretty alert mother and, fortunately, I found out he had Klinefelter’s when he was quite young. Often, boys are not diagnosed until they reach puberty and I know things have turned out better for my son because his condition was discovered early in his life. He goes to a regular school learning in a support unit. [READ MORE]
Caring for Supergirl
My daughter was assessed as having mild autism at four years of age. She is now eight and I call her Supergirl. No-one provided me with any information on autism or developmental delays and what that meant for her or me. I received no information on therapies or what we could do to help her. It seemed I was just expected to cope with no support. [READ MORE] Relationship problems
My father died recently and my mum is developing dementia. I'm the sole carer for her which has been difficult as we have not had a good relationship. My mother never accepted me as a lesbian. I have no sibling support so her care was left up to me and my partner. Given my mother’s lack of acceptance of us as a couple I didn’t expect my partner’s help, but she has been very supportive.
[READ MORE] The boss from hell I have great respect for employers who support their workers who are also carers. Mine is a different story. I worked in aged care and have done so for the past 20 years and love every moment. I also care for my 86 year old mother and 85 year old stepfather. My mother lost the sight in her left eye and her right eye has a cataract so her visibility is very poor. [READ MORE]Peer support at work Caring for someone and working at the same time can be stressful and isolating. Without supports in place it is easy to bring the pressures of the working day home, creating even more stress. Working carer Belinda is a sole parent for a daughter with special needs. She also assists in the care of another family member. She has found it helpful to set up a formal peer support system at work. This is her story. [READ MORE]
When caring ends
It is inevitable that your role as a working carer will end or change at some point. When caring ends you may want or need to reconsider your working life. You may be able to join an employment support program at Centrelink, and look for more or different work. Coping with emotions about your change of caring role at the same time as you are changing your work situation can be challenging. Working carer Stacy Hughes has faced all of these issues.
[READ MORE]
When the big picture is too scary "As a working carer when you try to look at the big picture it can sometimes be a little overwhelming, so I tend to ignore the big picture and just concentrate on the immediate task at hand. I guess this story is about strategies for coping when it all seems too much." [READ MORE] Night sweats as a carer "As a working carer it wasn’t the caring that got me down. Love, respect and companionship kept us both buoyed. It wasn’t the juggling of work, home and family, though I’m sure that when the phrase ‘multi-skilled’ was first coined they were referring to a working carer. No, it was being responsible for the administration of some else’s affairs that gave me cold sweats." [READ MORE] A supportive employer "A few months ago, my partner Peter was very ill. Then he went into hospital, just when I was starting a new job and a new role for me. I had to go to the hospital a lot to speak to staff, and my employer was very supportive. I’d like to share my story so other working carers can see that it’s possible - and positive - to work and care at the same time." [READ MORE] Working from home I would like to share with other working carers how I juggle my care and work commitments and end up with a satisfactory outcome. A year ago I was working casually as an administration assistant as well as caring for my partner. His medical condition is complex and his health fluctuates daily. [Read More] Michele's Story "I have been working for On-Focus Inc, a disability support organisation at Casino in Northern NSW since May 1998. I have a daughter with spina bifida – she’s 22 now – and an ageing mother. I have been here now for seven and a half years and wouldn’t have been here that long if it wasn’t a good place to work. My employer Vivienne Phillips has been very supportive of my situation." [READ MORE] When care for the carers starts to mean more than words "My name is Cathy Harnack, I am 56 and I have been a carer for my husband for over ten years as he has progressed from moderate to advanced Parkinson’s disease. In July 2004 I also became the primary carer for my father who has severe heart failure, hearing loss and prostate problems." [READ MORE] Job sharing Working carers often seek part time work to better enable them to balance work and care. But part-time jobs are hard to come by. This article investigates the option of job sharing, where a full time position is held by two people. It is based on the experience of working carer Anne-Maree Newbold, who shares her story with us. [READ MORE] Tips for working parent carers Working women who have children with disabilities often struggle to find suitable work, and when they do become employed, find that it is difficult balancing the responsibilities of both work and care. Some find part time work in organisations that are supportive of their situation. In this article, working carer Jenny Salgo offers tips to parent carers with young children. They are based on her experience of working in the human services area and raising her children, one of whom has a disability. [READ MORE] Leanne and Phil's story "My life was fairly normal. In 1987 I met my husband; we moved in together and were planning our future at a leisurely pace. Phil started having funny “turns”, he was experiencing some stress at the time and this is what we put it down to. However in June, 1988 he was diagnosed with a brain tumour and out lives turned upside down. He underwent surgery and radiation therapy and told it could return in five,10 or 30 year’s time." [READ MORE] Shared Vision - Donna's story When Donna Smith was growing up her mother cared for her. Now the roles are reversed and Donna is caring for her mother. And in a further reflection of the intergenerational nature of caring Donna’s daughter is also helping with the care of her grandmother. This is her story. [READ MORE] When the big picture is too scary "As a working carer when you try to look at the big picture it can sometimes be a little overwhelming, so I tend to ignore the big picture and just concentrate on the immediate task at hand. I guess this story is about strategies for coping when it all seems too much." [READ MORE] Night sweats as a carer "As a working carer it wasn’t the caring that got me down. Love, respect and companionship kept us both buoyed. It wasn’t the juggling of work, home and family, though I’m sure that when the phrase ‘multi-skilled’ was first coined they were referring to a working carer. No, it was being responsible for the administration of some else’s affairs that gave me cold sweats." [READ MORE] Working from home I would like to share with other working carers how I juggle my care and work commitments and end up with a satisfactory outcome. A year ago I was working casually as an administration assistant as well as caring for my partner. His medical condition is complex and his health fluctuates daily. [Read More] When care for the carers starts to mean more than words "My name is Cathy Harnack, I am 56 and I have been a carer for my husband for over ten years as he has progressed from moderate to advanced Parkinson’s disease. In July 2004 I also became the primary carer for my father who has severe heart failure, hearing loss and prostate problems." [READ MORE] Night sweats as a carer "As a working carer it wasn’t the caring that got me down. Love, respect and companionship kept us both buoyed. It wasn’t the juggling of work, home and family, though I’m sure that when the phrase ‘multi-skilled’ was first coined they were referring to a working carer. No, it was being responsible for the administration of some else’s affairs that gave me cold sweats." [READ MORE] Working from home I would like to share with other working carers how I juggle my care and work commitments and end up with a satisfactory outcome. A year ago I was working casually as an administration assistant as well as caring for my partner. His medical condition is complex and his health fluctuates daily. [Read More] Michele's Story "I have been working for On-Focus Inc, a disability support organisation at Casino in Northern NSW since May 1998. I have a daughter with spina bifida – she’s 22 now – and an ageing mother. I have been here now for seven and a half years and wouldn’t have been here that long if it wasn’t a good place to work. My employer Vivienne Phillips has been very supportive of my situation." [READ MORE] When care for the carers starts to mean more than words "My name is Cathy Harnack, I am 56 and I have been a carer for my husband for over ten years as he has progressed from moderate to advanced Parkinson’s disease. In July 2004 I also became the primary carer for my father who has severe heart failure, hearing loss and prostate problems." [READ MORE] Julie's story "Caring for a child with a disability is, more often than not, a life long task that poses many challenges for parents. Learning how to cope with the different stages of the child’s development, trying to juggle work and care, and helping the adult child gain independence are just some of the challenges. This is a mother’s story of how she and her husband developed coping strategies that worked for them while raising a son who has Downs Syndrome." [READ MORE] Carers Speak Out
North Coast working carer Francesca Seychell has been negotiating for 20 years for quality services for her daughter who was born with a severe intellectual disability. Today she is adding her voice to those of family carers at the Walk a Mile in My Shoes day of action in Canberra. The NSW Working Carers Support Gateway, based in Lismore, has responded to the Walk a Mile campaign call to ‘Send a Carer to Canberra’, and funded Francesca to attend.
Post school options cutbacks
Post school options for young people with a disability have been slashed leaving many parents desperate for solutions for their children as they approach school leaving age. We spoke to two such parents about their fears for their children and their anger at the cutbacks to services. This is Deidre and Liz’s story.
[READ MORE]
Perspectives on family life "Our son, Lewis, turns 12 this month. Sometimes I look at him and wonder where the last 12 years have gone. Back then, the shock of having a child with severe cerebral palsy eclipsed everything else. I felt it separated me from my friends, family and the rest of the world, as my experience of parenting took such a dramatic shift from theirs. I became consumed with therapy programs, medical appointments and grief." [READ MORE] A carer reflects "Recently my mother died, leaving me with my 100 year old father, of stout body but slightly failing mind, to support. Like so many older people who resist change, he does not want to go into hostel care, nor does he see the need for home support." [READ MORE] Politicians, Pennies, and other Ps I am a single working parent of four children. My fourth child has Down Syndrome and a number of other health related problems. He is 14 years old. He has no care except from friends who are willing to care for him. I wrote a poem while supporting another agency to get funding to build a facility for children with disabilities 13 -18 years of age, but of course, the departments are all buck passing and will give no commitment. [READ MORE] Finding the balance "Being a working mum has always been both a blessing and a curse for me. A blessing because it has allowed me to remove myself from the stresses at home and be a different person at work with a separate identity. A curse not only because I haven’t always been available for my kids and partner because of the constraints work has sometimes placed on me but also because it’s just so exhausting trying to be everything to everybody. Some of my days I’m sure have been longer then the regulation 24 hours!" [READ MORE]
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