'Twas talking with H last night at the dinner table about how he's doing. Difficult to get him to talk about this...he's suspicious when I ask about his health and I have to remind him that I'm asking because I care.
H asked me if I wished that he had not stopped taking his anti-virals. I said, "Well, I support whatever decision you make...I told you that. But...."
"Yea, I wished I hadn't stopped taking them, (asingleman's endearding nickname)," H said.
"Yea, I'm worried that they won't work for you, H," I said.
"Well, I'm not worried. If they don't work, then I die. Why does it matter? No one cares, anyway," he said.
"I care, our family cares, lots of friends care. Many, many people love you and would miss you."
"I wish that people would call me or come see me then," H says.
"Me too, honey."
Monday, February 22, 2010
Thursday, February 18, 2010
Whine, whine, whine
The malaise is striking...what I'm finding is that I'm as busy as ever, but I don't care all that much anymore. It's not depression so much as just being bored with it all...so I go through all the motions of being a good employee, a good caregiver. No surprise, but none of this seems important or even fulfilling.
I'd rather be gardening. And that's what I've been doing with any free time.
Was talking with H's local sister and the comparison is striking: she's so busy with work and family, but she calls it all "boring." Not that she doesn't love her family, just that she's looking forward to the last kid leaving the nest and it can't happen fast enough. And her work is anything but fulfilling or even interesting now...even tho' she loved it in the past. Drudgery she calls her life.
She seems tired, distracted, mopey, bored, a tad bitter, "flat," and, if you look under the veneer, just a bit afraid. Tho' maybe just projecton as I feel like this too.
Maybe this is just the infamous "mid-life crisis" showing up for both of us as we hit 50. Maybe we're both just a bit burned out living the lives that we have.
Surprisingly, H mentioned to me that I should take a vacation by myself. When I've floated this in the past, he's been upset at the idea. The ironic rub is that, at this point, it doesn't seem appealing...it doesn't seem, well, enough. And, of course, I'd have to arrange care for him.
When I've added time to my business trips to get a break, I've found that it isn't a respite, really; mostly it just emphasizes how lonely I feel. I'm in a strange city and while I can certainly find short-lived puerile companionship, that isn't what I really want. Well, yea, but then they go away and there you are, alone... What I'd really like is to be able to take a trip with a partner again...to have that shared experience of travelling and being a tourist.
H suggested visiting his family down South...err, I don't think so. This is just so not a break in my mind...besides, I'm still sore at them for all of the BS that I have gotten from them, not to mention their denial, and abscence from H's life. Yea, forgiveness...don't know that I can muster that right now. Besides, I don't want to talk about H with them anymore (unless something happens) and if I see them, then that's what it will be.
Really got no friends out of town that I want to visit.
Whine, whine, whine.
H said to me once that the only way out of his situation, the only path that he can see ahead of him, is to die. His health won't get any better...this is as good as it gets, he fears.
Maybe the root of my malaise is the same: this is as good as it gets. And the only resolution is for H to die.
I'd rather be gardening. And that's what I've been doing with any free time.
Was talking with H's local sister and the comparison is striking: she's so busy with work and family, but she calls it all "boring." Not that she doesn't love her family, just that she's looking forward to the last kid leaving the nest and it can't happen fast enough. And her work is anything but fulfilling or even interesting now...even tho' she loved it in the past. Drudgery she calls her life.
She seems tired, distracted, mopey, bored, a tad bitter, "flat," and, if you look under the veneer, just a bit afraid. Tho' maybe just projecton as I feel like this too.
Maybe this is just the infamous "mid-life crisis" showing up for both of us as we hit 50. Maybe we're both just a bit burned out living the lives that we have.
Surprisingly, H mentioned to me that I should take a vacation by myself. When I've floated this in the past, he's been upset at the idea. The ironic rub is that, at this point, it doesn't seem appealing...it doesn't seem, well, enough. And, of course, I'd have to arrange care for him.
When I've added time to my business trips to get a break, I've found that it isn't a respite, really; mostly it just emphasizes how lonely I feel. I'm in a strange city and while I can certainly find short-lived puerile companionship, that isn't what I really want. Well, yea, but then they go away and there you are, alone... What I'd really like is to be able to take a trip with a partner again...to have that shared experience of travelling and being a tourist.
H suggested visiting his family down South...err, I don't think so. This is just so not a break in my mind...besides, I'm still sore at them for all of the BS that I have gotten from them, not to mention their denial, and abscence from H's life. Yea, forgiveness...don't know that I can muster that right now. Besides, I don't want to talk about H with them anymore (unless something happens) and if I see them, then that's what it will be.
Really got no friends out of town that I want to visit.
Whine, whine, whine.
H said to me once that the only way out of his situation, the only path that he can see ahead of him, is to die. His health won't get any better...this is as good as it gets, he fears.
Maybe the root of my malaise is the same: this is as good as it gets. And the only resolution is for H to die.
Tuesday, February 16, 2010
When it is time
Recently, a BBC television reporter said on camera that he had euthanized his partner, who was dying of AIDs (article here).
H and I have discussed this possibility. When when we put our cat to sleep, H asked, cyring, "Why do we treat animals better than humans? Why can't I just go to sleep like that when it is my time instead of suffering?"
We have talked about end of life and I promised him that, if needed, I'd take care of him at the end, as did Gosling.
While I hope that I don't need to do this, I will if necessary to honor my commitment and love to my partner of almost 30 years.
H and I have discussed this possibility. When when we put our cat to sleep, H asked, cyring, "Why do we treat animals better than humans? Why can't I just go to sleep like that when it is my time instead of suffering?"
We have talked about end of life and I promised him that, if needed, I'd take care of him at the end, as did Gosling.
While I hope that I don't need to do this, I will if necessary to honor my commitment and love to my partner of almost 30 years.
Labels:
dying
Monday, February 15, 2010
Monday, Monday
I H8 VD
Just don't like Valentine's Day (humbug). My (few) single friends don't like it as everyone gets all giddy and romantic with their SO. I've got one of those, but I dislike VD as much, maybe more, than my single friends.
Not because I'm lonely this VD (well, sort of), but because I'm in this tween space…not really involved and not really single. Yet, I feel obligated too and I also want to... do something for H….
Yet, my desire on this Valentine's Day *is* to be a single man.
So, H and I exchanged cards and a bit o' chocolate. A nice acknowledgement without any reference to the sex and romance part. Just the love, then…what a relief.
What isn't there
I work with a bunch of smart people, really smart people. And when you get into a meeting with them, for some reason they focus on what isn't there: here's what's wrong with this, here's what you missed....
Now, this isn't restricted to work certainly, as many folks focus on what they don't have instead of what they have.
I have a friend who is quite wealthy and healthy, has a wonderful man who loves him, several great kids, and more toys and property than anyone could want. But when I see him, all he talks about his how or ex-wife isn't doing this or that, how he's lost money on this or that transaction, how his kids aren't growing up right, and how much he hates living here and wishes he were somewhere else.
As annoying as I find this, I fall into this as well. In fact, I've whined here about my lack, sometimes at great length.
In balance, I'm healthy, well employed in a job I like, and generally a happy person that owns a home and loves my garden and music. No real worries in life other than dealing with H dying, which is a big one.
The tough work for me to reach acceptance and always see the sick and vulnerable man that I love who needs my help instead of seeing what he isn't doing for me (besides it's my job, not his, to make my life work).
Just don't like Valentine's Day (humbug). My (few) single friends don't like it as everyone gets all giddy and romantic with their SO. I've got one of those, but I dislike VD as much, maybe more, than my single friends.
Not because I'm lonely this VD (well, sort of), but because I'm in this tween space…not really involved and not really single. Yet, I feel obligated too and I also want to... do something for H….
Yet, my desire on this Valentine's Day *is* to be a single man.
So, H and I exchanged cards and a bit o' chocolate. A nice acknowledgement without any reference to the sex and romance part. Just the love, then…what a relief.
What isn't there
I work with a bunch of smart people, really smart people. And when you get into a meeting with them, for some reason they focus on what isn't there: here's what's wrong with this, here's what you missed....
Now, this isn't restricted to work certainly, as many folks focus on what they don't have instead of what they have.
I have a friend who is quite wealthy and healthy, has a wonderful man who loves him, several great kids, and more toys and property than anyone could want. But when I see him, all he talks about his how
As annoying as I find this, I fall into this as well. In fact, I've whined here about my lack, sometimes at great length.
In balance, I'm healthy, well employed in a job I like, and generally a happy person that owns a home and loves my garden and music. No real worries in life other than dealing with H dying, which is a big one.
The tough work for me to reach acceptance and always see the sick and vulnerable man that I love who needs my help instead of seeing what he isn't doing for me (besides it's my job, not his, to make my life work).
Labels:
acceptance,
me,
our love
Wednesday, February 03, 2010
Snippets from the edge (again)
Oooh, look, ponies
We're driving to the Dr. yesterday, past some pasture land where some Shetlands live. H stands up in the car (a convertible with the top down) and is leaning outside the car pointing and yelling (you guessed it), "Oooh, look, ponies!" Giant smile on his face, even as I pulled him back into his seat with the seat belt.
How I got it
Took H to a new Dr. (GP) yesterday. When the Dr. came in, H blurted out, "I just want to tell you how I got HIV…." And he did. I filled in the rest of the history with H nodding, although not necessarily in time with my information.
Salvage
Well, the new anti-viral regimen is considered a salvage regimen, where they just throw a bunch of anti-virals at the virus in hope of controlling it. Not surprising, but I had to figure this out myself with research…why can't the doctors just tell me this kind of stuff? I'd prefer honesty, thank you.
Yellow/gray
H's sister came to visit last weekend and commented privately to me, "His skin, it's kinda yellow/gray now. He's lost weight." No kidding. She was surprised that H got so tired during her two-hour visit.
A whole lotta shaking
H's hands are shaking more and more and his head's beginning to as well a bit. He is struggling to sign his name on paperwork.
Feeling any better?
I asked H if he thought that his viral load was dropping, if he was feeling any better since he's been on his meds for over three weeks now. He says, "Not really…I'm getting more tired…it may be going up instead." "I'm sorry, honey…are you afraid?" "Not yet," he says.
Please forgive us
Got an email from H's parents where they said, "please forgive us for not supporting you as much as we could because we were busy with our own lives.… I sure hope that you both can spend Christmas with us at our new house." Errrr, thanks, but you really need to come up here and visit your son. Don't you get it? It isn't about me…and H may not make it to Christmas ("let's wait and see how he does").
We're driving to the Dr. yesterday, past some pasture land where some Shetlands live. H stands up in the car (a convertible with the top down) and is leaning outside the car pointing and yelling (you guessed it), "Oooh, look, ponies!" Giant smile on his face, even as I pulled him back into his seat with the seat belt.
How I got it
Took H to a new Dr. (GP) yesterday. When the Dr. came in, H blurted out, "I just want to tell you how I got HIV…." And he did. I filled in the rest of the history with H nodding, although not necessarily in time with my information.
Salvage
Well, the new anti-viral regimen is considered a salvage regimen, where they just throw a bunch of anti-virals at the virus in hope of controlling it. Not surprising, but I had to figure this out myself with research…why can't the doctors just tell me this kind of stuff? I'd prefer honesty, thank you.
Yellow/gray
H's sister came to visit last weekend and commented privately to me, "His skin, it's kinda yellow/gray now. He's lost weight." No kidding. She was surprised that H got so tired during her two-hour visit.
A whole lotta shaking
H's hands are shaking more and more and his head's beginning to as well a bit. He is struggling to sign his name on paperwork.
Feeling any better?
I asked H if he thought that his viral load was dropping, if he was feeling any better since he's been on his meds for over three weeks now. He says, "Not really…I'm getting more tired…it may be going up instead." "I'm sorry, honey…are you afraid?" "Not yet," he says.
Please forgive us
Got an email from H's parents where they said, "please forgive us for not supporting you as much as we could because we were busy with our own lives.… I sure hope that you both can spend Christmas with us at our new house." Errrr, thanks, but you really need to come up here and visit your son. Don't you get it? It isn't about me…and H may not make it to Christmas ("let's wait and see how he does").
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