Oh, the drama of it all.
H has always liked reality television, such as Wife Swap, Nanny 911, etc. But now, he's completely focused on RTV (Reality TV), especially those shows that include yelling, screaming, fist fights, police takedowns, acerbic meter maids, crashes, etc. The noisier the better.
Grieving in the dark.
When the house is quiet at night, when H and all the animals have gone to bed, that's when I feel the saddest. Mostly, this is when I can finally hear myself think (see above). It's only then that I feel really, really sad for H and all that he has lost. And I feel sad that our lives have ended up where they are. I wish that there was some way to grieve, get it over with, and just be done with this mess…I have been grieving for over 15 years now. Ironically, I would have grieved less if he had just died 15 years ago.
As much as I grieve in the dark, it also comes up for me at odd times...in the grocery store, at the dentist (?), driving to work. I'm sad because I see what H has lost...pretty much everything at this point. And I'm sad that I can't help him, really. Hell, I'm sad that I can't help myself. And I'm sad that he's afraid...I am too.
Stuck in the past.
As I stumble into the future (which keeps arriving before I'm ready), H is rooted firmly in the past. He focuses on his anger towards his parents, getting arrested 20 year ago for minor possession, on how our relationship has never been what he wanted, how he was disadvantaged in school, how he had strokes as a child…. What can you say to someone who is living anywhere but here and now? Meet them where they are? Tell them to get over it? Just nod and listen?
Letting go.
H and I are moving farther and farther apart...at least I feel that way more and more. We spend less time talking than ever before...some of that is that H doesn't know what to say; I don't either. What can I share with him that he'd understand? What can he share with me that is relevant? He often sits in the office with his back to the blaring TV, staring at his computer screen. We are hardly even in the same room in the house anymore...a just metaphor for our life together.
Showing posts with label dementia. Show all posts
Showing posts with label dementia. Show all posts
Tuesday, July 13, 2010
Thursday, June 24, 2010
Thursday, May 06, 2010
I'm sorry you're stuck, redux
Last night, I talked with H about his comment: "I'm sorry that you're stuck caring for me."
I thanked him for acknowledging what a difficult situation this is and I told him that I don't blame him for it.
"Where we are is because of your illness, not you," I told him. "I don't blame you for this, I blame your health. I wish that it was different, but it is what it is."
(Lots of conversation not worth repeating here.)
The core issue is that H can't accept that our relationship is irrevocably changed...he keeps telling me that I'm "punishing him" by not re-engaging in a romantic relationship as soon as he's feeling better.
I told him that "I can't deal with the whiplash. You're going to die, no you're not, then you're going to die again, then you get better and want me to be the loving man that I was earlier in our time. You don't remember last year, you could hardly get out of bed, couldn't make a sandwich, and now you want me to act like nothing ever happened. I can't keep up emotionally."
"No, I don't remember what happened last year, but I know I was in bed a lot," he says.
I continue, "If you want me to show up, you need to show up too. And you haven't for years, except for a few months at a time. I do love you H and I want to make certain you're OK, but I'm mostly a nurse now anyway, not a partner."
And then the divorce word comes up again. Sigh.
So we go through all of that again. And I told him that I'm not going to make him leave, but if he wants to, let's talk about that, but where will he go?
The whole thing netted out to him begging me to place him at the facility that we have planned on using when the need arises. Then he told me he didn't want to talk about this anymore.
This morning, I asked him if he remembered our conversation last night and what he thought about it.
"No."
I thanked him for acknowledging what a difficult situation this is and I told him that I don't blame him for it.
"Where we are is because of your illness, not you," I told him. "I don't blame you for this, I blame your health. I wish that it was different, but it is what it is."
(Lots of conversation not worth repeating here.)
The core issue is that H can't accept that our relationship is irrevocably changed...he keeps telling me that I'm "punishing him" by not re-engaging in a romantic relationship as soon as he's feeling better.
I told him that "I can't deal with the whiplash. You're going to die, no you're not, then you're going to die again, then you get better and want me to be the loving man that I was earlier in our time. You don't remember last year, you could hardly get out of bed, couldn't make a sandwich, and now you want me to act like nothing ever happened. I can't keep up emotionally."
"No, I don't remember what happened last year, but I know I was in bed a lot," he says.
I continue, "If you want me to show up, you need to show up too. And you haven't for years, except for a few months at a time. I do love you H and I want to make certain you're OK, but I'm mostly a nurse now anyway, not a partner."
And then the divorce word comes up again. Sigh.
So we go through all of that again. And I told him that I'm not going to make him leave, but if he wants to, let's talk about that, but where will he go?
The whole thing netted out to him begging me to place him at the facility that we have planned on using when the need arises. Then he told me he didn't want to talk about this anymore.
This morning, I asked him if he remembered our conversation last night and what he thought about it.
"No."
Tuesday, April 27, 2010
Losing them over & over again
At his sickest, I'd get an occasional glimpse of the old H...and that would make me want more. Reminds me of taking a drag on a cigarette after having quit smoking; I always want more.
And now, I get to see more of the old H...bit by bit he's coming back. So, extending my metaphor, I get to smoke the whole cigarette. Of course, I can't just smoke one; I want more and more.
Now, this has happened over and over again, where H is at the brink (and a "zombie") and then he gets pulled back and returns to more of his former self. The miracle of modern medicine.
Problem is that he's weller just long enough for those fond feelings and that love that I have for him to well back up...maybe even some hope and optimism that things can be different, that my ole H will return to me for good. And as he gets weller, then I also dread the inevitable decline again. Then he moves back towards the brink, there is no H there anymore, and I need to steel myself up for a possible death, hospice, etc.
What is hardest is that I fall again for him as he gets well, then I lose him over and over again as he teeters on the brink.
Dementia is called the long goodbye and it is.
And now, I get to see more of the old H...bit by bit he's coming back. So, extending my metaphor, I get to smoke the whole cigarette. Of course, I can't just smoke one; I want more and more.
Now, this has happened over and over again, where H is at the brink (and a "zombie") and then he gets pulled back and returns to more of his former self. The miracle of modern medicine.
Problem is that he's weller just long enough for those fond feelings and that love that I have for him to well back up...maybe even some hope and optimism that things can be different, that my ole H will return to me for good. And as he gets weller, then I also dread the inevitable decline again. Then he moves back towards the brink, there is no H there anymore, and I need to steel myself up for a possible death, hospice, etc.
What is hardest is that I fall again for him as he gets well, then I lose him over and over again as he teeters on the brink.
Dementia is called the long goodbye and it is.
Wednesday, March 10, 2010
You can't incarcerate me
I've been trying to follow the advice of a friend and involve H more in care decisions. As I'm heading out of town this weekend for work, I was talking with him about how we can cover his care needs while I'm out gallivanting about the planet.
For a long time, he's claimed that he's "just fine" when I travel, but I know better. But it is hard to convince him of that. Very difficult to involve someone in their own care decisions when they can't remember what they need or that they need it at all. Yet, not involving them creates other issues.
I said, "I'm worried about you when I travel...taking your meds, eating...how can we ensure that you do these things when I'm gone? What are we going to do?"
For some reason, H has forgotten to take his meds in the evening two days in a row. This is really, really bad news for him for lots of reasons...at least of few of them life-threatening.
And I used to track his meds and when he takes them, but I forget too and assume that he does it. Just one reason why H and I aren't the best care team for him.
"Honey, if you forget your meds when I'm here routinely, how do we make certain that you take them when I'm gone?"
"I always take my meds and I don't need the help," he says.
I say, "Honey, how can you say that? We just talked about it. Is it possible that maybe you don't know what help you need? That you can't remember what's going on?"
He's getting defensive now, "What do you mean?"
I say, "Well, for example, when you wanted a med holiday, I told you that you had done that before years ago and that you became very sick…."
"I did?" he says. He doesn't remember either the events or us talking about it.
"Yes, so please trust me that I'm trying to keep you safe while I'm not at home. I'm talking with you so that you're involved in your care decisions."
H says, "Well, you can't incarcerate me!" (I'm thinking...honey, I don't want to do that, but what options do I have when I'm gone or even in general? And a part of my brain is saying, "Watch me!")
"That's not what this is about, H." At this point, I'm sitting in a hall of mirrors.
While a bit frustrating, this conversation was very insightful for me. He sees placement as incarceration and he clearly doesn't trust me in this regard, which is why I'm trying to involve him in all of this.
And most importantly, I realized that my evaluation is the only thing that matters. In spite of my habit and desire to involve him, I can't count on him in this way.
Clearly, his dementia is getting worse and fast. My guess is that the new anti-virals are not working for him...if his viral load isn't dropping substantially (we'll know in a few weeks), I'm moving on hospice. And H and I need to have the hospice conversation. Fine, they can come to our home, but it is likely that they will be coming this year.
What do you do? Go through the motions of involving them and then just ignore what they say? How can you get someone to accept care when they can't remember that they need it? How do you get them out of their denial if they can't remember all that has happened? How do you bring up hospice when they don't remember why they need it? How do you tell someone you love that they're not "just fine" and that they won't get better?
So many questions and (I think) so little time.
For a long time, he's claimed that he's "just fine" when I travel, but I know better. But it is hard to convince him of that. Very difficult to involve someone in their own care decisions when they can't remember what they need or that they need it at all. Yet, not involving them creates other issues.
I said, "I'm worried about you when I travel...taking your meds, eating...how can we ensure that you do these things when I'm gone? What are we going to do?"
For some reason, H has forgotten to take his meds in the evening two days in a row. This is really, really bad news for him for lots of reasons...at least of few of them life-threatening.
And I used to track his meds and when he takes them, but I forget too and assume that he does it. Just one reason why H and I aren't the best care team for him.
"Honey, if you forget your meds when I'm here routinely, how do we make certain that you take them when I'm gone?"
"I always take my meds and I don't need the help," he says.
I say, "Honey, how can you say that? We just talked about it. Is it possible that maybe you don't know what help you need? That you can't remember what's going on?"
He's getting defensive now, "What do you mean?"
I say, "Well, for example, when you wanted a med holiday, I told you that you had done that before years ago and that you became very sick…."
"I did?" he says. He doesn't remember either the events or us talking about it.
"Yes, so please trust me that I'm trying to keep you safe while I'm not at home. I'm talking with you so that you're involved in your care decisions."
H says, "Well, you can't incarcerate me!" (I'm thinking...honey, I don't want to do that, but what options do I have when I'm gone or even in general? And a part of my brain is saying, "Watch me!")
"That's not what this is about, H." At this point, I'm sitting in a hall of mirrors.
While a bit frustrating, this conversation was very insightful for me. He sees placement as incarceration and he clearly doesn't trust me in this regard, which is why I'm trying to involve him in all of this.
And most importantly, I realized that my evaluation is the only thing that matters. In spite of my habit and desire to involve him, I can't count on him in this way.
Clearly, his dementia is getting worse and fast. My guess is that the new anti-virals are not working for him...if his viral load isn't dropping substantially (we'll know in a few weeks), I'm moving on hospice. And H and I need to have the hospice conversation. Fine, they can come to our home, but it is likely that they will be coming this year.
What do you do? Go through the motions of involving them and then just ignore what they say? How can you get someone to accept care when they can't remember that they need it? How do you get them out of their denial if they can't remember all that has happened? How do you bring up hospice when they don't remember why they need it? How do you tell someone you love that they're not "just fine" and that they won't get better?
So many questions and (I think) so little time.
Wednesday, February 03, 2010
Snippets from the edge (again)
Oooh, look, ponies
We're driving to the Dr. yesterday, past some pasture land where some Shetlands live. H stands up in the car (a convertible with the top down) and is leaning outside the car pointing and yelling (you guessed it), "Oooh, look, ponies!" Giant smile on his face, even as I pulled him back into his seat with the seat belt.
How I got it
Took H to a new Dr. (GP) yesterday. When the Dr. came in, H blurted out, "I just want to tell you how I got HIV…." And he did. I filled in the rest of the history with H nodding, although not necessarily in time with my information.
Salvage
Well, the new anti-viral regimen is considered a salvage regimen, where they just throw a bunch of anti-virals at the virus in hope of controlling it. Not surprising, but I had to figure this out myself with research…why can't the doctors just tell me this kind of stuff? I'd prefer honesty, thank you.
Yellow/gray
H's sister came to visit last weekend and commented privately to me, "His skin, it's kinda yellow/gray now. He's lost weight." No kidding. She was surprised that H got so tired during her two-hour visit.
A whole lotta shaking
H's hands are shaking more and more and his head's beginning to as well a bit. He is struggling to sign his name on paperwork.
Feeling any better?
I asked H if he thought that his viral load was dropping, if he was feeling any better since he's been on his meds for over three weeks now. He says, "Not really…I'm getting more tired…it may be going up instead." "I'm sorry, honey…are you afraid?" "Not yet," he says.
Please forgive us
Got an email from H's parents where they said, "please forgive us for not supporting you as much as we could because we were busy with our own lives.… I sure hope that you both can spend Christmas with us at our new house." Errrr, thanks, but you really need to come up here and visit your son. Don't you get it? It isn't about me…and H may not make it to Christmas ("let's wait and see how he does").
We're driving to the Dr. yesterday, past some pasture land where some Shetlands live. H stands up in the car (a convertible with the top down) and is leaning outside the car pointing and yelling (you guessed it), "Oooh, look, ponies!" Giant smile on his face, even as I pulled him back into his seat with the seat belt.
How I got it
Took H to a new Dr. (GP) yesterday. When the Dr. came in, H blurted out, "I just want to tell you how I got HIV…." And he did. I filled in the rest of the history with H nodding, although not necessarily in time with my information.
Salvage
Well, the new anti-viral regimen is considered a salvage regimen, where they just throw a bunch of anti-virals at the virus in hope of controlling it. Not surprising, but I had to figure this out myself with research…why can't the doctors just tell me this kind of stuff? I'd prefer honesty, thank you.
Yellow/gray
H's sister came to visit last weekend and commented privately to me, "His skin, it's kinda yellow/gray now. He's lost weight." No kidding. She was surprised that H got so tired during her two-hour visit.
A whole lotta shaking
H's hands are shaking more and more and his head's beginning to as well a bit. He is struggling to sign his name on paperwork.
Feeling any better?
I asked H if he thought that his viral load was dropping, if he was feeling any better since he's been on his meds for over three weeks now. He says, "Not really…I'm getting more tired…it may be going up instead." "I'm sorry, honey…are you afraid?" "Not yet," he says.
Please forgive us
Got an email from H's parents where they said, "please forgive us for not supporting you as much as we could because we were busy with our own lives.… I sure hope that you both can spend Christmas with us at our new house." Errrr, thanks, but you really need to come up here and visit your son. Don't you get it? It isn't about me…and H may not make it to Christmas ("let's wait and see how he does").
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….
Thursday, October 29, 2009
General disability
A long-time friend is now helping me with the garden. She has know H and I for about 20 years or so. Now, she's over a few times a month and is able to spend some time visiting with H and me.
While I was visiting with her yesterday, she told me how she had seen H decline over the past year. She characterized it as significant mental slowness, difficulty in getting around, lack of ability to track with a simple conversation, and just overall "fading" of his personality.
She says that "if he continues declining at this rate, I don't see how he can be at home for much longer…likely he'll only live a year or two more."
I can see the same things also (and I do think that his tether is short), but I'm so close that I don't notice the gradual decline and I mostly focus on the significant events: confusion over the washing machine dial, inability to make a bowl of cereal, major short-term memory issues, muttering to himself and shaking, and trouble setting the oven timer.
While I'm away next week, a series of our friends and family will be spending time with H. I will check in with them after I'm back to get their observations.
But, I know what they're going to all say and I do appreciate their counsel. That doesn't change my reality any, but does help me with needed perspective.
Reality is that, given his series of CNS & dementia issues, he is heading towards general disability, a disability where he can't hardly do anything, eventually resulting in him being bed-ridden.
While I was visiting with her yesterday, she told me how she had seen H decline over the past year. She characterized it as significant mental slowness, difficulty in getting around, lack of ability to track with a simple conversation, and just overall "fading" of his personality.
She says that "if he continues declining at this rate, I don't see how he can be at home for much longer…likely he'll only live a year or two more."
I can see the same things also (and I do think that his tether is short), but I'm so close that I don't notice the gradual decline and I mostly focus on the significant events: confusion over the washing machine dial, inability to make a bowl of cereal, major short-term memory issues, muttering to himself and shaking, and trouble setting the oven timer.
While I'm away next week, a series of our friends and family will be spending time with H. I will check in with them after I'm back to get their observations.
But, I know what they're going to all say and I do appreciate their counsel. That doesn't change my reality any, but does help me with needed perspective.
Reality is that, given his series of CNS & dementia issues, he is heading towards general disability, a disability where he can't hardly do anything, eventually resulting in him being bed-ridden.
Monday, October 19, 2009
Monday snippets
More of the same
I haven't posted much as life grinds on with no real news…just more of the same with me struggling to cope and H struggling to do just about anything. Really, I'm struggling to accept and my not accepting reality is why I struggle.
That must be frustrating
I've told H on many occasions when he's expressing his dismay at all he no longer can do, "That must be frustrating, honey." "Yea, it really is." What I don't say is that it is equally as frustrating for me (especially when I hear the same story over and over) and that makes me frustrated (but there's nothing he can do).
Better living through chemicals
Effexor is a wonderful anti-depressant in so many ways. I'm not longer in my deep, dark hole and for that I am glad; in fact, my mood is pretty darned good these days. But, the side effects are troublesome, from the slight agitation feeling, to the hot flashes, to the libido up, but performance down.
Nodding and muttering
I keep finding H sitting at his computer nodding and muttering. He tells me that he's daydreaming. This usually also happens when he's sitting at the dinner table, fork shaking in his hand while he's staring down the dinner plate.
Using the oven timer
Yesterday, H put some cinnamon rolls in the oven while I was doing laundry. He came to me and said he couldn't figure out the timer (on our oven that we've had for 20 years). When I went to check on the oven, he had set it to self-clean and then to a timed bake for 90 minutes at 400. I tried to explain what he had done, but finally settled for "only use the left button" for the timer.
Wish I could remember
H continually reminds me of things that need doing. Problem is that he doesn't remember that he's already talked with me several times about the chore and we've reach agreement on what needs to happen. Chances are, the task is already done. Challenge for me is to reply as tho' we never had a conversation about the topic…that's how H sees it after all.
Favorite quote of the day
"If you experience chronic difficulties in a particular area of your life, there’s a strong chance that the root of the problem is a failure to accept reality as it is," Steve Pavalina here.
I haven't posted much as life grinds on with no real news…just more of the same with me struggling to cope and H struggling to do just about anything. Really, I'm struggling to accept and my not accepting reality is why I struggle.
That must be frustrating
I've told H on many occasions when he's expressing his dismay at all he no longer can do, "That must be frustrating, honey." "Yea, it really is." What I don't say is that it is equally as frustrating for me (especially when I hear the same story over and over) and that makes me frustrated (but there's nothing he can do).
Better living through chemicals
Effexor is a wonderful anti-depressant in so many ways. I'm not longer in my deep, dark hole and for that I am glad; in fact, my mood is pretty darned good these days. But, the side effects are troublesome, from the slight agitation feeling, to the hot flashes, to the libido up, but performance down.
Nodding and muttering
I keep finding H sitting at his computer nodding and muttering. He tells me that he's daydreaming. This usually also happens when he's sitting at the dinner table, fork shaking in his hand while he's staring down the dinner plate.
Using the oven timer
Yesterday, H put some cinnamon rolls in the oven while I was doing laundry. He came to me and said he couldn't figure out the timer (on our oven that we've had for 20 years). When I went to check on the oven, he had set it to self-clean and then to a timed bake for 90 minutes at 400. I tried to explain what he had done, but finally settled for "only use the left button" for the timer.
Wish I could remember
H continually reminds me of things that need doing. Problem is that he doesn't remember that he's already talked with me several times about the chore and we've reach agreement on what needs to happen. Chances are, the task is already done. Challenge for me is to reply as tho' we never had a conversation about the topic…that's how H sees it after all.
Favorite quote of the day
"If you experience chronic difficulties in a particular area of your life, there’s a strong chance that the root of the problem is a failure to accept reality as it is," Steve Pavalina here.
Wednesday, September 23, 2009
The never ending list
Since I don't see H much - what with me working and him sleeping so much - whenever I do see him, he rattles off a list of what "needs to be done" and "we need to buy."
Now, I've written before about this, but H's requests for the list are doing nothing but escalating. And in the past I'd get all agitated about this (the "I have to do everything" martyr song), but now I'm less upset about the never-ending list.
Many of the things he asks for - cleaning the gutters, ordering pet food, new eyeglasses - are all fair game, but some are just bizarre.
My favorite is the pressing need to tear out a Laurel hedge in the back yard and replace it with a small building…a studio with power and water that we could rent out. The other fun one is that the 42" plasma TV that we have had for less than a year isn't "big enough," so we need to buy a 54" one. So not going to happen.
The other day, he was pressing on getting something done (I can't even remember what it was now) and I did get upset.
"Why are you so pissed off?" H asks me.
"Well, I can't keep up anymore with just what I need to do and you sleep all the time and then get up and tell me everything else you want me to do. And over time, you're able to do less and less, so you just assume that I'll pick everything up that you can't or don't want to do," I said. (AKA "the martyr song.")
"Oh, I don't understand, but I'm sorry." H said.
I thought about telling him that nothing happens in the house or our lives unless I do it, but it didn't seem worth it. So, I just dropped it as I often do. The trap is that I keep thinking that he can understand and empathize with my experience (he used to be able to), but of course he can't anymore.
The challenge is to take what I think needs to be done and talk him down from the others where I can. And since he often can't remember what he asks for, sometimes I just agree and then change the subject.
Now, I've written before about this, but H's requests for the list are doing nothing but escalating. And in the past I'd get all agitated about this (the "I have to do everything" martyr song), but now I'm less upset about the never-ending list.
Many of the things he asks for - cleaning the gutters, ordering pet food, new eyeglasses - are all fair game, but some are just bizarre.
My favorite is the pressing need to tear out a Laurel hedge in the back yard and replace it with a small building…a studio with power and water that we could rent out. The other fun one is that the 42" plasma TV that we have had for less than a year isn't "big enough," so we need to buy a 54" one. So not going to happen.
The other day, he was pressing on getting something done (I can't even remember what it was now) and I did get upset.
"Why are you so pissed off?" H asks me.
"Well, I can't keep up anymore with just what I need to do and you sleep all the time and then get up and tell me everything else you want me to do. And over time, you're able to do less and less, so you just assume that I'll pick everything up that you can't or don't want to do," I said. (AKA "the martyr song.")
"Oh, I don't understand, but I'm sorry." H said.
I thought about telling him that nothing happens in the house or our lives unless I do it, but it didn't seem worth it. So, I just dropped it as I often do. The trap is that I keep thinking that he can understand and empathize with my experience (he used to be able to), but of course he can't anymore.
The challenge is to take what I think needs to be done and talk him down from the others where I can. And since he often can't remember what he asks for, sometimes I just agree and then change the subject.
Wednesday, June 24, 2009
Snippets from the edge
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.
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.
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, 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?
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.
Monday, March 02, 2009
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."
Monday, February 23, 2009
Heal me
H's family has always been seekers, looking for alternative healing methods that include both the profound and the silly. Profound in terms of how we create and can change our reality and silly like a burbling mason jar of fungus has healing properties or pads that remove toxins from the bottom of your feet.
While these methods may or may not work, they pursue them with a vigor that some reserve for their most favored hobbies or passions.
Recently, H's little sister has been interested in a form of long-distance healing. She's taking some classes and others in the family are interested also.
So, H says to me last night, "They're learning this (healing technique) for me, you know."
"Yes, honey, they love you very much and want to help."
He says, "I just don't know if it could help or not…."
"Well, if it does, it would be a miracle. Not that I don't believe in miracles…just that it would take one to make you healthy again."
H says, "I really need two miracles: one to get me well and one to get a good job so I can get on with my life."
While these methods may or may not work, they pursue them with a vigor that some reserve for their most favored hobbies or passions.
Recently, H's little sister has been interested in a form of long-distance healing. She's taking some classes and others in the family are interested also.
So, H says to me last night, "They're learning this (healing technique) for me, you know."
"Yes, honey, they love you very much and want to help."
He says, "I just don't know if it could help or not…."
"Well, if it does, it would be a miracle. Not that I don't believe in miracles…just that it would take one to make you healthy again."
H says, "I really need two miracles: one to get me well and one to get a good job so I can get on with my life."
Thursday, February 12, 2009
Hoping for colon cancer
H has an accumulating set of issues in addition to his baseline stuff: depression, bowel distress, loss of strength and stamina, fear of just about everything, frequent nausea, more mental slowness (again), etc. etc.
Talking with him last night, he blurted out, "Well, maybe my bowel trouble is colon cancer. I hope so...maybe adding one more thing will get me out of here more quickly."
Then he laughed a bit.
I said, "Honey, you were checked for colon cancer just a bit ago and you were OK. Besides, in your case, clearly it isn't about how many health issues you have...as you say, all of your dance cards are full...and besides, you've beat the odds again and again."
"Yea, but I doubt I could beat cancer...wouldn't want to, anyway."
Talking with him last night, he blurted out, "Well, maybe my bowel trouble is colon cancer. I hope so...maybe adding one more thing will get me out of here more quickly."
Then he laughed a bit.
I said, "Honey, you were checked for colon cancer just a bit ago and you were OK. Besides, in your case, clearly it isn't about how many health issues you have...as you say, all of your dance cards are full...and besides, you've beat the odds again and again."
"Yea, but I doubt I could beat cancer...wouldn't want to, anyway."
Wednesday, February 11, 2009
Uresolved
When H and I have had issues to deal with and we've gotten angry, usually there is some resolution to that tension. Someone takes responsibility, we agree to do something different, or one or both of us just says, "Yup, you're right." And mostly, something changes.
But now, instead of being resolved, well…it doesn't .
Recently, H got up from a nap after not having eaten all day…it was late, 9pm. I had just worked an 11 hour day and was making dinner: very tasty Reuben sandwiches with cole slaw and homemade baked potato chips. (!)
He was very upset about "sandwiches again for dinner" and "we've been having a lot of sandwiches." Uhhh, no…a few times in the past month. The night before I made a fabulous dinner, but he couldn't remember what we ate. Most of our meals are homemade meals.
So, tense words ensue and what we said doesn't matter. Unfortunately, H can't deal with me when I get angry anymore…. And he can't acknowledge the issue because he's so puzzled or he doesn't understand what the big deal is, so my anger doesn't abate.
There are many, many other examples like this, but more and more it involves a lack of resolution about the issue. Not just for me, but for us. We're not working on the issue together.
I need to get to the point where unresolved issues don't matter to me.
Honestly, I don't see how I can do that....
But now, instead of being resolved, well…it doesn't .
Recently, H got up from a nap after not having eaten all day…it was late, 9pm. I had just worked an 11 hour day and was making dinner: very tasty Reuben sandwiches with cole slaw and homemade baked potato chips. (!)
He was very upset about "sandwiches again for dinner" and "we've been having a lot of sandwiches." Uhhh, no…a few times in the past month. The night before I made a fabulous dinner, but he couldn't remember what we ate. Most of our meals are homemade meals.
So, tense words ensue and what we said doesn't matter. Unfortunately, H can't deal with me when I get angry anymore…. And he can't acknowledge the issue because he's so puzzled or he doesn't understand what the big deal is, so my anger doesn't abate.
There are many, many other examples like this, but more and more it involves a lack of resolution about the issue. Not just for me, but for us. We're not working on the issue together.
I need to get to the point where unresolved issues don't matter to me.
Honestly, I don't see how I can do that....
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