This summer I was invited to work with a 63 year-old man who has Downs Syndrome and a diagnosis of dementia and depression. The intention was to use the life story process to support his identity, but also to spend time alongside him and the team at his house.
Rob had already got a book about his life that had been made about 10 years ago. He didn’t show much interest in it. In fact he didn’t show much interest in anything. The staff team were working in a person centred and respectful way with Rob and from my observations doing a fantastic job. They really missed the Rob they used to know, who was great fun, ‘up for anything’, and were struggling to come to terms with how he has changed.
I come across this a lot with people with memory loss and dementia. There’s a real sense of loss and bereavement for the people around them, workers and relatives alike. I don’t know how to deal with the resistance to let go. John Killick, an oral historian who works with people with dementia, wrote this haiku that I find helpful;
This gift I bring you
Please handle it carefully
It is the present.
Anyway, I don’t know whether Rob will benefit from the film that I made with him this summer. I think the fact that I was curious and interested in him in a benevolent way was helpful. Maybe that’s why life story projects have a positive impact on self-esteem.
However much you try to prepare someone, it’s still hard to say goodbye without leaving behind a sense of loss or feelings of rejection. Ideally the project would have been done with someone in Rob’s house, but they are very pressed for time. Hopefully the team at Rob’s house will continue to watch his film with him and over time will demonstrate to him their curiosity in who he was in the past, but also the man he is now.