Hi, I have been following posts on here for a while, but I wanted to say hi.
My mum has PSP - diagnosed 3 years but early signs 5 years ago. She is 67 and now lives in a care home and has a PEG. She takes no liquids orally but still is on a fork mashed diet. She can't walk but she can transfer from wheelchair to seat / car. She can talk a little some days but other days it is just more like sign language. She is incontinent at times (this has improved) and wears a pad full time. She suffers with regular UTIs. She spends a lot of time with her eyes closed and she can see very little now. Life has certainly changed!
Fortunately, my sister and I live close and we both work part time. My mum has always loved being out, so even now we take her out 4 times a week - to town, to the beach, to the supermarket or to our houses. We have 3 young children between us so she has a lot of life going on around her. The care home believe that all the interaction is helping her to stay stronger for longer.
Inevitably, it is getting tougher and she is going downhill ( we tend to have big drops and then plateau for a bit) and I am nervous for the year ahead as I can't see where else we can go....
Thanks to everyone who comments on this page, I find it really comforting that others are, sadly, in such similar situations. And that having deep down feelings of great sadness paired with anger is normal!