The above was written on this site by our daughter who is 10 years. Her father - John has PSP for the last 8+ years - so most of Chloe's life. She has chosen to post this message knowing that I communicate to people who are similar situations to that of her father. Basically she is after ideas on what you, if you were in a similar situation would like. Our circumstances, though similar maybe a 'little' different from yours - in that medication is currently helping John immensely with mobility, but unfortunately also gives a few unwanted side effects so he does not live with us.
(N.B. Don't worry - Chloe is under the care of professional counselling support services & l'm a pretty proactive watchful mother!)