Tuesday, August 25, 2009


Strange, but true…I am, for the first time, feeling peace with where H is and what is happening. Now, that doesn't mean I like it, because I most certainly do not.

Happily, I no longer get angry (or as angry) at H for his incoherent questions, his general lack of ability to accomplish anything, or his need for my help in almost every area of his life. These days, I have caught myself trying to be helpful, to anticipate his needs and to do so willingly and whole-heartedly, even cheerfully.

I'm relieved that I'm finally feeling gentle towards him again…been a long time, too long.

As I recounted in my last post, I recently pressed on finding the parrot a new home and getting a viral load test during his anti-viral medication holiday. Both of these topics made him very angry and remarkably coherent for several minutes, which is a rarity. The net of it is that he doesn't want to know what is viral load is doing, doesn't want to re-start the anti-viral meds, and doesn't want to work on finding a home for the parrot.

Seems that all he wants to do is spend time with his bird and with me. And sleep.

Last night, I was talking with H about how much he's sleeping these days (18 - 20+ hours a day) and that I've noticed this increasing the past few months. Again, I got one of the most coherent answers I've heard in a long time: "Well, I've just given up. I can't do anything. I feel sick all the time. I'm in a lot of pain. I don't have a brain anymore. I'm tired of fighting this. I just don't want to be here anymore."

This is the most honest answer I've heard from him in a long while; usually, it's about how he will get better…"when I get better, I'll do ," or, "when I'm on my med holiday, I'll…".

And without taking his anti-viral meds, he will die. Simple…they are the only reason he is alive today. We'll see if he really doesn't want to restart his meds when it is time to do so (it may already be). But, for now, I'll support him in his decision, even if it means he will die. Truth be told, his life is no better if he takes the meds; in fact, he'll just feel sicker from the "chemotherapy."

And while what is happening is sad, I am relieved that both of us are arriving at some kind of acceptance, albeit by very different paths.

Thursday, August 20, 2009

Birds in a cage

Whenever I get overwhelmed by the whole ball o' fun, including work, stress from watching H decline, and now having to do everything around the house (except for cleaning and H's meds), I just tell myself, "This sucks, but I can handle it." Seems to work much of the time.

Nonetheless, I find myself fantasizing about life "outside," life without caring for a very sick person…of course, the fantasy is likely better than what the reality might actually turn out to be.

H has had a large parrot, a macaw, for about 7 years now. In the past, H took the bird on picnics, to Petco, to friends, and for long walks around the neighborhood. But recently, H has not been able to do these things and is now having trouble holding the bird as his hands are shaking. Of course, H can't clean up after the parrot or feed him, etc….so I end up doing that.

For awhile now, I've been thinking, but not saying, that we need to plan for a home for the bird when H can no longer care for him. Now, these birds need a lot of attention…they are highly social animals and they adopt families as their "flock," so it is bad for them if they spend too much time alone or in a cage, which is what is happening now. I work much of the time and H sleeps pretty much all day.

I've raised the topic of H and I working together on finding a future home for the parrot (but, likely, I'll have to arrange that myself). I want to make certain that the bird gets a good home, someone who knows how to care for him. But H got really, really angry about it and said that the Dr. just needs to change his meds so he doesn't shake so much, but that is just one part of it.

H fell again the other night and was incoherent for 5 minutes or so afterwards. This is the fourth time in two weeks that he's passed out and fallen. Luckily, I was home each time. Drs. know about this, but say that his blood pressure is so low that they're not certain just what to do. Mostly, "just don't stand up so fast."

This morning, H said that he is afraid to take a walk in the neighborhood or go anywhere because he might fall down and that he doesn't feel well. And that he's afraid to leave the house without me. And so, even tho' H stopped taking his HIV meds this Summer, so he could "have a life," he doesn't.

Thursday, August 13, 2009

When he's feeling better

It drives me crazy when I come home, as last night, and H is in a chipper mood and has been doing stuff.

"Doing stuff" in this case means playing with the pets, doing stuff on the computer, and cycling the dishes in the dishwasher. Nothing major for the rest of us, but major for him.

I guess that I should be happy that he is feeling better for that day, but really I just resent it because it's not consistent…and most importantly, that it conflicts with how I've learned to see him and my own resolve with how to move forward.

And just a moment ago, he called me at work to say, "I just called to say I love you."

While the distress and desperation that I often feel is overwhelming, so is the cognitive dissonance.

Tuesday, August 11, 2009

Are we there yet?

Back at the desk (and the Web) after a two-week+ break. Nice to get off the grid for a bit. Didn’t do any travelling this time…was a staycation and it was a delightful break from work: get up and just do stuff I want. And coming back to work is a relief from what has been going on at home.

H has been having fainting and falling spells, so that created a bit of a hubbub during my break. Well, hubbub for me anyway. Dr. didn't seem alarmed about this or H's faltering mental state…"well, yes, his dementia will get worse, yes, he's at risk for falling." What's expected by others doesn't help; it's a big deal to me.

Keep wondering when he'll die…like being on a long, hot, uncomfortable car trip and you don't know when you'll get there because you've never been there before and traffic is bad. Sure, at some point you will get there, but not soon enough, in any case.

H pretty much slept through my whole vacation. Up around noon, take meds, back in bed until 4, take meds & eat, back up for dinner at 8, up for a few hours for TV, and then sleep again. More of the same, really. Just a shadow in the house now.

So, I just go about my life, visiting friends, working in the garden, etc. and I see him for 2 - 3 hours a day.

This year, among other things, I had planned to 1) quit drinking (check), 2) focus on work until vacation (check), 3) take an extended break from work (check), and 4) figure out what I'm going to do with H.

So, here were are.

Short answer: no surprise, but I’m not going to place him until I have to. I won't place him (I don't think) due to my issues, even tho' I can really feel the burden now that I'm rested about work. But I do wonder how long he can continue to be at home by himself.

He can't remember to take his meds, is at high risk of falling, goes to bed and leaves the windows opened and doors unlocked, can't remember to eat or if he does, he can't figure out how to make food or even where to get food from the refrigerator (e.g., looking for eggs in the produce drawers).

And from here on out, that trip in the hot car will only get more uncomfortable, however long it takes to get there, wherever it is that we're going.