Not really sure how to ask this because I know everyone's experience and the progression of PSP is so different, but just wonder if anyone has experience of symptoms similar to my mum and how we might know when the end is near, or how long away that could be. I realise as I write that no-one can answer that, but please, if you will, indulge my ramblings.
Mum was only diagnosed last November after 3 unpleasant falls (each resulting in a break - the last one completely snapping her femur in two). 18 months ago, she was mobile, eating, communicating, etc. but we knew something wasn't quite right and she was (mis)diagnosed with dementia.
Her deterioration was rapid. She is now doubly incontinent - though still uses the commode when we can get her there in time; is completely unable to walk or stand; she has a hoist and needs two carers to move her; and her communication is limited to single words 'wee', 'poo', 'drink', 'yes' and 'no'.
She is on soft foods only and chokes on drinks sometimes, but her swallowing is ok, and she has avoided any chest infections so far.
As everyone here will know, day to day life is pretty grim for my poor mum and lovely dad who is mum's main carer. That said, I have been lucky in that she has a great neuro-nurse we have CHC for which we had no battle, and having had some atrocious carers, we now have some lovely ones who are making a difference. They come in twice a day for a couple of hours.
Bearing in mind, what I said earlier about her speech, Mum has now started forming a sentence, which is 'I want to die'. She started this a couple of weeks ago and is saying it several times a day. She is still eating, so hasn't turned her face to the wall, so to speak, but it is so terribly distressing to hear her talk this way.
Mum is 82. When I asked her neuro nurse about prognosis, she said 7 years from diagnosis on average, which isn't really helping and can't take into account late stage diagnosis and age.
I find my self praying for an easy release for my mum, coupled by the most awful guilt for feeling this way. I love my mum so much and know when she passes my dad will be devastated.
Sorry for the ramble. It's almost cathartic to just write things down sometimes. I find it so difficult to talk to anyone about this.