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Being one self, being yourself, being me! Dementia care and poetry

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approaches to dementia care, carers, communication, creative writing

I have just started my second year of the PhD in dementia care, and as attendee of the Public and Patient Involvement (PPI) meetings at the IMH, I have frequently met with people with dementia and their family carers and talked with them about their caring experience. Although different for everyone, the experience of dementia seems, to some extent, to be similarly shared by the agents in care, especially in regard to the challenges that the condition poses to their relationship within the family. I talked to a family carer whose story was so emotionally charged that it inspired the poem below. I would like to take this opportunity to thank all the carers and people with dementia who are involved in the PPI group at the IMH, and whose personal accounts constantly enrich our understanding of dementia care.

The following poem was inspired by the narratives of a spouse of a person with dementia.

Being one self, being yourself, being me!

A difficult time is when your image in the mirror is to be matched with your real self. Is this you at the mirror? Is it your imaginative self? A matter of image that I expect you to own? Or maybe it is just you looking the way you would like me to see you?

A difficult time is when all these questions have no meaning, when the image in the mirror is a person you do not know.

A difficult time for me is when you look in the mirror and you see a stranger, a person you blush for, to whom you feel attracted to. You begin to ask me when you can meet this person again, you are falling in love and you share this feeling with me.

A difficult time is when I see you are happily in love with someone else, an image in the mirror perhaps, yet you do not feel the same for me anymore.

A beautiful time is when you still share your emotions with me, no matter towards whom. We are still together.

A difficult time is yet to come.

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