Monday, June 18, 2012

Tipping point

Over the past month or so, H is back to being in bed much of the time. He has been exhausted and his dementia is worse right now. He's not eating much at all. He's sweating profusely again at night. These are classic signs of a viral load spike.

While his viral load is still pretty low, his T-cell counts have dropped 50% in the past month or so for some reason. Usually, the viral load rising is the leading indicator, followed by T-cell counts declining. But not this time.

This type of thing has happened before: the virus gains resistance to the meds, he gets near the edge (e.g., his dementia gets much worse, he gets very sick), and then a new med is available (just at the last minute). And they pull him back with  a new med. Then the virus gains resistance to the new med...rinse and repeat.

But this time, H's virologist doesn't know what to do as H's virus is resistant to all the alternative meds. And there aren't any new ones of the immediate horizon.

H is afraid right now and I'm doing what I can to comfort be kind, loving, & helpful. He is uncharacteristically not in denial about what is happening. I've told him that we've been here before (many times) and that it will work out. But I don't believe it...not this time; maybe, I'm just being hopeful that this is the end.

Over the past month or two, I've been doing research on placing H.  I've finally come to the clear conclusion that I just can't do this anymore, can't deal with his dementia, the lack of a partner, the work, the burden, the stress. Been here before too. Maybe placement will be easier than I fear, given what is happening to him right now.

The related cycle is: pull him back from the edge with a new med, then after a year or two, the meds are failing and I'm going crazy as his dementia gets worse and he becomes less functional. Then I move to place him. Then he gets on a new med and gets better. This cycle, too, has happened many, many times.

However this round plays out, what I can say is that I'm optimistic for life after H. I've been fantasizing about it and, while you never really know how it will be, I am more than a little excited at finding out what life can be without this burden.

1 comment:

Doddle said...

Hey I have been reading your blogs and wait for updates. I wish I could write to you. Please reply if possible.
Take care.