Wendy Mitchell still remembers the dismay she felt when she was getting the results of her latest memory tests.
“You’re a little worse than last time,” the doctor told her.
She felt her heart sink inside her chest.
She knows she has dementia. She knows she won’t get better but couldn’t there be a better choice of words?
How much better would she have felt if he had told her exactly where the deterioration had taken place, she writes in her memoir. If he had said something like, “this time you scored 26; it seems your co-ordination was the problem. What can we do to help with that?”
At a talk she gave to a group of student nurses, she asked what words came to mind when they heard the word “dementia.”
“Demented, senile, sufferer, old age, living death,” came the replies.
Their answers are typical, she says. She admits those words would have been in her mouth a short time ago too. The media doesn’t help either, she says. They’re always referring to “dementia sufferers.” She prefers “living with dementia.”
“I’m not denying or minimizing the considerable challenges we face. I’m simply saying it sounds better.”
She sets alarms on her iPad — when the taxi will come, when she will get on the train. She uses reminders to get off the train, to pick up her case. Once in Birmingham, she used an app on her tablet to get to her hotel, but it had a mistake that took her in the wrong direction. She asked a policeman for directions and he told her she must turn left rather than right. She followed his directions and started to panic until she saw the hotel’s sign.
She takes it step by step, each one anticipated and worked out weeks ahead, alarms set, reminders created. She keeps going. She keeps “doing.”