Alexandra is 70 years old and cares for her 42-year-old daughter, Ulyana, who has a mental illness and Autism Spectrum Disorder.

The Russian immigrant lost her husband in an industrial accident 15 years ago and has had the sole care of her daughter ever since.

Alexandra does not speak very good English and has no family in Australia, apart from a cousin who lives interstate, so she feels particularly isolated.

“For me, it is very difficult to make friends as I can’t really get out of the house and do anything social,” she said.

“When I leave, even to hang out the washing in the backyard, Ulyana gets very distressed. She needs to see me or hear me and the clothes line in the block of flats where we live is a long way down the back of the building, so it sometimes takes me a while to return, and she is sometimes under the bed when I get back inside.

“She gets very afraid easily and thinks people are trying to harm her, so she tries to hide quite a lot of the time.

“She hates loud noises or different places, so I don’t take her out anywhere. We tend to stay at home most of the time. She loves classical music – especially the Russian composers, and we spend many hours just listening to music together, which is very calming and makes us both happy.”

Once a week Alexandra has Home Care come into the house which frees her up to spend the day in the kitchen – cooking a few select Russian delicacies for Ulyana and a local restaurant.

“It is a very small amount of money, but at least it helps me a little bit – and I have always adored cooking. In Russia I was a home technology teacher in a big secondary college and my husband and I ran a small Russian restaurant in Sydney for many years.”

Alexandra said that since her husband’s death she has been really anxious about her daughter’s future and what would happen when she could no longer care for her.

She has had meetings with various agencies to try and plan for the future, but said that there didn’t seem to be any options that she could see.

“Every time I try and speak about it with Ulyana she gets distressed and then she stops eating for days and days. It is a very big worry,” she said.

“I have arranged for the Public Trustee to look after Ulyana’s money and maybe that will help when I die. I have also spoken to our family doctor about my concerns about her health, but he can’t suggest anything I can do to try and find a place for her to live. He tried to find a waiting list for us to go on but he told me he couldn’t find one.

“He got the local HACC service to come and visit and I now have a service from them and I hope that when I die Ulyana can stay here with their help, but I am not sure if this will be possible.

“I do worry about dying and hope that I won’t be the first one to go, but I know that I probably will be. It makes me feel very sad.

“I wonder who will cook her favourite piroshky and listen to Tchaikovsky with her.”