More than five million people providing care for a family member or friend with a disability, mental or physical illness or other issue.
More than five million people providing care for a family member or friend with a disability, mental or physical illness or other issue.

‘Being a carer never leaves you’ says father who cares for 38-year-old son

Carers play an indispensable role in our society.

More than five million people providing care for a family member or friend with a disability, mental or physical illness, substance misuse issue, or who needs extra help as they grow older.

One such carer is John.

He and his wife have cared for their son, Tom, for 38 years. Tom suffers from cerebral palsy, profound and multiple learning difficulties, has intractable epilepsy, sleep apnea, frequent chest infections and other health problems.

He has also never spoken.

John said: “To say caring is a full-time mental strain would be an underestimation.

“What makes life difficult is the things that happen because our son has profound multiple learning disabilities. You never know what is around the corner, certainly in health terms. There is the constant fight to keep him out of hospital. Sometimes this happens because we cannot predict what his body will do.

“Dressing him is like dressing a bag of cement with arms, but having done all those things for so long it becomes second nature.

“Being a carer never leaves you.”

The family have shared care with a nursing home in Hull. Tom spends the week there and weekends at home with his parents. During his respite, the pair are required to fill in a detailed record sheet which includes taking his temperature every two hours.

John said: “We are supported by a range of professionals from the community learning disability team. Our son is well cared for in his shared care arrangement, a level of trust which has built up over 12 years.

“There is a lot of form-filling, not to mention myriad meetings and the need to collect things such as suction machines or nebulisers and more recently CPAP, a continuous positive airway pressure machine that can be used in the treatment of sleep apnea.”

As part of Carers Week 2019, carers are being encouraged to get connected.

John said: “My advice to other carers would be to be persistent. Ask for reasonable adjustments. The people we look after don’t follow rules or procedures and there is a solution for every situation.

“On a good night we can sit with our son looking down the garden, listening to the birds and all is peace – but he is a volcano. One never knows.”

Carers Week takes place each June to raise awareness of caring, highlight the challenges they face and recognise the contribution they make to families and communities across the country. Find out more here.

And find more information about the support services from Hull City Council here.

Names have been changed for the purpose of the story.

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