Thursday, January 28, 2010

Family fun

H continues to be down much of the time while we're waiting for his viral load to (hopefully) drop with the new anti-viral meds that he started a few weeks ago. And his dementia continues to get worse now…more of the same, really.

I sent out an email update to his family and told them that three weeks into his new meds, I'm not seeing the turnaround that I've seen prior when he's started new meds.

And I told him about his fixation and abject fear about certain conspiracy theories: "great culling," Bildenberg Group, the US government caused/let 9/11 happen, etc.

I asked them not to encourage him about these topics.Some of them breathlessly talk about these topics without giving anyone a chance to say anything.

What I got back was a whole lot of weirdness (no surprise).

"He's not crazy because he thinks these things are true. I'm worried about what is on Fox News also…everyone should be."…I never said he was crazy or that these things aren't scary. (Ummm, yea Fox News IS scary!)

"I called him this afternoon and he seem very lucid."…not my day-to-day experience.

"My son has OCD paranoia, so I understand how difficult this is to deal with."…uhh, no you don't…you don't have any idea where H is, especially based on a 5 minute conversation.


My whole point was to tell them that he's afraid of these conspiracy theories. And since I care about him and don't want him to be afraid (e.g., not able to sleep at night), they need to help me manage his emotional state. Specifically, stop talking with him about these things…you know who you are!

I'm sending these emails out to give them a regular cadence of information about H. Clearly, they don't like what they're hearing (and I don't like it either). All of this is to give them information so that when things happen (sic), they won't be surprised.

Friday, January 08, 2010

New Year's Snippets

Best Wishes
I hope that my gentle readers had a great Holiday season and New Year's celebration.

No trip for H
With H's viral load so high, he just wasn't up to the trip and so he stayed home. Really was fine with me…oddly enough. 'Twas happy that I wasn't angry.

No meds for H or are there?
At first we were told that no meds would work for H's virus, now we're being told that there *might* be an anti-viral regimen for him, pending some conversations that his virologist will be having with some of his colleagues. We just have to wait for a bit to see…but with H's viral load so high, he's fading rapidly again.

Less and less
H's decline into non-functionality is continuing, of course. Not much to say here that I haven't said before. He's losing weight, doesn't want to eat, stays in bed most of the time….

Conspiracies abound
H's paranoia is increasing…he's been worried about any number of conspiracy plots and the latest one is about the "great culling," which postulates that pandemic diseases are just a way for "them" to get rid of undesirables. Of course, H sees himself in that category. He tells me tho', that he has a way out if he needs one (assisted suicide). I wish that he weren't so afraid; very sad.

Not just H
Even tho' it is happening to H, I hadn't really seen much information on HIV dementia and accelerated aging for folks on the meds for a long time. Now, there is this article in These stories are so sad and yet oddly comforting for me as they give me some understanding of what is happening to my dear H.

Peace at home
One of my goals for this last year has been to have peace at home. For a long time, I have been filled with so much resentment and H with so much fear and frustration, that the "tone" at home was awful. I'm happy to say that it is peaceful now for the most part…me stopping drinking helped and also me working to reduce the poisonous resentment that I've held towards H. Yea, I can deal with the burden, but the resentment was just so corrosive. The key change for me was acceptance: H is like a (sick) child now and that isn't going to change, ever.

Expectations again
The father of a long-time friend is very ill with heart and kidney failure. The father's wife asked me, "What do I do? He's no longer fun to be with, he can't remember our history, what am I supposed to do? And I'm so angry at him."

"Love him and don't expect him to be the way he was. He can't be that for you anymore," I said. "That's what I've had to do with H…otherwise, I'll end up hating him and I don't want that."

As if this were so easy….