A model to be forgotten

Last night, I got another reminder.

Was helping H put together an Excel spreadsheet model. He has a pretty good idea of what he wanted, but couldn't figure out how to add formulas. Odd, since he was the Excel whiz for many years, creating inventory & cash flow models for our businesses, creating monthly budgeting worksheets and so forth.

Last night, I had to show him how to select a cell, copy it, and then paste it no less than 4 times over the course of 10 minutes. He kept forgetting which cells were which and where to paste the copied ones.

This is scary.

Lining up

So, H and I have been talking about the following:

• That he's ready for the next plane (he brought up unsolicited)
• That he's had a good life and he's glad for that (he brought up unsolicited)
• He's at peace with the possibility of dying
• I am at peace with the possiblity of him dying
• That he doesn't think he'll be here in a few years to enjoy the new garden grown out (his intuition tells him)
• That I don't think he'll be here in a few years too (my intuition tells me)

Sheesh, something is coming....

67 things about me

1. My favorite color is blue
2. I like fast cars and have owned a few
3. I like men who are hot, smart, and most importantly, sweet
4. My garden is my sanctuary
5. Computers (either at home or at work) eat much of my time
6. I have more regrets than dreams
7. I lead with my heart, not my mind
8. I am prone to depression
9. I am an only child
10. I am afraid of what aging will bring
11. I work out very vigorously at the gym (see above)
12. I like working out
13. My favorite foods are: chocolate ice cream, french fries, potato chips, and beer (not in that order) (see above)
14. I love my cats
15. Right now, I have no sex life to speak of, although I often have opportunities, and it usually doesn't bother me
16. I love my partner, even tho' he doesn't meet my needs anymore
17. I am trying to figure out how to live while I wait for my partner to die
18. My work seems glamorous & exciting to others, but it is pretty dull to me
19. My hair doesn't get long, it gets big
20. I have a hairy chest, tummy, legs, and ass...sometimes I trims, sometimes I don't
21. I like Pink Floyd (a lot)
22. I laugh at giant pick up trucks & SUVs, esp those with lift kits (sorry 'bout yer dick!)
23. I'm afraid of dying alone
24. I'm afraid of getting seriously ill
25. I really enjoy public speaking and have done it professionally
26. I'm very shy and nervous in small social groups
27. I would like to experiment with a love relationship with a gay couple (I think)
28. I fantasize about life without a sick partner
29. I fantasize about living alone
30. I love computer games, especially The Elder Scrolls series
31. I love plants of all types and have very little space left for new ones in the house or the garden
32. I'm told that I look younger than I am (thanks mom 'n' dad!)
33. My favorite movie is a tie between the Lord of the Rings trilogy, The Shining, and Fantastic Planet
34. My favorite TV show is a tie between Six Feet Under, South Park, and Transgeneration
35. I'm a geek at heart
36. I don't care much about the latest fashions, tho' I do like nice clothes
37. I don't care at all about celebrity gossip, reality shows, or who's who
38. I would like to try living in Ireland, Scotland, or London
39. I have no time for bitchy, judgemental, or mean people...so there!
40. I have lived in Hawaii and decided it was not for me
41. I love fish and have had aquariums for years, tho' I don't currently have one
42. I love the feeling of comfortableness (sic) when talking with old friends
43. I really enjoy good coffee
44. I rarely enjoy anonymous sex and I say "no" way more than I say "yes"
45. The way into my pants is through my heart & mind (and having a great body doesn't hurt, either)
46. I don't kiss and tell
47. I am versatile, but prefer to top
48. I have lived in the same house for the past 20+ years
49. I have very strong intuition and it is more often than not right
50. I need to listen to my intuition more
51. I'm a Cancer with Pisces rising and many planets in Leo
52. I'm pee shy more often than not
53. I don't consider myself attractive
54. I am not impressed by how much money someone has, where they live, or what they own
55. I have a tighty-whitey fetish
56. I like men and art that make me think
57. I like to travel
58. I want to make a contribution to the world that matters
59. I'm an INFJ
60. It breaks my heart to see my partner so sick and losing his mind
61. My mantra for many years (with thanks to Nietzsche): "What does not destroy me utterly makes me stronger"
62. I've liked boys/men for as long as I can remember
63. I got in trouble for playing with the neighbor boys' junk
64. I came out at college when I was 20
65. I am a butt man
66. For the first time in my life, I'm actually gaining muscle mass from working out...mostly because I've been eating more (see below)
67. I no longer have a six pack

I'm so tired (& puffy)...

Yesterday, H and I are sitting in the office, him at his desk, me at mine. He starts moaning about his foot pain (neuropathy) and runs to get meds.

He sits back down and says, "I'm so tired of this (a single man's name).... I don't want to do this anymore...these pills, always chasing the pain." I say, "I understand. It's OK. I don't blame you. I wouldn't want to either...so many years. It's OK; I understand." He smiles with a bit of tears in his eyes. I want him to know that it's OK to go, that I'll be OK, that I have a plan...even tho' I'd miss (what's left of) him and the companionship at home.

He knows he's slipping again (he's been getting more confused and forgetful again) and his pain is very bad. I know that sometimes he wants to go...he is tired & depressed...he has been so sick for a very long time now.

I've heard that it helps sometimes to tell someone who is very ill that it's OK for them to go. And it really is OK with me...although a bit frightening at times. I have to say that he's receding again and has been for a long time...I live mostly with memories, many of them wonderful, now anyway as he's not here much. In many ways, I've already buried him...I'm just waiting for the formality.

They have him on some new meds...they make his feet, legs, belly, & face swell. A known side effect, but being the good fag that H is, he doesn't like it and wants to stop taking these meds.

H spent Friday night with a friend/fb of his. He said he couldn't get hard, coudn't come. No real reason to try anymore, he says.

My poor guy is so depressed. Who could blame him? Here he is a young(ish) man and it's all been taking away: health, career, friends, incredible mind (and ass!), big dick, etc. He's got the body of an old man now. We'll talk with his Dr. about either more or a different anti-depressant. In the past, changing anti-depressants hasn't really helped him much.

It's a strange thing for me: I don't feel all wacked out, tho' a little anxious. I think that I've made peace with what is likely going to happen. I can't do anything about it.... And, I do want it to happen sooner rather than later as much for his sake as for mine.

The next plane

It's been pretty quiet & tense...distant...at our house recently. I have been sorta in a funk and burned out. H is scared as his VL is going up again. Dr. says not to worry, but H is also getting more forgetful and confused again....

So we were talking and he talks about how he's OK with dying, moving onto "the next plane of existence." He said, "I've had a good life, went to college, had some businesses...done things that I've wanted to do. Never got to Europe tho'. It's OK, I'm not afraid. I'm ready to accept what comes." There's a part of me that says I should just take leave from work and take him on a trip or two while he still can go; I don't think he can go, really.

I know that he is afraid, but I also know that he knows that it's time to move on. He's been in denial that he is really that sick for a long, long time now...a dear friend of ours talks about H "sticking his head in the sand." This is the first time where he's looked back at his life and talked about how it's been good. I'm glad that he's coming out of denial, but I'm a little nervous about what's coming next. And, mostly, I'm glad that he thinks of his life as having been good. I am worried about having regrets on my deathbed and I need to address that.

This morning while out in the garden, I had a rush of excitement and fear when I looked at the sun rise. The thought was: "someday soon I'll be out here and he won't be inside anymore when I go back into the house. It's my life now and I've got to figure it all out...without him." There is a sense of anticipation and my gut tells me that it's coming...soon...this year. I have to say that I'm feeling lighter than I have in many, many months, in spite of knowing that something will happen soon enough.

So both of us can feel something coming...he's trying to make peace where he can, wrap up things in some ways, and has a sense of urgency about living his life. I'm just waiting, knowing that soon enough I'll be on my own and I am both thrilled and terrified. At least I'll be alive. And the reality is that H isn't contributing much at all these days, in any respect. He's not wholly there...so what will be missing when he dies? Whatever is left of him now and I'll be missing his company.... But, I'll feel relief that finally this is all winding down and I can get on.

I can't imagine being in his shoes: so sick for so long, stuck at home since he can't drive anymore, many friends gone, those that are left are wonderful but not around that much, I'm only home a few minutes in the morning and then after work. And, while I do my best to be reasonable, I have to say that I'm less than present most of the time. I would find the isolation oppressive. Hell, I find my own isolation oppressive. I need to have some guilt-free fun.

Just how done is "done?"

I went to a caregiver training class awhile ago...a class on caregiver burnout. Sorely needed, I might add.

Striking that when I went through a "Are you a burned out caregiver?" quiz, I scored very high...severe burnout, which basically means that you shouldn't be a caregiver anymore as the burnout affects your ability to provide care.

What do you do when you're "done," but you have to go on?

More doctor appointments this week and I find myself struggling to even pay attention at them. I know that they're important...I know that he needs the care and no one has the overview of what's going on with all the Drs and the details of what's happening at home. But geez...I am so sick of all this.

How am I burned out? Let me count the ways from the quiz:

always exhausted (yup)
feelings of hopelessness (sometimes)
overwhelmed (yup)
emotionally numb or emotionally explosive (alternating between the two)
unable to focus or concentrate (yup)
feel inadequate to the task (yup)
the need for an increased use of alcohol or stimulants (yup...former)

The teacher, class, and materials say, "Take care of yourself." Sure. I understand that. Get rest, recreation, exercise, eat well, etc. I try to do those things. But NOTHING changes the reality of what's happening to either H or me.

He's dying and I can't be there for him in the way I'd like. I want to help him, and I'll soldier on as best I can, but it's bad right now. I won't leave him, but I feel like I'm waiting for him to die, which I am honestly. He knows that too. And he is too.

And it's going to get worse before it gets better.

As the loin stirs

And, after writing the prior entry, I met this very hot guy at the gym...fantasy man...nice guy too. Who knows what might happen?

Having them in front of you "in the flesh" is so much more compelling than having them in front of you on the computer...duh.

On the computer, the brain gets too involved...is he really that hot? is he lying in this pics or profile? how far do I have to drive? does he want to go through with it or is he "shopping?" what if I don't like him? blah, blah, blah.

But meeting someone in person: your gestalt responds to the gestalt of the other. I'm not just looking at a picture or yet another series of IMs on a computer screen. There is a living, breathing (hot) man there, smiling at me. He smells nice (at the gym!), I like his body language and his eyes, his smile, and what I can see of his body, which turns out to be most of it happily.

It's been a long time and the pull is strong.

Needs, what needs?

Earlier in H's illness...when he was too sick...I had boyfriends, for lack of a better term. And it was good. I mean, I persued 'em, had fun with them, had sex with them, and did other stuff too. H didn't know and I have no intention of telling him now, 8 years after the fact.

Now, he's know some of my bfs or fbs since then, but he's always been insanely jealous...even when he was healthy. It's worse now, I think, because he feels so insecure due to his health. At this point, I don't know if I would tell him or not...probably not.

Truth be told, the drive just isn't there right now. Oh sure, I get horny and take matters into my own hands (sic), but it just seems too much work to "find a man," for lack of a better expression. In the past, I met guys online and it worked out fine, believe it or not. Minimal flakes, no liars. Today it doesn't seem that way.

Aside from the logistics, I just don't have the energy to persue someone. Weird. Clearly, this is related to my emotional state. And, I know that it's not just a "get me off need," but a need to engage with someone...to be with someone who doesn't look sick....

Geez. H can't meet my needs and I no longer have the energy to pursue 'em. In a word: f*!@$ed (or rather not f*!@$ed).

Just when you think you can have hope

I've been plugging along now for a few weeks and feeling pretty optimistic. H's last viral load test was down, he's had more energy, he's eating, his night sweats stopped, and he's thinking more clearly. T-cells are 450+; VL 39K. He's looking more like his old self.

Now, his viral load is up, he's sleeping more, he's sweating again at night, and he's getting more forgetful and confused by the day. T-cells are still strong tho'; VL 73K.

VL almost doubling in a month is not good, especially since he's on one of the last meds that might work for him. We see his doctor next week. 100K VL is the threshold...if we can keep the VL below that, then the PML won't progress (as quickly).

What's striking now is how quickly he is getting more forgetful & confused. I had to explain our cell phone plan to him (granted, they can be confusing), but he couldn't track. 4 times. I've explained this to him before, but he forgot. So, I just simplified it for him. Here, use this phone....
We've had a friend, S2, stay with us the last week. He notices the confusion as well. He notices the decline since last year.

It's the PML. Stats are bleak: 90% of the folks who get it die within a year of diagnosis; a few have a complete remission, some stay where they are. Even with HIV meds that work to control the virus, which doesn't appear to be happening right now, average life expectancy is 2 years from PML diagnosis.

The short story is that it will likely get worse...it is just a question of how quickly. Last time we saw his Dr. (a few weeks ago), Dr. was very surprised that H is doing so well. We see Dr. again next Monday. It's horrible to see him improve physically, but to experience him losing his mind.

I've written about friends disappearing and offered some thoughts about what sick people need from their loved ones. Joe has captured that so well; I just fell apart when I read this post ("I Will Hold You Ten Times" is the name of the post. 1/30/06).

God, I am so tired and so afraid.