H has been off his anti-HIV meds for over a month now. He hasn't called to find out if his viral load has gone up or not. He says, "I just don't want to think about it or know."
Conversations at our house are very quiet…I talk but I rarely get a response. H is quiet a lot these days, part of it is that he's not been feeling well and I think that part of it is that he's not home very much.
My therapist talks about how people feel lost when a spouse dies. Nice to have a name for what I've been feeling.
Went out to dinner with folks from work and some work-guests from out of town. Everyone has something interesting to talk about…books, travel, hobbies. I come home and it's, "I'm not feeling well, I need to go to bed."
Work consumes most of my time and thoughts right now. It's good fun tho'. Will get a break in August and I can use the rest. Not certain how the time at home will be for me as I'll be alone whether he's up or not.
Wednesday, June 24, 2009
Thursday, June 18, 2009
The thing about the hat
H and I went to our friend C's b-day party a week or so ago. She's 86 now.
While we were there, H told me that he was feeling bad vibes from the crowd and that C had likely told them bad things about him. I told H, "Well, if there's an issue, give them the responsibility to bring it up…otherwise, let's enjoy ourselves."
Later, H talked about how the bad vibes at the party must be because he wore a hat when outside during the party. Now, it was a very stylin' hat, a modern take on a nice fedora. He said, "They're from a different era and must not have liked me wearing my hat."
For the next 5 days, C called us several times, but H refused to answer the phone when she called and he didn't want me to answer it either. And he went on and on about how C is just cranky and wants to chew him out about wearing the hat. I tried to talk him down, telling him that "you don't know that's the issue…." But of course, that was the issue for him.
"I just know she wants to chew me out about wearing the hat," he says.
Finally, he decided to call C to "spoil her little game."
As it turns out, C wanted to thank us for coming to the party and to tell him how much she enjoyed the flowers that we sent to her home. No mention of the hat.
While we were there, H told me that he was feeling bad vibes from the crowd and that C had likely told them bad things about him. I told H, "Well, if there's an issue, give them the responsibility to bring it up…otherwise, let's enjoy ourselves."
Later, H talked about how the bad vibes at the party must be because he wore a hat when outside during the party. Now, it was a very stylin' hat, a modern take on a nice fedora. He said, "They're from a different era and must not have liked me wearing my hat."
For the next 5 days, C called us several times, but H refused to answer the phone when she called and he didn't want me to answer it either. And he went on and on about how C is just cranky and wants to chew him out about wearing the hat. I tried to talk him down, telling him that "you don't know that's the issue…." But of course, that was the issue for him.
"I just know she wants to chew me out about wearing the hat," he says.
Finally, he decided to call C to "spoil her little game."
As it turns out, C wanted to thank us for coming to the party and to tell him how much she enjoyed the flowers that we sent to her home. No mention of the hat.
Saturday, June 13, 2009
How to wash
Since i've been so busy recently at work and H is on a break from his anti-viral meds that make him feel so ill, he's been trying to help more around the house.
I really appreciate all the help I can get and give him losts of positive reinforcement for any help at all, even unloading the dishwasher and bringing up the empty garbage cans from the street.
Last night when I came home from work and the gym, he was starting to do laundry. He asked me how I do it.
"What do you mean?" I asked.
"How do you use the dial? Don't you start at the top?"
Our washer has 3 cycles (heavy, light, and delicate) on a big dial. I showed him each of the cycles and told him what each was for.
I told him about the dial for about 5 minutes trying this tack and that. You "don't always have to start at the top of the dial," but that you pick the cycle based on the clothes and how dirty they are. And sometimes, where you start is not at the top of the dial. It just depends....
He was very puzzled and more than a bit agitated at this point. Clearly, he was frustrated.
I finally said, "For most things you can just start at the top of the dial."
"Oh, OK, now I get it," he says smiling. "I've already washed one load, you know."
This is a man with two college degrees and was once one of the smartest people I know. Now, laundry seems daunting.
He has noticed that he hasn't rebounded (energy and thinking) like he has in the past when he took an anti-viral med holiday. I agree with his self-assessment. He asked me this morning if I was worried about this.
"No honey, I'm not. Give yourself some time off the meds. You know that you have good days and not so good days. You'll be just fine."
"Good, I'm glad to hear that," he says smiling.
But I know he won't. And I'm scared and sad about it.
I really appreciate all the help I can get and give him losts of positive reinforcement for any help at all, even unloading the dishwasher and bringing up the empty garbage cans from the street.
Last night when I came home from work and the gym, he was starting to do laundry. He asked me how I do it.
"What do you mean?" I asked.
"How do you use the dial? Don't you start at the top?"
Our washer has 3 cycles (heavy, light, and delicate) on a big dial. I showed him each of the cycles and told him what each was for.
I told him about the dial for about 5 minutes trying this tack and that. You "don't always have to start at the top of the dial," but that you pick the cycle based on the clothes and how dirty they are. And sometimes, where you start is not at the top of the dial. It just depends....
He was very puzzled and more than a bit agitated at this point. Clearly, he was frustrated.
I finally said, "For most things you can just start at the top of the dial."
"Oh, OK, now I get it," he says smiling. "I've already washed one load, you know."
This is a man with two college degrees and was once one of the smartest people I know. Now, laundry seems daunting.
He has noticed that he hasn't rebounded (energy and thinking) like he has in the past when he took an anti-viral med holiday. I agree with his self-assessment. He asked me this morning if I was worried about this.
"No honey, I'm not. Give yourself some time off the meds. You know that you have good days and not so good days. You'll be just fine."
"Good, I'm glad to hear that," he says smiling.
But I know he won't. And I'm scared and sad about it.
Monday, June 08, 2009
Peas for dinner
About 12 years ago, H was recovering at a local facility that has a specialty in AIDS care after a bout of PCP pneumonia that nearly killed him. At that point, he had been in the ICU for almost a month and needed skilled nursing care to get him back on his feet. This is the same place that I was working to place him at the end of 2007. Lovely, kind people and state-of-the-care.
I had wheeled H in a wheelchair down to the dining room as he wasn't yet able to walk due to shaking and weakness. We lined up for food and I got his plate from the servers. Tonight was steak, mashed potatoes, and peas.
A handful of folks were in the dining room, mostly residents and a few family members. All the residents were either in wheelchairs or using a walker/cane. Only low talking, serious tones.
At the table, I'm cutting his meat because he isn't coordinated enough. But he bristled at being fed. He tries taking a drink, but is shaking and spills the water .
He tries to stab a pea with his fork, but misses and the pea skids off the table. I suggest a spoon and reach for it. "No! No! I can do it," he says.
He loads the soup spoon up with peas and moves up from the plate. OK so far, but then his hand starts to shake a little bit…a few peas drop to the table.
The higher he lifts the spoon, the more he's shaking and peas go flying. One hits me in the forehead and bounces into my water glass. I start laughing, then H starts to laugh and the spoon shakes more.
Now several peas are launched across the dining room. One splats on the nearby window. One flies towards the serving line and many land bounce across our table. At this point, I'm nearly in tears laughing…H begins to laugh more. And more peas fly.
One flies across the dining room, bounces on a table, and hits a guy in a wheelchair in the side of his face and drops into a visitor's plate.
At first he flinches like if a bug hits you, then he realizes it’s a pea, looks at us and starts to laugh heartily. Then others at his table laugh. Later as they were leaving, one of them comes over and says, "Thanks for making Joe laugh…we don't see him laugh enough anymore."
I had wheeled H in a wheelchair down to the dining room as he wasn't yet able to walk due to shaking and weakness. We lined up for food and I got his plate from the servers. Tonight was steak, mashed potatoes, and peas.
A handful of folks were in the dining room, mostly residents and a few family members. All the residents were either in wheelchairs or using a walker/cane. Only low talking, serious tones.
At the table, I'm cutting his meat because he isn't coordinated enough. But he bristled at being fed. He tries taking a drink, but is shaking and spills the water .
He tries to stab a pea with his fork, but misses and the pea skids off the table. I suggest a spoon and reach for it. "No! No! I can do it," he says.
He loads the soup spoon up with peas and moves up from the plate. OK so far, but then his hand starts to shake a little bit…a few peas drop to the table.
The higher he lifts the spoon, the more he's shaking and peas go flying. One hits me in the forehead and bounces into my water glass. I start laughing, then H starts to laugh and the spoon shakes more.
Now several peas are launched across the dining room. One splats on the nearby window. One flies towards the serving line and many land bounce across our table. At this point, I'm nearly in tears laughing…H begins to laugh more. And more peas fly.
One flies across the dining room, bounces on a table, and hits a guy in a wheelchair in the side of his face and drops into a visitor's plate.
At first he flinches like if a bug hits you, then he realizes it’s a pea, looks at us and starts to laugh heartily. Then others at his table laugh. Later as they were leaving, one of them comes over and says, "Thanks for making Joe laugh…we don't see him laugh enough anymore."
Wednesday, June 03, 2009
When it is time
When we had an old cat who was quite sick, the vet told us that he would die pretty soon, but that he wasn't in pain and so we should take him home and enjoy him while we can. "He'll let you know when it is time," the vet said.
So, we took our old kitty home and just spent time with him like we always did: treats, cuddling, and just sitting with him on the couch, petting. The old cat wasn't interested in playing with his toys, the other cats, or with us, but he wanted to hang around us a lot.
And, after awhile, it was time, but we had a few weeks more together where we enjoyed one another's company.
Of course, I think about this now that H is going off his anti-viral meds again, just as he has several times before…each time being a bad trip for all concerned.
In the past, when he's gone off his meds, H has been much more functional than he is now…we could by and large have a normal time together, at least for a month or so until the virus flared up again and he went into the hospital or couldn't figure out how to use his cell phone.
I need to manage my expectations better. I keep thinking that he'll be able to do stuff with me once he's stopped taking the meds that make him sickest. But reality intrudes. And I keep wanting him to be able to do things, not run a marathon, just normal things.
H doesn't want to play or run around, of course, he just wants to hang out and be with me. And right now, I find that rather painful for many reasons, not the least of which it brings up much fear that I'll have to descend into the depths of pain and grief yet again.
So, we took our old kitty home and just spent time with him like we always did: treats, cuddling, and just sitting with him on the couch, petting. The old cat wasn't interested in playing with his toys, the other cats, or with us, but he wanted to hang around us a lot.
And, after awhile, it was time, but we had a few weeks more together where we enjoyed one another's company.
Of course, I think about this now that H is going off his anti-viral meds again, just as he has several times before…each time being a bad trip for all concerned.
In the past, when he's gone off his meds, H has been much more functional than he is now…we could by and large have a normal time together, at least for a month or so until the virus flared up again and he went into the hospital or couldn't figure out how to use his cell phone.
I need to manage my expectations better. I keep thinking that he'll be able to do stuff with me once he's stopped taking the meds that make him sickest. But reality intrudes. And I keep wanting him to be able to do things, not run a marathon, just normal things.
H doesn't want to play or run around, of course, he just wants to hang out and be with me. And right now, I find that rather painful for many reasons, not the least of which it brings up much fear that I'll have to descend into the depths of pain and grief yet again.
Monday, June 01, 2009
Brains & bunnies
H says to me in the car on the way to a local park, "I can really tell that my brain is not what it used to be. "
"How so honey?" I know the answer, but am wanting to encourage him to talk.
He says, "I can't remember hardly anything anymore and I keep having to re-learn how to use programs on the computer. And I've had to learn them again and again."
"That must be very frustrating," I say. What else can I say?
"And I can tell what's from the dementia and what's from the stroke and the epilepsy and what's from the meds."
I nod and say, "That's a lot of stuff, isn't it? Honey, you have gotten more than your share. And I'm sorry for that."
"Yea, me too. I thought it would get better without the (anti-viral) meds, but it isn't."
I say, "Give it some time, honey," not believing what I'm saying.
When we get to the park, he sees a bunny and goes on about it for quite some time. "Oh, look a bunny…." He's standing there pointing his cane at it, bending down and talking loudly to it. People looking at him being so excited and smiling kindly like they do for a little kid. I find it challenging to stand there.
We walked a bit in the gardens, but it became very clear that he was struggling just to walk around on level ground. I'm learning to be more patient and go slowly with him, which is hard as my gut just wants to run away.
And later on the way home, he says, laughing, "It just made my day to see the little bunny. I love rabbits, you know, so soft and furry and kind."
"How so honey?" I know the answer, but am wanting to encourage him to talk.
He says, "I can't remember hardly anything anymore and I keep having to re-learn how to use programs on the computer. And I've had to learn them again and again."
"That must be very frustrating," I say. What else can I say?
"And I can tell what's from the dementia and what's from the stroke and the epilepsy and what's from the meds."
I nod and say, "That's a lot of stuff, isn't it? Honey, you have gotten more than your share. And I'm sorry for that."
"Yea, me too. I thought it would get better without the (anti-viral) meds, but it isn't."
I say, "Give it some time, honey," not believing what I'm saying.
When we get to the park, he sees a bunny and goes on about it for quite some time. "Oh, look a bunny…." He's standing there pointing his cane at it, bending down and talking loudly to it. People looking at him being so excited and smiling kindly like they do for a little kid. I find it challenging to stand there.
We walked a bit in the gardens, but it became very clear that he was struggling just to walk around on level ground. I'm learning to be more patient and go slowly with him, which is hard as my gut just wants to run away.
And later on the way home, he says, laughing, "It just made my day to see the little bunny. I love rabbits, you know, so soft and furry and kind."
Wednesday, May 27, 2009
Boundaries, an invitation, and a holiday
One of my struggles has been how to deal with the reality that I no longer wish to have a romantic relationship with H, yet we continue to live together in our home of 24 years. For me, the romantic part of our life together is long over and I just don't see my feelings changing, although I'm trying to keep an open mind. Needless to say, H has been in denial about this for years now. But, in all fairness, I haven't been consistent as I've been racked with guilt and shame about how my feelings have changed for him and about us...and I have wavered.
So, now, I am being consistent. And while he may pout, throw a tantrum (like the kid who wants ice cream before dinner, but mom says no), or try the masterful guilting that only he can do…I hold firm and am loving and kind with him. Oddly enough, I feel much better being around the house and, for the first time in years, I’m feeling more comfortable in my own skin. My hope is that he, like me, will get to acceptance on this issue so we can enjoy whatever time we have left together and in whatever context we have it.
Setting firm, unyielding boundaries is key, but also it is important for me to extend a loving invitation to H: he's welcome to stay with me and I will be there for him, whatever happens. I've been consistent over the years with him on this point: I'm not abandoning him (tho' he may feel that way), I love him, and I will continue to care for him, regardless of how our relationship shakes out.
H is taking a holiday from his anti-viral meds for the Summer. He talked with his virologist about how sick the meds were making him feel and he wants to stop for awhile and "have a life this Summer." Now, this is not without any number of risks, but Dr. says it is better for H to stop taking them entirely than not taking them consistently due to the risk of viral resistance. Having said that, there still is a risk that that he may get sick after a month or two off or that the meds won't be effective anymore if he starts them up again.
I told H that I support his decision to take a holiday. I can see how bad his quality of life is, but I also reminded him about what has happened in the past when he took a med holiday. It's important to me that he knows I support him and that I will be there for him and it's also important that I tell him the history.
I didn't tell him this, but I'm very concerned about him taking a holiday as I've seen what happened before, but part of me hopes that he can have a few months where we can enjoy one another again. And, another part of me just wishes that this means the end of his long, tortuous road of this horrible disease.
So, now, I am being consistent. And while he may pout, throw a tantrum (like the kid who wants ice cream before dinner, but mom says no), or try the masterful guilting that only he can do…I hold firm and am loving and kind with him. Oddly enough, I feel much better being around the house and, for the first time in years, I’m feeling more comfortable in my own skin. My hope is that he, like me, will get to acceptance on this issue so we can enjoy whatever time we have left together and in whatever context we have it.
Setting firm, unyielding boundaries is key, but also it is important for me to extend a loving invitation to H: he's welcome to stay with me and I will be there for him, whatever happens. I've been consistent over the years with him on this point: I'm not abandoning him (tho' he may feel that way), I love him, and I will continue to care for him, regardless of how our relationship shakes out.
H is taking a holiday from his anti-viral meds for the Summer. He talked with his virologist about how sick the meds were making him feel and he wants to stop for awhile and "have a life this Summer." Now, this is not without any number of risks, but Dr. says it is better for H to stop taking them entirely than not taking them consistently due to the risk of viral resistance. Having said that, there still is a risk that that he may get sick after a month or two off or that the meds won't be effective anymore if he starts them up again.
I told H that I support his decision to take a holiday. I can see how bad his quality of life is, but I also reminded him about what has happened in the past when he took a med holiday. It's important to me that he knows I support him and that I will be there for him and it's also important that I tell him the history.
I didn't tell him this, but I'm very concerned about him taking a holiday as I've seen what happened before, but part of me hopes that he can have a few months where we can enjoy one another again. And, another part of me just wishes that this means the end of his long, tortuous road of this horrible disease.
Monday, May 18, 2009
Life and presence
Get a life
H has been struggling with side effects from his many meds: gaining weight, sleeping a lot, and most notably, just feeling like-he-has-the-flu sick. The latter is from his antiviral meds. H wants to stop taking the antiviral meds so that he can "have a life" this Summer. In the past when he's stopped his meds, he'll feel great for a month or so and then get very ill; been through that before and would prefer not to repeat.
In some ways, I don't like it when he's feeling better. His demands on me increase…he feels better so he starts more projects, but he rarely finishes them or can finish them anymore. And when he's up and about, I should just enjoy him while he's here, but I struggle with that too: I have all those fond feelings for him that I feel very conflicted about because I've been up and down too many times before.
And when he's feeling better, his expectations rise: he wants to do stuff with me, hang out with me…normal stuff really. But I just see it as work….seems like all I do is work these days. Work at work, work at home…little down time right now. And, to be honest, it is work to be around H for me now that I'm more present.
Being present
One of the side effects of (some would say the reason for) my drinking was that I was not present when I was at home. Heh, hard to be present with a minimum of a 6 pack a day.
Now, without drinking, I can be present and I find that a challenge. I can deal with the notion that he's sick and afraid and feel compassion, I can deal with his dementia and be patient and try to understand, but what I can't deal with is the thought that this will drag out for (many more) years…knowing that I'll not (ever) have a partner that meets my needs.
And yet I struggle to get those needs met now due to feelings of guilt and shame as I'm "leaving" my partner. Very strange, but that's how I feel. As much as I want a partner, or even just some fun, the block is there and much of it has to do with the thought of lying to him or hurting his feelings if he found out.
H has been struggling with side effects from his many meds: gaining weight, sleeping a lot, and most notably, just feeling like-he-has-the-flu sick. The latter is from his antiviral meds. H wants to stop taking the antiviral meds so that he can "have a life" this Summer. In the past when he's stopped his meds, he'll feel great for a month or so and then get very ill; been through that before and would prefer not to repeat.
In some ways, I don't like it when he's feeling better. His demands on me increase…he feels better so he starts more projects, but he rarely finishes them or can finish them anymore. And when he's up and about, I should just enjoy him while he's here, but I struggle with that too: I have all those fond feelings for him that I feel very conflicted about because I've been up and down too many times before.
And when he's feeling better, his expectations rise: he wants to do stuff with me, hang out with me…normal stuff really. But I just see it as work….seems like all I do is work these days. Work at work, work at home…little down time right now. And, to be honest, it is work to be around H for me now that I'm more present.
Being present
One of the side effects of (some would say the reason for) my drinking was that I was not present when I was at home. Heh, hard to be present with a minimum of a 6 pack a day.
Now, without drinking, I can be present and I find that a challenge. I can deal with the notion that he's sick and afraid and feel compassion, I can deal with his dementia and be patient and try to understand, but what I can't deal with is the thought that this will drag out for (many more) years…knowing that I'll not (ever) have a partner that meets my needs.
And yet I struggle to get those needs met now due to feelings of guilt and shame as I'm "leaving" my partner. Very strange, but that's how I feel. As much as I want a partner, or even just some fun, the block is there and much of it has to do with the thought of lying to him or hurting his feelings if he found out.
Friday, May 08, 2009
Random snippets
Treatment burnout...
Well, I've spent so much time on recovery stuff recently that I'm just burned out on it. Not that I'll stop attending my sessions and all that, but sheesh I'm tired of hearing about drinking or not drinking. The counselor in my treatment program is having fits with me about this as it challenges much of the AA a priori dogma.
Happily, I don’t have any cravings and I rarely think about drinking…well, unless I'm in a meeting of recovering alcoholics. Question under consideration: I know that AA is tremendously helpful to many, but given that I don't struggle with not drinking …how much of this do I really have to do to keep myself sober?
Don't go to that meeting!
H is worried that I'm doing too much right now, yet he can't see that he is a big part of my overload. Work is crazy busy and he's worried that somehow I'll run into someone at my once a week treatment meeting that is from my large company and that "it won't be good for your career." He also says, "You need to focus on work and yourself, you don't have the capacity to go to a meeting." Reality check, please.
It's really more about him not understanding the facets that I juggle constantly: it's work, work, work at the salt mines, then home to do more work (make dinner, listen to his old angry stories, take care of the pets), my self care stuff (including the gym & therapist), and oh that pesky spiritual path thing. I know I need a vacation, but that won't happen until August. So, yea, I need to do a bunch of self-care stuff and I do it wholeheartedly without guilt.
Just go back to bed, would ya?
No surprise, but H doesn't have all that many good days these days. But after a slew of bad weeks, he's up and about a lot more right now. So, he's up early with me, sleeps during the day, and is up when I get home. First time in literally years and, of course, I've been fancying myself a single man, so I have much dissonance about this. But, I'm not PO'd at him since I've stopped drinking and I am grateful for that.
He "just wants to be with me." I appreciate the sentiment, but all I hear at this point is neediness. I don't do well with this as he's been so bloody needy for so very, very long. But, when he's up and about and trying to be all chipper, I mostly just want him to go back to bed. Now, I don't say that, of course, but I think it and I also think to myself, "How many more years do I have to babysit?"
Well, I've spent so much time on recovery stuff recently that I'm just burned out on it. Not that I'll stop attending my sessions and all that, but sheesh I'm tired of hearing about drinking or not drinking. The counselor in my treatment program is having fits with me about this as it challenges much of the AA a priori dogma.
Happily, I don’t have any cravings and I rarely think about drinking…well, unless I'm in a meeting of recovering alcoholics. Question under consideration: I know that AA is tremendously helpful to many, but given that I don't struggle with not drinking …how much of this do I really have to do to keep myself sober?
Don't go to that meeting!
H is worried that I'm doing too much right now, yet he can't see that he is a big part of my overload. Work is crazy busy and he's worried that somehow I'll run into someone at my once a week treatment meeting that is from my large company and that "it won't be good for your career." He also says, "You need to focus on work and yourself, you don't have the capacity to go to a meeting
It's really more about him not understanding the facets that I juggle constantly: it's work, work, work at the salt mines, then home to do more work (make dinner, listen to his old angry stories, take care of the pets), my self care stuff (including the gym & therapist), and oh that pesky spiritual path thing. I know I need a vacation, but that won't happen until August. So, yea, I need to do a bunch of self-care stuff and I do it wholeheartedly without guilt.
Just go back to bed, would ya?
No surprise, but H doesn't have all that many good days these days. But after a slew of bad weeks, he's up and about a lot more right now. So, he's up early with me, sleeps during the day, and is up when I get home. First time in literally years and, of course, I've been fancying myself a single man, so I have much dissonance about this. But, I'm not PO'd at him since I've stopped drinking and I am grateful for that.
He "just wants to be with me." I appreciate the sentiment, but all I hear at this point is neediness. I don't do well with this as he's been so bloody needy for so very, very long. But, when he's up and about and trying to be all chipper, I mostly just want him to go back to bed. Now, I don't say that, of course, but I think it and I also think to myself, "How many more years do I have to babysit?"
Tuesday, April 28, 2009
So many appointments
Finished my intensive evening treatment classes and now I'm down to one evening class, an AA meeting, a psychotherapy appointment, and a massage therapy appointment weekly. So, that's 4 - 5 appointments a week…a lot I guess, but worth it.
H says to me, "Wow, so many appointments…I thought you were done with treatment."
"Well, I want to make certain I don't drink anymore and I was already going to the therapist and massage," I said. The reality of it is that I'm just taking care of myself, wanting to stay sober, and trying to figure out what my life looks like. Yup, I need the care.
"I just don't think you need to go to treatment anymore...you never drank that much," he said. "I just don't know why you're seeing a therapist...you've seen him for years already and it isn't helping our relationship."
By now, I've learned to not defend my choices or my actions. It doesn’t matter. He doesn't need to agree or disagree or approve anything that I'm doing. In this case, being silent is the high road. But, he does pout about it.
I feel a transformation underway…for the first time in a long time, I'm focused on making my life better for me. I think that H can see me changing…certainly my personality has changed since I stopped drinking and I feel peaceful…but he's afraid of that change as much he's wanted it for many years. And he's not in any position to change himself at this point…his life is continuing to shrink and he's making it worse by not accepting where he is or we are.
He keeps wanting me to be at home (all the bloody time) and, happily, these appointments give me a reason to not be while also helping myself.
H says to me, "Wow, so many appointments…I thought you were done with treatment."
"Well, I want to make certain I don't drink anymore and I was already going to the therapist and massage," I said. The reality of it is that I'm just taking care of myself, wanting to stay sober, and trying to figure out what my life looks like. Yup, I need the care.
"I just don't think you need to go to treatment anymore...you never drank that much," he said. "I just don't know why you're seeing a therapist...you've seen him for years already and it isn't helping our relationship."
By now, I've learned to not defend my choices or my actions. It doesn’t matter. He doesn't need to agree or disagree or approve anything that I'm doing. In this case, being silent is the high road. But, he does pout about it.
I feel a transformation underway…for the first time in a long time, I'm focused on making my life better for me. I think that H can see me changing…certainly my personality has changed since I stopped drinking and I feel peaceful…but he's afraid of that change as much he's wanted it for many years. And he's not in any position to change himself at this point…his life is continuing to shrink and he's making it worse by not accepting where he is or we are.
He keeps wanting me to be at home (all the bloody time) and, happily, these appointments give me a reason to not be while also helping myself.
Monday, April 20, 2009
Dementially yours
As my head clears up, I'm really noticing how bleak my time with H is…especially on the weekends. And because of my distress at seeing how empty and odd he is/we are, I drank at home to numb out.
While H wants to spend as much time with me as he can, I find that I want to spend as little time with him as I can get away with. I'm in a weekday evening "class" at my local treatment center and, even tho' the classes are a bit dry (sic) at times, they at least get me out of the house in the evenings and talking with other adults. Even AA meetings, in all their bizarreness, are a relief for this reason.
Our time together is reduced to watching TV, smoking cigarettes (started that again, but will stop again), and eating dinner. I'm just bored with him and as we continue this long, slow declining dance together, there just isn't much of him left there. And I feel great distress from this.
Our conversations are pretty much me talking about work and my projects/hobbies and him talking about how he's still angry at his dad because "he never would admit that I'm right," his continual frustration and angst about being ill and having to take meds that make him sick, and reliving and being angry about the past. Oh, and the latest gadget that he found surfing the web that we have to get.
About a week into my treatment class…just as my head was beginning to clear...H told me that he wanted a divorce because I had mistreated him so…"I'll live in a hole if I have to." The next day he told me that he didn't want his medical smoking to cause us to break up because he knows that when folks get sober, they often have to cut all prior ties to stay that way.
Over the past several years, I made the transition from lover/partner to friend/caregiver emotionally. But I was too drunk to really notice it happening bit by bit. Now I see it. H readily accepts my friendship and care, and he clearly benefits from this. But H still thinks that I'm his lover/partner, which I no longer am in my mind and heart, even tho' I love him a great deal.
I don't have the heart to put this change in his face...he'd forget the conversation anyway...so every day I dance around the rotting elephant in every room.
If he were not demented, I would just tell him or he could see what has occurred…that wouldn't lessen the impact, mind you. But given how he is, he can't see it, doesn't remember what happended, and continues to live in a distant corner of the Twilight Zone, expecting, hoping that when I'm sober long enough I'll come around again.
While H wants to spend as much time with me as he can, I find that I want to spend as little time with him as I can get away with. I'm in a weekday evening "class" at my local treatment center and, even tho' the classes are a bit dry (sic) at times, they at least get me out of the house in the evenings and talking with other adults. Even AA meetings, in all their bizarreness, are a relief for this reason.
Our time together is reduced to watching TV, smoking cigarettes (started that again, but will stop again), and eating dinner. I'm just bored with him and as we continue this long, slow declining dance together, there just isn't much of him left there. And I feel great distress from this.
Our conversations are pretty much me talking about work and my projects/hobbies and him talking about how he's still angry at his dad because "he never would admit that I'm right," his continual frustration and angst about being ill and having to take meds that make him sick, and reliving and being angry about the past. Oh, and the latest gadget that he found surfing the web that we have to get.
About a week into my treatment class…just as my head was beginning to clear...H told me that he wanted a divorce because I had mistreated him so…"I'll live in a hole if I have to." The next day he told me that he didn't want his medical smoking to cause us to break up because he knows that when folks get sober, they often have to cut all prior ties to stay that way.
Over the past several years, I made the transition from lover/partner to friend/caregiver emotionally. But I was too drunk to really notice it happening bit by bit. Now I see it. H readily accepts my friendship and care, and he clearly benefits from this. But H still thinks that I'm his lover/partner, which I no longer am in my mind and heart, even tho' I love him a great deal.
I don't have the heart to put this change in his face...he'd forget the conversation anyway...so every day I dance around the rotting elephant in every room.
If he were not demented, I would just tell him or he could see what has occurred…that wouldn't lessen the impact, mind you. But given how he is, he can't see it, doesn't remember what happended, and continues to live in a distant corner of the Twilight Zone, expecting, hoping that when I'm sober long enough I'll come around again.
Monday, April 13, 2009
Changing dynamics
In my treatment program class last night, we learned about how families can react when someone gets sober. In my case, I'm not certain that H knows what to do with me ("Hey, where's the asshole I lived with for so many years?").
Many marriages end in divorce after one (or both) of the spouses gets sober.
But I'm not interested in fixing my marriage, just fixing me. Right now, it IS all about me.
He can't be fixed (tho' I likely underestimate him), so my marriage can't be fixed, I think.
And do I really know who he is now? I'm assuming that he isn't capable, which is likely true. Would I have drunk so much if I thought he could be there?
And also, to the degree he WAS there, I wasn't because I was drinking too much.
I've learned that H is an addict as well…a prescribed one, but one nonetheless. I mean, he's been taking pain meds for so long now and the long-term affects on brain biochemistry are there nonetheless. Throw in significant dementia and he'll not ever be what I need, in spite of how much I love him and want that.
As I get weller and weller (sic), I’m realizing how impaired he is, but he can't get well…well, as well as I need him to be. Where does that leave me, leave us?
Many marriages end in divorce after one (or both) of the spouses gets sober.
But I'm not interested in fixing my marriage, just fixing me. Right now, it IS all about me.
He can't be fixed (tho' I likely underestimate him), so my marriage can't be fixed, I think.
And do I really know who he is now? I'm assuming that he isn't capable, which is likely true. Would I have drunk so much if I thought he could be there?
And also, to the degree he WAS there, I wasn't because I was drinking too much.
I've learned that H is an addict as well…a prescribed one, but one nonetheless. I mean, he's been taking pain meds for so long now and the long-term affects on brain biochemistry are there nonetheless. Throw in significant dementia and he'll not ever be what I need, in spite of how much I love him and want that.
As I get weller and weller (sic), I’m realizing how impaired he is, but he can't get well…well, as well as I need him to be. Where does that leave me, leave us?
Tuesday, April 07, 2009
Finding a replacement
Someone in my treatment class was whining about how much time the class and homework is taking. (I didn't say it, but I was thinking the same thing: Class weeknights from 6 - 9:30 and homework too.) The counselor asked, "Well, how much time did you spend drinking?" Every evening and weekends too.
Someone else in the class was whining about how they had to rearrange their life around the classes. (I'm sure you can see this one coming.) The counselor said, "Well, you rearranged your life around alcohol, didn't you?" Uhhhh, yes, I did, clearly.
Very strange to not drink 1,000 or more calories a day. Now I have to eat and eat and eat. And even so, I’m still losing weight. Eventually, I'll figure out and get comfortable with how much I need to eat, but sheesh…I've never been a big fan of eating anyway.
Even stranger still is to be able to know in my heart that my romantic life with H is over, yet not be angry at him about it . The more present I become as I dry out, the clearer it becomes to me that I have to take responsibility for getting my needs met and not blame H...just love him.
Someone else in the class was whining about how they had to rearrange their life around the classes. (I'm sure you can see this one coming.) The counselor said, "Well, you rearranged your life around alcohol, didn't you?" Uhhhh, yes, I did, clearly.
Very strange to not drink 1,000 or more calories a day. Now I have to eat and eat and eat. And even so, I’m still losing weight. Eventually, I'll figure out and get comfortable with how much I need to eat, but sheesh…I've never been a big fan of eating anyway.
Even stranger still is to be able to know in my heart that my romantic life with H is over, yet not be angry at him about it . The more present I become as I dry out, the clearer it becomes to me that I have to take responsibility for getting my needs met and not blame H...just love him.
Friday, April 03, 2009
Weekdays of clarity
I haven't had a drink since last weekend and I'm amazed at how clear I'm thinking; people ahead of me in the treatment program say that thinking continues to improve for a long time.
Work is easier, my quick wit (we can debate how funny it is) is returning, and I'm realizing just how much I love H in spite of it all. And a little support from H and our family goes a long way in helping me feel better too.
I also realize just how impaired H is - not just in the "big" things, like not being able to cook a meal - but in small things, like tracking a simple conversation, mumbling half the words in a sentence, or struggling to wash a pan because "no matter how much I wash it, it just feels oily." (It wasn't.)
Weekday schedule now is work 8 - 5 & intensive outpatient treatment (group therapy) 6 - 9:30. Throw in physical therapy and psychotherapy once a week each and 2 AA meetings a week and I'm max'd out. Too much therapy if you ask me…. And just for fun, I'm getting a cold too.
Happily, sister and nieces are cooking for H and he likes seeing them and they love to spend time with him. And a nurse is now coming in to manage meds for H.
Nice to have some relief so that I can take care of myself.
But best of all is that my anger towards H is diminishing in a big way and I'm able to be more patient and kind. I simply don’t have the hostility towards him that I've felt in the past…even when I'm exhausted and he's being, well, his impaired self.
And for all of this I am very, very grateful.
Work is easier, my quick wit (we can debate how funny it is) is returning, and I'm realizing just how much I love H in spite of it all. And a little support from H and our family goes a long way in helping me feel better too.
I also realize just how impaired H is - not just in the "big" things, like not being able to cook a meal - but in small things, like tracking a simple conversation, mumbling half the words in a sentence, or struggling to wash a pan because "no matter how much I wash it, it just feels oily." (It wasn't.)
Weekday schedule now is work 8 - 5 & intensive outpatient treatment (group therapy) 6 - 9:30. Throw in physical therapy and psychotherapy once a week each and 2 AA meetings a week and I'm max'd out. Too much therapy if you ask me…. And just for fun, I'm getting a cold too.
Happily, sister and nieces are cooking for H and he likes seeing them and they love to spend time with him. And a nurse is now coming in to manage meds for H.
Nice to have some relief so that I can take care of myself.
But best of all is that my anger towards H is diminishing in a big way and I'm able to be more patient and kind. I simply don’t have the hostility towards him that I've felt in the past…even when I'm exhausted and he's being, well, his impaired self.
And for all of this I am very, very grateful.
Monday, March 30, 2009
Monday snippets and !s
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!
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!
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.
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