Member story told by her mother
I was shopping at Garden City with Sarah when she was having a bad Dystonic episode in her wheelchair. An elderly gentleman also in a wheelchair with his Support Worker asked if we needed assistance. When Sarah settled he asked me “if I get any help?” I replied that “I didn’t”, he handed me a business card and explained that ‘ELBA’ will help us and to call them.
My time was consumed around the clock and with what time I had to rest I would collapse with exhaustion. I became a single mother with five-year-old triplets, and our second home was in ‘Princess Margaret Hospital’ because Sarah was so sick most of the time, and Carl and Annie needed me more than ever at such a vulnerable age. On a few occasions I found myself in the emergency department being treated for exhaustion and dehydration. The sleep deprivation was the hardest. Sarah would sleep for two hours and be awake crying and unsettled for up to six hours, her body would be so painfully stiff and through her exhaustion she’d sleep another couple of hours but wake up again unsettled. My weight dropped down to 48 kilos and my friends, family and Doctors were very concerned. I had to get help!
I kept that ELBA business card for two years and now was the time to call. I was broke, desperate and isolated. I remembered how sincere that gentleman was and I made the call and made an appointment.
At my first appointment the Elba Consultant was on the phone asking organisations for immediate financial assistance for me. She explained to me the process of an application for in-home respite and I’ve never looked back since. I was relieved to walk from her office that day knowing I was not alone, and help was at hand with Elba genuinely there to help me and my family. The in-home respite hours where approved and Elba began sending me Support Workers to assist me with Sarah’s care. It was life changing
As Sarah became older, her condition became worse and impossible for one person to physically handle her. Sarah’s Specialists, Doctors and Therapists were concerned about Sarah returning home from ‘Princess Margaret Hospital’ after major surgery, with the current hours allocated for our in-home respite. Elba attended meetings with Specialists, Doctors, Therapists and Disability Services to put in place what hours were required for Sarah to be cared for, so she can maintain living at home. The application was submitted by Elba and we were all happy with the outcome for Sarah’s in-home and post school options program.
Sarah’s care is around the clock and most of the time we need two Support Workers to work with Sarah together due to Sarah’s very dystonic movement disorder. Her strength in her tone along with stiff muscle spasticity can easily injure a Support Worker if handling protocols are not followed. Sarah requires repositioning two to three times during the night to keep her comfortable, manage her pain and prevent pressure sores. Over night management is crucial for Sarah to be settled for the daytime. Without nighttime management will lead to many uncontrollable dystonic episodes, seizures and vomiting.
I don’t have the time and the mind space to have to interview, provide training and take care of the taxes, insurances, wages and superannuation required for Support Workers. I can confidently leave all that work up to Elba! All I need to do is request support when needed. It’s the perfect scenario for myself, my family and especially Sarah because I can spend more time focusing on her needs and have time to be a Mum for Annie and Carl as well as looking after myself now that I am fifty years old.
It’s been extremely challenging coping with triplets in their stages of life and spreading myself thin between the three as a single mum. Sarah’s disability is severe and complex with not just one disability but also many disabilities. Sarah’s physical disability is severe and managing her epilepsy and anxiety is just as challenging.
Without the support from the medical staff, Elba and Disability Services it would certainly be impossible for me to continue caring for Sarah at home, and that’s devastating to contemplate. We know from previous experiences with Sarah having out-of-home respite due to me having surgery, it was a nightmare! Just after a few days Sarah ended up in emergency at ‘PMH’ with severe dehydration and chronic anxiety and distress. It took several weeks for me to get her back to where she was before that experience. I know that Sarah would not survive being away from her home and family.
Stefanie, Ryan & Merrylin, with the rest of the staff at Elba work together with me focusing on Sarah’s best interests. They will work tirelessly with medical staff, Disability Services and anyone that may assist in supporting Sarah long term for her best outcome. Giving Sarah quality of life at home is what we all work for. This is how I cope! Elba staff are our Guardian Angels!