Hi
A quick update from my side - my dad has been bed-bound since July 2015 - he aspirated and had a PEG tube, and his carbidopa-levodopa was also stopped due to terrible leg spasms (this meant he could not swallow anymore, unknown to me) - it was restarted in Oct and he started eating/drinking/communicating
2 weekends ago, he acquired a suspected UTI - he was started on an antibiotic - 5 days later, he acquired a bad throat which turned out into a really horrible chest infection - I rushed him to the hospital - the doctors gave him an antibiotic and nebulized him - they wanted to do throat-suctioning as well but I refused, telling them to give him a sedative and nebulize him and I will ensure he stays in recovery position so the saliva can become thin and drool out (my dad suffers a lot during throat suctioning - and the phlegm had not gone into his windpipe so he wasn't choking) - he went to sleep after the sedative and coughed a couple of times every hour - about 12 hrs later it was much better and 24 hrs later almost cleared up - he had a fever which went away 6 hrs later as well (he was soaked, I changed him twice)
The doctors wanted to hospitalize him for 3 or 4 days - but I wanted to take him back ASAP - for one thing, the risk of infection is higher and I do all the caring myself (with my mom's help) so there was really no point - I hired a nurse to do private visits every 8 hrs for the IV injection - the main reason, though, was that my dad realized he was in hospital, the harsh lights and other patients in ER crying out in pain etc. distressed him a lot - when he went to his room, he had tears in his eyes even though he could not put the idea into words.. I guess he did not want his last days in an unfamiliar stark room (PSP patients get disturbed out of their regular circumstances) - I understood and explained to him that I will take him back the next day - thankfully he responded well to the medication and the doctors agreed too
Now that he is back, I am taking extra care - keeping his room at at least 21-22 C - making sure he drinks slightly warm water, eats properly and is hydrated - we used his PEG tube for medicines only since he started eating and drinking but during his sickness my mom and I discussed and we will use it to give some soup as well - I intend to use the PEG tube in future for water as well, in addition to medicines - I am against the idea of using it for regular food though, since it can prolong life in a situation where the patient's body has already given up (at least for my dad, it may vary for other people)
So, my rant ends here - I hope someone else may get one or two hints to help them out