Living with Dementia

My wife Anna developed Alzheimer's in her early 50s. These are thoughts on what it was like day to day to live with dementia, for me and for her.

Friday, August 25, 2006

One of the carers is going on holiday for two weeks and had not thought to tell us. Anna likes her, her face lights up when she sees her – everyone likes her – but she does not think it important at all whether she is with us nor not. Not to her, and not to us. Such separation of behaviour from its meaning is hard to take.
It is evident that some people, who used to value knowing her before she was ill, do not think that there is much meaning in visiting Anna. And yet Anna appreciates every contact. Jane, her friend from childhood, came yesterday and Anna talked of her as a sister.
Those who stay away probably think that it does not much matter because she will not remember them anyway. As if that is relevant, except to one’s narcissism.
There is a famous Alzheimers research study of religious sisters - the Nun Study.
The researcher was saying goodbye:
" ‘You know, Sister Maria,’ I said, I really like you. You’re one of my favorite sisters.’
Sister Maria adjusted her eyeglasses and slowly sat up, her rosary rocking back andf forth in her hand like a metronome, marking the moments it took to right itself. Finally she smiled at me again, her face glowing.
‘I love you too’, she said softly.
She then shifted uncomfortably and leaned toward me to examine my face. Her eyes narrowed into thin creases: her eyebrows bunched together as if my face were a puzzle she could not solve.
‘Who are you?’ "
(p. 8, David Snowdon, Aging with Grace, the Nun Study and the science of old age.)

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