“You are living in a horror film every single day, something that is almost like an alien attack or a zombie film. You are dealing with somebody who you have spent your life with, told your deepest secrets to and they are just walking around and couldn’t care less about you.”
Lee Pearse and his brother Andrew know all-too-well about just how bleak caring for a loved one for dementia can be. They experienced the pain of gradually losing their beloved mum Val to a rare and cruel form of dementia which stripped of her personality and left her unable to speak for the last five years of her life.
But they are now using their difficult experiences over the past 14 years to try to make a positive difference for other dementia patients and their carers. The pair have set up a Yorkshire support group for carers based in Sheffield, as well as making a series of moving films in a bid to raise awareness.
Val was around 55 years old when she started showing symptoms of what turned out to be Frontotemporal dementia, which affects parts of the brain which deal with behaviour, problem-solving and the control of emotions, as well as speech.
The brothers and their father Rod struggled to get her diagnosed and it took almost three years before doctors would agree to refer her for a brain scan. Things came to a head on one terrifying day when she stopped the car on the motorway and began to reverse.
Andrew, now 31 but just a teenager at the time, says it was a very difficult period. “It is really hard to remember what she was like before the disease. But she was lovely, she would do anything for anyone to a fault. She was just a kind lady.
“It was very obvious things were going wrong with Mum but I didn’t really understand it. She became more and more withdrawn and her empathy went. It was similar to someone maybe suffering from depression. We got that quite a lot off doctors. Everything was up in the air – something was wrong but we didn’t know what.”
Her eventual diagnosis with Frontotemporal dementia in 2007 at the age of 59 eventually led to the creation of their first short film, This May Just Drive Us Crazy. Made in 2009, it showed how the family was trying to cope with Val’s diagnosis.
Lee, who is 44, says: “Mum was quite an anxious, nervous person but she had this unbelievable way of caring for other people. From a filmmaking point of view, what gets us through is people tell us Mum would have wanted us to do it. But the films are obviously hard for us to watch.”
The next film, My Name is Rod, focused on how their father, “a working-class pigeon fancier from Bolton in a world of pain looking after Mum”, was dealing with the situation. Just six weeks after it was filmed in 2010, he died in a traffic accident.
It left the brothers, who are 13 years apart in age, as the main carers for their mum for the last five years of their life as she became wheelchair-bound and unable to communicate. The third film made by the brothers, My Name is Val, is yet to be completed following their mother’s death aged 67 two years ago. But in the footage that has been collated so far, Lee speaks movingly about the terrible impact of their mother’s illness.
Lee says: “Possibly the last time she said something that had any kind of understanding to the context we were in, the one that sticks in my head is when she looked at me in the car as I was driving mum somewhere and she just said ‘Thank you’. I looked back at her and said ‘It’s ok, mum’ but by the time I was saying that it made no difference whatsoever.
“But that will never leave me. There was almost a slice in the dementia where she just went ‘Something’s going on, I don’t feel right, I need to thank this person’.
“Dementia is just pure evil. Not just what it does to a person but everyone else around it.
“With this particular dementia, empathy is one of the first things that goes and she couldn’t care less about anything that we had done.
“You are constantly living with this ghost or this person that you kind of can’t recognise. It is just tragic, you don’t know what she is thinking, if she is thinking anything.
“Frontotemporal dementia is just dreadful because it happens so quickly and really just go into this journey of someone just unfolding into nothing.”
In addition to caring for their mum, the brothers became more involved in helping others by sharing the knowledge and skills they had built up. They set up an organisation called The Valerie Foundation, designed to support patients and carers being involved in creative respite activities.
Lee was working as a youth training manager at the Heeley City Farm in the family’s adopted home of Sheffield and in October 2014, him and Andrew opened a special dementia department at the visitor centre.
Among their initiatives was ‘Farming Comes to You’, a form of animal-assisted therapy where they take things like goats, guinea pigs and ducks into local nursing homes. Their mother was a huge animal lover and found seeing animals very calming in the later stages of her life and Lee says dementia patients gain great benefits from such interaction.
After Val’s death in March 2015, the brothers both discussed whether they wanted to draw a line under their experiences with dementia. But Lee says they soon decided they could not walk away from helping other people.
“When Mum passed away we had lots of conversations about do we want to hear the word dementia again? But we are probably even more obsessed now with the question of how we can support other people.”
Andrew adds: “We had already started helping others when mum was still alive. We knew people in the same situation as us so it was kind of natural for us to continue to do what we were doing.”
Since then, they have gone on to establish a support group for carers of people with Frontotemporal dementia at Heeley City Farm. The pair say one of the things that helped them cope with their mum’s illness while she was alive was attending a similar support group at the Cerebral Functional Unit in Salford near their hometown of Bolton.
The new Sheffield group is just the third such organisation in the country and offers those who attend the chance to share their often very difficult experiences with people who understand the pressures they are under.
As well as speaking at public meetings, last year they helped arrange a five-week art exhibition called ‘All Our Brains’ exploring what it can be like to live with dementia or to be a carer. The pair say their goals are to raise awareness about the condition, while making life better for patients and carers.
As Andrew puts it: “We have the doctors to help with the medical side of things and we are trying to help people with the people side of things.”
Time to rethink attitudes to dementia
A “rapid shift” is needed in public thinking about dementia, says Lee Pearse.
With frontotemporal dementia being a less common form of the condition, many people – including some health professionals – have not heard of it.
Lee, who is a National Champion for Alzheimer’s Research UK, says major policy changes are needed to support people with all forms of dementia and their loved ones.
“Dementia is everywhere, it is now a way of life for many and has no borders. Dementia is a club that no one thinks about joining. You just become part of it, whether you know it or not.
“We need change now, politically, socially and economically. Our thinking needs to rapidly shift.”
For more information about the work of the Pearse brothers, visit www.tvfhcfdementia.com