How hard is this, having to live each day as it comes, caring for our loved ones, never knowing what tomorrow will bring. Not being able to look forward, not being able to arrange anything because you just don't know what that day will bring.
Seeing other people make plans for the coming days, weeks, months and years, but we don't know how to do this because we don't know what that day, week, month or year will be like.
How hard is this not knowing what PSP will do next to our loved ones, how will they be tomorrow, what problems will arise, how will we cope.
How can anyone else ever imagine how hard this is, only the people living with PSP know how hard this is.
I don't want to think about tomorrow as I lay here trying to get to sleep, as quickly as I can, in case I'm woken up later with some event that happens within these walls.
How hard is this?