Wednesday, April 23, 2008

Good news, bad news

For a year or so, Drs. have had a hard time controlling H's HIV viral load. His virus is resistant to all, literally ALL, the meds that were available last year. As a result, he went into a nose dive last Fall, the culmination of which was my ill-fated attempt at placement and a corresponding nose dive into burnout for me.

But in February of this year, new meds came out. And a few months later, his viral load is undetectable for the first time in 10 years. And his T cell count is the highest it's been during that time as well.

At the same time, he's taking what amounts to chemotherapy and it makes him feel sick a lot of the time. So, whether his viral load is up or it is down, he's just not able to participate that much.

It's happened many times, about every two years or so: his virus gains resistance to the meds he's on, his health takes a dive, we discuss hospice, etc. Then, new meds come out, they pull him back from the brink and for a year or so he's out of the woods. Then his virus develops resistance…rinse and repeat.

What's striking this time is that his dementia and delusions don't seem to be improving, even as his viral load drops, hence all the fretting about alien conspiracy theories.

More than his physical health, what has been hardest for me is the mental decline.

Monday, April 21, 2008

Accepting craziness

I've come to the conclusion that H's mental state is doing nothing but declining. And so I now think of him as crazy. It's one thing to have dementia, it's another to be "crazy." The more I've thought about this, the more freeing it is…this is a key part of my acceptance work to call it what it is.

Part of me is sad because I'm giving up hope that he'll ever get better, but he just won't. And as he sleeps more and more and becomes more and more delusional, I know that the end is in sight. What end, I don't know, but some end is in sight.

And so, the drama grinds on, but seeing his mental state decline so much recently is helping me accept the inevitable more easily and, perversely, gives me much hope for my in, I will have one soon.

Thursday, April 17, 2008

Conversations with H

I've posted here many times about the dementia and delusions that H has. His Dr. once told me that even if they control his HIV, his dementia can get worse, much worse.

It is. And it is getting harder to have a sane conversation. While he's been a bit slow and bizarre for years now, I could usually count on at least a few cogent moments during the average day and the average conversation. This the case less and less now.

H used to be interested in what I would call conspiracy theories - you know, aliens mate with members of the white upper class to cement their control over the rest of us. He would tell me, we would discuss and sometimes laugh and giggle at it.

Last night, when we were talking about one of these theories, I commented on how sad I thought it was that "conspiracy theorists" look at a set of circumstances and derive the most paranoid view when any number of things could actually be happening. He exploded and accused me of calling him a liar and that these so-called theories are backed up by facts: Eisenhower really did meet with the aliens in the 50's, we have their advanced technology but the government keeps it a secret, and that HIV is a government plot to rub out gays and other minorities. Maybe true, maybe not. But I didn't call him a liar.

I tried to explain to him that we were talking past one another; he didn't get that. And that is not surprising: he doesn't really know me anymore because he hardly sees me…I’m either at work or he's sleeping all the time. "That's because we're not having sex anymore," he says.

He again threatened to buy a gun and "blow his brains out" unless we started having sex again. Sigh. I explained that consenting adults is plural and that I no longer consent. Besides, having your partner threaten suicide gets me all hot, how about you? I told him that threats like that are emotionally abusive and that I won't tolerate it anymore (I've said this before). Later, we're watching Alien (the movie) on TV and just as the first set of carnage begins, he said, "At least you can find it in your heart to give me a hand job." Uhhh….

We have a pet that is very, very noisy. Noisy enough to cause hearing damage (really). It is H's pet and so I've told him that either it quiets down or it has to go: I love the pet, but I'm not willing to go deaf. Just not a fair tradeoff. This has now become, "You can't stand X. You've never liked X; I know that you've always hated him, been jealous of how much time and love I spend with him." Uhhhh, no, I just don't want to lose my hearing any faster than I am.

And it goes on from giving a sales person a hard time about something stupid (they donate your old appliances to charity and get a tax break from that and so we should get a better price on a new appliance) to compulsively printing out web pages on aliens and marking them up as though studying for a college final exam.

The real cause of my pain is my expectation, my overwhelming need to have a complex & reasonable conversation with this man…like we used to. So not the case. It is a big loss for me, plain and simple. And I'm very sad for both of us.

The reality is that he is losing his mind and is becoming, if not already is, a crazy person. As long as I think about it in this way…and kindly patronize him like you would a doddering relative or a fantasizing child…there is peace in our house (although I have HUGE amounts of cognitive and emotional dissonance). But as soon as I try to relate to him as the adult he used to be, it fails and yelling often ensues.

No wonder they call dementia the long goodbye.

Tuesday, April 08, 2008

For almost half the time...

On Thursday, H & I celebrate our 25th anniversary. Wow. Even I say wow...and I was here the whole time.

While we will celebrate in some fashion...I don't feel celebratory, just tired...we still haven't settled on what we will do.

Of those 25 years, H has been sick to very sick - and officially disabled - since 1996...for almost half the time. And I have carried him all this time.

Usually, I'm just a fountain of words here, but today I have nothing left to say.