Yesterdays blog has seen me get some terrific support, some criticism, and also a lot of people asking to share it. It started as a Creative Expression project for uni, and has been extended and added to since I began the list. My lecturer has asked to use in her courses in the future, with my permission and proper reference to me of course. It needs further editing and modifying, as well as three more things to be added to the list. On top of that I believe it requires detailed clarification of why I have added things to the list, and alternatives for carers and professionals to use or do instead.
It is a work in progress, and based on my experience of living with dementia, as well as the voices of hundreds of other people living with a diagnosis of dementia that I speak to online, via email or in groups globally,most of us feel this way. We all discuss the frustration of people who are not diagnosed, saying they are living with dementia. We almost all feel that many of the ter,ms and words like sufferer are disabling and disempowering, as well as offensive in the same way as the word retarded. Yet some others still feel a right to tell us our feeling are wrong, and we have not right to make claims or requests about how we would like to be spoken to. Of course, to those I may have offended and upset, I sincerely apologise. However, people with dementia are very entitled to speak out about what offends or upsets them, about how they wish to be treated or spoken to, and about how we feel.