How caring helps me see life from a different perspective
Growing up in a large family and training as an early childhood teacher, caring for children has always been a big part of Coral Gallasch’s life.
When she moved to Hahndorf to begin her first teaching assignment at 22, she met Tony – “the uncle of one of my students, who had a great sense of humor, integrity, and honesty” – and it wasn’t long before she was happily married, and living on Tony’s fifth-generation family farm.
Coral and Tony soon welcomed their first child Sonya, followed by a little brother, Benjamin. But in 1982, the Gallasch family’s life was turned upside down when baby Amy was welcomed into the world.
“She was just the most beautiful baby,” explains Coral, “but I started to get worried when she wasn’t meeting milestones.
“When she was 18 months, the doctors told us there was something drastically wrong with her, but they couldn’t find out what.
“After extensive tests, we were told ‘she will never walk, talk or be toilet trained. Put her away in a home, and get on with your life.’
“There was no way I could do that – she was my child and I loved her. The motherly instincts to protect just kicked in.”
Coral and Tony have been Amy’s carers, in various capacities, for the past 38 years.
Living with total global developmental delay and cerebral palsy symptoms, Amy requires high-support, and is non-verbal. But after a tremendous amount of therapy, Amy learnt to walk at the age of four, and later learnt to feed herself.
Finally, after 32 years, she received a diagnosis.
“Amy was finally diagnosed in 2014 with Beta Propeller Protein Associated Neurological Degeneration (BPAN).
“At that time there were only 25 other cases of BPAN diagnosed in the world – but now there are more than 500.
“For a couple of years, Amy was the only diagnosed BPAN patient in Australia.”
For the first 20 years of Amy’s life, Coral and Tony cared for Amy full-time at home. This meant Coral had to give up her job – and passion – in early childhood education for the “all encompassing” role of being Amy’s full-time carer.
“It’s devastating – you’re experiencing living grief,” Coral explains.
“You’re grieving for the perfect child you thought you’d have.
“You’ve got to learn so much – how to help, how to do things, and meet their complex needs, all while you’ve got a family, a husband, a farm and a business.
“It was – and is – stressful. To this day.”
From the age of 20, Amy’s care was shared between Coral and Tony, and residential care.
“Amy started living in a residential cottage with carer support workers during the week, and came home every weekend for three nights.
“As we’ve been getting older this has gradually reduced.
“Now we are in our seventies – and Amy is in the painful and rapid degeneration stage of her condition – she comes home one night a fortnight.”
Amy spends her days in a wheelchair, totally dependent on others. The skills she learnt as a child – the ability to walk, and feed herself – have been taken away from her as her condition has deteriorated.
This dependence has meant that as her carer, Coral has had to advocate on behalf of her daughter.
“We are her voice, her ears and her eyes,” explains Coral.
“There are so many issues which have to be followed up on her behalf, and we have learnt to be vigilant.
“Even now, when we no longer care for her physically 24/7, we are constantly watching Amy’s back, ensuring that the professionals are carrying out their contracts correctly and that Amy’s care and welfare are not being compromised.
Throughout her life, Amy’s care hasn’t just been the responsibility of Coral and Tony. Her siblings –Sonya and Benjamin – have also played an important role.
“As part of our family they were also young carers of their sister – it was all they knew.
“They would watch her while I did jobs around the house, keep an eye on her for a few minutes…but I could tell it was wearing on them as well.
“They suffered in school I think. They didn’t say anything, but I’m sure they got teased.”
To help manage Amy’s condition as a family, Coral believes carer support groups and respite care played an important role in strengthening family relationships, and helped her uncover the joy of bonding together as a family.
“Caring takes a toll on you because you’re trying to do everything. It’s easy to become overwhelmed.
“So, Tony and I started going to the Carer Support Groups at Amy’s school.
“What we noticed was that there was only one other couple that were still together. The others were single, their relationships had not survived the stress.
“We knew then we had to work at keeping our family together, so we decided to go on camping trips.
“While Amy occasionally came camping with us, she usually spent that time in respite, and our family relationships were strengthened while Sonya and Benjamin had our full attention, as parents.”
In addition to family camping trips, Coral and Tony have also found some downtime from their caring roles by attending respite weekends run by Carers SA, and pursuing hobbies and interests.
“Over the years I learnt to relax using singing as a form of therapy.
“We learned to be thankful for what we have by volunteering in remote PNG, where we set up and still support over 500 children in village kindergartens.”
While Coral admits that caring for Amy has taken its toll – both physically and emotionally – she wouldn’t have it any other way.
“I have become a better person because of my caring experience.
“I see life from a different perspective, constantly marveling at the little things in nature, and the miracle of life – all thanks to Amy.”
If you’re an unpaid carer and looking for support contact us today to find out more about Carers Gateway Services at Carers SA.