Thursday, 19 January 2012

Always told him I loved him til the day he died

Last Thursday we started working on an exciting new project in Salford, partnered by Age Concern Salford and Salford PCT. 

Our focus will be to engage both carers and individuals with a dementia diagnosis to explore their own dementia journey and related areas. We're working with Dr Caroline Swarbrick from The University of Manchester who will be doing more formal research, we hope that this unique combination of research methods, will create a rich source of material  from which to draw up recommendations for the future commissioning of service.

With the help of the brilliant team from Age Concern Salford, our first day produced some wonderful work, although the afternoon session also brought up some issues that need to be addressed.  We're finding our feet here, like some of the other newcomers to the group. 

The morning session was excellent and we will build on this further to get some detailed insight from the older people - about their lives generally and also about dementia issues. We were particularly delighted that the gentlemen's group in the Cricket Club were so welcoming. 

As a first workshop exercise, we span a piece of string around the room and attached questions and conversation triggers to it. Starting with an 'earliest memory''a favourite toy' and more many more pointers such as 'first kiss' and 'first job'  finishing with a vision of 2050.
"First memory? Going to school from the air-raid shelter. I'd have a wash and a brush up at school and breakfast. My mum would go to work from the shelter, never saw my dad for years, he was out in the desert fighting. First air-raid when he was at home he spent the whole raid looking for us. We'd got so used to fending for ourselves we went straight to the shelter without him. He found us when the all-clear went. It always sticks in my mind. When the bombs cam on we went under the viaduct arches at Brindle Heath. There was an ack-ack gun on the railway above, firing at the sky..."  

"My first kiss was in Swinton Pally, with my brother's friend. I was 15 and a half years old. He said 'I have to kiss you goodnight!' It was 1956. He's now my husband. Last summer we retraced where we used to court. It was lovely." 

"If it weren't for my mother we would've all died. Worked at a fish and chip shop, Ross's chip shop - still there on Top Road. My mother saved us all - my dad was slow. She was doing dinners, suppers, teas. She was a wonderful woman, had three jobs.

"My father used to come home from the pub and sit down in front of the piano. We loved it, we all loved it. He could play anything. We'd singalong. And he never had a music lesson in his life." 

"I first told my Ted I loved him after our fourth date. He was a real gentleman and everybody said so. Always told him I loved him til the day he died. And I still do.
Unfortunately the afternoon session was a little too much for some participants, after a morning's work reminiscing, some of which was emotional for them. In future sessions we plan to work alongside Age UK who'll run other activities for half the day, otherwise some participants will struggle with the day and it'll become counterproductive.  - activities that are relaxing (ie cards, dominos, dancing, games etc). We can then work with individuals or small breakaway groups quietly, doing drawing games, working one to one, etc.  

We will follow themes around the life story, letting this work about remembering also touch on the participants' experiences of dementia,  their journey down the 'pathway' and their take on support services that they've received.

We're also looking forward to our own journey of learning. What will we hear of the human story of dementia?  How do older people (not usually a generation that traditionally complains about authority) really feel about their relationship with the NHS, and related services? What can people share about their coping strategies? What's their experience of being diagnosed with dementia? What help have they had since diagnosis? Have their relationships with friends and family changed since? We have many questions, and probably many assumptions too, but the answers might come in forms that surprise us. It is a big part of the 'art' of this art project to stay open to these possibilities. Then what people say will teach us not only about dementia, but about the bigger us - our human selves.

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