My name is Susan and my sister Julie, born in 1972, lives with my mother Lois, who is 67 years old.

My father died 13 years ago and during that time my mother has provided and cared for Julie on her own. There is no confirmed diagnosis for Julie but she is intellectually disabled with a mental age of about 7. She does not understand money and cannot read or write. Her speech is perfect and although she is slightly independent, my mother needs to help her with bathing and hygiene and brushing her hair and picking out clothes to wear and as she is a diabetic which was diagnosed about 12 years ago she needs medication which includes twice daily injections and tablets 3 times a day as well a good diet.

Julie is regularly going to numerous doctors for checkups for the diabetes and its associated problems. Mum also has to drive Julie everywhere, including to work and any social outings. As Julie cannot be alone at home, Mum has to be there with her so mum has hardly any social life of her own. If Mum does go out through the day when Julie is at work she has to make sure she’s back in time for Julie.

I am Julie’s only sibling and I am married with 3 children of my own. My husband works 14 hour days in his job and I work part time. I also live and hour away.

Mum has been diagnosed with Crohn’s disease and earlier this year she ended up in hospital for over a month. Julie stayed with me and my family for some of that time and while she was with us I couldn’t work which put pressure on us financially. Julie also couldn’t go to her work and missed her friends and her much loved social outings. She eventually went into a respite home for a few weeks and although she was taken to work, she couldn’t go to other activities that she loves so much. Even though she loved being with her nieces and nephew she was missing her friends and her way of life in the Ryde area.

It made me realise that if something happened to mum then where will Julie live. What happens to her? Will she be expected to live with us and we forgo any life and future that we may have been working so hard to achieve. And what of Julie, is she expected to give up her way of life, her friends, her work. How cruel. She is a loving, wonderful person who, yes does need help in her day to day life but she also has a right to live her life the way she has been living it. And what of Mum, is she expected to care for Julie until the day she dies. What of her quality of life and many more carers in her position. Is she expected to care for her daughter no matter what medical, physical and mental and financial situation she is in? She loves her daughter with all her heart and wants for Julie what I have, a happy life doing what she loves to do. She wants Julie to be with her friends and to be independent.

Is that too much to ask?