Hi, been reading the posts on here for a while now, thought it was about time I posted. My dad got told 18 months ago he had Parkinson's plus, later changed to PSP, he's 85 and not doing great. Doctors came in last weeks after he fought 2 lots of pneumonia in 3 weeks and told us that there will come a point they won't treat him no more!!! Don't get me wrong I agree with this overall but still hard to take. His swallow has become a big problem and dad doesn't want to be PEG fed. Doctors also informed us that they won't treat him with an IV when he can no longer swallow. They getting all the meds in place at home to treat dad at home, more palliative care for the future. I actually took all that ok, until I had to explain to my dad what was happening! One of the most difficult things ever, he hasn't ever wanted to know what's happening or going to happen next, but the doc told him straight that he is going to die from a chest infection. Crazy as it sounds my biggest problem, other than struggling with seeing my dad so poorly, is not knowing what's happening next and how long we have. He's struggling to drink much and not eating more than 2 spoons of food a day, he has no pain thankfully. Or he's just not telling us. Reading on here really helps, the extra info helps me, I like to know as much as I can. Found doctors, nurses and most other health providers a nightmare, I end up telling them about PSP. I'm sure you'll all know my frustrations.
Dad has always said he will never going into a nursing home, just been myself, my hubby and sister doing it all, got carer helping in the morning and district nurses are now saying they will help more and take a bigger role as things get worse. It's very isolating and worrying that everything is ok and doing things right, but not quite knowing what you'll find the next day.
Anyway sorry for the very long post, take care everybody xx