First time here. I am the spouse caregiver of 72 y.o. PSP patient who was officially diagnosed 3 years ago but has had symptoms for 12 years or more. His decline has become more precipitous over the past year. Specifically, balance and falls more frequent, swallowing is problematic and frightening when eating and drinking (honey thick to pudding thickness), speech nearly impossible to understand, slowness and rigidity horribly pronounced, sleeps more than 13 hours per day in spite of taking Ritilin 5 mg and naps too!
We were (I mean to say, he was) admitted as a home-hospice patient. We are getting accustomed to the extra "help" of two 1 hour CNA visits and 2 LPN visits per week in addition to 10 hours per week of CNA help from a private agency. We are both comfortable dealing with end of life issues but I have found that since hospice, my emotions are on the edge and I cry frequently and without reason (I know, ridiculous -- just slightly out of touch with my feelings).