“When I get up in the morning, I always tell myself I’m going to have a good day. Some days it works, and some days it doesn’t.”
Bob Fulcher was diagnosed with Alzheimer’s disease eight years ago.
“I try to live within the day,” he says. “I don’t worry about tomorrow, because that’s not here yet.”
Something that’s been making Bob’s days better recently has been working on the UK’s first festival of theatre and dementia at the West Yorkshire Playhouse in his home city of Leeds.
The festival, which opens on Friday, includes the UK stage premiere of Lisa Genova’s novel Still Alice – which was a film starring Julianne Moore in 2014 – and other plays including one co-written by Bob based on his childhood memories.
As well as co-writing that play, the 71-year-old, who spent 42 years as a farm labourer, is one of nine people with dementia who have acted as “curators” to plan the festival itself.
“They asked me to be a curator. I said, I’ve been called all sorts of names in my life, some which you couldn’t print. But never a curator!”
Bob has problems with short-term memory and balance, but there are few obvious signs of his condition as we chat.
And he stresses that, despite those bad days, on the whole, his life is good.
“It’s just something that I have,” he says, “and I overcome it the best way I can.”
When he was diagnosed with Alzheimer’s in 2009, Bob reluctantly joined a peer support group.
“I were a very private person,” he says. “I didn’t have any friends really. I just concentrated on my work. The thought of going and sitting in a room with a load of people didn’t fill me with glee.
“I said to my wife, I hope they have rows of seats in that room, so I can sit at the back. When we walked in the room – a bloody circle!”
That group moved to the West Yorkshire Playhouse two years later, and the festival has grown out of that.
The curators were in charge of all decisions – from the festival title (Every Third Minute, a reference to how often someone in the UK develops dementia) to the logo to the line-up.
“We try to stress we’re ‘living with dementia’ because it’s important for people to know we don’t just ‘have’ dementia,” Bob says. “We live well with dementia. That’s the message we try to get across.”
In some ways, Bob says, he’s now living better than he did before.
“It’s an odd thing to say, but I’ve probably got more of a life now than before I had dementia,” Bob says. “I’m quite happy within my skin now. I never was. I always tried to get out of my skin and tried to be somebody else, which I never do now.
“My life’s more fulfilled now than it was. That’s because of the groups and getting friends and all the stuff that goes with it. Involvement. I try to get as involved as I can because it’s good for me.”
Bob is one of three festival curators who have been paired with professional writers to tell their own stories.
His play, called I See Land Ahead, is inspired by a painting he did of a sailing ship.
“They said, ‘Can you write a play about that ship and tell us what might be happening on board?’
“So I went back to my childhood and to my very best friend since I was that big.” He holds his thumb and forefinger two inches apart. “Me and Pete got nicknames – I’ll never know why – Rat and Mouse. He were Rat and I were Mouse.
“We got up to all sorts of fun and mischief. He were my very best friend, so I pictured being on a boat with him.”
(Bob and Pete lost touch after the age of 16. So if Rat is out there, there’s a ticket with your name on it.)
You may also be interested in:
- Daily chats improve lives of people with dementia, study says
- David Baddiel on the funny side of his dad’s dementia
- Artist teams up with people with dementia
Bob was paired with writer and actor Dominic Gately, who asked Bob to write what might be happening on the boat.
“The only way I can write is poetry,” Bob explains. “I’ve been writing poetry since I were a kid, but I only write it for myself. I used to write it because I was so introverted as a person and so wrapped up in wanting to be anybody else but me.
“I used to find in poetry that I could write things down that I couldn’t tell anybody. So when he asked me to write about the play, I wrote two poems about what might be happening on the ship, and he picked bits out. I enjoyed doing it, I must admit.
He adds: “I can’t wait now till it’s on.”
The curators’ plays will be on under the title Three at the Playhouse on 9 March before going on a tour of Leeds care homes and community venues.
Before that, Still Alice is the festival’s biggest draw. Actress Sharon Small, best known for The Inspector Lynley Mysteries, is playing the professor who is diagnosed with early-onset Alzheimer’s after her 50th birthday.
“A lot of people with dementia aren’t asked their opinion, even about things that directly affect them,” says festival director Nicky Taylor.
“So this is about amplifying the voices of people living with dementia so they can set the agenda and tell the stories they want to tell, and redress the balance a bit.
“There has been an awful lot out there about loss and decline, and we know that that happens.
“But there are also a lot of stories that aren’t being told and they’re stories of people going to watercolour classes and writing music and getting together with their friends to be creative.”