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CARER STORIES Amy proves that Women can do anything!
CARER STORIES Amy proves that Women can do anything!
| Amy proves that Women can do anything! |
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| Tuesday, 03 March 2009 01:00 | |||||
At present I am in a committed relationship. However, I have been a sole parent for at least half of my children’s childhood. I have also been married and divorced, re-partnered and then widowed very suddenly, at a time when we were living from paycheque-to-paycheque with no reserve cash flow. Just as an aside, I was not entitled to a benefit until 22 days after my late husband’s death. I went back to work on day 10 after his funeral. I did not have the money to even buy a box of Weet-Bix. My youngest daughter has a vibrant personality, Down syndrome with mild intellectual disability, and is in mostly good health, although she does have significant hearing loss as well as a vision problem. I also provide some episodic assistance to my mother who has arthritis, a thyroid condition, emotional and social issues, plus sensory processing difficulties. This is sometimes called being a sandwich carer - sandwiched between the caring responsibilities of two generations. I have been a working carer throughout most of my adult life, initially due to financial necessity and in more recent years also because I gained social contact and more recognition from that role, and a sense of well-being through having meaningful employment. On the other hand being a working carer has brought about guilt for sometimes being stressed and overtired, and sometimes not being able to attend events that are important to my girls, like school award ceremonies. Further, I often feel deep concern that others are not providing appropriate care in my absence. Although I take pride in my accomplishments in both my working roles, sometimes there is a sense that I have missed out on opportunities for promotion at work as I always need to ensure any spare energy I have goes to my family. I am not available for things like early morning meetings, obviously because of my daughter with special needs. There is always a very real fear of having to reduce my working hours or, indeed, to cease working as suitable carer employment disappears. I don’t want to beat around the bush - being a carer has a huge negative impact on long-term finances, and being a sole parent carer deepens that chasm. A recent example of feeling the pinch was leaving the car un-serviced for twice as long as usual, not by choice but because there was no way that those expenses could be met without falling behind with necessary payments for utilities, groceries, mortgage, and so on. I currently do not smoke, drink alcohol or gamble. My clothes are usually purchased from a recycle boutique; entertainment is usually a DVD and a tub of generic brand ice cream. A walk on the beach or the pilates DVD that came ‘free’ with the ‘expensive’ breakfast cereal is as close as I get to a fitness regime or gym membership. That is something I had 16 years ago. Holidays have three descriptors - rare, short and low-budget style. Where has the money gone? One of the many additional expenses I have had to bear as the parent of a person with a disability is that for 10 years I paid for private speech therapy for my daughter, which hopefully will lead to more opportunities in the community for her, and perhaps employment. The downside to this is that it was probably money and time that should have been shared more equally between both of my girls, perhaps in aiding my older daughter to play ball sports or follow other leisure and sporting interests on Saturday mornings, like most of her peers. Also, surprise, surprise, I do not have very much superannuation. Speaking of my older daughter, she is often very demanding and angry. I believe research suggests that that is a common theme for siblings but one that most families are too ashamed to talk about. I strongly recommend a viewing of the recent Australian movie the Black Balloon, which picks up beautifully on that theme. If I am sounding like I feel ripped off, in some ways, I do feel like that. ‘Burned out’ is sometimes my middle name. A quick look around the mainstream schoolyard is a double-edged sword. Am I grateful that she is there? Oh yes. Am I made painfully aware of how close her peers are to adulthood and independence and how seemingly effortlessly they achieve at school, at sports, academically, in friendships, starting relationships and part-time jobs? Oh yes! In contrast, I know that my girl has had to work hard to achieve a small portion of those things. This is all part of the grief. Not only do you lose the child you were expecting and the family lifestyle you were anticipating but in lots of ways you also lose the future that you were planning. Do I dream of being a grey nomad? Yes I do, but I usually envisage her on the journey with us. Would I like to have grandchildren? Sort of! It would be exceedingly unwise for my daughter with special needs to have children, as there is a fifty-fifty chance that her children would also have a disability. Would the services system and community provide enough support to assist her to parent a child with a disability? I do not think so. Do I have the energy to continue caring for her and her offspring, and maybe even her partner if he has an intellectual disability? No way. I envisage being a primary carer for her, for at least the next 40 years. To finish on a more positive note, I do believe I have developed as a stronger person, with more courage and resourcefulness due to combining my caring role with paid employment.
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