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‘People think a dementia diagnosis is a door closing, but it’s not. It’s another door opening, you just have to be brave and walk through it.’
Lyn and Mick, from Leeds, have a positive outlook on life that is as inspiring as it is surprising. They have undoubtedly had dark days since Mick was diagnosed with a form of dementia in 2015, but they’re quick to acknowledge the unexpected positives it has brought with it.
‘It’s changed how we live our lives,’ said Lyn. ‘It’s more of an adventure now; an adventure that we’re on together. We probably wouldn’t have spent so much time together if this hadn’t happened and that, to be honest, would have been a shame.’
‘I like to say we go out more times than the gas now,’ Mick added with a laugh. ‘Our days are very full.’
One of the more surprising adventures they have embarked on began at Leeds Playhouse, where they joined the Peer Support Group for people living with dementia and their supporters, taking part in weekly social gatherings run by the Playhouse’s Creative Engagement team.
‘To be honest, we had no idea the Playhouse did this sort of thing,’ said Lyn. ‘At first, we felt we needed extra motivation to go out and discover what new opportunities were on offer. When we joined the Playhouse group, we felt so welcome. Everyone knows your situation so you don’t have to talk about it; dementia isn’t what we talk about because we’re too busy enjoying all the activities on offer. We don’t come here to be miserable and talk about our problems. We talk about our lives and our families and if, sometimes, someone doesn’t want to engage, well that’s fine. We’re never down when we’re with the group.’
While Lyn and Mick were enjoying the support, creative activities and social opportunities provided by the Peer Support Group in one part of the Playhouse, playwright Frances Poet, who is originally from Yorkshire but now lives in Scotland, was delivering a workshop for writers in another. She was subsequently commissioned to write a play about dementia, drawing on the Playhouse’s Creative Engagement team’s work with people living with the condition.
It struck something of a personal chord with Frances as her father, who died in 2012, had been diagnosed with dementia: ‘Looking back, we weren’t very proactive with Dad and didn’t know to seek out extra support for him or us so writing the play was quite bitter-sweet at times. I was interested in exploring a story that showed a more positive side post-diagnosis but all the way through, I couldn’t help thinking how wonderful it would have been if Dad had had the opportunity to connect with the sort of amazing work that goes on at the Playhouse.’
Frances was invited to spend a week in Leeds to engage with the Playhouse’s Every Third Minute festival, an innovative seven-week collaborative festival of theatre, dementia and hope co-curated by theatre-makers and people living with dementia and their supporters.
‘It felt like quite an onerous task to find a form that could work for and be truthful for an audience of people living with dementia, their carers and people not actively engaged with the disease,’ she said. ‘I’m not usually mystical about my writing in any way but, in this instance, I can honestly say that the character of Maggie helped me through. After engaging with people at the Playhouse, she just arrived fully formed, speaking her first monologue. She showed me the way.’
Maggie is the lead character in Maggie May, Frances’s play about an ordinary Leeds family living through the extraordinary daily highs and lows of dementia, which will be staged at Leeds Playhouse from 7-21 May. The show is a Leeds Playhouse, Curve and Queen’s Theatre Hornchurch co-production.
Among the first people to hear a reading of an early draft of the play were Lyn and Mick. Their thoughtful notes – along with those of other members of the dementia support group – then helped to shape the final play.
‘They were very generous with their responses and feedback,’ said Frances. ‘Their notes helped me to change aspects of the script. They helped to make it more truthful; to really speak to people’s experiences. There’s only so much reading you can do. Talking to people helped me see the joy and resilience they have in their lives.’
Lyn and Mick were only too happy to share their thoughts with Frances, enjoying another unexpected detour in their post-diagnosis adventure.
‘Consulting on the play was such a surprise,’ said Lyn. ‘For someone to listen to our thoughts and opinions, to take notice, was wonderful. We weren’t the sort of people who went to see plays before, never mind talk to someone writing a play. We’ll have a real sense of pride when the play comes to the Playhouse. I’m not going to pretend it won’t be difficult though. It’s going to be very emotional and upsetting because it’s life; it’s real.’
Lyn, Mick and their fellow ambassadors from the Peer Support Group helped Frances craft her play to suit the needs of people in their situation. She introduced music – a kind of sung call and response between Maggie and her husband – to help audience members orientate themselves in the play, and moved where the interval fell so the first act now ends on a note of hope incase some people feel they need to leave.
‘It’s a play about and for its audience,’ said Frances. ‘I have borrowed numerous stories and moments from people I met at the Playhouse. There’s a scene where Maggie realises she’s wearing odd shoes and goes away to change them, only to come back with the other pair of odd shoes on. One brilliant woman, who helped develop the play, proudly told her friend at the reading, ‘That’s me!’. ‘Writing this play has been a truly collaborative process. As a result, Maggie May– like the Playhouse – has its arms wide open, welcoming all.’
Maggie May runs in the Courtyard theatre at Leeds Playhouse from 7-21 May before transferring to Queen’s Theatre Hornchurch and Curve in Leicester.
To book, call the box office on 0113 213 7700 or visit leedsplayhouse.org.uk.