I often hear comments like “She is no longer the mother we knew”. Siblings saying “We do not visit her any longer because she doesn’t know us”. Apart from the fact that consciousness is not affected by dementia, the sense of Self is also not affected. The fact that a person living with dementia finds it dif cult to communicate with the outside world and recognise even very familiar faces, does not mean that they are not fully conscious and aware of who they are. And who you are. They simply have difficulty communicating their knowing. However, if you keep centring yourself and you are really truly present, you will connect.
Pia Kontos did fascinating research on the Self of people living with dementia. Using methods like Dementia Care Mapping, she observed many people living with dementia for hours and hours. She found that the sense of Self is not eroded by dementia, but often it is eroded by the way that society treats people living with dementia. She talks amongst others about our “publicly presented Self” – the way we choose to show up in the world.
Pia tells of a lady living with dementia in a nursing home, who has stopped all verbal communication. She was very old and extremely frail. One day she saw her being pushed in her wheelchair to the dining table. The nurse parked her wheelchair and proceeded to put a plastic bib around her neck before she walked away. The lady sat very quietly at her table setting, just staring into space. She then very gently reached for her string of pearls and hung them over the plastic bib, waiting for someone to help her with her meal.
Our awareness of Self is not eroded by dementia. The “I am” – that sacredness of the human Spirit will be intact right up to the end. The knowing of who you are, your inner world of likes and dislikes and your emotional consciousness are not eroded either. The institutional environment grinds away at the soul of the person living with dementia, not the disease. The way we treat people and talk to them and dress them and ignore them erodes their Spirit. Be mindful. Be present. Honour the sacredness of every human spirit.