Son takes 20,000 pictures of mum’s final years fighting dementia
- Credit: Archant
A photographer has captured the effect a rare and aggressive form of dementia had on his mum in a powerful 20,000 image strong photo essay.
Norwich-based photojournalist Paul Bayfield has spent the last three years documenting his mum’s life from her dementia diagnosis to her death as part of an ongoing project to improve research and treatment into the condition.
Mr Bayfield knew something was the wrong with his mum, Janice Middleton, when speaking to her while on assignment in Sri Lanka.
The mother and son sat down to discuss his creative journey, which would become the first to document Frontotemporal Dementia from diagnosis to death.
That day, at the age of 70, she was diagnosed with Pick’s Disease, a rare and aggressive form of dementia.
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Mr Bayfield said: “We just had a frank chat. I brought my camera and took a few pictures.
“We tried to turn it into something good. There is very little research about this particular form of dementia. We decided to create a story and answer questions for those going through the same thing.
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“It’s very different creating a personal story. As a documentary photographer I’m used to separating myself from it and it was a bit of a good defence mechanism, a camera can be a way of separating yourself and a bit a of shield.”
And the project, called Keeping Mum, has led to new forms of treatments for the condition that are now being explored and implemented by the NHS and in the United States.
The photos follow Miss Middleton from the good hours and moments to the isolation of lockdown.
Mr Bayfield moved into her home in Norwich to be her full-time carer for his mother.
He said: “It’s how it starts, good days and bad days and it becomes good hours and bad hours. It’s like a computer being taken apart bit by bit.”
This year he received funding from the Bob and Diane fund, which was set up by Gina Martin, of National Geographical Imaging, who lost both her parents to dementia. The fund gives grants to storytellers documenting the first hand account of the disease.
He said the grant received from the Bob and Diane fund allowed him to be a carer long term.
Following her diagnosis Miss Middleton lost her ability to speak quite quickly and to combat this started learning British Sign Language.
Pick’s disease also targets a person’s motor skills, affecting their ability to swallow.
There is limited material in relation to Pick’s Disease, let alone information on how to support someone with the diagnosis when you cannot see them, said Mr Bayfield.
For the family, the pandemic hit when Miss Middleton was staying in a care home for rehabilitation after contracting aspirated pneumonia.
She fell ill in the new year and was hospitalised, alongside her son who required surgery after snapping two tendons in his arm trying to stop his mum from falling in the shower.
In the run up to lockdown, Mr Bayfield continued to care for his mum at the home until the day he was told a four-month mandatory lockdown was to be implemented, a week before national lockdown came into force.
“Nobody coming in, nobody coming out,” said Mr Bayfield, “We started improving what we could do from the outside.”
The difficulty he faced was the change in continuity and increase in his mother’s confusion. With meetings happening through the window, Mr Bayfield began using memory triggers such as eating beside the patio door window to help her remember how to eat.
He said: “With Pick’s, when they have lost their ability to speak they can often still sing as it’s a memory trigger.
“I would set up a table outside the patio window and I would take a meal time for myself and that would trigger a memory in her. She would start to eat with me.”
As the months went on Miss Middleton’s condition deteriorated, losing body mass and being taken to hospital for pneumonia and a heart attack, illnesses associated with dementia.
Miss Middleton died on October 12 at York House, in Dereham, with her son by her side.
The 40-year-old said the project is not over and aims to produce educational materials and a book in future.
A funeral service was held at Horsham St Faiths crematorium on Saturday.
In her memory, Mr Bayfield asked is anyone could donate to the Bob and Diane fund by visiting bobanddianefund.org