Monday, November 3, 2008


I'm really ready for the Universe to stop fucking with me for a while, really.

Today at 10am was the Hospice intake. My mom watched the kids for a few hours so Dave could go with me. Just when I think I'm ready to make peace with everything something changes.
He knew me today.

He didn't say my name, but he looked at me. And he talked to me. Or at least tried to. It was like it was in the past - I got the word "socks" and he pulled up his pants leg to show me his sore. It was just like before, when I went there and he would go down his list of shit that was bugging him. He knew I was there, and he knew who I was. He couldn't answer my questions, and didn't respond appropriately, but he looked in my eyes, and was trying so hard to tell me something.
Then, clear as a bell he said "I really wish I had my wrench."

W. T. F.?

This is the most with it that he's been in MONTHS, and it's just messing with me. The nurse did the hospice intake thing, explained the whole process if he makes it past the first 90 days, how aspiration pneumonia works, how people can get used to it for a while until it just overcomes them, that he's strong and stubborn and obviously hanging on etc. The pneumonia is still there, still low grade fever, but his breathing doesn't seem labored.

So again W. T. F.?

Then the biggest bombshell of the day... my father doesn't have Alzheimer's. He has Lewy Body Dementia.

I was like "Where does it say that?" She showed me, and I said "Did this come from the VA or what, because this is the first time I have ever heard this." She wasn't sure.

So I get home and I research Lewy Body, and it's basically Parkinson's symptoms and Alzheimer's symptoms, but not either disease - a different brain atrophy process. And guess what I find out. Parkinson's drugs (which he had been on like SEVEN YEARS) make it worse. And anesthesia makes it worse, and people with Lewy Body often don't come back from general anesthesia to how they were, and they recommend other means of pain control for surgery.
And guess what the fucking VA did when he broke his hip three years ago? And guess when he really went whacked???

Dude, I found this out and freaked ALLLLL over again. The doctors made him WORSE. And I didn't even stop to think about it.

So I flipped out right, and was just so pissed, and wanted to break all their faces, and was bawling and yelling at nothing in the garage and just melting down and Dave took me inside and sat me down and basically yelled at me (in a nice way) that I had nothing to do with it and it wasn't my fault, and WTF was I supposed to think, they went to med school I didn't and I always researched his meds and diagnosis and fought for him and always tried to take care of him with all the energy I had.

I know on a mental level that he's right but DAMMIT...... I feel SO GUILTY, like I should have researched more, or gotten him a different doctor even though he insisted the VA was fine, and not believed those assholes in Florida that said he has Parkinson's and these assholes in Portland that said he has Alzheimer's. And if the VA did figure out that what he really had is Lewy Body (and after reading about it I am 100% certain he has Lewy Body, I mean he has every single thing, and it's like reading an essay about the last 5 years of his life, including the out of it for months and then moments of lucidity) they covered their own asses by not saying anything, and this is probably WHY they took him off the Parkinson's meds about 6 months ago.

God, I'm so pissed off!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!

I was talking to my mom and telling her I don't want to be there when he is actually dying and it scares the hell out of me and she told me he wouldn't want anyone there anyway, and she said "It looks like the two of you want the same thing." She knows him better than anyone else on Earth, as she lived with him for a decade and a half, and I know she wouldn't bullshit me.

And then I got on ebay and bought a Gucci purse.

I am Lamer than Lame is Lame, dude.

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