Real Life: Losing my mum to dementia with Soham's James Hall

Chatting during his lunch hour, as he takes a break from his job as workshop manager for an engineering firm, James Hall is a positive, outgoing and optimistic person. The 37-year-old father from Soham peppers his conversation with phrases like “not too bad”, “not a problem” and “it’s all good”, joking about how he is “multitasking” by eating his lunch while we talk. It’s an outlook that belies the sadness in his recent family’s history.

James’ much-loved mother, Anne, is living with frontotemporal dementia (FTD), a relatively rare form of dementia caused by damage to cells in the brain’s frontal and temporal lobes. As we discuss his mum and their relationship, it is clear that James is still a devoted son.

He describes his earliest memories of Anne as someone who was always “very active, she did a lot for the community. She’d organise bus trips, fundraising trips and all sorts. She was always a very out-and-about kind of a person.” Always smiling and laughing, she was also an expert baker and cook, and the mainstay of the family of four: James, his sister Julie and father Peter.

The kind of mother who was “reasonably soft – we could get away with murder,” James and Anne were always really close. And it doesn’t seem that this changed much once she started exhibiting what turned out to be early symptoms of her condition, when James was in his teens and Anne just in her early 40s.

When the once outgoing and sociable Anne began developing agoraphobia, and refusing to leave the house, James didn’t initially think too much of it. “I just thought it was normal,” he explains. “I had nothing to compare it to.”

But with doctors initially putting her symptoms down to depression, Anne’s behaviour became more and more unusual. She developed vertigo, would put the hoover on and then forget what she was doing, and wake everyone up in the night shouting and screaming.

When I mention how difficult this must have been for her son to witness, James answers with his customary equilibrium. “We just got on with it, to be honest. I think it affected my mum and dad’s relationship a lot more than it did mine. I just thought she had some issues, she was maybe getting lazy, but it was obviously something worse than that…” He tails off.

Things came to a head in the lead up to Christmas one year, when Anne appeared to suddenly become unable to walk. “She sat in a chair and was unresponsive: she couldn’t and wouldn’t get up,” James remembers. Julie got Anne referred to Fulbourn hospital shortly after this, and a series of medical tests followed. Anne was finally diagnosed with FTD a little later, in 2012, at the age of 58.

This must have been a difficult time: how did the diagnosis affect James? “It was a relief, to be honest – because we had a label on it. Even though it wasn’t what we wanted to hear, at least we had more of an idea of what it was.”

Poignantly, he continues: “Although there’s no cure, is there. So even though we know what it is… it’s a bit crap.”

After caring for Anne at home for a while, in the end the family had to face the fact that she now needed full-time professional care. Anne is now in a nursing home nearby, where James visits at least once a week, although his mother no longer recognises him.

When James and girlfriend Siobhan had their daughter Saoirse 20 months ago, James felt the loss keenly. “That made me really upset, when she was born,” he says. “My nephew remembers my mum really well, she used to bake cakes and stuff with him, although my niece doesn’t really remember her, and now nor will my daughter, of course. But there’s nothing I can do about it.”

When they were younger James and his sister would mark Mother’s Day with flowers and homemade gifts, although once Anne’s agoraphobia began they were no longer able to go out as a family. “But we made a fuss of her,” James remembers, “she loved that.”

And now? In recent years Anne’s fear of the outside has subsided, so the family were, for a while, able to take her out for dinner to mark birthdays and Mother’s Day. “We could bundle her in the car and take her out,” says James, “until she got too unsteady on her feet”.

The most recent trip came despite the “logistical nightmare” of steering Anne and her reclining wheelchair out of the care home: “We probably shouldn’t be taking her to the pub,” James admits, “but a couple of times me and my mates have got her in her reclining chair and then wheeled her over to the pub which is just a five minute walk from her nursing home.”

“Maybe we’ll take her out for Mother’s Day this year,” he says, although if this proves too difficult, the care home has a residents’ party close to the day, which the family will be able to go to instead.

Keeping James positive, along with his obvious unwavering affection for his mum, and the closeness of the family, is the fundraising and support work that he does for Alzheimer’s Research UK, the UK’s leading dementia research charity, dedicated to diagnosis, prevention, treatment and cure, which is based in Great Abington in Cambridgeshire.

Although there are currently thought to be 850,000 people in the UK living with dementia, with no current cure, “it’s all about the light at the end of the tunnel, isn’t it?” James insists. “Dementia is a horrible condition and Mum was one of those unlucky people affected at a young age. Like us, so many families are struggling to cope with dementia, so I raise money so that other people don’t have to go what we have to go through.”

Alzheimer’s Research UK’s mission is to make dementia research breakthroughs possible, and to bring about the first life-changing dementia treatment by 2025. And with the support of people like James, hopefully there will come a time in the future where mothers and their sons will be able to enjoy Mother’s Day together, free from the shadow of dementia.

In the meantime, James will continue his weekly visits, treasuring his mum’s continued presence for as long as he still has her, and celebrating their unshakeable bond on Mother’s Day, as on every other day.

For more information about frontotemporal dementia, other forms of dementia and the work of Alzheimer’s Research UK, visit alzheimersresearchuk.org

Sign a petition asking the government to increase funding for dementia research at petition.parliament.uk/petitions/228954

Frontotemporal dementia: the facts

Frontotemporal dementia or FTD (sometimes called Pick’s disease) is a relatively rare form of dementia.

The disease is caused by damage to cells in areas of the brain called the frontal and temporal lobes. Symptoms of FTD can include changes to our personality, emotions and behaviour, as well our speech and understanding of language, all of which are regulated by the frontal and temporal lobes.

In FTD, there is a build-up of specific proteins in the frontal and temporal areas of the brain. These proteins can clump together and become toxic to brain cells, causing them to die.

FTD is an uncommon form of dementia, not often seen by doctors. It may take longer than usual to get the right diagnosis as it can be difficult to recognise the symptoms.

There are currently no treatments specific for FTD, so often the focus is on helping people with the disease and their carers to manage symptoms in everyday life.

It is important to get the right diagnosis so that the right help can be given. If you are worried about your health or someone else’s, you should talk to your GP.

For more information or to get involved in dementia research, contact the Dementia Research Infoline, 0300 111 5 111, from 9am-5pm, Monday to Friday, or email infoline@alzheimersresearchuk.org