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Susan Brock

Susan cares for both of her parents and her son. Her life has changed completely since she became a carer. She expected the State to provide services for her and her parents and son but has discovered that everything has to be fought for.

Who do you care for and how long have you been caring?

I have been caring for both of my parents and my disabled son for around 15 years.

Why do they need care?

My parents are elderly and my son has XYY syndrome and austism.

Describe your caring experience in 3 words...

Exhausting, never-ending and depressing.

How has your life changed since you became a carer?

My life has stopped literally. I did try to continue in education and did a degree with the OU but have never been able to use it. Relationships did not work as I am not free enough so I gave up trying eight years ago. I am lonely and isolated in the sense that people just dont understand how caring has devastated my confidence by virtually keeping me tied to the home for so many years. I have no holidays, no weekends away, no social life. I go to the cinema maybe once a year but am now scared of the big wide world so actually turn down invites out that I might otherwise accept! 

I feel low all the time, I have low self-esteem and feel I look frumpy and out of date. I have gained a lot of weight.  Money has always been an issue since I became a lone parent. I've also developed health issues such as IBS and arthritis.

What's the most important thing caring has taught you?

I had thought that those with disabilities etc would be cared for by the State. That there would be services both to help them and their carers.  I was wrong. All services have to be fought for tooth and nail. Many are just not available. My son is now 19 and the battles are still going on. 

What advice would you give to other carers?

I have none really, only to assume that if you feel you need anything then don't wait for it to be offered. You must insist and be prepared to fight.

What do you want to see changed for carers?

I would like to see carers acknowledged by receiving a living wage for what they do. I have to live on benefits and that in itself comes with its own stresses. Also, carers struggle to get services and help for themselves and for the person they are caring for. This needs to change and services need to be timely and appropriate. For example, I was once referred to the mental health team as I had become suicidal. I did not reach the criteria as I had not yet actually tried to commit suicide. Also my son had to have a "breakdown" before help was initiated in his school and then it was too little and each increase had to be fought and fought for.

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