My son’s life-changing illness led to me becoming his carer
In the run up to our Carers Rights Day event on Friday November 24th which is focusing on parent carers, Rebecca shares her experience of being a parent carer to her son. We’d like to thank Rebecca for sharing her story and helping us to raise awareness of parent carers.
Rebecca was a busy mum looking after her four children and she had a part-time job as a cleaner.
Her youngest child, Toby, was energetic and sociable – “a normal child,” said Rebecca. He loved to play with his friends, including football, and enjoyed sleepovers.
But in November 2021, when he was seven, Toby caught pneumococcal meningitis. He was critically ill and for eight days he was in an induced coma in intensive care at Bristol Children’s Hospital, followed by several months of treatment. Sadly, the disease caused a severe brain injury leaving Toby with disabilities.
This was life changing for Toby and for Rebecca too. She became his full-time carer alongside being mum to her other children, including her fifth child, Theo, who was born after Toby was discharged from hospital.
Rebecca (pictured above with Toby) said: “Toby is a different child as a result of his severe brain injury. The left side of his body is weak, he is deaf in his right ear, he can’t talk and his mood swings are quite bad. He can’t communicate, gets frustrated and screams.
“Caring for him is constant. This includes personal care and giving his medication three times a day. He can’t be left unattended; I have to keep an eye on him.”
What impact does this have on her?
“It’s quite stressful,” she said. “I don’t sleep properly or have a lie in because Toby needs me to care for him. He wakes early in the morning and starts screaming. The situation affects my mental health. It makes me miserable – it feels like I’m doing nothing right – and it can be quite challenging. But I have got no choice.”
Toby, aged nine, receives physiotherapy and speech therapy at the special school he attends. There have been improvements in his condition but the future is uncertain.
Rebecca said: “The school has helped Toby by getting his socialisation with other children back so he is not isolated at home. He is trying to talk now.
“He was recently diagnosed with epilepsy. He might be left with learning difficulties – we don’t know what the long-term diagnosis is for him.”
Rebecca receives benefits she is entitled to in her caring role, including Direct Payments from Swindon Borough Council’s Disabled Children’s Team. She uses the Direct Payments to pay for a carer to look after Toby, giving her a break. The amount she receives in Direct Payments enables her to employ a carer for six hours a week, but she would like additional hours.
She said: “I’m grateful that I can have a carer to help look after Toby. The carer helps by picking Toby up from school or taking him out to a soft play centre, which means I can get some time for myself. But I don’t think six hours a week is enough. I would like to have more, but the council doesn’t have enough money.”
Rebecca is considering returning to working as a cleaner to fit in with Toby’s school hours, in part to help her mental wellbeing.
Swindon Carers Centre (SCC) provides support and advice to people of all ages who have caring responsibilities. Our mission is to improve the wellbeing of carers.
Rebecca is a registered parent carer with SCC and she benefited from attending a fun Family Focus event it held for parent carers and their children. She, Toby and Theo enjoyed activities including meeting superheroes and a tour of a fire engine.
Rebecca said: “It was nice and Toby enjoyed it, especially meeting Spiderman and seeing a fire engine. He also had his face painted. It was good for us to be out and doing something different and for me to meet other parent carers.”
*Our Carers Rights Day event on Friday November 24th is focusing on parent carers. Key organisations and charities providing services for parent carers and their children will be attending.
The free event is from 10am-1.30pm at the Legends Lounge, Swindon Town Football Club, County Road, Swindon, SN1 2ED. Please come along and find out what information and support is available.