Tuesday, April 27, 2010

Losing them over & over again

At his sickest, I'd get an occasional glimpse of the old H...and that would make me want more. Reminds me of taking a drag on a cigarette after having quit smoking; I always want more.

And now, I get to see more of the old H...bit by bit he's coming back. So, extending my metaphor, I get to smoke the whole cigarette. Of course, I can't just smoke one; I want more and more.

Now, this has happened over and over again, where H is at the brink (and a "zombie") and then he gets pulled back and returns to more of his former self. The miracle of modern medicine.

Problem is that he's weller just long enough for those fond feelings and that love that I have for him to well back up...maybe even some hope and optimism that things can be different, that my ole H will return to me for good. And as he gets weller, then I also dread the inevitable decline again. Then he moves back towards the brink, there is no H there anymore, and I need to steel myself up for a possible death, hospice, etc.

What is hardest is that I fall again for him as he gets well, then I lose him over and over again as he teeters on the brink.

Dementia is called the long goodbye and it is.

Thursday, April 15, 2010

Back from the brink

A few months ago, H's viral load was 330,000...the second highest that it's ever been. Now, 3 months or so into the next round of new meds, his viral load is 100. Yes, 100, no comma.

Back in December and January, as I have done several times now, I was steeling myself to get hospice involved. And, like before, I made the phone calls and talked with the Drs.

But a few days ago, I came home to a vacuumed house, the beds made, stuff put away, and H making a sandwich for himself. Something is different…and then we got the news about the drastic drop in viral load.

A long-time friend of ours told me yesterday that last Fall and Winter, H was a "zombie" and that it was hard to have a conversation with him. And now, she sees the improvement in H as well.

"You know, , I don't understand how you do it," she says.

"Do what?"

"He's dying, then he's not dying, then he's dying again, then not dying again," she says.

"Yup it's a white-knuckle ride. It's happened so many times I can't even remember them all...and it will happen again, most likely. The doctors don't know and I don't believe them anyway at this point."

"Yea, but how do you do it?"

"Well, it's really hard. I know that I have no control, so that doesn't bother me much anymore. I have a good therapist and I take anti-depressants. But, at the end of the day, I can't change what's happening to H and I accept that."

"Right, but how do you get up every day and do what you do while H goes up and down?" she presses.

"I think that I've compartmentalized a lot of this by now...I've divorced myself in many ways from what's happening with his health and I've divorced myself from romantic feelings for H as a survival tactic. And I don't expect him to get any better...I expect him to get worse...so I'm not disappointed. But, to be honest with you, I don't know how I do it. I just do it because I have to."

While I'm glad that his viral load is down and he's more himself, what really bothers me is that I know he'll go the other way again. And then they'll pull him back again. And that this will drag on and on. And when I indulge this line of thinking, that's when I don't believe I can cope.