Yolanda
Content Warning: These stories are about violence, abuse, neglect and exploitation and may include references to suicide or self-harming behaviours. They may contain graphic descriptions and strong language and may be distressing. Some narratives may be about First Nations people who have passed away. If you need support, please see Contact & support.
After her mother-in-law had a series of incapacitating strokes, Yolanda felt it was her duty as an Arabic woman to take care of her. She was already caring for her husband, who had an acquired brain injury, and raising a young family of six children.
Yolanda is now in her 50s. She told the Royal Commission, through an advocate, about the toll all of this caring has taken on her relationships and health.
Yolanda has a brain aneurysm that she attributes to prolonged stress. She also has had epileptic seizures, major depression, anxiety and panic attacks, as well as back pain, diabetes and high blood pressure.
When Yolanda married her husband more than 20 years ago, her mother-in-law was living alone in a government housing unit. After her stroke, her mother-in-law was unable to climb the stairs to her bedroom and bathroom, so she slept on a couch downstairs.
Yolanda visited daily to care for her, bathing her in the downstairs laundry. The housing authority was told of the situation, but offered no alternative accommodation.
Yolanda found it difficult to access respite care. Her husband became distressed when anyone but a family member cared for his mother. When Yolanda did place her mother-in-law into respite care so she could take her children on a holiday, she had to return early because her mother-in-law developed a severe infection from bedsores.
Yolanda’s family began to struggle financially. Her husband’s brain injury prevented him from working, and between raising her children and caring for her mother-in-law, she was too busy to find a paying job.
When Yolanda’s family lost their home, they moved into her mother-in-law’s two-bedroom unit. When the housing authority found out, they evicted her family.
It was only when her mother-in-law was diagnosed with schizophrenia that Yolanda was referred to a disability support service. A support worker came for one hour in the mornings and one hour in the evenings.
Yolanda said that in caring for her mother-in-law, she had been unable to give her children as much attention as she would have liked when they were growing up. Her children also struggled to understand their father’s brain injury and how much care he needed.
She believes the sacrifices she made contributed to her daughter leaving home and refusing to speak to her for several years. She also feels she neglected her own parents in the later part of their lives, because she was so busy caring for her mother-in-law and husband.
Yolanda told the Royal Commission that support for carers, including psychological support, should be included in NDIS plans for a person with a disability. Cultural practices also needed to be taken into account in NDIS plans, so families can care for their relatives at home for as long as possible.
She would also like to see family carers trained and paid at the same level as professional support workers, to help families avoid some of the pressures she experienced.
Disclaimer: This is the story of a person who shared their personal experience with the Royal Commission into Violence, Abuse, Neglect and Exploitation of People with Disability through a submission or private session. The names in this story are pseudonyms. The person who shared this experience was not a witness and their account is not evidence. They did not take an oath or affirmation before providing the story. Nothing in this story constitutes a finding of the Royal Commission. Any views expressed are those of the person who shared their experience, not of the Royal Commission.