Our Experiences
These are some of the real life experiences of carers in York. Their names have been changed to protect their identities.
Sarah’s Story
"I live in a village just outside York with my husband and our eldest daughter, Jane, who first started to struggle with stress and anxiety over 10 years ago.
"When she came home from university things got worse and worse until Jane was eventually diagnosed with severe mental illness. The last few years have had a huge impact on all the family. We have lived with uncertainty, guilt, violence, fear and constant worry.
"Being a carer can be a very lonely place. We have been lucky enough to meet lots of other carers. Talking to them has made me realise the massive challenges that we all face, but it has also been a great help and comfort in times of crisis.
"We may not be health or care ‘professionals’ but we do have the insight of a fellow traveller, someone who shares the journey with our loved ones and sees the full impact of their physical or mental illness on a daily basis.
"So what is it that I want to see and do? I want a mental health system that is driven by compassion, communication and trust. I want carers to be listened to, really listened to. Carers spend half their time battling with services. Things are slowly getting better but there is still a long way to go."
Lisa and Mark’s Story
"We are parents to 3 boys, Harry, Jack and Mathew.
"Our story begins with our first son, Harry. When he started school he found it impossible to cope with the noise of the playground and every day routine. He had outbursts of anger and his anxiety rose to the point that he struggled to leave our house. Harry was eventually diagnosed with sensory processing disorder and autism. Our second son, Jack, has also been diagnosed with a form of autism and our youngest son, Mathew, is now being assessed for the condition.
"Over time we came to realise that family life was not going to unfold in the way that we had expected it to. We also realised that mainstream education was not going to work for us as a family, and we decided to home educate all 3 of our children.
"I suddenly became a full time carer whilst Mark juggled (and struggled) to combine caring with work. At first we both felt angry, frustrated and envious of others. These feelings definitely did not go away overnight. We felt so isolated. People came to our home to try and help. Sometimes I would keep them talking for as long as possible just to have some company!
"A turning point came when somebody said to me that once you can accept, things will get better. The same person also told me I was strong. I eventually took this on board and our lives changed for the better.
"My husband and I now look at our lives and feel they are so much richer as a result of our caring role. We would not change our lifestyle and the way we live with our children despite it being very challenging. Time out for me or my partner might be the weekly shop but we feel privileged to spend so much time with our children and are constantly learning so much from them, and from being carers."
Josh’s Story
"I care for my mum who’s got lots of physical health problems, including arthritis, costochondritis and diabetes.
"She’s got really limited mobility. We’ve just had a stair lift and wet room installed and we always have to take the wheelchair when we go out.
"I think it’s mostly because of this that she’s got really depressed and is suicidal sometimes. Watching her struggle is so hard.
"I know I don’t have the life of a typical 22-year-old lad, but I just try to get on with it. Being a young adult carer can be stressful, lonely and exhausting and the constant pressure and unpredictability of it all has really affected my mental health.
"Meeting other people in similar situations has made me feel less alone and the trips and activities I go on with York Carers Centre make a massive difference. It might not seem like much, but it’s my chance to get out and do things that I wouldn’t be able to otherwise.
"I think there needs to be support available for younger carers like me - we might not always take it up, but it’s so important to know it’s there when we need it."
Also see
Adult Social Care Community Team
Telephone: 01904 555111, Textphone: 07534 437804