Sorry for the long message but I would really appreciate some perspective...
My father is in late stage PSP
He was diagnosed with Parkinson's dementia - about 6 months ago he started eating and drinking lesser and lesser
2 months ago, underwent a lumbar puncture, since the doctor assumed he may have NPH (natural pressure hydrocephalus) - later that night he aspirated on some water and was rushed to the hospital - the doctor suggested insertion of PEG tube - we, as a family, were unaware of the issues around this and agreed, hoping that nutrition and water through the PEG tube will help improve his health - later that day, after checking an MRI, he declared him to have PSP
Unfortunately, his condition hasn't improved at all but he has actually crossed a stage - his cognition is very poor and it's almost impossible for him to articulate words and sentences - also he cannot control bladder movements and he suffers from constipation or diarrhea alternatively (except 1 week of normal bowel movements)
He can only shout or grunt loudly to announce he is in pain or in discomfort - earlier I could ask him simple yes or no questions like "are you cold?" - "is it noisy?" - "are you hungry?" - "do you need to go to the toilet?"
I (in my role as primary caregiver) do everything I can do alleviate it - I usually follow the following steps:
1. Check if he is warm or cold by touching his legs and feet
2. Check if there is dry sputum in his mouth - if yes, I try to quickly take it out with a wet finger (quickly, because he bites me otherwise - and then I laugh and say hey you bit me - this is one the few times he actually laughs out loud)
3. Check if his diaper is wet with urine or stool - I clean and change him immediately if it is
4. Check his PEG tube if it's at a bad angle
I am not sure what else to write here - I know this community is very supportive - can someone please suggest what other things to check or be mindful of?
- Sammy (in Pakistan)