Methods qualitative interviews, video links and digital stories Style Carer-led, share skills, training, co-analysis and

1. 'Past Caring' A carer led development project collecting and sharing bereaved carers stories Methods qualitative interviews, video links and digital stories Style Carer-led, share skills, training, co-analysis and writing, support Outcomes –to share & lobby Web-site with sound and moving image You-tube channel, Training packs /presentations

3. Cynthia's story - A caring life Carers digistories carers.gateway@kirklees.gov.uk http://www.kirklees.gov.uk/community/care-support/carers/digistories/digistories.shtml

4. He had been a policeman and an all round sportsman who kept himself very fit then he joined the Probation Service and found he was having difficulty with the simple daily things of life.  Walking, dressing and speaking.  We guessed what it was but he was finally diagnosed with Parkinson’s disease in 1999. Gil was a determined man who worked very hard to stay in control and get on with his life much as before, doing everything he could to keep himself strong.  I was very proud of him and his attitude to the illness. In October 2006 following a sudden catastrophic change in his condition whilst we were on a cruise, he was in hospital for three and a half months.  I was told that I wouldn’t be able to cope with him at home.  I was adamant that I could. It was during this time that I had great help and support from Karen Asquith at Carers Gateway.  Her help meant such a lot and her phone calls lifted me when I was down. In February he was home, complete with loads of equipment, wheelchair, profiling bed and carers coming in each morning to wash and dress him.  After caring for him totally on my own for years, our life changed somewhat.  I had to do absolutely everything for him by now.  24 hours a day.  Quite exhausting for a 74 year old with health problems of my own.

5. During that year I took him to concerts, on outings to many places including his favourite Fountains Abbey, for meals out and visiting friends and family until December 2007. During that time I became adept at handling a 12 stone man and his wheelchair, getting him in and out of the house and car. On January 2nd Gil was in hospital again, coming out 5 days later with an infection which did not respond to anti-biotics.  It became clear that he was very ill when after getting up during the first week for a time each day he never asked to again despite having been up and fully dressed every day up to going in to hospital. During his last week with my daughter’s help I was able to be with him day and night and he died very peacefully on the afternoon of January 31st just 6 weeks before our 55th wedding anniversary.  He was at rest after a long and brave struggle which earned him the admiration of all who watched it. I will always be grateful that I was able to keep him at home and care for him when his life became almost unbearable.

6. Emancipatory Research?Ref Mike Oliver in Colin Barnes & Geof Mercer, ‘Doing Disability Research; Leeds, The Disability Press Mike Oliver suggests it is: • Placing control in the hands of the researched, not the researcher • Researchers have to learn how to put their knowledge and skills at the disposal of the research participants, for them to use in whatever ways they choose • Not about how to empower people (you can’t give people power), but once people have decided to empower themselves, what can research do to facilitate this process?

7. Some Troubles • Ethics Committee /red tape • Funding intense research with small numbers of participants • Design decisions –very expensive to involve people properly in all aspects of research design from methods through data collection to analysis & dissemination