How he got into hospice:
At his last neurologist visit, I tossed off a comment to the dr. Remember, I said, to tell me when you think he’s ready for hospice. His answer: He already is.
So the impetus to get him into hospice was a generic comment from me and a specific response from the neurologist. One can’t get into hospice based on desire or convenience or even health status. You need a doctor’s recommendation, and it’s the doctor who contacts hospice.
Predicting mortality with dementia is more easily done for ALZ as there’s been much more study of it compared with other forms of dementia. PPA is so rare, not so much is known. Median and mean life expectancy after diagnosis are 7 and 8 years. 12 years is an outlier. The hubster was diagnosed 15 years ago. With 2 degrees from MIT, hobbies like orchestral conducting and walking, I suspect he had more brain cells to lose than most. Plus having attentive care at home, good diet, vitamins etc. And continued working for several years (teaching college computer science). And he’s blessed with several physical advantages in his immune system and heart & lung resilience. Few PPA patients are still mobile at this point. And he only became seriously demented after seizures started.
2/3 of all types of dementia patients die of pneumonia (fewer of PPA patients though). The rest mostly of heart stopping. Now that the hubster’s on hospice, he won;t be getting things like a feeding tube to prolong his life (personally I think feeding tubes are cruuel unless there’s hope of recovery). Difficulty swallowing is also a hallmark of late stage dementias.
He slept till 3:45am (no midnightish wakeup!) and got up to pee, most of which ended up in his Depends. I couldn’t get him back to bed after–he stood in the little hallway between the master BR and BA and eventually sat and then lay down on the floor there, head poking into my closet. I get out of bed every few inutes to encourage him to come to bed, but nuh-uh. He’s still awake. He & I probably cut back anti-psychotic and zoloft too much to keep him steadier on his feet (less Parkinsonism)–he via refusing and spitting out his pills, me via reverting to the older lower doze olanzapine I still have after running out of higher dose pills. I requested a new prescription of lower dose–smaller pills, which he doesn’t reject, plus more flexibility.
Pace of his decline has gradually sped up from the beginning, but took a huge leap after each seizure. He needed no help with ADLs when I broke my leg 2 years ago, little help a year ago, and a lot of help for the past few months. Krystal, the aide who started a few months ago has witnessed the steep decline since she started. But the aides see less of the crazy, which increases in the afternoon, evening, and night-time. They only come in the morning.