Gentle readers....
H has been in a nursing facility since September, 2014 subsequent to his car accident.
About two weeks ago, I got a call from the nursing facility that his family was taking him out of the facility and moving him into "an apartment." The nursing facility said that he was leaving AMA (Against Medical Advice) as their evaluation is that he needs 24 hour care...which H vehemently denies...and so does his family. I am legally unable to stop H from leaving the nursing facility.
The next day he had moved out into temporary housing in a "medical hotel," which provides temporary, independent housing through a local service organization for people with HIV.
I was not consulted and it was a surprise that he actually moved out. They wrangled to get me to take care of him for about a year and I repeatedly said NFW (no). So, they just moved him out.
H is elated as he has been "released from Hell" and now has his own room that is quiet. His family and some friends are all helping him (from what I can tell, about 6 - 8 people) get settled and get his care needs set up. The rub is, they don't understand the full extent of his needs...they are clueless that its taking 6 or so of them to help him, yet they don't understand why one person can't do it all, like I tried to for many years...even tho' I did have help.
So, today, there is much chatter about his medications. He takes (last count) 22 different meds a day and the total number of pills is about 50 a day. Someone has to order the meds, set them up...but they didn't think about that. They didn't ask me about this, nor did they plan ahead.
His family has supported him in his fantasy that he can live on his own, even though I didn't think he could for several years before the accident. And, so they have put him at great risk because H whined about how much he hated where he was.
This will likely not end well for him and that make me very sad. My plan is to help, but not rescue him...although part of me says, "just walk away." I haven't been able to do that for years...maybe now is the time to do it.
Showing posts with label stop the madness. Show all posts
Showing posts with label stop the madness. Show all posts
Tuesday, March 15, 2016
Tuesday, May 26, 2015
Placement, finally
Gentle readers,
again another year has passed. Much has happened.
Last August, H was
driving to an appointment at a nearby Dr's office that he had been to many
times. He got confused, took the wrong route, left the road, and hit a utility
pole at between 40 and 50 mph (we think). Thankfully, no one else was hurt, but
H was critically injured. He was in a Miata and the pole hit the car just in
front of the driver's door…he was lucky to live (maybe).
All of his limbs
were broken, his lower back was broken, multiple facial and skull fractures,
and a traumatic head injury to his forehead. He was unconscious in the ICU for
almost two weeks, in the hospital for another 3 weeks, then off to a skilled
nursing facility, where he has been since September.
Last December, I
told him that he wasn't going to be coming home. I simply can't take care of
him anymore…it is too much for me, too stressful. And the social workers won't
discharge him home unless I have someone in the house when I am at work all day
because he's not safe. And it costs too much to have someone at the house all
the time.
So, he's in a facility with a bunch of seniors who are near or at end of life. It isn't the right place for H to be, but for now it works in that he is not at the house. We're working on another place for him, but it isn't easy to find assisted living for a 55 year old man.
So, he's in a facility with a bunch of seniors who are near or at end of life. It isn't the right place for H to be, but for now it works in that he is not at the house. We're working on another place for him, but it isn't easy to find assisted living for a 55 year old man.
As expected, H's
family are up in arms, minimize his care needs/disability, and have pulled out
the stops with guilt, shaming, anger, and pleading.
My emotions are all
over the map, even months later, but I am gradually settling in to my new
reality. I see him weekly and talk with him almost daily. But, no matter what,
he cannot move back into the house.
And now, when I second guess my decision to place him, I read back through this blog and wonder how I managed to survive all those years.
And now, when I second guess my decision to place him, I read back through this blog and wonder how I managed to survive all those years.
Wednesday, August 01, 2012
One of my jobs...
I came home last night and found the gas stove burner on. He managed to cook some eggs (even tho' I had made him some earlier...he "didn't see them"), but forgot to turn off the burner.
I came home the night before and H had left the house, but left many windows open. "Well, at least I turned on the security alarm," he said.
In the past, I've jut gotten mad at him about these types of things, but after he got up from his nap and over dinner, we talked about this. I wasn't mad this time, just weary and concerned.
"One of my jobs is to keep you safe, H," I opened, "and I'm not certain that I can do that. Yesterday, you left the house open and today, you left a burner on."
"What am I going to do if I can't keep you safe at home?" I asked.
"Well, I'm not usually this bad," he says.
"Yea, but you are worried about strangers in the neighborhood and being robbed, but then you leave the house open and you tell all the neighbors that you have AIDS and take pain meds and smoke pot. You told me you wouldn't cook, but then you do...do you know that this is the 3rd time you've left the burner on?"
Now, this is all on top of a simple repair I asked him to be home for last week (unclogging the kitchen drain) that turned into a $600 bill because the tech took advantage of him IMO. I'm disputing the charge with the CC company now.
Sigh.
While this is all somewhat distressing, it is just the most recent examples at how impaired H really is.
If there is good news in this, it is that safety issues can be the precipitating event where I have to place him. The worry is that I don't know how bad this will get when.
In any case, I've hidden the knobs from the gas range and it can't be operated without the knobs. But, this is just a workaround for that one issue.
At least with a kid, you get a sense of what they can and cannot do and you adjust. And you know that over time, they will become more capable, not less. In this case, however, you just don't know what to expect.
I came home the night before and H had left the house, but left many windows open. "Well, at least I turned on the security alarm," he said.
In the past, I've jut gotten mad at him about these types of things, but after he got up from his nap and over dinner, we talked about this. I wasn't mad this time, just weary and concerned.
"One of my jobs is to keep you safe, H," I opened, "and I'm not certain that I can do that. Yesterday, you left the house open and today, you left a burner on."
"What am I going to do if I can't keep you safe at home?" I asked.
"Well, I'm not usually this bad," he says.
"Yea, but you are worried about strangers in the neighborhood and being robbed, but then you leave the house open and you tell all the neighbors that you have AIDS and take pain meds and smoke pot. You told me you wouldn't cook, but then you do...do you know that this is the 3rd time you've left the burner on?"
Now, this is all on top of a simple repair I asked him to be home for last week (unclogging the kitchen drain) that turned into a $600 bill because the tech took advantage of him IMO. I'm disputing the charge with the CC company now.
Sigh.
While this is all somewhat distressing, it is just the most recent examples at how impaired H really is.
If there is good news in this, it is that safety issues can be the precipitating event where I have to place him. The worry is that I don't know how bad this will get when.
In any case, I've hidden the knobs from the gas range and it can't be operated without the knobs. But, this is just a workaround for that one issue.
At least with a kid, you get a sense of what they can and cannot do and you adjust. And you know that over time, they will become more capable, not less. In this case, however, you just don't know what to expect.
Monday, June 18, 2012
Tipping point
Over the past month or so, H is back to being in bed much of the time. He has been exhausted and his dementia is worse right now. He's not eating much at all. He's sweating profusely again at night. These are classic signs of a viral load spike.
While his viral load is still pretty low, his T-cell counts have dropped 50% in the past month or so for some reason. Usually, the viral load rising is the leading indicator, followed by T-cell counts declining. But not this time.
This type of thing has happened before: the virus gains resistance to the meds, he gets near the edge (e.g., his dementia gets much worse, he gets very sick), and then a new med is available (just at the last minute). And they pull him back with a new med. Then the virus gains resistance to the new med...rinse and repeat.
But this time, H's virologist doesn't know what to do as H's virus is resistant to all the alternative meds. And there aren't any new ones of the immediate horizon.
H is afraid right now and I'm doing what I can to comfort him...to be kind, loving, & helpful. He is uncharacteristically not in denial about what is happening. I've told him that we've been here before (many times) and that it will work out. But I don't believe it...not this time; maybe, I'm just being hopeful that this is the end.
Over the past month or two, I've been doing research on placing H. I've finally come to the clear conclusion that I just can't do this anymore, can't deal with his dementia, the lack of a partner, the work, the burden, the stress. Been here before too. Maybe placement will be easier than I fear, given what is happening to him right now.
The related cycle is: pull him back from the edge with a new med, then after a year or two, the meds are failing and I'm going crazy as his dementia gets worse and he becomes less functional. Then I move to place him. Then he gets on a new med and gets better. This cycle, too, has happened many, many times.
However this round plays out, what I can say is that I'm optimistic for life after H. I've been fantasizing about it and, while you never really know how it will be, I am more than a little excited at finding out what life can be without this burden.
While his viral load is still pretty low, his T-cell counts have dropped 50% in the past month or so for some reason. Usually, the viral load rising is the leading indicator, followed by T-cell counts declining. But not this time.
This type of thing has happened before: the virus gains resistance to the meds, he gets near the edge (e.g., his dementia gets much worse, he gets very sick), and then a new med is available (just at the last minute). And they pull him back with a new med. Then the virus gains resistance to the new med...rinse and repeat.
But this time, H's virologist doesn't know what to do as H's virus is resistant to all the alternative meds. And there aren't any new ones of the immediate horizon.
H is afraid right now and I'm doing what I can to comfort him...to be kind, loving, & helpful. He is uncharacteristically not in denial about what is happening. I've told him that we've been here before (many times) and that it will work out. But I don't believe it...not this time; maybe, I'm just being hopeful that this is the end.
Over the past month or two, I've been doing research on placing H. I've finally come to the clear conclusion that I just can't do this anymore, can't deal with his dementia, the lack of a partner, the work, the burden, the stress. Been here before too. Maybe placement will be easier than I fear, given what is happening to him right now.
The related cycle is: pull him back from the edge with a new med, then after a year or two, the meds are failing and I'm going crazy as his dementia gets worse and he becomes less functional. Then I move to place him. Then he gets on a new med and gets better. This cycle, too, has happened many, many times.
However this round plays out, what I can say is that I'm optimistic for life after H. I've been fantasizing about it and, while you never really know how it will be, I am more than a little excited at finding out what life can be without this burden.
Thursday, March 01, 2012
Detox or wires in the spine
Nothing unusual in the 5 months or so since I've posted last. More of the same. What I can say is changed is my attitude and approach. I’m just trying to be kind and helpful to H, focus on my work, and do things that I enjoy. Not much else I can do, aside from get me a boyfriend, which would likely make it easier still for me to care for H.
H continues his slow decline and is getting more and more frail. Frail as in just not able to do much (dishes, clean up after the bird, put clean clothes away) and hardly ever leaving the house except for Dr. appointments, which of course I take him to. Last year, this time, he was getting out of the house for walks a few times a week in the neighborhood, but now, "I just don't feel well enough to do it." He told me the other day that he thinks that his legs are atrophying (they look like it) because he is either in bed or sits at the computer all day.
His dementia is getting worse too, as expected, ever so slowly and insidiously. Now, long term memory is going more and more (short-term was already gone). No news here really and no stories to recount...I think that I'm so used to it by now that I don't think it remarkable…just the way he is. He stares off into space and can hardly get a out sentence at times. Very hard to have a cogent conversation with him much of the time...he keeps reliving traumatic events in his past and can't stay focused on the "right here, right now." How I crave adult conversation that isn't about his health or his trauma.
He desperately wants to see his dad and sister in another state. And I desperately want him to go for any number of reasons. He put it in motion to go, but finally last night he agreed that he can't...he just doesn't have the stamina. And every time he's gone on one of these trips, he comes back and stays in bed for weeks and sometimes has seizure episodes. Of course, he doesn't remember any of this history.
The current scary thing is that he is topping out on how much pain medication they can give him for his neuropathy. His tolerance is high after 15+ years on narcotics and in any case, you only have so many receptors that the opiates can bind to and reduce the pain. So increasing the dose won't work anymore.
Options for the next time he needs to up the dose: 1) go into in-patient detox, get zero'd out on the narcotics, and begin again with no tolerance & 2) have a spinal stimulator (wire in spine with an electrical charge) to block some, but not all, of the pain. Both seem awful. Needless to say, he is beside himself and terrified of either option. It bothers me too...but this is just one more situation that I have to witness in his long journey downhill. I don't feel fear about it, just sadness and resignation...yet another big health issue.
If there is any gift in all this (and there are gifts), it is that these situations are prompting him and me to have honest, intimate conversations about where he is, the impact on both of our lives, and what we need to plan for without his denial being front and center. Now, I remember these conversations well and cherish them as he is rarely present when discussing tough (well any) topics. I hope that he remembers and cherishes these important moments as well.
H continues his slow decline and is getting more and more frail. Frail as in just not able to do much (dishes, clean up after the bird, put clean clothes away) and hardly ever leaving the house except for Dr. appointments, which of course I take him to. Last year, this time, he was getting out of the house for walks a few times a week in the neighborhood, but now, "I just don't feel well enough to do it." He told me the other day that he thinks that his legs are atrophying (they look like it) because he is either in bed or sits at the computer all day.
His dementia is getting worse too, as expected, ever so slowly and insidiously. Now, long term memory is going more and more (short-term was already gone). No news here really and no stories to recount...I think that I'm so used to it by now that I don't think it remarkable…just the way he is. He stares off into space and can hardly get a out sentence at times. Very hard to have a cogent conversation with him much of the time...he keeps reliving traumatic events in his past and can't stay focused on the "right here, right now." How I crave adult conversation that isn't about his health or his trauma.
He desperately wants to see his dad and sister in another state. And I desperately want him to go for any number of reasons. He put it in motion to go, but finally last night he agreed that he can't...he just doesn't have the stamina. And every time he's gone on one of these trips, he comes back and stays in bed for weeks and sometimes has seizure episodes. Of course, he doesn't remember any of this history.
The current scary thing is that he is topping out on how much pain medication they can give him for his neuropathy. His tolerance is high after 15+ years on narcotics and in any case, you only have so many receptors that the opiates can bind to and reduce the pain. So increasing the dose won't work anymore.
Options for the next time he needs to up the dose: 1) go into in-patient detox, get zero'd out on the narcotics, and begin again with no tolerance & 2) have a spinal stimulator (wire in spine with an electrical charge) to block some, but not all, of the pain. Both seem awful. Needless to say, he is beside himself and terrified of either option. It bothers me too...but this is just one more situation that I have to witness in his long journey downhill. I don't feel fear about it, just sadness and resignation...yet another big health issue.
If there is any gift in all this (and there are gifts), it is that these situations are prompting him and me to have honest, intimate conversations about where he is, the impact on both of our lives, and what we need to plan for without his denial being front and center. Now, I remember these conversations well and cherish them as he is rarely present when discussing tough (well any) topics. I hope that he remembers and cherishes these important moments as well.
Monday, October 24, 2011
Dead weight
As always, life grinds on and on...push the rock up, it rolls down, push it up again (rinse and repeat...).
I wonder about finding meaning in life with all this grinding and rolling. I'm not talking about meaning in the abstract sense, but in the concrete sense of "here is why I get up every morning." This is not depression, mind you...just a heart and mind looking for a mission, for peace, for adult company, for satisfaction, for fun, for an adventure worth having.
H continues to be sort of a mess with a few stays at the hospital since I've last written. Pretty routine seizure (they think) activity. He's still declining although it is slow, almost imperceptible...at least until I see him try to have a conversation with someone. More of the same.
Part of the grind is living with someone I don't want to live with anymore. Over time, I've come to the conclusion that I really don't like H much as he is now. I would prefer not to be around him, to not have to deal with him, to close that chapter in my life. If I could, I would just "wish him into the corn field." (sic)
I've written here about the delusions and the paranoia. Recently, tho', a heap o' narcissism is cropping up and, after all, it is all about him. It is all about people listening to him (which means they must agree with him and do as he says) and of course, if they're struggling, it is because they didn't listen to him. Nothing worse than someone who knows what's good for someone else and has no hesitation in telling them with conviction.
All of this is to say that I generally feel pretty happy (really), but struggle with putting one foot in front of another (with purpose) as I move through time with H. It's hard for me to imagine that I'd place H because I tire of him, because he pisses me off, because I'm tired, because I don't like him anymore, because he is dead weight.
I wonder about finding meaning in life with all this grinding and rolling. I'm not talking about meaning in the abstract sense, but in the concrete sense of "here is why I get up every morning." This is not depression, mind you...just a heart and mind looking for a mission, for peace, for adult company, for satisfaction, for fun, for an adventure worth having.
H continues to be sort of a mess with a few stays at the hospital since I've last written. Pretty routine seizure (they think) activity. He's still declining although it is slow, almost imperceptible...at least until I see him try to have a conversation with someone. More of the same.
Part of the grind is living with someone I don't want to live with anymore. Over time, I've come to the conclusion that I really don't like H much as he is now. I would prefer not to be around him, to not have to deal with him, to close that chapter in my life. If I could, I would just "wish him into the corn field." (sic)
I've written here about the delusions and the paranoia. Recently, tho', a heap o' narcissism is cropping up and, after all, it is all about him. It is all about people listening to him (which means they must agree with him and do as he says) and of course, if they're struggling, it is because they didn't listen to him. Nothing worse than someone who knows what's good for someone else and has no hesitation in telling them with conviction.
All of this is to say that I generally feel pretty happy (really), but struggle with putting one foot in front of another (with purpose) as I move through time with H. It's hard for me to imagine that I'd place H because I tire of him, because he pisses me off, because I'm tired, because I don't like him anymore, because he is dead weight.
Tuesday, July 13, 2010
Snippets again
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.
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.
Monday, May 17, 2010
Why isn't it better?
When H is sickest, needless to say, our relationship declines. He's not cogent, feels awful, and there are other priorities.
But then, when he gets better, he goes on about how our relationship isn't what he wants it to be, that it ought to be better. Yet, he doesn't remember what's happened.
So, I find myself with someone who's been asleep for close to a year and then wakes up and wants their life to be what they want.
And, he can't understand that when he's sick, our relationship is all about me being guardian/caregiver and the last thing on my mind is what is going on with our relationship. I have other concerns, such as, "Is he going to die?"
He'll tell me that he's unhappy about this or that aspect of our time together and while I want to be sympathetic (and I am) to not getting needs met from a relationship, part of me just wants to slap him. "Don't you realize that it's like this because of your health? How can that not have an affect on our lives together?"
"Well, I'm better now," is what he'll say, "so there's nothing to worry about."
Yea, but tell that to person with PTSD. The event is over, but they are irrevocably changed, and not for the better
But then, when he gets better, he goes on about how our relationship isn't what he wants it to be, that it ought to be better. Yet, he doesn't remember what's happened.
So, I find myself with someone who's been asleep for close to a year and then wakes up and wants their life to be what they want.
And, he can't understand that when he's sick, our relationship is all about me being guardian/caregiver and the last thing on my mind is what is going on with our relationship. I have other concerns, such as, "Is he going to die?"
He'll tell me that he's unhappy about this or that aspect of our time together and while I want to be sympathetic (and I am) to not getting needs met from a relationship, part of me just wants to slap him. "Don't you realize that it's like this because of your health? How can that not have an affect on our lives together?"
"Well, I'm better now," is what he'll say, "so there's nothing to worry about."
Yea, but tell that to person with PTSD. The event is over, but they are irrevocably changed, and not for the better
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.
Thursday, April 15, 2010
Back from the brink
A few months ago, H's viral load was 330,000...the second highest that it's ever been. Now, 3 months or so into the next round of new meds, his viral load is 100. Yes, 100, no comma.
Back in December and January, as I have done several times now, I was steeling myself to get hospice involved. And, like before, I made the phone calls and talked with the Drs.
But a few days ago, I came home to a vacuumed house, the beds made, stuff put away, and H making a sandwich for himself. Something is different…and then we got the news about the drastic drop in viral load.
A long-time friend of ours told me yesterday that last Fall and Winter, H was a "zombie" and that it was hard to have a conversation with him. And now, she sees the improvement in H as well.
"You know,, I don't understand how you do it," she says.
"Do what?"
"He's dying, then he's not dying, then he's dying again, then not dying again," she says.
"Yup it's a white-knuckle ride. It's happened so many times I can't even remember them all...and it will happen again, most likely. The doctors don't know and I don't believe them anyway at this point."
"Yea, but how do you do it?"
"Well, it's really hard. I know that I have no control, so that doesn't bother me much anymore. I have a good therapist and I take anti-depressants. But, at the end of the day, I can't change what's happening to H and I accept that."
"Right, but how do you get up every day and do what you do while H goes up and down?" she presses.
"I think that I've compartmentalized a lot of this by now...I've divorced myself in many ways from what's happening with his health and I've divorced myself from romantic feelings for H as a survival tactic. And I don't expect him to get any better...I expect him to get worse...so I'm not disappointed. But, to be honest with you, I don't know how I do it. I just do it because I have to."
While I'm glad that his viral load is down and he's more himself, what really bothers me is that I know he'll go the other way again. And then they'll pull him back again. And that this will drag on and on. And when I indulge this line of thinking, that's when I don't believe I can cope.
Back in December and January, as I have done several times now, I was steeling myself to get hospice involved. And, like before, I made the phone calls and talked with the Drs.
But a few days ago, I came home to a vacuumed house, the beds made, stuff put away, and H making a sandwich for himself. Something is different…and then we got the news about the drastic drop in viral load.
A long-time friend of ours told me yesterday that last Fall and Winter, H was a "zombie" and that it was hard to have a conversation with him. And now, she sees the improvement in H as well.
"You know,
"Do what?"
"He's dying, then he's not dying, then he's dying again, then not dying again," she says.
"Yup it's a white-knuckle ride. It's happened so many times I can't even remember them all...and it will happen again, most likely. The doctors don't know and I don't believe them anyway at this point."
"Yea, but how do you do it?"
"Well, it's really hard. I know that I have no control, so that doesn't bother me much anymore. I have a good therapist and I take anti-depressants. But, at the end of the day, I can't change what's happening to H and I accept that."
"Right, but how do you get up every day and do what you do while H goes up and down?" she presses.
"I think that I've compartmentalized a lot of this by now...I've divorced myself in many ways from what's happening with his health and I've divorced myself from romantic feelings for H as a survival tactic. And I don't expect him to get any better...I expect him to get worse...so I'm not disappointed. But, to be honest with you, I don't know how I do it. I just do it because I have to."
While I'm glad that his viral load is down and he's more himself, what really bothers me is that I know he'll go the other way again. And then they'll pull him back again. And that this will drag on and on. And when I indulge this line of thinking, that's when I don't believe I can cope.
Monday, February 22, 2010
Me too, honey
'Twas talking with H last night at the dinner table about how he's doing. Difficult to get him to talk about this...he's suspicious when I ask about his health and I have to remind him that I'm asking because I care.
H asked me if I wished that he had not stopped taking his anti-virals. I said, "Well, I support whatever decision you make...I told you that. But...."
"Yea, I wished I hadn't stopped taking them, (asingleman's endearding nickname)," H said.
"Yea, I'm worried that they won't work for you, H," I said.
"Well, I'm not worried. If they don't work, then I die. Why does it matter? No one cares, anyway," he said.
"I care, our family cares, lots of friends care. Many, many people love you and would miss you."
"I wish that people would call me or come see me then," H says.
"Me too, honey."
H asked me if I wished that he had not stopped taking his anti-virals. I said, "Well, I support whatever decision you make...I told you that. But...."
"Yea, I wished I hadn't stopped taking them, (asingleman's endearding nickname)," H said.
"Yea, I'm worried that they won't work for you, H," I said.
"Well, I'm not worried. If they don't work, then I die. Why does it matter? No one cares, anyway," he said.
"I care, our family cares, lots of friends care. Many, many people love you and would miss you."
"I wish that people would call me or come see me then," H says.
"Me too, honey."
Monday, 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.
Thursday, July 16, 2009
Why I sleep so much
For years, H has slept a lot…up a few hours in late morning and early evening, but generally in bed the rest of the time. Sometimes he sleeps more and sometimes less, but generally, he's sleeping 18 hours a day or so. When he sleeps more, he's up for a few minutes here and there and then goes back to bed.
When I've asked or said anything about his sleeping, I get a range of answers, usually defensive, which is not what I was trying to achieve:
* Because the meds make me sick and I'd just rather sleep it off
* The pain meds make me so sleepy
* You're an asshole and I prefer not to be around you
* You don't want to be around me
* I'm trying to give you some alone time
When I ask, I'm looking for information about how he is doing. A few days ago, I mentioned that it seems he's sleeping a lot more (up for just a few minutes at a time and I really notice this) and he said, "Well…you can't diagnose me. "
"Oh, honey, I'm not trying to diagnose you, I'm just trying to understand what is happening," I said. "I'm asking because I care."
H said, "Well, I'm just depressed. I'm sick, I feel bad, and you don't want to be with me anymore. So I sleep. Besides, I just love sleeping. I really enjoy my naps…the highlight of my day."
When I've asked or said anything about his sleeping, I get a range of answers, usually defensive, which is not what I was trying to achieve:
* Because the meds make me sick and I'd just rather sleep it off
* The pain meds make me so sleepy
* You're an asshole and I prefer not to be around you
* You don't want to be around me
* I'm trying to give you some alone time
When I ask, I'm looking for information about how he is doing. A few days ago, I mentioned that it seems he's sleeping a lot more (up for just a few minutes at a time and I really notice this) and he said, "Well…you can't diagnose me. "
"Oh, honey, I'm not trying to diagnose you, I'm just trying to understand what is happening," I said. "I'm asking because I care."
H said, "Well, I'm just depressed. I'm sick, I feel bad, and you don't want to be with me anymore. So I sleep. Besides, I just love sleeping. I really enjoy my naps…the highlight of my day."
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."
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, 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."
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....
Wednesday, January 14, 2009
Funhouse
When I was a kid, we used to go to the local carnival and they had a fun house. Dark, twisted hallways, mirrors, smoke, scary heads that pop out from no where, horrible noises...the ususal dark ride stuff. I always hated those because you never knew what was going to happen, but you knew that it was going to scare the **** out of you.
These days, while things are calmer...sense of resignation, perhaps...it still borders on the bizarre from time to time. And I don't know what to expect anymore.
H grabs me in the hallway, really, really upset looking...almost in tears.
"I have something important that I need to talk with you about...it's been bothering me a lot," he says.
I think "Oh boy, is this another relationship conversation?" But what I say instead is, "What's bothering you, honey?"
"Well, I've been watching this movie and the US government really DID cause 9/11 to happen. They let it happen, the b******s. I just knew that it couldn't be the terrorists...the government just wants to control us with fear to advance their agenda...."
OK, so I'll stop there with his narrative on this.
Another time he's visibly shaken and is telling me that he's having nightmares. So we are talking about that and then he starts telling me about watching CSI shows and shows on serial killers. And while he won't watch a horror or ghost movie with me like we used to (or even a tense movie at all with me because he "has enough nightmares"), he's clearly obsessing on death these days. And in some ways, he needs to confront it...even if on TV.
I'm finally learning to just hear what he has to say, not have any pre-conceived notions in my head about what he's going to say, and to not cut him off. The only way I know what is happening with him is if I get the unfiltered story. And so, I've shifted my internal monologue from "Oh, God, what is the issue now" to "I wonder what he's thinking." And when he says something, I just try to have an open mind and listen.
Keeps me saner.
But I really never know what to expect: it ranges from outright rage at simple things ("Dammit, you put WAAAAY too much food out for the dogs (insert much yelling about how I never listen to him)"), to complete contradictions in a single sentence, to multiple shows on serial killers (e.g, movies about them or documentaries about them) on the DVR, to a whimpering puddle at the thought of a government conspiracy.
Another step in my acceptance is that I just need to think of him as a child...sometimes they rant, they cry, are mad, are lost in fantasy land, or scare themselves silly.
Truth be told, it scares me too.
These days, while things are calmer...sense of resignation, perhaps...it still borders on the bizarre from time to time. And I don't know what to expect anymore.
H grabs me in the hallway, really, really upset looking...almost in tears.
"I have something important that I need to talk with you about...it's been bothering me a lot," he says.
I think "Oh boy, is this another relationship conversation?" But what I say instead is, "What's bothering you, honey?"
"Well, I've been watching this movie and the US government really DID cause 9/11 to happen. They let it happen, the b******s
OK, so I'll stop there with his narrative on this.
Another time he's visibly shaken and is telling me that he's having nightmares. So we are talking about that and then he starts telling me about watching CSI shows and shows on serial killers. And while he won't watch a horror or ghost movie with me like we used to (or even a tense movie at all with me because he "has enough nightmares"), he's clearly obsessing on death these days. And in some ways, he needs to confront it...even if on TV.
I'm finally learning to just hear what he has to say, not have any pre-conceived notions in my head about what he's going to say, and to not cut him off. The only way I know what is happening with him is if I get the unfiltered story. And so, I've shifted my internal monologue from "Oh, God, what is the issue now" to "I wonder what he's thinking." And when he says something, I just try to have an open mind and listen.
Keeps me saner.
But I really never know what to expect: it ranges from outright rage at simple things ("Dammit, you put WAAAAY too much food out for the dogs (insert much yelling about how I never listen to him)
Another step in my acceptance is that I just need to think of him as a child...sometimes they rant, they cry, are mad, are lost in fantasy land, or scare themselves silly.
Truth be told, it scares me too.
Tuesday, December 09, 2008
Burnout = divorce
During dinner last night, I was chatting with H and he was after me for my "flat, sarcastic delivery" about how much Christmas costs every year and how I'm trying to manage that down for this year.
I said that I didn't mean to be sarcastic, but I'm just tired and burned out.
He looks at me intently and says, "Well, we should just get a divorce." And he goes on from there about an attorney, selling the house, whatever....blah, blah, blah.
I said in a flat, tho', not sarcastic voice, "Well, if that's what you want." Truth be told, at least this would be one way out of this mess.
He flies into another tirade about something related to whatever, whereby I get up from the dining room table and walk away.
What's striking to me is that this is the same M.O. that his family has: whenever I raise my experience and my struggles with caring for H, I get the consistent comment, (sigh) "Well, I guess that means divorce then."
While I understand that no one in the family will take H, what I don't understand is how little empathy there is for my struggles caring for him.
Why is it that saying something is hard for me causes these folks to jump to divorce?
Perhaps this is all just their guilt, but I think that the motives are much more pedestrian: money. They all know that I support H and without me, who will or can? If it's labelled divorce, then maybe he or they get a settlement?
Later in the evening, H is all mopey and affectionate. After a bit of TV, I go off to bed in the guest room.
At this point, I have to confess that I don't care much anymore, really.
I said that I didn't mean to be sarcastic, but I'm just tired and burned out.
He looks at me intently and says, "Well, we should just get a divorce." And he goes on from there about an attorney, selling the house, whatever....blah, blah, blah.
I said in a flat, tho', not sarcastic voice, "Well, if that's what you want." Truth be told, at least this would be one way out of this mess.
He flies into another tirade about something related to whatever, whereby I get up from the dining room table and walk away.
What's striking to me is that this is the same M.O. that his family has: whenever I raise my experience and my struggles with caring for H, I get the consistent comment, (sigh) "Well, I guess that means divorce then."
While I understand that no one in the family will take H, what I don't understand is how little empathy there is for my struggles caring for him.
Why is it that saying something is hard for me causes these folks to jump to divorce?
Perhaps this is all just their guilt, but I think that the motives are much more pedestrian: money. They all know that I support H and without me, who will or can? If it's labelled divorce, then maybe he or they get a settlement?
Later in the evening, H is all mopey and affectionate. After a bit of TV, I go off to bed in the guest room.
At this point, I have to confess that I don't care much anymore, really.
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