'I'm caring for a child who will never grow up'
BBCRetired teacher Judith Brown has a lot of child care experience and at the age of 75 and is her daughter Monica's carer. The 47-year-old was was born with severe brain damage and needs round-the-clock care. Now after an eight-year campaign, she and other families have been given a lifeline after securing respite places.
Sitting at the kitchen table in their home in Linthorpe, Middlesbrough, the mother-of-four describes how Monica's brain injury affects her.
"She hasn't progressed beyond the age of two," she said.
"You have to accept she is as she is.
"She can understand single words - car, bath, tea.
"But if you put three or four words together she can't understand that.
"I've cared for Monica for 47 years and every day is exactly the same, I clean her, feed her, keep her happy."
It is a Friday afternoon and Monica is going to Levick Court, a respite facility less than a mile from her home where she will spend the weekend in the care of nursing staff.
For Brown this is a much-needed break.
"The respite weekends are the only way families like us can cope," she said.
"It's like booking a holiday and half the joy of the holiday is knowing it's coming.
"We did fight for this.
"Earlier this year we got four yeses from our MP, our local council, the funding agency, the local mental health trust and the integrated care board.
"We have a 10-year contract.
"The most important thing from our point of view is we have the right team, the NHS nursing team here on Teesside."
Gary Widdowfield, 66, is another parent who fought for Levick Court.
His daughter Marie-Anne, 30, was also born with a brain injury and he and his wife care for her every day - unless she is staying at Levick Court for the weekend.
"In the morning we go in and we get her out of the sleep system she's in," he said.
"Then we hoist her into the bath, next to the bed, we set up her feeding system, it's bottles of liquid, we brush her teeth, wash her face and brush her hair.
"She's then more or less ready to face the world."
Marie-Anne, has not developed beyond her toddler years, her father said.
"I've spent years watching Cbeebies," he says with a smile.
He also said his daughter was an "amazing girl" and so "happy".
When Marie-Anne is at Levick Court he and his wife go for walks together or out for a meal.
"We can be up during the night with Marie-Anne sometimes 16 times and we'll look at each other and say 'how long til the next weekend?', it gives us something to look forward to, a break," he said.
Family PhotographBack at home with Brown, it is time to take her daughter to respite care.
"Monica has anxiety, she takes eight tablets a day for various things, including her epilepsy and when I need to move her, I have to give her more medicine for her anxiety because she doesn't like to move from where she is."
When their car pulls up at Levick Court, Monica refuses to get out of the car.
"I don't think she's going to come in this time," Brown says, fearing her plans to visit her son and new grandchild in the North West will have to be scrapped.
However, after about 40 minutes, and some encouragement from the nursing team, Monica gets out of the car and is taken to her room.
"I'll have to go quickly and she can't see me," her mother says.
She said that permanent brain damage was "far more than being learning disabled".
"There's a permanence about this state of affairs and you have to have some help.
"You can only do it because you love them so much, and you appreciate how dependent they are.
"I feel the weight of the caring - but I want to do it."
'Much-needed'
At Levick Court Monica is cared for by staff she is familiar with which reduces her anxiety.
"She's spoiled, she gets her meals served, she can get dressed when she wants.
"The supervision and levels of staffing take away any anxieties I have," her mother said.
When Monica is at the facility, her mother visits her other children and spends time with her grandchildren.
Sometimes she does "nothing" and enjoys that too.
"I've bathed Monica 16,000 times, but for 33 nights a year someone else will do that for me.
"We are overjoyed we have got this service to continue."
The respite service was at risk because its two aging buildings were deemed unsafe.
The cost of repairs needed to ensure compliance with Care Quality Commission (CQC) regulations was considered too high.
Families and carers worked with the council and the NHS to design the new service and identify the premises at Levick Court.
The building was built in 2012 and has a 16-bed respite unit for adults alongside 20 apartments for older people.
Commissioning officer at Middlesbrough Council, George Wells, said one of the reasons it took eight years to find a suitable location was due to the multiple partners involved - the local authority, the NHS, the ICB and the local mental health trust.
He also said the service gave families a "well-earned and much-needed" break from caring.
