This is a post I shared way back in 2012. I would like to think that now people with dementia are better understood now. This article is shocking and needs to be read.
Arifa Akbar is deputy literary editor and arts writer at The Independent. She has been at the paper since 2001, and has previously worked as a news reporter and arts correspondent.
Dealing with Dementia: ‘My dad was treated like lost luggage on a carousel’
My father turned 81 in May, but in a weary mood he will insist he is anywhere between 85 and 150. Sometimes he thinks he is living in a submarine off the shores of Norway, other times in Shimla, India, where he was born, or Lahore, where he was raised.
In reflective moments, he looks up to the ceiling and says it’s going to rain, as if he can see storm clouds gathering there. He tells me his father is watching him from the other side of the room, pointing to the small shaving mirror, at his own reflection. When he’s agitated, he shouts for hours at a time.
There are periods when he is lucid and warm; he’ll tell me that I need to eat more, get more sleep. “What’s the name of the newspaper you work for?” he’ll ask. Then, as I’m about to leave, he’ll say, “Am I dead? Did you bring my death certificate?”
This is what dementia is like for him. Having spent years observing his illness, I realise it is nothing like the cliché of the “living death”, as it is often called. His brain might be sending the wrong signals, but it also seems to be working overtime, imagining unfeasible things with little distinction between what is happening out there, in the real world, and in his own head.
The first signs of this confusion emerged a decade ago when he gave up work at 71. He was a British Rail ticket collector and he loved his job. At first we thought he was just depressed. He began writing lists of the illnesses he thought he had; he wrote apology letters to the council. More worryingly, he stopped eating, paranoid that someone was trying to poison him.
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