End Stage Parkinsons and Palliative Care
Hello everyone
I'm not really sure what I'm asking for right now, other than support and some insight. My dad has advanced/end stage Parkinsons + dementia/hallucinations. Up until the last 2 weeks, he was functional -- could walk, talk, and eat on his own. We took him for dinner for his birthday.
Then last week my dad was hospitalized with aspiration pneumonia. It came on rather unexpectedly. My mom had taken him to urgent care but for some reason they didn't recognize what it was. A day later he was in the ER and then admitted to the hospital. It was uncovered that he had level 2 dysphagia and because my mom doesn't want a feeding tube (he has already pulled out his IV), we have decided on palliative care.
He is going downhill quickly. Some moments he is lucid but many he is not and he has begun sundowning around 4 pm. We are trying to support my mom as best as we can and we are working through next steps -- deciding between in home hospice (which is understandably very difficult given my mom's advanced age) and an off site one of which there are few and none really local.
I am struggling. I have a full time job + 2 kids and every day I second guess myself. My dad would hate the way he is. I hate watching his decline this way but I don't see any other options. I guess I would love some support from people who have been here and can give me some words of advice. He is only eating about 2-300 calories a day and drinking maybe 1-1.5 cups of liquid. They have him on morphine. He is still on all of his other medication. Thank you. I appreciate any help.