On Saturday I visited a care home for the first time since my nana died. I’m working with 1623 Theatre company on a King Lear project and part of our research is to share stories with people living with dementia. We’re trying out a technique called Tapestory invented by Julia Damassa who’s leading the visits. Julia has developed a set of embroidered shapes based on Shakespeare’s King Lear to help people with dementia tell stories.
In 2011, my own nana died with dementia. She lived her last few years in a care home where we tried to make her little room look like her own house. The staff were kind to her and loved her sense of humour but she never knew why she was there and always tried to escape. Whenever I went to visit, I saw photos of her on the walls – at the zoo, wearing an Easter bonnet, posing with a clown, holding a newly born chick – always grinning wildly. We’d walk the corridors, arm in arm, looking at the photos and she’d smile as if she was looking at someone else. But that wasn’t the point. I was grateful the staff made sure her life was stimulating when we weren’t there. It didn’t matter if she remembered it or not, in those moments she was expressing herself. That’s how we wanted the residents to feel on Saturday.
None of us knew how it would go as we walked down the care home corridor to the room they’d set up for our session. The doors to the residents’ rooms had been made to look like individual front doors and each had a memory box hanging beside it – an A5 sized box with glass on the front filled with a few mementoes to remind them which room was theirs. There were sewing reels and crucifixes, toy cars and tiny cat ornaments. I wondered what I would put in mine.
On each door were two photographs – one of the resident now and one of them before, back in the days they might remember – windswept on a 1960s beach, at a birthday party, close to the camera in an early selfie kissing a dashing husband who may or may not still be alive. It was all designed to help them keep some independence – to stop them wandering the corridors wondering where they were meant to be. An old lady inadvertently led us down the corridor. We walked slowly behind her tiny twisted body as she made her way to the same room we were working in. Her skin and wrists and hands and gold wedding ring and small shoes reminded me of Nana for a second and I took one deep breath. That was the only time I felt sad all session.
The story shapes had been set up on tables in an activity room but the staff decided it might be easier to take them through to the TV lounge where most of the residents were already waiting. We put the shapes around the room where the residents could hold them and see them without moving. It’s not easy, walking into a room of people you don’t know and trying to engage them.
I sat with Sylvia, a small lady who was perched on an armchair that could swallow her up. She held my hand as I showed her two shapes. Immediately she held one and started asking me questions – “Have you seen her? I haven’t. Will be nice if she comes. Sometimes she comes down that fire and it’s a pain isn’t it? Don’t you mind?” I told her I didn’t mind at all then handed her a felt square with a bag of coins embroidered on it. Immediately she said “Oh well, that’s the top of the bins that is.” We talked for a while both of us enjoying the connection despite most of our thoughts being discarded, unfinished, to make room for the next. It didn’t matter. I showed the shapes to John next. Looking at the castle he said “Makes you wonder how people live” and the bag of coins evoked “Well it’s a measure of a man.”
Dorothy was a brilliant ice dancer in the 1940s. Now she can’t walk and her tiny feet are numb and blue. She usually wants to be left alone and she’s vocal about it. But on Saturday she was calm and told us about her skating and dancing days and she held the shapes and traced the outlines and felt their softness. And Peter usually sleeps or cries when there are activities to take part in – but on seeing the others engaged, he drew a picture in the same colours as one of the shapes and signed his name, something the care home staff had never seen him do. It sounds small but it didn’t feel it.
It was hard to leave but it felt good to have talked and connected, to have held hands and smiled at smiling faces. Now the staff have the Tapestory kit to use again and again and we’re going back in a week or so to share what we did with the residents’ families. Our colleague Darius filmed some of the session and Julia will make a story inspired by the thoughts of the residents. Apparently, research shows that the last bit of your brain to survive is the bit that can create. When memory is left behind, the creative bit of the brain is still working away. The Tapestory technique is a way to free people from the shackles of memory and just let them talk. There is no right answer, no test, no ability to fall. And it was pretty liberating for all of us.
Note: residents’ names have been changed