Living with Dementia July 2008

Chris West cared for her late mother, Hilda, who had dementia with Lewy bodies, for three years until she moved into a care home in 1997 following a hospital stay. The move was recommended after her mother's condition deteriorated considerably in hospital. Like many other carers, Chris had struggled from the outset to decide what to do for the best, from trying to decide whether to tell her mother about the dementia to dealing with lack of support from the wider family when it became apparent that she needed 24-hour care.

Pulling together
She had taken early retirement so was able to care for her mother at home with valuable support from her children Andrew and Lisa, good friends, and Alzheimer's Society. Chris, 72, said,

Mum wasn't able to look after herself in Surrey so my son, who had been living with her, came back with her to Birmingham. Andrew lived in the attic, I was on the middle floor and mum was on the ground floor. We moved all her furniture in so it felt like home for her.

We had good support from the church and went to a ladies group there.

I was running a voluntary craft group at the Leonard Cheshire Foundation and I would take mum along to this, and there's a lake opposite my house so we could go out walking easily. I also had wonderful friends who came and gave me time out. One would turn up at the house and just say 'Go!' and would stay and look after mum for a couple of days.

Nonetheless, caring for her mother for 24 hours a day was not easy.

Turning point
When Hilda was first told she had dementia, she decided to donate her brain for research. The decision was to have a big influence on Chris' life. It led to her meeting dementia research professionals who encouraged her to join Alzheimer's Society's Quality Research in Dementia (QRD) consumer network; a group of carers and former carers who play an active role in steering the Society's research programme.

Chris then chose dementia and the brain as the subject for a degree course in visual arts. She said,

My mum's brain tissue donation was life changing. When mum had to go into a care home in 1997 I started doing a foundation course. I then went on to do a part-time degree in visual arts which I spread over a period of six years. I chose memory as my theme and did work experience with Age Concern and Alzheimer's Society.

Fruits of labour
For her final degree show at Bournville Art School, part of Birmingham City University, Chris exhibited a series of five foot square charcoal drawings of the brain. Describing her work, Chris says,

I used microscopic images of the brain as the basis for my work as I had become more interested in the intricacy and fragility of the whole central nervous system. The use of charcoal is integral to the work as it is a fragile and vulnerable material in itself. I really saw the degree work as an opportunity to emphasise how intricate and precious the brain is.

Chris is currently negotiating with a neuroscience team at the University of Birmingham Medical School to set up a sciart collaboration (sciart uses the visual arts to communicate scientific ideas. Chris wrote her dissertation on science and art collaboration).

Therapeutic
Chris says art has also helped her to come to terms with the emotions she experienced during, and after, caring. She says,

A lot of people must be lost after caring and doing this really got my head in order. It was a way of working through things. At times I felt I did not cope with the caring experience and mum's dementia very well and now anything that's very stressful affects me unreasonably.

I am now feeling absolutely exhausted after the final run to the finish, but I do feel it has been so worthwhile and a very positive experience after some of the negative experiences which reared their heads when I was caring. I don't know why but I couldn't shed a tear for a long time, but drawing has been therapeutic as mum was at the forefront of my mind in all of this.

She said,

My intention now is to continue through my art practice to engage the public in science through captivating images. It's my chance to raise awareness of the increasing need of support for neuroscience research.

Chris' tutor has encouraged her to apply for the Jerwood drawing prize, the UK's largest and longest running annual open exhibition for drawing.