We had a nurse come to the house today to evaluate H for home visits to help with his meds. It's always striking to have a cogent adult in the house and compare H to that. And I realize how lost H would be without my help with all the paperwork and questions. The first nursing visit will be later this week!
Someone asked me once how my birthday was, I said automatically, "Fine thanks…just another day with a hangover." Well, I've not had a hangover every day for a week or two and I'm realizing just how impaired I have been. Wow. My mind is working again and I'm getting stuff done at work. I have energy and my quick wit is returning. And I've lost 7 pounds!
Local sister is taking care of H's dinners for the next month or so while I'm at evening sessions. I've talked with her and all is set up. I felt elation, yes elation, when H asked me how it was going to work and I said, "We've talked and it's all set up, but you need to talk with sister to find out the particulars." How nice to pass the buck!
Monday, March 30, 2009
Tuesday, March 24, 2009
Lab results
H's viral load is now undectable...the first time in over a decade.
His T-cell count is 984, well within the normal range for a man his (our) age.
He still sleeps much of the time, tells me he feels crappy a lot, gets anxious when we run out of grocery items (like sugar), is in terrible pain from neuropathy, and has a hard time following or participating in a conversation or making a bowl of cereal.
Modern medicine has saved his life again, but for what? For this?
His T-cell count is 984, well within the normal range for a man his (our) age.
He still sleeps much of the time, tells me he feels crappy a lot, gets anxious when we run out of grocery items (like sugar), is in terrible pain from neuropathy, and has a hard time following or participating in a conversation or making a bowl of cereal.
Modern medicine has saved his life again, but for what? For this?
Monday, March 23, 2009
H's support
Over the past week or so, I've been consciously reducing the amount that I drink in prep for stopping entirely. Now, I know that I have to stop, but I'm hoping to manage down the withdrawal just a bit.
A week from tomorrow I start my evening sessions and no later than that day, I have to stop drinking.
So, I've cut down from 8+/day to 6 to 4, etc. over the past week. This has been surprisingly hard. And now I get cravings by 10am every day, earlier than my usual, "It's 3 o'clock…where's my beer?"
H has been helping me stay within my limits. We count out how many I get and whatever is extra gets hidden. And I don't start drinking until 5pm.
Now, I'm not keen on putting H in the role of policeman, but it's something he can do to help for the next week or two and he is more than willing to do so. And I both appreciate and need the support right now.
In fact, we discussed H going to AZ to visit his sister during this time. His sister suggested it in fact…wanting to be helpful and supportive.
I said, "No because I don't know that I trust myself to not drink and so I could really use your support.
H said, "I don't trust you to not drink either."
And while I've been whining here about H not being there for me, this is one area where he can be. And for that I am very grateful.
A week from tomorrow I start my evening sessions and no later than that day, I have to stop drinking.
So, I've cut down from 8+/day to 6 to 4, etc. over the past week. This has been surprisingly hard. And now I get cravings by 10am every day, earlier than my usual, "It's 3 o'clock…where's my beer?"
H has been helping me stay within my limits. We count out how many I get and whatever is extra gets hidden. And I don't start drinking until 5pm.
Now, I'm not keen on putting H in the role of policeman, but it's something he can do to help for the next week or two and he is more than willing to do so. And I both appreciate and need the support right now.
In fact, we discussed H going to AZ to visit his sister during this time. His sister suggested it in fact…wanting to be helpful and supportive.
I said, "No because I don't know that I trust myself to not drink and so I could really use your support.
H said, "I don't trust you to not drink either."
And while I've been whining here about H not being there for me, this is one area where he can be. And for that I am very grateful.
Friday, March 20, 2009
Confirmation
Got an assessment at a treatment center. "Yes, you're an alcoholic." Thought so. I'm starting outpatient treatment the week after next.
Getting some help, family stepping up. "I'm here for both of you," his sister who lives locally says. They will help with dinners while I'm gone.
"I'm sorry that my illness makes you drink, " H says.
I say, looking him square in the eye, "Thank you, but don't blame yourself. I have to take responsibility for this."
Talked with a nurse today about help with meds, which should start in the next week or so. "…you're losing him inch by inch, it's a chronic condition with a slow decline."
Getting some help, family stepping up. "I'm here for both of you," his sister who lives locally says. They will help with dinners while I'm gone.
"I'm sorry that my illness makes you drink, " H says.
I say, looking him square in the eye, "Thank you, but don't blame yourself. I have to take responsibility for this."
Talked with a nurse today about help with meds, which should start in the next week or so. "…you're losing him inch by inch, it's a chronic condition with a slow decline."
Thursday, March 19, 2009
Single dad
Well, it's just not the care duties, but it's the whole package of having to play "single Dad" for another grown man in the house. Very little happens without me personally doing it, cooking, picking up the house, bill paying, unravelling insurance issues, etc.
That's annoying enough after 10+ years of this.
But the real issue isn't the care, the chores, or the responsibility, but that I don't get my needs met by this person. And it won't be any different unless I do something about it. H is hardly capable of making food for himself, let alone being capable of meeting my needs.
However this resolves itself or not, I do believe that, after a bit of errrrr adjustment, that I'll be able to handle this all better when I'm sober.
There I wrote it, "when I'm sober."
And I also think, with apologies to Saint Augustine, "Lord make me sober, but not yet."
That's annoying enough after 10+ years of this.
But the real issue isn't the care, the chores, or the responsibility, but that I don't get my needs met by this person. And it won't be any different unless I do something about it. H is hardly capable of making food for himself, let alone being capable of meeting my needs.
However this resolves itself or not, I do believe that, after a bit of errrrr adjustment, that I'll be able to handle this all better when I'm sober.
There I wrote it, "when I'm sober."
And I also think, with apologies to Saint Augustine, "Lord make me sober, but not yet."
Monday, March 16, 2009
Monday dyad
Illusions
I've been encouraging H to do as much as he can for himself. This could be medication ordering & set up, calling about insurance snafus, or even just getting an eye exam.
It's helpful to me if he can do the tasks, but mostly I’m just playing a game with myself that he's not totally dependant on me. If he can do this or that, then I don't have to acknowledge the reality.
Sometimes, he can do the task…but more often than not, he gets frustrated and whacked out. Then I have to jump in, call him down, and finish the task myself.
Might be better if I just do the tasks myself, me thinks.
Give up my dreams
We were watching some TV show and there was a Bentley on it…a nice new convertible. (He's always been keen on fancy cars, especially Bentleys.)
H sighs and asks me, "Should I give up on my dreams?"
"What do you mean?" I ask.
H says, "I just don't know if I should give up on my dreams…."
I say, "No, because anything can happen. I could die of a heart attack tomorrow and you could buy that Bentley. You just never know."
"I'd really like a red one," he says.
"Yes, you'd look good in a red one," I reply.
I've been encouraging H to do as much as he can for himself. This could be medication ordering & set up, calling about insurance snafus, or even just getting an eye exam.
It's helpful to me if he can do the tasks, but mostly I’m just playing a game with myself that he's not totally dependant on me. If he can do this or that, then I don't have to acknowledge the reality.
Sometimes, he can do the task…but more often than not, he gets frustrated and whacked out. Then I have to jump in, call him down, and finish the task myself.
Might be better if I just do the tasks myself, me thinks.
Give up my dreams
We were watching some TV show and there was a Bentley on it…a nice new convertible. (He's always been keen on fancy cars, especially Bentleys.)
H sighs and asks me, "Should I give up on my dreams?"
"What do you mean?" I ask.
H says, "I just don't know if I should give up on my dreams…."
I say, "No, because anything can happen. I could die of a heart attack tomorrow and you could buy that Bentley. You just never know."
"I'd really like a red one," he says.
"Yes, you'd look good in a red one," I reply.
Tuesday, March 10, 2009
Gearing up to dry out
For many years now, I've been drinking quite a bit. At first, it was for fun and now, well, let's just say it's a requirement.
When H first got sick, 12 years or so ago, I started drinking more and with increasing regularity and I worked my way up to a 6 pack a day. Recently, I've blown through that mark and drink way more than I mean to, even tho' I'm trying to limit it. Sigh.
I remember talking with a therapist about my drinking. At that time, H was very, very ill. The therapist said, "Well, your drinking is understandable, but if it continues for longer than 2 or 3 years after his death, then that is a concern." That conversation was 9 years ago now.
The cold reality is that I need to stop drinking before I slip off the cliff. And the other cold reality is that I won't be able to medicate myself when I'm at home and I hate being home.
I'm sad that drinking has become what smoking was: something I used to enjoy, but now I can't control anymore and I have to stop. While I can have a cigarette from time to time, I know better than to have any in the house as I'll just smoke 'em all, quickly and without realizing it.
Now, I'm not keen on AA, and I'm already in therapy, but I'm going to my Dr. later this week to see if I can't take something to help with withdrawal. Getting Nicotine replacement was the only way I was able to stop smoking. I hope there is something comparable for drinking.
When H first got sick, 12 years or so ago, I started drinking more and with increasing regularity and I worked my way up to a 6 pack a day. Recently, I've blown through that mark and drink way more than I mean to, even tho' I'm trying to limit it. Sigh.
I remember talking with a therapist about my drinking. At that time, H was very, very ill. The therapist said, "Well, your drinking is understandable, but if it continues for longer than 2 or 3 years after his death, then that is a concern." That conversation was 9 years ago now.
The cold reality is that I need to stop drinking before I slip off the cliff. And the other cold reality is that I won't be able to medicate myself when I'm at home and I hate being home.
I'm sad that drinking has become what smoking was: something I used to enjoy, but now I can't control anymore and I have to stop. While I can have a cigarette from time to time, I know better than to have any in the house as I'll just smoke 'em all, quickly and without realizing it.
Now, I'm not keen on AA, and I'm already in therapy, but I'm going to my Dr. later this week to see if I can't take something to help with withdrawal. Getting Nicotine replacement was the only way I was able to stop smoking. I hope there is something comparable for drinking.
Wednesday, March 04, 2009
Family time
Last weekend was a big b-day bash for a family member who turned 50 (no, not me…yet!).
It was frustrating for H because his sister and her family came into town for the event and he didn't get to spend as much time with them as he would have liked.
I had a wonderful time with them all and my worries about getting grief were happily unfounded. What was even better was that we only had a moment to talk about H because there was so much going on. Nice to not have the focus on him so much.
What was most striking tho' was when I told his sister, "You know, (sister's name), I love H and I'm doing the best I can. I know how unhappy he is."
She starts getting teary-eyed. Me too.
Whatever tension was in the air due to the placement fracas last Fall vanished.
She said, "I wish I could fix his attitude. He's so angry and negative. He's pissed at you, mom & dad, me, everyone, the world."
"Me too," I said. "But who can blame him? He's not even 50 yet, but he's losing his mind, his health, everything. And mostly, (sister's endearing nick-name), he's just tired, very tired."
It was frustrating for H because his sister and her family came into town for the event and he didn't get to spend as much time with them as he would have liked.
I had a wonderful time with them all and my worries about getting grief were happily unfounded. What was even better was that we only had a moment to talk about H because there was so much going on. Nice to not have the focus on him so much.
What was most striking tho' was when I told his sister, "You know, (sister's name), I love H and I'm doing the best I can. I know how unhappy he is."
She starts getting teary-eyed. Me too.
Whatever tension was in the air due to the placement fracas last Fall vanished.
She said, "I wish I could fix his attitude. He's so angry and negative. He's pissed at you, mom & dad, me, everyone, the world."
"Me too," I said. "But who can blame him? He's not even 50 yet, but he's losing his mind, his health, everything. And mostly, (sister's endearing nick-name), he's just tired, very tired."
Monday, March 02, 2009
Thank you
I wanted to say thank you to all of you folks out there who read the blog.
It's very helpful to know that someone is out there listening.
And I'm grateful that you spend time reading my entries, doleful tho' they often are, and supporting me in your thoughts, prayers, and comments.
It's very helpful to know that someone is out there listening.
And I'm grateful that you spend time reading my entries, doleful tho' they often are, and supporting me in your thoughts, prayers, and comments.
Why do I do this?
Twice a day, H takes his many, many meds. They make him very, very sick and so he dreads 10am and 10pm. The other morning, he was grumbling about taking his meds and exasperated.
"Why do I do this? Why do I take these?" he asks me as he looks at a small Dixie cup filled with pills. He takes two Dixie cups filled with pills twice a day.
"Because they keep you alive."
He says, "Yea, but I feel so bad so much. I should stop taking them."
"You've done that a couple of times, you know…"
"I have?" he asks, looking very puzzled.
"Yea, at least 3 times you stopped taking the meds because they made you so sick. You called it 'pill rebellion.' "
"Then, you got sick, very sick within a week or so of stopping the meds…with what you described as the worst flu you've ever had. The virus came roaring back. And you got scared - got hospitalized one time - and started taking them again."
"I did?" he asks. "I don't remember any of that."
"Why do I do this? Why do I take these?" he asks me as he looks at a small Dixie cup filled with pills. He takes two Dixie cups filled with pills twice a day.
"Because they keep you alive."
He says, "Yea, but I feel so bad so much. I should stop taking them."
"You've done that a couple of times, you know…"
"I have?" he asks, looking very puzzled.
"Yea, at least 3 times you stopped taking the meds because they made you so sick. You called it 'pill rebellion.' "
"Then, you got sick, very sick within a week or so of stopping the meds…with what you described as the worst flu you've ever had. The virus came roaring back. And you got scared - got hospitalized one time - and started taking them again."
"I did?" he asks. "I don't remember any of that."
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