July 29 2014 Latest news:
Janine Rasiah , Senior Reporter
Monday, June 9, 2014
Prabhudas Tanna doesn’t shy away from admitting that life is hard for carers like him.
He has been caring for his daughters since the eighties and held down a full-time job for most of this time, working on the assembly line at Ford Dagenham while arranging hospital appointments around his job so that he didn’t need to take days off.
He looks after his daughters, Meeli, 33, and Bhavini, 36, who were originally diagnosed with muscular distrophy with doctors believing that they wouldn’t live past their teenage years. It was later decided that they instead suffer from demyelination of the brain, which makes it harder for nerves to conduct electrical impulses.
“They have got behavioural problems which cause difficulties and they have no co-ordination,” Prabhudas, 69, explained. “Although they can communicate it is not like us and you have to pick up on the one or two words that they are trying to say.”
With the help of his wife, Minaxi, 62, Prabhudas provides the girls with 24/7 assistance, which includes helping with their personal care.
Although the Meeli and Bhavini’s conditions are quite stable, caring for them is increasingly difficult as Prabhudas and Minaxi, who live in South Church Road, East Ham, grow older.
“It is getting harder and we are finding it difficult as their behaviour changes,” Prabhudas said.
“Although I don’t mind caring, something you get frustrated because you can feel quite isolated within the community and your family. If you want to go somewhere, sometimes you can’t go there on times because they change their minds so you are stuck. “That is the worst part of it.”
The couple do receive support from adult social services, with carers visiting each morning to help the girls get dressed and they also attend a day centre on weekday mornings.
Prabhudas has been a carers’ champion for the past two years which involves campaigning for improvements within the adult social care system.
“Sometimes carers do struggle to get the service because although it is there it can be hard to reach it,” he said. “You have to learn as you go along but you do learn a lot of things that help you understand the needs of other people.”