I am going to write this section bit by bit as I remember the things that helped my father.

I have heard that one of the symptoms of PSP is saying inappropriate things and the inability to display the correct emotion at the correct time. This was certainly true of my father. I remember him, perhaps a year or so into the illness, being over friendly to strangers in a way he never had been before and I remember him at a later stage saying ‘yes’ when he meant ‘no’ and visa versa. By that stage he had lost most of his ability to talk so offering him a cup of tea for example and knowing whether he actually wanted one or not was very difficult. It must have been incredibly frustrating and humiliating for him because he couldn’t express himself and was given things like the cup of tea simply because we thought he meant ‘yes’ when in fact he may well have meant ‘no’.

Later on again he was unable to express virtually any emotion or himself in any way. The one thing he retained was the ability to cry and this he did whenever he remembered something whether that be something that reminded him of the second world war (when he was a very small child), his walks on Dartmoor, or characters from a book he had enjoyed reading. I came to believe though that his crying was not an expression of grief though but one of happiness and the only way he could express his memories.

The thing that he most enjoyed when he could no longer walk, talk or express himself was being read to particularly from books he had once read and enjoyed and also things he himself had written. He enjoyed listening to people talk, his grandchildren running around him and remembering the past.

It’s very difficult if the person you are looking after can’t express themselves but we grew to interpret his emotions and we realised that crying isn’t always an expression of grief but sometimes the only way someone can express themselves and I know that memories brought him great joy.

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