Healthy Living: ‘It wasn’t him of course, it was the disease’

Pictured is Barry Hines author of 'Kes' at home in Broomhill,Sheffield
Pictured is Barry Hines author of 'Kes' at home in Broomhill,Sheffield
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THE theme of this year’s awareness week is Remember The Person.

HE wrote the most famous novel and screenplay to come out of South Yorkshire - works that attracted critical acclaim and landed him a spot in the hearts of both locals and strangers alike.

Rotherham District General Hospital,The Woodlands.Pictured is Margaret Flinders with her husband Roy who has dementia

Rotherham District General Hospital,The Woodlands.Pictured is Margaret Flinders with her husband Roy who has dementia

But today Barry Hines, author of A Kestrel for a Knave and subsequent film Kes, is a shell of his former self.

Sitting hunched in a chair on a dementia unit at Rotherham Hospital, his eyes barely open as devoted wife Eleanor greets him with a hug and a kiss.

Alzheimer’s Disease has robbed him of the person he once was and taken away the talents which made him one of the most respected British writers of his time.

The condition has worked quickly too - since it was only four years ago that he first began to display symptoms.

Barry Hines' Kes

Barry Hines' Kes

Indeed, in 2009 he appeared in The Star talking about his latest work, an anthology by the name The Artistic Life - although having already had his diagnosis for 18 months, he knew it would be his last.

Since then his condition has deteriorated to the point where he had to be admitted to the Woodlands older people’s unit at Rotherham Hospital - a facility which only opened to patients in March.

Eleanor said the disease started out innocuously enough - but had progressed dramatically to the point where moving him out of their home in Hoyland Common was the only option left.

“It wasn’t like the soaps and how it’s portrayed on TV that’s for sure,” she said.

“For Barry it wasn’t really forgetfulness, it was a change in him - he became clingy, he wanted me around all the time.

“I remember going in to see him in the living room one day and as I was putting my coat on to go out he asked me where I was going. I said I was nipping to Sainsbury’s and wouldn’t be long - but he said he was coming with me. I knew then that something had changed - he’s always hated the supermarket before - but he just didn’t want to be left on his own. After that I started looking out for other signs - when you know someone as well as I know Barry, you pick up on them quickly.”

Sadly the disease did not stay at this stage for long.

The main problem as it worsened was the violence and aggression he began to display - something particularly heart-breaking for his family to watch since he had always been such a placid man.

Eleanor, who has been with Barry for 30 years, marrying him eight years ago, explained tearfully: “The doctor told me he had a very accelerated form - it just seemed to go all of a sudden.

“He went from the gentle man I had always known to this person who was bashing me around and kicking me down the stairs - he even broke all the fingers in one of my hands on one occasion.

“But it wasn’t him of course, it’s the disease.”

The point came where she could not cope any more - the lack of sleep as he spent nights roaming around the house, the aggression, and the worry at how this would all end, coming together and resulting in the decision to move him into a special unit at a nursing home for people with dementia.

Eleanor said: “It’s not a decision that you make - it’s taken for you because things just get so bad you can’t carry on.

“But of course with that comes the immense guilt.”

In the event Barry, who turned 72 last Thursday, lasted only three weeks at the unit since staff there did not have the resources to cope with his challenging behaviour.

On Christmas Eve he was admitted to Rotherham Hospital’s old Rowan ward and in March moved over to the new purpose-built £14m Woodlands unit on the same site.

The medication provided and the care on offer in this state-of-the-art accommodation - which benefits from bright and cheerful decor, large spaces to walk around, and a pleasant garden where patients can get some fresh air - has helped stabilise his condition.

Another patient there is 72-year-old Roy Flinders, who also lives with Alzheimer’s disease after first being diagnosed 13 years ago at the age of only 59.

His story is quite the opposite to Barry’s since it progressed slowly and steadily over the years - initially beginning as forgetfulness and confusion as he tried to work his job as a waggon driver.

At first Margaret, from Wickersley, coped well - “I tried to make life as normal as possible” she said - but conversation was one of the first casualties of the disease, which impacted hugely on their relationship.

The aggression did not arrive until much later but by Christmas 2009 things had got to the point where he could no longer stay at a nursing home where he used to attend for respite in order to give Margaret a break.

A spell in hospital followed for the grandfather-of-10 and great-granddad of one, before he was moved into what was meant to be a permanent care home.

But again, staff and resources there could not cope and he was referred back to the hospital where he has remained ever since.

Margaret wanted to speak out about her experiences in Dementia Awareness Week to help reduce the stigma that surrounds the disease and encourage better resources for patient care.

“He is comfortable in here and to be honest I wish he could stay here all the time,” she said.

“But it’s only meant to be short-term until they can find patients a permanent place. There is a desperate need for more places that can cope with such challenging behaviour to be available.

“Money needs to be invested because this is a disease from which there is no getting better. All you can do is make them as comfortable as you can - at the end of the day they are still human beings and I think sometimes that gets forgotten.

“There’s still a stigma that surrounds the condition and we need to break it down. Four years ago Barry was a normal person, Roy was only a young man when he came down with it, but now me and Eleanor have both been robbed of our husbands by this cruel disease. You just never know what is around the corner.”

Eleanor mirrored her concerns about what the future held for Barry when he is discharged to another care home.

“It is a comfort knowing he is in here at the moment,” she said. “It’s a nice place for the patients and also for the visitors.

“Just because they have this horrible disease we should still treat them as if they know everything and are still aware of everything - they are still people and it’s very important we remember that.”

Dementia Awareness events in South Yorkshire

THE theme of this year’s awareness week is Remember The Person.

A series of events have been organised by Alzheimer’s Society branches across the region to celebrate the week and spread the message among South Yorkshire communities.

In Sheffield: Monday, July 4: The week will be launched on The Moor in the city at 11am by kids’ TV presenter Richard McCourt, aka Dick from Dick and Dom. The event will include a balloon launch, singing, tea, cakes, information and advice. A memory tree - which invites people to add leaves containing their memories - will also be there.

Tuesday, July 5 and Wednesday, July 6: Charity workers will be on site on The Moor again offering information and advice along with a series of activities.

Friday, July 8: Tea dance at the United Reform Church in the city centre from 10am until 12.30pm featuring singing and dancing and special guest David Blunkett MP.

For more information call 0114 2768414.

In Rotherham: Tuesday, July 5: Tea dance with Lost Chord charity at David Court, Dinnington, from 1pm until 3.30pm.

Wednesday, July 6: Information and advice stand at main entrance of Rotherham Hospital, 10am-3pm.

Friday, July 8: Alzheimer’s Society support worker will be at Carer’s Corner in Dummon Street providing information and advice. There will also be a dementia cafe at Stag Willow Close from 1.30pm until 3.30pm.

Call 01709 580543 for more information.

In Barnsley: Tuesday, July 5: Information and advice stand at the outpatients entrance to Barnsley Hospital from 10am until 3pm.

Wednesday, July 6: Celebration lunch with the Mayor of Barnsley Coun Karen Dyson at Ardsley House Hotel.

Friday, July 8: Information and advice workers will be out with the digital switcover team in Peel Square, town centre, from 10am until 3pm.

For more information contact: 01226 296301.

In Doncaster: Monday, July 4: Tea dance with Lost Chord charity at Doncaster Museum and Art Gallery.

Wednesday, July 6: Dementia cafe - offering company, information and advice - at Cantley Community Centre from 12pm until 3pm, with free lunch.

Thursday, July 7: Alzheimer’s Society information worker will be in the main entrance of Doncaster Royal Infirmary, 10am- 3pm giving information and advice.

For more information contact 01709 580543.