Tom’s Story

mlf_admin 04 / 12 / 2019

In 2016, Tom was diagnosed with HIV Associated Neurological Disorder (HAND), which had caused dementia. He experienced a long period of minor cognitive impairment from 2005-2011, culminating in disciplinary measures at work for failing to perform to his full ability. His condition then deteriorated until he was diagnosed.

Things were then at a low both for Tom, who was presented with a life-changing health condition, and for Mike, his partner and only full-time carer. Mike describes the deterioration of Tom’s wellbeing: “Tom coped with the changes heroically, but it was clear that with deficits affecting speech and decision-making so profoundly and rapidly, he became withdrawn and shied away from contact with friends and family. Possibly there was some embarrassment, fear of not being able to fully engage in company, feeling less valid – it’s difficult to know.”

In early 2017, Mike and Tom were told about My Life Films from a friend in the dementia community. Mike describes initially feeling hesitant, before going ahead with the service: “I prevaricated a while before contacting this amazing company, initially, as I felt some concern about how it might make Tom feel to see himself on film in his condition. After eventually contacting My Life Films one of the team came to visit us at home and explained to us how the films would be put together, and I was convinced. After the film was delivered, we contacted all our relatives to either visit them with the films or give them on-line access, all in very disparate parts of the UK. The feedback has been astounding and for the first time I believe some of them began not only to understand our situation better but became more sensitive to Tom’s needs and how they could engage with him more successfully.”

Mike’s words about Tom’s response to the films speak for themselves: “Tom’s reaction to seeing himself on film was enchanting. Despite very limited vocabulary, Tom whispered to me about the things he was watching as well as pointing and smiling. Indeed, every time we take time to watch the film together his reaction is the same. The wonderful thing is that this is now available to us (and others) forever: a constant at a time when, sadly, things are otherwise changing and slowly fading.”

“Tom’s demeanour following the film has improved, in part I believe because it has given us a reference point in our lives. By showing his film to friends, family and many other people as well as co-carers, we have ensured understanding and awareness and closer support. Tom is now very happy in group situations, even among complete strangers and large crowds. I think the film has given him confidence both in recognising himself as someone who is loved and understood by many, as well as showing him how it has validated his wonderful life and contribution to our relationship, his family and the many other people he has touched in his life.”

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