Son takes 20,000 pictures of mum’s final years fighting dementia

Another dementia-friendly cafe. These charities provide much needed activities for those who are struggling. It also allows carers to talk. Picture: Paul John Bayfield (Image: Paul John Bayfield)

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.

I used to count good days. Then it became good hours. Now it's mere moments. The transient nature of Alzheimers and dementia can be such that a person may be able to sit up on their own one moment or be paralysed the next. We begin a new day. Picture: Paul John Bayfield (Image: Paul John Bayfield)

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.

“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.

With the announcement of further lockdown in the U.K. for another three weeks, the reality is that it will likely extend to September. Care homes and schools are only in their first month of a four-month mandatory lockdown. Social distancing is currently our best form of defence from the virus and life may look very different in the future as some of the measures of distancing and the wearing of masks, etc, become part of everyday life. What does this say for the simple need for human contact? Physical contact is part of our natural expression and culture, but the facts as they stand are that they may have to be replaced for a very long time with technological substitutes. This image is the latest in my ongoing project 'Keeping Mum' which is now in its third year. Picture: Paul John Bayfield (Image: PAUL JOHN BAYFIELD)

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.

Another dementia friendly cafe. These charities provide much needed activities for those who are struggling. It also allows carers to talk. Most crafts end up on her hands and skin. Picture: Paul John Bayfield (Image: Paul John Bayfield)

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.

As her brain shrinks her personality changes. She now insists on being early for everything. We often sit for over an hour on our own. This can be easier than allowing her anxiety to take hold. Picture: Paul John Bayfield (Image: Paul John 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.”

A friend washes mum's hair. After being diagnosed with Dementia, friends started to vanish. Mum became isolated as friends and family began to distance themselves. A common occurrence people with dementia face. Picture: Paul John Bayfield (Image: Paul John Bayfield)

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.

I don't know why, but this morning she woke up with no motor control over her limbs. They are like jelly and she only seems to be able to move her eyes to look at me. Yet another thing that isn't in the instruction manual. Perhaps we are writing the instruction manual. Picture: Paul John Bayfield (Image: Paul John Bayfield)

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

I try to keep her calm with eye-contact and touches. Unsure of her surroundings, anxiety takes a firm grip and it's decided that sedation will be less cruel. The very chemicals her brain now produces are her enemy. On average, 50% of those diagnosed with dementia will develop sever anxiety and panic attacks. Picture: Paul John Bayfield (Image: Paul John Bayfield)

I've quickly learned how fast things can get out of hand. Simple hair rollers suddenly change nature and become death traps. Three times now she has almost burned her own home to the ground with various household items. Picture: Paul John Bayfield (Image: Paul John Bayfield)

A handful of the chemicals floating around in mum's bloodstream. Although there is no treatment for FTD as such, anti-anxiety medication helps her navigate 'sundowning' which occurs each evening. Picture: Paul John Bayfield (Image: Paul John Bayfield)

Physiotherapy and other treatments are required to keep her moving as symptoms enhance. These assessments also help me know of changes I have to make to her lifestyle. X-ray examination is needed after a fall as mum cannot communicate her issues. Picture: Paul John Bayfield (Image: Paul John Bayfield)