Last month we caught up with Sandy Lowe – mother, stepmother, grandmother, and carer. Sandy lives in Broken Hill and cares for her daughter Amanda, who has Rhett Syndrome.
Rett Syndrome is a rare genetic neurological and developmental disorder that affects the way the brain develops. The disorder affects mostly females and causes a progressive loss of motor skills and language, and limited life expectancy.
Caring for a loved one with Rett syndrome is not for the faint hearted, and our conversation with Sandy revealed a woman who is not afraid to face what needs to be faced, or to fight for what needs to be fought for.
Sandy lost Bill, her beloved husband of forty-two years, in January this year, and feels the enormity of his loss every day.
“We were together for forty-two years. I can’t sleep at night because he’s not there… I do miss him so much.”
The Caring Journey
Sandy began her caring journey in Adelaide forty years ago, caring for her parents as their health declined. During this time Bill was her rock. This was the beginning of caring partnership that was to last many years.
When their youngest daughter Amanda was born, Sandy and Bill already had four children between them (Bill had three from a previous marriage). They knew all was not as it should be but questioned the initial Autism diagnosis.
Wanting answers, Sandy requested a second opinion. Amanda was referred to Adelaide’s Flinders Medical Centre where after three days of tests, she was diagnosed with Rett Syndrome. At the time there was no one specific test to confirm the diagnosis and it would be another 15 years before Amanda’s condition would be confirmed with a simple blood test.
“I had ambitions. I wanted to go back to school, finish off year 12, and go to Uni and do something. But my dreams went by the wayside. I had to put it all on hold and now I’m too old. But that’s the way it’s got to be. I live in the real world. I don’t sit and mope… I carry on.”
For over thirty years Sandy and Bill cared tirelessly for Amanda. “Amanda is incontinent, she can’t dress herself, she can’t feed herself, she doesn’t speak – so it’s all guess work. It’s total care. It’s like she’s a living doll…”
The years of caring did take its toll and Bill developed health issues of his own.
“All the care took its toll on Bill. He was silly, he refused help…he didn’t want her to be looked after by anyone but us. He wanted her so close to him – he was overprotective…to his detriment really.’
When Bill became ill, the caring load doubled, the caring team halved, and Sandy began to struggle.
“When he got ill, I ended up caring for her and him. Over the last twelve months [of his life] he was in and out of hospital, in and out of aeroplanes, going forward and backward to Adelaide, adding stress, stress, stress!’
During Bill’s illness and following his death, Sandy’s own health began to deteriorate. Her symptoms were attributed to grief and stress, but she felt there was something else going on. Once again Sandy’s instinct was right, and after a series of tests she was diagnosed with a seriously overactive thyroid and was prescribed medication to help manage it.
Sandy first heard about Carer Gateway through Amanda’s Disability Service Provider. At the time her thyroid was playing havoc with her health, and she was struggling to cope.
“ I felt like I was a marionet puppet on a string…I fell over in the main street, I fell over crossing the road, I was frightened to cross the road – I was frightened I would fall over, and a car would run me over. I thought ‘ how am I going to get food?’ I don’t do things online, and Bill, who used to help with these things, was gone. I needed help to do my shopping – someone to be with me if I fell over.”
Carer Gateway funded a care worker to visit twice a week and help with household chores. For Sandy, that meant help with grocery shopping, and other general errands. The funding lasted several months, and ensured Sandy had the support she needed while she got back on her feet.
While Sandy was grateful for the much-needed household support, she believes it was the companionship the care worker provided during those visits that lifted her spirits and helped her heal.
“The care worker they sent- we just clicked…she’s such a wonderful person. She’s got common sense and I like people with common sense.’”
The Best Thing (about being a carer)
“My daughter, her smile. Her smile is a killer. If she looks at you and she’s happy and she has that look on her face… that makes my day every day!”
The Hardest Thing (about being a carer)
“No time for myself.”
What Keeps you Going
“I love life!”
Hopes and Dreams
“Moving back to Adelaide so there can be Amanda, Kylie [ Sandy’s older daughter], Ryan [son in law], Harry and Christian [grandchildren] living all together under the same roof.”
“Don’t give up, fight! Fight for everything for the person you’re caring for. Never give in. Be dogged.”
Where to Now
“Amanda’s priority one – always has been and always will be until I join my husband.”
If you’re one of Australia’s 2.7 million unpaid carers, you can access practical advice and support by contacting Carer Gateway on 1800 422 737.