Shirley’s Story

Shirley is 58, from Witney and cares for her son Andrew who is 25. She has looked after him all his life. She says “Andrew has Asperger’s syndrome and all the various bits and pieces that go with it. A lot of mental health issues.”

It wasn’t easy to get him diagnosed “We had to fight. Having to almost jump through hoops and prove it wasn’t me that had the problem. I always knew there was a problem since he was 18 months old, but it took until he was eleven to get a diagnosis of autism.” Once he was diagnosed, he was given a place at a specialist school.

Shirley is a part-time teaching assistant at a local school. Working is important to her “I need to go for my mental health”. Andrew needs 24-hour care which has made it very difficult for her to work. She explained how hard it was to find care for Andrew once he finished school “We had to keep finding places. We tapped into various agencies, which wasn’t as successful. There’s not the resources, you’ve got to find it all out for yourself.”

It wasn’t until he was 25 that she found out about a local day service for adults with learning disabilities. Andrew now attends it four days a week. She describes the service as “A small group of similar adults. They do gardening and what they grow they cook. They get wood and make anything from it. Just recently they made me a coffee table. It’s a nice little outside club.”

Shirley lives with Andrew and her daughter “My husband left me because I put everything into Andrew and his sister. She shares the care with me. We take it in turns. It is exhausting. We are tired. We are run down.”

Andrew often has emotional breakdowns “Last week he went into meltdown. I had to go and pick him up. He often has meltdowns at night. Night is when he comes alive, which is when I want to go to bed. That’s when it’s very difficult and myself and my daughter share the care. She’s absolutely brilliant.”

The cost-of-living crisis has really affected Shirley “Everything’s gone through the roof – financially. It costs a lot to look after somebody with a disability. My fuel bill was £90 a month and it’s now gone up to £290 a month.” She hasn’t been able to cut back on the heating because her son needs his temperature regulated. “I can’t get it too hot or too cold. It’s either heating or a fan. If you turn it off he will get agitated and angry and that then creates a problem.” She explains “The help out there is a drop in the ocean. I’m grateful for the extra we get but it doesn’t cover everything at all.”

When Andrew was two the health visitor told her about Carers Oxfordshire. She has been in touch with us ever since. “They have been really supportive. Every now and then I ring up in a panic and they talk to me and make suggestions.” Recently she took up our laundry scheme “They really do deserve the award they won because that was wonderful.” She has also received Feet Up Friday meals “I can’t tell you… that was just wonderful”. She received carer payments through us and used them to take short breaks “I’ve been able to have a short respite because we’re in a different environment and somebody is doing the cooking and cleaning. It’s just away from home and gives us a break. It’s been helpful.”

Shirley explains what she likes to do when getting a small amount of time to herself “If I have complete time to myself, I love to cook. I do like lasagne or roast dinner. I love watching cookery shows and then trying to recreate it with my own twist.” She loves to go to garden centres for a coffee and read “I like to read a trashy magazine or a silly romantic novel. Marion Keys is one of my favourites. Something that I can get lost in.”

Her advice to other carers is “It’s draining, it’s hard work but you’ve just got to keep fighting. Don’t let them grind you down because those that shout loudest get the help. I’m always contacting my local MP. Keep asking for help and always remember to call Carers Oxfordshire. Someone will listen and understand and more importantly they won’t judge – that’s so important. You know people will understand you at Carers Oxfordshire.”