Final Verdict

Jim's brain had Stage VI Alzheimer's Disease. I spoke with the doctor that fist diagnosed Jim today and he said that Jim's "off" behavior is what threw them towards the FTD diagnosis. He said that Jim had what they call a high mental reserve (or something like that) so his brain was able to handle trauma a lot better than most people who have dementia. He said that they are currently experimenting with the ways testing for dementia is done because people with higher intelligence are not being diagnosed soon enough.
He also said that they had presented Jim's case at a conference last week. I expressed my utter lack of understanding at this whole thing, that jim could be so into this disease yet still walk and talk, play the piano, how he was denied by hospice 3 times, and how the doctors were testing for HIV and mad cow disease while he was actively dying. i left out a lot, which he was aware of, he just said he didn't know and that is what he is trying to figure out. i'm glad he called.
There are two groups of doctors in my husbands disease, those who treated him by our insurance which would be Kaiser. and those that diagnosed him and studied him, these were paid for by us and grants, this is UCLA-Easton Center.
there was never any hope in this disease, i knew it was a dead end from the beginning. I just never imagined the how alone we would be in it. even till the last moments we were alone, hospice signed us up 13 hours before he died and yet no one was here in the last hours. they didn't think he would go so quick, no mind that i said he wasn't going to make every much longer (i gave them less then a day and a half estimate), they insisted that it wasn't "time" and said that the "team" would be in in 2 days.
 he was in respiratory distress for an hour and a half. shaking, arms and legs flaring, turning purple in this fingers, feet, and face. it was like how you see people die in the movies being held in the arms of someone else. the shaking and distress for a couple of minutes before...nothing. well, drag out those minute by over an hour, it was HELL! and i tried so hard for it not to be that way, if he could have been on enough morphine to go into a coma then respiratory failure, oh Jesus,  how fucking hard is THAT TO GET?!?!