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").
Wednesday, February 03, 2010
Thursday, January 28, 2010
Family fun
H continues to be down much of the time while we're waiting for his viral load to (hopefully) drop with the new anti-viral meds that he started a few weeks ago. And his dementia continues to get worse now…more of the same, really.
I sent out an email update to his family and told them that three weeks into his new meds, I'm not seeing the turnaround that I've seen prior when he's started new meds.
And I told him about his fixation and abject fear about certain conspiracy theories: "great culling," Bildenberg Group, the US government caused/let 9/11 happen, etc.
I asked them not to encourage him about these topics.Some of them breathlessly talk about these topics without giving anyone a chance to say anything.
What I got back was a whole lot of weirdness (no surprise).
"He's not crazy because he thinks these things are true. I'm worried about what is on Fox News also…everyone should be."…I never said he was crazy or that these things aren't scary. (Ummm, yea Fox News IS scary!)
"I called him this afternoon and he seem very lucid."…not my day-to-day experience.
"My son has OCD paranoia, so I understand how difficult this is to deal with."…uhh, no you don't…you don't have any idea where H is, especially based on a 5 minute conversation.
Sigh.
My whole point was to tell them that he's afraid of these conspiracy theories. And since I care about him and don't want him to be afraid (e.g., not able to sleep at night), they need to help me manage his emotional state. Specifically, stop talking with him about these things…you know who you are!
I'm sending these emails out to give them a regular cadence of information about H. Clearly, they don't like what they're hearing (and I don't like it either). All of this is to give them information so that when things happen (sic), they won't be surprised.
I sent out an email update to his family and told them that three weeks into his new meds, I'm not seeing the turnaround that I've seen prior when he's started new meds.
And I told him about his fixation and abject fear about certain conspiracy theories: "great culling," Bildenberg Group, the US government caused/let 9/11 happen, etc.
I asked them not to encourage him about these topics.Some of them breathlessly talk about these topics without giving anyone a chance to say anything.
What I got back was a whole lot of weirdness (no surprise).
"He's not crazy because he thinks these things are true. I'm worried about what is on Fox News also…everyone should be."…I never said he was crazy or that these things aren't scary. (Ummm, yea Fox News IS scary!)
"I called him this afternoon and he seem very lucid."…not my day-to-day experience.
"My son has OCD paranoia, so I understand how difficult this is to deal with."…uhh, no you don't…you don't have any idea where H is, especially based on a 5 minute conversation.
Sigh.
My whole point was to tell them that he's afraid of these conspiracy theories. And since I care about him and don't want him to be afraid (e.g., not able to sleep at night), they need to help me manage his emotional state. Specifically, stop talking with him about these things…you know who you are!
I'm sending these emails out to give them a regular cadence of information about H. Clearly, they don't like what they're hearing (and I don't like it either). All of this is to give them information so that when things happen (sic), they won't be surprised.
Friday, January 08, 2010
New Year's Snippets
Best Wishes
I hope that my gentle readers had a great Holiday season and New Year's celebration.
No trip for H
With H's viral load so high, he just wasn't up to the trip and so he stayed home. Really was fine with me…oddly enough. 'Twas happy that I wasn't angry.
No meds for H or are there?
At first we were told that no meds would work for H's virus, now we're being told that there *might* be an anti-viral regimen for him, pending some conversations that his virologist will be having with some of his colleagues. We just have to wait for a bit to see…but with H's viral load so high, he's fading rapidly again.
Less and less
H's decline into non-functionality is continuing, of course. Not much to say here that I haven't said before. He's losing weight, doesn't want to eat, stays in bed most of the time….
Conspiracies abound
H's paranoia is increasing…he's been worried about any number of conspiracy plots and the latest one is about the "great culling," which postulates that pandemic diseases are just a way for "them" to get rid of undesirables. Of course, H sees himself in that category. He tells me tho', that he has a way out if he needs one (assisted suicide). I wish that he weren't so afraid; very sad.
Not just H
Even tho' it is happening to H, I hadn't really seen much information on HIV dementia and accelerated aging for folks on the meds for a long time. Now, there is this article in NYMag.com. These stories are so sad and yet oddly comforting for me as they give me some understanding of what is happening to my dear H.
Peace at home
One of my goals for this last year has been to have peace at home. For a long time, I have been filled with so much resentment and H with so much fear and frustration, that the "tone" at home was awful. I'm happy to say that it is peaceful now for the most part…me stopping drinking helped and also me working to reduce the poisonous resentment that I've held towards H. Yea, I can deal with the burden, but the resentment was just so corrosive. The key change for me was acceptance: H is like a (sick) child now and that isn't going to change, ever.
Expectations again
The father of a long-time friend is very ill with heart and kidney failure. The father's wife asked me, "What do I do? He's no longer fun to be with, he can't remember our history, what am I supposed to do? And I'm so angry at him."
"Love him and don't expect him to be the way he was. He can't be that for you anymore," I said. "That's what I've had to do with H…otherwise, I'll end up hating him and I don't want that."
As if this were so easy….
I hope that my gentle readers had a great Holiday season and New Year's celebration.
No trip for H
With H's viral load so high, he just wasn't up to the trip and so he stayed home. Really was fine with me…oddly enough. 'Twas happy that I wasn't angry.
No meds for H or are there?
At first we were told that no meds would work for H's virus, now we're being told that there *might* be an anti-viral regimen for him, pending some conversations that his virologist will be having with some of his colleagues. We just have to wait for a bit to see…but with H's viral load so high, he's fading rapidly again.
Less and less
H's decline into non-functionality is continuing, of course. Not much to say here that I haven't said before. He's losing weight, doesn't want to eat, stays in bed most of the time….
Conspiracies abound
H's paranoia is increasing…he's been worried about any number of conspiracy plots and the latest one is about the "great culling," which postulates that pandemic diseases are just a way for "them" to get rid of undesirables. Of course, H sees himself in that category. He tells me tho', that he has a way out if he needs one (assisted suicide). I wish that he weren't so afraid; very sad.
Not just H
Even tho' it is happening to H, I hadn't really seen much information on HIV dementia and accelerated aging for folks on the meds for a long time. Now, there is this article in NYMag.com. These stories are so sad and yet oddly comforting for me as they give me some understanding of what is happening to my dear H.
Peace at home
One of my goals for this last year has been to have peace at home. For a long time, I have been filled with so much resentment and H with so much fear and frustration, that the "tone" at home was awful. I'm happy to say that it is peaceful now for the most part…me stopping drinking helped and also me working to reduce the poisonous resentment that I've held towards H. Yea, I can deal with the burden, but the resentment was just so corrosive. The key change for me was acceptance: H is like a (sick) child now and that isn't going to change, ever.
Expectations again
The father of a long-time friend is very ill with heart and kidney failure. The father's wife asked me, "What do I do? He's no longer fun to be with, he can't remember our history, what am I supposed to do? And I'm so angry at him."
"Love him and don't expect him to be the way he was. He can't be that for you anymore," I said. "That's what I've had to do with H…otherwise, I'll end up hating him and I don't want that."
As if this were so easy….
Tuesday, December 15, 2009
Quattro Tuesday
Tree up and decorated
Last year, we didn't have a Christmas tree. After two years of me putting it up a giant tree mostly by myself, I just wasn't going to do that much work again. And besides, its no fun to put up a tree by yourself, especially since I see the ornaments as one rendition of our history together and I miss sharing that with him.
So, H and I were talking about putting up a tree this year and I had to work and work to get him to understand that 1) I would like a tree this year, 2) it can't be a large one, and 3) I'm not going to do all the work myself again. Nope.
So, last weekend we put up and decorated a 4.5' artificial tree. Just big enough to hold all our "special ornaments" and yet small enough to finish quickly to make it fun. It was nice to have him there, decorating, as we reminisced as each special ornament came out. How it should be….
Viral load up and despondent
H had been on a holiday from his anti-viral medications since about March of this year. 3 months ago, his HIV viral load was effectively 0 and his T-cell counts were good. Results from last week showed that his viral load is now up to 330,000 and his T-cell counts are dropping.
Time to go back onto the meds, I think, and he's not happy about it at all as these meds in particular make him feel sick much of the time. His virologist will let us know in the next few days the results of a test (phenotype) to see which meds may still work against H's virus. The big risk is that the virus will be resistant to the new meds that had been working for H the last year; if that is the case, there is no other treatment for him and he will most certainly get sick and likely not pull out of it. And if the meds do work, he can look forward to feeling sick most of the time.
Oddly, I feel a bit relieved and I also feel a bit frightened and sad for him.
Now, what's for dinner?
As the chef in our house for the past decade or more, I've got my favorite recipes and new ones that I try out. Over time, H has ruled out whole food groups: pasta, curry, pizza, stir-fry, Mexican, eggs, etc. Now, I'm struggling to figure out what to make him for dinner and, at the same time, my resentment grows for his increasing fussiness.
The unbearable weight of responsibility
So, my manager is leaving the company and I've been approached by several folks, including my "big" bosses, telling me that I should apply for my manager's job. I've led groups like this one before, so I know what's involved. And this is a great opportunity any way you choose to slice it.
But the first thought in my head was, "I just don't have the energy for this as long as H is around. How can I focus on work when the situation with H just sucks the life out of me?" Sigh. I am so tired of being tired and distracted.
Last year, we didn't have a Christmas tree. After two years of me putting it up a giant tree mostly by myself, I just wasn't going to do that much work again. And besides, its no fun to put up a tree by yourself, especially since I see the ornaments as one rendition of our history together and I miss sharing that with him.
So, H and I were talking about putting up a tree this year and I had to work and work to get him to understand that 1) I would like a tree this year, 2) it can't be a large one, and 3) I'm not going to do all the work myself again. Nope.
So, last weekend we put up and decorated a 4.5' artificial tree. Just big enough to hold all our "special ornaments" and yet small enough to finish quickly to make it fun. It was nice to have him there, decorating, as we reminisced as each special ornament came out. How it should be….
Viral load up and despondent
H had been on a holiday from his anti-viral medications since about March of this year. 3 months ago, his HIV viral load was effectively 0 and his T-cell counts were good. Results from last week showed that his viral load is now up to 330,000 and his T-cell counts are dropping.
Time to go back onto the meds, I think, and he's not happy about it at all as these meds in particular make him feel sick much of the time. His virologist will let us know in the next few days the results of a test (phenotype) to see which meds may still work against H's virus. The big risk is that the virus will be resistant to the new meds that had been working for H the last year; if that is the case, there is no other treatment for him and he will most certainly get sick and likely not pull out of it. And if the meds do work, he can look forward to feeling sick most of the time.
Oddly, I feel a bit relieved and I also feel a bit frightened and sad for him.
Now, what's for dinner?
As the chef in our house for the past decade or more, I've got my favorite recipes and new ones that I try out. Over time, H has ruled out whole food groups: pasta, curry, pizza, stir-fry, Mexican, eggs, etc. Now, I'm struggling to figure out what to make him for dinner and, at the same time, my resentment grows for his increasing fussiness.
The unbearable weight of responsibility
So, my manager is leaving the company and I've been approached by several folks, including my "big" bosses, telling me that I should apply for my manager's job. I've led groups like this one before, so I know what's involved. And this is a great opportunity any way you choose to slice it.
But the first thought in my head was, "I just don't have the energy for this as long as H is around. How can I focus on work when the situation with H just sucks the life out of me?" Sigh. I am so tired of being tired and distracted.
Tuesday, December 01, 2009
Turkey snippets
Smokin' 'n' drinkin'
While I was in Europe last month, I decided to smoke and drink out on the town with my pals from work. I worried a bit about the drinking…if I had my first drink in 7+ months, would I be able to stop?...but all for naught. 'Twas a social thing only. During the day, no cravings; no cravings upon my return home. I could take or leave smoking on the road, but once I got home, I wanted to smoke more.
Down for a visit
Although I've only got one response from H's family to my status email, H will be heading South to visit many of them after Christmas. They are eager to see him and I'm glad that he wants to go. Also, gives me 2+ weeks of break, which I am grateful for.
All is calm
H is doing rather well physically right now. We'll know what his viral load is here in a few weeks. What's so odd is that he's stable right now and his spirits are good. In some ways, I don't know what to do with him when there isn't a health issue going. His dementia is still worsening tho'.
When I'm sick
Over the past several weeks, I've had two migraine headaches and also got a weird flu. H was good about this, as there was no way that I can keep up at home when I was that sick. He said, "Sheesh, even when you're sick, you don't get a break." I replied, "Yup, I know." And, to his credit, he asked me for nothing during my sick times.
Deteriorating in front of my eyes
One of H's sister lives in another state, not too far from his parents. Since this sister lives closest, she sees what is happening with his parents. Like most folks in their mid to late 70s, they have a myriad of health issues, but some dementia is beginning to creep in.
His sister said to me, "I can't believe it, I'm watching them deteriorate before my eyes…it's horrible (crying)." I told her that I understood as I'm watching H deteriorate as well. She asked me what she should do…I said, "love them and realize that you can only do so much to help them…you can't stop them aging. Most importantly, just be there for them."
While I was in Europe last month, I decided to smoke and drink out on the town with my pals from work. I worried a bit about the drinking…if I had my first drink in 7+ months, would I be able to stop?...but all for naught. 'Twas a social thing only. During the day, no cravings; no cravings upon my return home. I could take or leave smoking on the road, but once I got home, I wanted to smoke more.
Down for a visit
Although I've only got one response from H's family to my status email, H will be heading South to visit many of them after Christmas. They are eager to see him and I'm glad that he wants to go. Also, gives me 2+ weeks of break, which I am grateful for.
All is calm
H is doing rather well physically right now. We'll know what his viral load is here in a few weeks. What's so odd is that he's stable right now and his spirits are good. In some ways, I don't know what to do with him when there isn't a health issue going. His dementia is still worsening tho'.
When I'm sick
Over the past several weeks, I've had two migraine headaches and also got a weird flu. H was good about this, as there was no way that I can keep up at home when I was that sick. He said, "Sheesh, even when you're sick, you don't get a break." I replied, "Yup, I know." And, to his credit, he asked me for nothing during my sick times.
Deteriorating in front of my eyes
One of H's sister lives in another state, not too far from his parents. Since this sister lives closest, she sees what is happening with his parents. Like most folks in their mid to late 70s, they have a myriad of health issues, but some dementia is beginning to creep in.
His sister said to me, "I can't believe it, I'm watching them deteriorate before my eyes…it's horrible (crying)." I told her that I understood as I'm watching H deteriorate as well. She asked me what she should do…I said, "love them and realize that you can only do so much to help them…you can't stop them aging. Most importantly, just be there for them."
Wednesday, November 11, 2009
Family response
My prior post is the text of an email that I sent to H's family to give them a sense of where he is.
Of the 3 recipients (two sisters and parents), only one sister replied:
"...that is sad news, very sad indeed. Thanks for the update. I know some people who can help with H's caregiving…just let me know and I'll fwd their contact information."
Trouble is that a full-time (or even part-time) caregiver is waaay more than I can afford ($800 - $1,000/week) and that wasn't really the point of my email. (I do worry about that as H declines further that I won't be able to keep him at home…even tho' part of me would just like him to leave.)
Really, all I wanted to do was to give the family a sense of where H is. Interesting to me that I got only one response and that was to get some "hired help.
I was hoping to hear that they all will spend as much time with H as they can while they can.
Of the 3 recipients (two sisters and parents), only one sister replied:
"...that is sad news, very sad indeed. Thanks for the update. I know some people who can help with H's caregiving…just let me know and I'll fwd their contact information."
Trouble is that a full-time (or even part-time) caregiver is waaay more than I can afford ($800 - $1,000/week) and that wasn't really the point of my email. (I do worry about that as H declines further that I won't be able to keep him at home…even tho' part of me would just like him to leave.)
Really, all I wanted to do was to give the family a sense of where H is. Interesting to me that I got only one response and that was to get some "hired help.
I was hoping to hear that they all will spend as much time with H as they can while they can.
Thursday, November 05, 2009
Thought you should know
A few days ago, I sent an email to H's family to tell them about my worries and to give them some idea about what is going on.
Here's the text of that email (kinda long, apologies). In a future post, I'll give y'all a rundown of their reply.
Beloved family,
I hope that I have all your correct email addresses here….
I wanted to give you all a private update on how H is doing. Please don’t forward this email to H as I don’t want to have him worry unnecessarily or hurt his feelings.
Please don't worry, I'm not wanting to "put him somewhere" right now, nor is he having any acute health issues right now. And, I'm not trying to frighten you or request any action from you.
I'm telling you this because I know that we all love H and you need to know what is happening.
What I am seeing is a continuation and acceleration of his general physical and mental decline, especially compared to a year ago. Many of our long-time friends see this too and have told me their stories.
His HIV viral load has been down this year (in spite of now being off his anti-virals) and his T-cell count is normal for a man his age (highest that it's been in a decade or more). Usually, when his viral load is down, he does better physically and mentally, but not this time. He'll get another blood test next month.
His doctor has told me that they can control his virus, but his dementia will get worse. And it is:
-He can't operate the washing machine any more…he gets confused by the dial and what to do. We've had this washer for > 10 years now.
-He can't operate the over timer anymore…we've had this oven for almost 20 years.
-He will sit and mutter to himself for several minutes at a time, shaking…almost like an autistic kid.
-He can hardly make a sandwich or a bowl of cereal for himself anymore
-His short term memory is shot and he will ask me the same question 10 times a day
-He is having a harder and harder time keeping up with even a simple conversation or TV show.
-He is having much more trouble walking and balancing, even with his cane
-He can't take his parrot out and about anymore…he's too tired, too lame and afraid to leave the house
-And on and on…
Now, some of these things (and worse) have happened before, but what is so striking is the change in the past year. And that decline is accelerating. Even though he does have his lucid and cogent moments, he is becoming physically lamer and cognitively much slower. And, I don't know how else to describe it, but his personality is fading and his emotional range is shrinking.
Doctors tell me that he is in a decline, where we will lose him "inch by inch," maybe faster. The can't predict his death (besides, we've all heard those predictions many times), but they do say that he is heading towards "general disability," which means the inability to do anything. Much like what happens to Alzheimer's patients.
Based on what I'm seeing and what the doctors tell me, the reality of it is that H is not going to get any better than he is right now and he will most certainly continue to decline.
My recommendation to all of you is to find a way to spend as much time with H as you can within the next year or so.
Much love,
asm
Here's the text of that email (kinda long, apologies). In a future post, I'll give y'all a rundown of their reply.
Beloved family,
I hope that I have all your correct email addresses here….
I wanted to give you all a private update on how H is doing. Please don’t forward this email to H as I don’t want to have him worry unnecessarily or hurt his feelings.
Please don't worry, I'm not wanting to "put him somewhere" right now, nor is he having any acute health issues right now. And, I'm not trying to frighten you or request any action from you.
I'm telling you this because I know that we all love H and you need to know what is happening.
What I am seeing is a continuation and acceleration of his general physical and mental decline, especially compared to a year ago. Many of our long-time friends see this too and have told me their stories.
His HIV viral load has been down this year (in spite of now being off his anti-virals) and his T-cell count is normal for a man his age (highest that it's been in a decade or more). Usually, when his viral load is down, he does better physically and mentally, but not this time. He'll get another blood test next month.
His doctor has told me that they can control his virus, but his dementia will get worse. And it is:
-He can't operate the washing machine any more…he gets confused by the dial and what to do. We've had this washer for > 10 years now.
-He can't operate the over timer anymore…we've had this oven for almost 20 years.
-He will sit and mutter to himself for several minutes at a time, shaking…almost like an autistic kid.
-He can hardly make a sandwich or a bowl of cereal for himself anymore
-His short term memory is shot and he will ask me the same question 10 times a day
-He is having a harder and harder time keeping up with even a simple conversation or TV show.
-He is having much more trouble walking and balancing, even with his cane
-He can't take his parrot out and about anymore…he's too tired, too lame and afraid to leave the house
-And on and on…
Now, some of these things (and worse) have happened before, but what is so striking is the change in the past year. And that decline is accelerating. Even though he does have his lucid and cogent moments, he is becoming physically lamer and cognitively much slower. And, I don't know how else to describe it, but his personality is fading and his emotional range is shrinking.
Doctors tell me that he is in a decline, where we will lose him "inch by inch," maybe faster. The can't predict his death (besides, we've all heard those predictions many times), but they do say that he is heading towards "general disability," which means the inability to do anything. Much like what happens to Alzheimer's patients.
Based on what I'm seeing and what the doctors tell me, the reality of it is that H is not going to get any better than he is right now and he will most certainly continue to decline.
My recommendation to all of you is to find a way to spend as much time with H as you can within the next year or so.
Much love,
asm
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