"I can't find the words. I look for them, but I can't find them."
My Mum was for many years head of department at a large secondary school. After my Dad's death she retired to the North-East of England, where she grew up. She had a full and active life here, socialising, a member of local history and reading groups, taking courses with the U3A and walking with the Ramblers.
She was well-read, highly articulate and opinionated - and felt that everyone else was entitled to her opinion. She was never wrong, and told you so, even if you were a friend of her daughter's that she'd just met. She cared little what other people thought, was low on empathy, and could be quite difficult to get on with. We clashed constantly, it felt like nothing I ever did was good enough.
That woman is now trapped inside the hunched, monosyllabic, drooling figure who sits day after day in her chair, imprisoned in her own body. It feels to me like the inability to communicate is the cruellest cut of all the things that PSP robs you of. The title of my post is something she said to me last night, frustrated yet again at her inability to tell me what she's thinking and feeling. I'm beyond angry, I'm just so, so sad and helpless watching my Mum become outwardly less and less herself, knowing that she's still in there, unable to get out.
If you've got anything to spare, please consider donating to research to help find a cure for this devastating condition. You can do this in the UK & Europe via The PSP Association and in the US via Cure PSP.
Thanks for reading. Now back to the usual scheduled wibbling.
She was well-read, highly articulate and opinionated - and felt that everyone else was entitled to her opinion. She was never wrong, and told you so, even if you were a friend of her daughter's that she'd just met. She cared little what other people thought, was low on empathy, and could be quite difficult to get on with. We clashed constantly, it felt like nothing I ever did was good enough.
That woman is now trapped inside the hunched, monosyllabic, drooling figure who sits day after day in her chair, imprisoned in her own body. It feels to me like the inability to communicate is the cruellest cut of all the things that PSP robs you of. The title of my post is something she said to me last night, frustrated yet again at her inability to tell me what she's thinking and feeling. I'm beyond angry, I'm just so, so sad and helpless watching my Mum become outwardly less and less herself, knowing that she's still in there, unable to get out.
If you've got anything to spare, please consider donating to research to help find a cure for this devastating condition. You can do this in the UK & Europe via The PSP Association and in the US via Cure PSP.
Thanks for reading. Now back to the usual scheduled wibbling.