As I've mentioned here before, one of the hardest aspects of H's illness is that he's just not there for me anymore. There as in emotionally there, able to support me as I watch him slowly fade out, watch him die slowly. He's in so much denial and dementia that he just thinks I'm overreacting and that everything is "fine," especially since the new anti-viral meds seem to be helping him (e.g., he's thinking better, he feels more energetic).
At one point (many years ago now), he was strong enough to be there for me, but cannot do that anymore as the support I need is about him and what is happening to him.
Yup, the meds are pulling him back from the brink again, but that doesn't change a lot for me…he's still got dementia, delusions, and poor health and mostly it just means (I'm sorry to say) that this whole thing drags out longer. I guess I should feel relief, but I don't.
But I find it hard to be there for him too. Last night, he was talking with me about how he's not sleeping well, how much his chest hurts (a known med side effect), that he feels nauseous, that his feet hurt, he's wobbly when he walks, he's very tired, and on and on and on. I told him that I'm sorry that he has so much to deal with and that he has gotten more than his fair share of health issues and that I wish it were different.
But I couldn't bring myself to hug him or tell him that I love him (even tho' I do) or that it will be all right….because deep down I know that it will never be all right. My truth is that it is NOT all right and it won't ever be again...it can't be for me, anyway.
And so, like he can't be there for me in a way that helps me, I can't be there for him in the way that I want to either. This is just one of the many reasons why placement made so much sense.
I wonder if I'm strong enough to be his man (for however long this takes).
Wednesday, March 26, 2008
Thursday, March 20, 2008
Embrace the sorrow
I've been struggling with grief for a long time. You folks hear it here and get more than anyone with the exception of my shrink.
I experience the sadness as a pack of dogs chasing me down the hallway and I manage to close the door, keeping them out. But they claw and claw and don't go away. Maybe I open the door a crack and toss them a bone (sic), but that only buys a few seconds and then there they are, clawing again. My only choice is to try to keep that door closed or go out the window...but there isn't one.
Grief has been a longtime companion for me, even before H got so sick. (Long story here, but I will spare all of you why I've carried a big ole bag o' grief since childhood.)But once he got so sick, the intensity has predictably risen.
So, I've tried to ignore it, medicate it away in a variety of ways, placate it, embrace a variety of addictive behaviors, deny it, and just generally not face it. Needless to say, this hasn't been an entirely successful and has cost me dearly in many, many ways.
I've been reading a great site, urbanmonk.net, which, among other things, encourages us to face our fears, grief, and other negative emotions, thus depriving them of their power over us. Embrace it and it loses its power.
What to do? Just feel the grief when it comes; don't try to medicate it away. Easy enough to say, but hard, at least, for me to do. How do I prompt the feelings when it is safe to do so? I mean, I can't just burst into tears at work (although I have) and H can't deal with me crying anymore…he feels helpless, as helpless as I feel about his health issues. And I only see my shrink once a week.
But there are so many sad songs about loss. I'm such a sucker for a sad song. Two of my favorite sad ones are a Diana Krall Live in Paris version of "Maybe You'll be There" and "Missing" by Everything but the Girl.
So, I’m listening to "Missing" while H is in the shower and I'm getting all teary.
Just as the plaintiff chorus comes, "And I miss you…oh... like the deserts miss the rain," H comes out of the shower, naked, and I see his silhouette coming out of the bathroom at the end of the dark hallway. He's using his cane to navigate the doorway and hallway corners. Shrunken legs, big distended belly, sunken chest, bouncing off the door jam, almost not catching himself, almost falling.
Like the deserts miss the rain.
I experience the sadness as a pack of dogs chasing me down the hallway and I manage to close the door, keeping them out. But they claw and claw and don't go away. Maybe I open the door a crack and toss them a bone (sic), but that only buys a few seconds and then there they are, clawing again. My only choice is to try to keep that door closed or go out the window...but there isn't one.
Grief has been a longtime companion for me, even before H got so sick. (Long story here, but I will spare all of you why I've carried a big ole bag o' grief since childhood.)
So, I've tried to ignore it, medicate it away in a variety of ways, placate it, embrace a variety of addictive behaviors, deny it, and just generally not face it. Needless to say, this hasn't been an entirely successful and has cost me dearly in many, many ways.
I've been reading a great site, urbanmonk.net, which, among other things, encourages us to face our fears, grief, and other negative emotions, thus depriving them of their power over us. Embrace it and it loses its power.
What to do? Just feel the grief when it comes; don't try to medicate it away. Easy enough to say, but hard, at least, for me to do. How do I prompt the feelings when it is safe to do so? I mean, I can't just burst into tears at work (although I have) and H can't deal with me crying anymore…he feels helpless, as helpless as I feel about his health issues. And I only see my shrink once a week.
But there are so many sad songs about loss. I'm such a sucker for a sad song. Two of my favorite sad ones are a Diana Krall Live in Paris version of "Maybe You'll be There" and "Missing" by Everything but the Girl.
So, I’m listening to "Missing" while H is in the shower and I'm getting all teary.
Just as the plaintiff chorus comes, "And I miss you…oh... like the deserts miss the rain," H comes out of the shower, naked, and I see his silhouette coming out of the bathroom at the end of the dark hallway. He's using his cane to navigate the doorway and hallway corners. Shrunken legs, big distended belly, sunken chest, bouncing off the door jam, almost not catching himself, almost falling.
Like the deserts miss the rain.
Thursday, March 13, 2008
Just to get your attention
Last night, I was talking with H about what will happen on those nights when I'm travelling or have to work late. Both will be happening more and more as I change jobs (hopefully soon). Or even after a long day and I’m too tired to make the 30 minute meals I usually do.
Lots of options for 2 - 3 nights a week: have someone come in and cook, more frozen foods (bleh), easier meals (think spaghetti, canned things), etc. He doesn't like the latter two options.
H keeps going on about how he wants to help me, but I "push him away." Well, I'm nervous about him chopping with large knives and he can't really measure, so little help on the prep. He gets confused about the steps, so he can't make the food. I ask him to set the table and he's not certain how to do it sometimes.
This is why I have given him just two jobs at home: make certain the kitchen is clean so I can make dinner and feed the dogs at night so we can have dinner in peace. He struggles to do these two things and I often have to prompt him or do them myself.
"OK, if you want to help, have dinner ready for me when I get home a few nights a week, then, " I say, "surprise me."
"Well, I can go out to dinner when you travel," he says looking at the ground.
"OK, sure, but why can't you make a simple dinner? You make breakfast and lunch sometimes," I ask, pressing him.
Long, long pause.
"Because I don't have a brain anymore; dinner is too complicated." He's crying now.
"Oh honey, I'm sorry, I'm just trying to understand. OK, so it's just too hard…that helps a lot. I just wanted to make certain that I understood what was happening. Awhile ago, you told me that you wanted me to cook just to get my attention," I say. True, we had this conversation a few months ago.
He looked very confused, hurt, and said, "What? I said that? I never said that; that's not true."
"OK, honey. Dinner's ready."
Lots of options for 2 - 3 nights a week: have someone come in and cook, more frozen foods (bleh), easier meals (think spaghetti, canned things), etc. He doesn't like the latter two options.
H keeps going on about how he wants to help me, but I "push him away." Well, I'm nervous about him chopping with large knives and he can't really measure, so little help on the prep. He gets confused about the steps, so he can't make the food. I ask him to set the table and he's not certain how to do it sometimes.
This is why I have given him just two jobs at home: make certain the kitchen is clean so I can make dinner and feed the dogs at night so we can have dinner in peace. He struggles to do these two things and I often have to prompt him or do them myself.
"OK, if you want to help, have dinner ready for me when I get home a few nights a week, then, " I say, "surprise me."
"Well, I can go out to dinner when you travel," he says looking at the ground.
"OK, sure, but why can't you make a simple dinner? You make breakfast and lunch sometimes," I ask, pressing him.
Long, long pause.
"Because I don't have a brain anymore; dinner is too complicated." He's crying now.
"Oh honey, I'm sorry, I'm just trying to understand. OK, so it's just too hard…that helps a lot. I just wanted to make certain that I understood what was happening. Awhile ago, you told me that you wanted me to cook just to get my attention," I say. True, we had this conversation a few months ago.
He looked very confused, hurt, and said, "What? I said that? I never said that; that's not true."
"OK, honey. Dinner's ready."
Friday, March 07, 2008
Oh, what a busy day I've had, redeux
I've been thinking a lot about my last post, my own inner turmoil, and what I can do to make it better for myself.
I get all resentful on H when I have to make up all the slack. Well, my expectation is that he help me, that he is able to do his part. But he can't. Simple, change my expectation that he can help. If I don’t' expect him to, I won't be disappointed. But I'm still struggling to erase 25 years of expectations that I have for him participating in this life with me.
So while H's busy day doesn't compare to mine, the fact is that I'm not dying of AIDS and he is. So, for him, it is a very, very busy day that is hard for him to do because he feels so sick so much of the time.
And yes, there is the burden part: the fact that I have to do certain things, such as audit his meds, that I wouldn't have to do if he weren't so sick. And that I see him so sick and that takes a toll on me.
What it really nets out to is that the resentment and other things that I do and feel are just masking my sorrow. The sadness that comes from watching someone you love slip and slip and slip. And then when you think it can't slip anymore, it does (and then some).
The hardest part about the sorrow is that I don't feel that I can share it with the one I most need to: that being H. (Oh, and for how bloody long I've been carrying this sorrow.) When I've been most upset and tried to share my grief with H, he drops into one of his family's scripts (the same ones that they used on me last Fall when I was trying to place H):
Criticize: you must be doing something wrong, you're thinking about it the wrong way
Minimize: well at least I'm not in the hospital right now, I can help more than you let me
Discount: I'm not dying - so there's no reason to be sad
Guilt: what am I supposed to do about it, why can't you deal with it?
What I really, really want to hear is: "I'm sorry that this is so hard for you" and to cry with me. That's it. Some sympathy would go a long, long way. Empathy would be better, but unlikely.
See, there I go again: needing something from him. How do you "unneed" someone?
Wednesday, March 05, 2008
Oh, what a busy day I've had
Work continues to ramp up for me and I'm home less and less these days. OK with me as I appreciate the er ah, stimulation. But of course it is stressful for H for me to be gone so much.
As a result, he's had to do more himself. Now, I don't mean stuff like paint the house, but stuff like take care of medication refills, getting to Dr. appointments on his own, dealing with workers at our house as they wrap up some projects, and maybe the occasional trip to the store or McDonald's.
So I get home after a 10 - 12 hour day and I'm pooped. It's dinner time and I am the cook, so I start on that.
"How's your day?" H asks.
"Busy, filled with fire drills. It was fine, tho'. Just work."
"Mine was really busy: got up, made breakfast…(long pause as something loud came on the TV)…set up my pills...took my pills, played with the dog…have you treated them for fleas yet?... went to the pharmacy…(another long pause…30 seconds or so)...felt sick, watched TV, and took a nap, made a sandwich, then another nap…." H says.
"Wow that's a lot," I say.
And it is, for him. But for me…that sounds like a day off, especially the nap parts.
I struggle with my feelings of resentment driven by feeling overwhelmed at having to take care of the entire household and work - and with my grief at losing my partner bit by bit.
The hardest part is that there is no way that he can understand just how difficult it is for me, what I have to do everyday, or how much he continues to slip and I have to pick up any slack.
So, he can't understand and his family is cluelessly in denial. Sheesh.
Realistically, what can he do about it anyway?
Wish I had something insightful to say about it, but it just keeps droning on - grinding on me - and I don't see any relief here. No wonder I got so burned out last Fall. Now, I can get all self-help here and say that it's how I saw it, not what it is. But I know that's not true.
As a result, he's had to do more himself. Now, I don't mean stuff like paint the house, but stuff like take care of medication refills, getting to Dr. appointments on his own, dealing with workers at our house as they wrap up some projects, and maybe the occasional trip to the store or McDonald's.
So I get home after a 10 - 12 hour day and I'm pooped. It's dinner time and I am the cook, so I start on that.
"How's your day?" H asks.
"Busy, filled with fire drills. It was fine, tho'. Just work."
"Mine was really busy: got up, made breakfast…(long pause as something loud came on the TV)…set up my pills...took my pills, played with the dog…have you treated them for fleas yet?... went to the pharmacy…(another long pause…30 seconds or so)...felt sick, watched TV, and took a nap, made a sandwich, then another nap…." H says.
"Wow that's a lot," I say.
And it is, for him. But for me…that sounds like a day off, especially the nap parts.
I struggle with my feelings of resentment driven by feeling overwhelmed at having to take care of the entire household and work - and with my grief at losing my partner bit by bit.
The hardest part is that there is no way that he can understand just how difficult it is for me, what I have to do everyday, or how much he continues to slip and I have to pick up any slack.
So, he can't understand and his family is cluelessly in denial. Sheesh.
Realistically, what can he do about it anyway?
Wish I had something insightful to say about it, but it just keeps droning on - grinding on me - and I don't see any relief here. No wonder I got so burned out last Fall. Now, I can get all self-help here and say that it's how I saw it, not what it is. But I know that's not true.
Monday, March 03, 2008
Take a deep breath
I'm busily working away these days. Got me a new manager (4th one in a year) who is new to the company. I have not yet jumped to another group…waiting for the machine to move according to the rhythms of glacial time.
H sleeps and sleeps - lots of issues with his sleep apnea . Now, Drs. tell us that his apnea is not simple (of course), but is central nervous system apnea. Basically, it means that his brain isn't telling his body to breath. Most likely caused by a combination of the narcotics that he takes for pain and the damage to his nervous system by the virus and PML.
So, H has a new sleep apnea machine that is more like a ventilator than not. It not only pushes air into his lungs, it helps him exhale it too. Sigh. Noisy thing it is, too.
Now, I've noticed him not breathing on his own more and more while awake…almost like he is holding his breath and he's not aware of it, he says. But after a moment or two, he gasps and takes a breath in.
If it isn't one thing….
In the first week or so my new manager was here, I was talking with her about leaving the group. Needless to say, I'm ready to go to another job and my current management is just as ready to see me go.
But I was taken aback by two questions from my new manager about H: 1) how old is he? 2) and what's wrong with him? I was very uncomfortable with this line of questioning, as you can imagine.
Now, I've had a variety of managers in the past 3+ years since H got much sicker, but I've never had anyone ask me those questions. They've asked me how is it going, how's H (for those who know his name). Generally, tho', I don’t get asked by management, which is fine by me.
Within the next week, my manager was standing in the doorway of my office. She asked me loudly about "that short, Asian woman" she saw me with. My office is a megaphone and so the whole hallway heard.
Needless to say, I've contacted the HR department.
H sleeps and sleeps - lots of issues with his sleep apnea . Now, Drs. tell us that his apnea is not simple (of course), but is central nervous system apnea. Basically, it means that his brain isn't telling his body to breath. Most likely caused by a combination of the narcotics that he takes for pain and the damage to his nervous system by the virus and PML.
So, H has a new sleep apnea machine that is more like a ventilator than not. It not only pushes air into his lungs, it helps him exhale it too. Sigh. Noisy thing it is, too.
Now, I've noticed him not breathing on his own more and more while awake…almost like he is holding his breath and he's not aware of it, he says. But after a moment or two, he gasps and takes a breath in.
If it isn't one thing….
In the first week or so my new manager was here, I was talking with her about leaving the group. Needless to say, I'm ready to go to another job and my current management is just as ready to see me go.
But I was taken aback by two questions from my new manager about H: 1) how old is he? 2) and what's wrong with him? I was very uncomfortable with this line of questioning, as you can imagine.
Now, I've had a variety of managers in the past 3+ years since H got much sicker, but I've never had anyone ask me those questions. They've asked me how is it going, how's H (for those who know his name). Generally, tho', I don’t get asked by management, which is fine by me.
Within the next week, my manager was standing in the doorway of my office. She asked me loudly about "that short, Asian woman" she saw me with. My office is a megaphone and so the whole hallway heard.
Needless to say, I've contacted the HR department.
Wednesday, February 27, 2008
Living your life for me
Wow, so much has happened since I've posted last. I'm happily back to working full time and work is going well for the first time in a long time. My emotional state is better, although I've always got this resignation, this resentment, burbling just below my surface.
H is doing well, although still sleeping a lot; his new anti-viral meds seem to be helping him. He's been on the new meds now for a month or so and I can already see changes in him. He's thinking more clearly and able to help with projects going on at the house. Conversations are mostly less bizarre…although he does have his moments.
What was most striking was a Valentine's Day card that I got from him. Not the card itself, but the thank you he wrote inside, "Thank You for Living Your Life for Me." I was struck by the thank you and the (seeming) acknowledgement of what it costs me.
Maybe I underestimate his understanding sometimes. Maybe I just don't believe it sometimes.
Nonetheless, I'll take the thank you and think about whether it's really true.
H is doing well, although still sleeping a lot; his new anti-viral meds seem to be helping him. He's been on the new meds now for a month or so and I can already see changes in him. He's thinking more clearly and able to help with projects going on at the house. Conversations are mostly less bizarre…although he does have his moments.
What was most striking was a Valentine's Day card that I got from him. Not the card itself, but the thank you he wrote inside, "Thank You for Living Your Life for Me." I was struck by the thank you and the (seeming) acknowledgement of what it costs me.
Maybe I underestimate his understanding sometimes. Maybe I just don't believe it sometimes.
Nonetheless, I'll take the thank you and think about whether it's really true.
Thursday, January 31, 2008
Living with courage
Back at work less than a week now. As I've written before, I just let H and all his issues become too central to my life and it cost me dearly.
What I've realized now is that I've just been waiting for him to die in order for me to start thinking about and acting on creating that new life, post H, for myself. This in spite of the fact that he's dying now, albeit slowly.
One example of this is that I've shied away from management roles ever since H got sick, but even more so in the past 3 - 5 years or so. Why? Fear. Fear that I won't be able to handle the job because of issues with H and all that. One side effect of this is that I resent H for "holding me back," which isn't fair as it has been me all along.
But I've always loved managing teams and, if I do say so myself, I've been successful at it. And I've done it off and on for 20 years.
And so upon my return (and much to my surprise), I'm being recruited for a management job (which I WILL take) in the team that I talked with last year.
Well, the web is a wonderful and evil place and I found a great article about making the choice to make choices as though you have no fear. (This whole site is awesome, BTW.)
As part of my getting ready for live after H, I have to have courage (taking action in spite of fear) and pursue things that are a scary. Whatever happens, I know that I can deal with it.
After spending so much time with H the past few months (and years), I've just down shifted to meet his level and have been kinda stuck there.
Now that I'm back at work and not burned out eanymore, wow…people here are really smart and I've missed that. I find it incredibly energizing, exciting, and yes, scary.
The sad thing about all this is as I re-engage and do my best to go after whole heartedly what I want, it is much clearer just how far H is lagging. Happily, going for what I want makes it easier for me to keep H's issues in their proper place in my life.
I have this picture in my head of me accelerating into my life ahead and him decelerating, stumbling and falling. While I know that he is excited for me and my new position, he's worried that I won't be around so much anymore. And it's even more obvious to both of us just how far behind he is falling.
The challenge is not just to act with courage, but to also act with compassion since he can't keep up anymore.
What I've realized now is that I've just been waiting for him to die in order for me to start thinking about and acting on creating that new life, post H, for myself. This in spite of the fact that he's dying now, albeit slowly.
One example of this is that I've shied away from management roles ever since H got sick, but even more so in the past 3 - 5 years or so. Why? Fear. Fear that I won't be able to handle the job because of issues with H and all that. One side effect of this is that I resent H for "holding me back," which isn't fair as it has been me all along.
But I've always loved managing teams and, if I do say so myself, I've been successful at it. And I've done it off and on for 20 years.
And so upon my return (and much to my surprise), I'm being recruited for a management job (which I WILL take) in the team that I talked with last year.
Well, the web is a wonderful and evil place and I found a great article about making the choice to make choices as though you have no fear. (This whole site is awesome, BTW.)
As part of my getting ready for live after H, I have to have courage (taking action in spite of fear) and pursue things that are a scary. Whatever happens, I know that I can deal with it.
After spending so much time with H the past few months (and years), I've just down shifted to meet his level and have been kinda stuck there.
Now that I'm back at work and not burned out eanymore, wow…people here are really smart and I've missed that. I find it incredibly energizing, exciting, and yes, scary.
The sad thing about all this is as I re-engage and do my best to go after whole heartedly what I want, it is much clearer just how far H is lagging. Happily, going for what I want makes it easier for me to keep H's issues in their proper place in my life.
I have this picture in my head of me accelerating into my life ahead and him decelerating, stumbling and falling. While I know that he is excited for me and my new position, he's worried that I won't be around so much anymore. And it's even more obvious to both of us just how far behind he is falling.
The challenge is not just to act with courage, but to also act with compassion since he can't keep up anymore.
Thursday, January 24, 2008
It's going to be OK
I return to work next week after being on Family Medical Leave for the past 3 months. I'm looking forward to the intellectual stimulation and challenges.
My batteries are recharged at this point, but I'm anxious about burning out again given H's chronic health issues, his dementia and the craziness that it brings, and my own stamina. The sad thing is that I'll likely need to go on leave again at some point in the future, soon I think.
H sleeps a lot these days and I can't imagine what it would be like to only see the world in a few hours a day and to be stuck at home most of the time. He's been sleeping more (!) recently and is literally only up 2 - 3 hours a day from being up 4 - 6 hours a day. He notices it…that's a big percentage change for him.
I've become more concerned about his dementia as I've spent more time with him the last few months. Some very strange conversations…such as the neighbor is scheming to create an issue with our joint property line (unlikely), but that it's a big deal and needs to be urgently addressed (not so much). Then he suddenly tells me that there isn't an issue at all, that he made it up…he thinks...but maybe there's and issue...I've never trusted (our neighbor) anyway.
OK, time to put on my patience hat. But I didn't...I'm still tyring to find it.
While I won't repeat what I said, I did tell him two things: I'm having a hard time believing what he says anymore and that I'll take care of the whatever issue may come up and that it will be OK.
"Do you trust me to take care of it?" "Yes."
In retrospect, he was genuinely afraid that there would be a problem. I could see it in his face. There was so much drama about the issue…he's always been kinda high drama, but there's little modulation on it now. It comes across as abject terror.
Only when I told him that I will take care of it and it will be OK did he calm down. He so needs me to help him, especially with his worries. How sad that my once so very brave man is now so afraid.
I need to tell myself that it's going to be OK more as well. Well, it's not OK that he is going to die, but it will be OK for me after he is gone.
But for now, the only thing that I can change is how I react to what is happening.
My batteries are recharged at this point, but I'm anxious about burning out again given H's chronic health issues, his dementia and the craziness that it brings, and my own stamina. The sad thing is that I'll likely need to go on leave again at some point in the future, soon I think.
H sleeps a lot these days and I can't imagine what it would be like to only see the world in a few hours a day and to be stuck at home most of the time. He's been sleeping more (!) recently and is literally only up 2 - 3 hours a day from being up 4 - 6 hours a day. He notices it…that's a big percentage change for him.
I've become more concerned about his dementia as I've spent more time with him the last few months. Some very strange conversations…such as the neighbor is scheming to create an issue with our joint property line (unlikely), but that it's a big deal and needs to be urgently addressed (not so much). Then he suddenly tells me that there isn't an issue at all, that he made it up…he thinks...but maybe there's and issue...I've never trusted (our neighbor) anyway.
OK, time to put on my patience hat. But I didn't...I'm still tyring to find it.
While I won't repeat what I said, I did tell him two things: I'm having a hard time believing what he says anymore and that I'll take care of the whatever issue may come up and that it will be OK.
"Do you trust me to take care of it?" "Yes."
In retrospect, he was genuinely afraid that there would be a problem. I could see it in his face. There was so much drama about the issue…he's always been kinda high drama, but there's little modulation on it now. It comes across as abject terror.
Only when I told him that I will take care of it and it will be OK did he calm down. He so needs me to help him, especially with his worries. How sad that my once so very brave man is now so afraid.
I need to tell myself that it's going to be OK more as well. Well, it's not OK that he is going to die, but it will be OK for me after he is gone.
But for now, the only thing that I can change is how I react to what is happening.
Friday, January 11, 2008
Driving blind
It started with a talk about his depression.
He told me that I am in his way. And I told him that he is in mine. Sigh.
Not only is in he in my way, but I don't even know what my way is. (I didn't tell him this.)
While life may be a highway that you travel blind, there's a giant truck in front of me, blocking my view (of (likely) all the brake lights ahead).
I think that I have focused too much on him and his issues. Over 60% of placements happen because of caregiver exhaustion. Yup, I was there. And I was there because his issues and care had taken center stage in my life. It's hard because I care deeply, but that doesn't mean I have to make his issues so large in my life. Hmmmm, I believe I lost me my perspective and it cost me dearly.
I told him that I know that he would make it better if he could. Just like I would.
In any case, the cost to me is so very high. And it's all drama that gets in the way of me doing what I need to do, sucks the life out of me.
I need to start my work now to get him into his proper place (sic)…but he gets all the attention and I need to change that. All of my energy has been going to him, my horror and grief over what I'm seeing is draining me. And if I'm not careful, I'll find him dead and me not having laid the groundwork to go on afterwards.
Now, if I could just see around that truck.... In the meantime, how about listening to the radio and making the best use of the time I have.
He told me that I am in his way. And I told him that he is in mine. Sigh.
Not only is in he in my way, but I don't even know what my way is. (I didn't tell him this.)
While life may be a highway that you travel blind, there's a giant truck in front of me, blocking my view (of (likely) all the brake lights ahead).
I think that I have focused too much on him and his issues. Over 60% of placements happen because of caregiver exhaustion. Yup, I was there. And I was there because his issues and care had taken center stage in my life. It's hard because I care deeply, but that doesn't mean I have to make his issues so large in my life. Hmmmm, I believe I lost me my perspective and it cost me dearly.
I told him that I know that he would make it better if he could. Just like I would.
In any case, the cost to me is so very high. And it's all drama that gets in the way of me doing what I need to do, sucks the life out of me.
I need to start my work now to get him into his proper place (sic)…but he gets all the attention and I need to change that. All of my energy has been going to him, my horror and grief over what I'm seeing is draining me. And if I'm not careful, I'll find him dead and me not having laid the groundwork to go on afterwards.
Now, if I could just see around that truck.... In the meantime, how about listening to the radio and making the best use of the time I have.
Tuesday, January 01, 2008
Horoscope
I believe at least some in astrology, especially when I see a horoscope like this today:
Tuesday, January 1, 2008
"You may think that your opportunity has passed, but this is just a trick that the cosmos is playing on you now. You have entered into a time warp, so don't think that your chance is over. Let your frustrations dissipate, for you'll have another shot at what you want in the months ahead. "
I feel so much better now.
Happy new year!
Tuesday, January 1, 2008
"You may think that your opportunity has passed, but this is just a trick that the cosmos is playing on you now. You have entered into a time warp, so don't think that your chance is over. Let your frustrations dissipate, for you'll have another shot at what you want in the months ahead. "
I feel so much better now.
Happy new year!
Monday, December 31, 2007
3 goals, just 3 seemingly impossible goals
More visits from friends over the holidays. Our long-term friends give me the benefit of the doubt and want to have a conversation with me about where H is at. Those who see H regularly are very worried about him and see what I see. Those who don't are wondering WTF?
And so I am bringing some of them up to speed with my 3 goals and let's be realistic, he's dying…slowly. Yup, new meds…who knows how long. Been here before…death's doorstep and then a magic recovery. I will believe it when I see it.
And so I am bringing some of them up to speed with my 3 goals and let's be realistic, he's dying…slowly. Yup, new meds…who knows how long. Been here before…death's doorstep and then a magic recovery. I will believe it when I see it.
My three goals are to do the best I can to ensure:
- His well being, so that he gets the medical and mental health care that he needs (as well as the practical things, like food and shelter)
-My well being, so that I can work and be emotionally more stable that I've been (maybe even find a way to enjoy life again)
-The well being of our relationship (I am rapidly giving up that there is any hope here at all and it breaks my heart)
I don't see how to solve the equation for all three goals here. Solving for one of these is hard enough. Right now, I can't seem to figure out how to address any of these.
In any case, it is just more of the same: more drama, more drama and I don't get a benefit from it. And it's all drama that gets in the way of me doing what I need to do so that my life works for me.
Issues about H consume my life (there is so much to do and so little payback), my emotional energy, and dare I say even my well being. My choices are to try to minimize what it costs me (in some way that I don't understand) while he is still here, get him placed (hope waning now), divorce him or him me, or just disappear, which seems remarkably appealing at this moment.
Regardless of how this plays out, I do know that I am done having this cost me so much, but I don't know what to do about that. I wish that I could just make it stop.
Friday, December 28, 2007
Hey, come take a look at this
A good friend of ours, M, came over for a visit and dinner tonight. She has known H and me since the early 80's. It was so wonderful to spend an evening with her.
H felt too ill to be up for very long and went to take a nap for a few hours.
M and I talked about where H is and what has been going on for the past few months. I assumed that H had told her what was going on, but she had no idea what was happening with the whole placement issue, his family's reaction, and my break from work. She did say that H had told her that he hadn't been feeling all that well recently (not news).
I really needed her support after being kicked (while down) by H's family, and, since I've known her for a long time, I trust her judgment. She and H had spent a fair amount of time together recently and she had stories about some odd behavior and some even odder delusions. She expressed a lot of concern about H's decline the past year or so. Yup, I see it too. I'm worried and sad too.
I was talking with her about H's family reactions to placement and all that, about how they think he is fine and able to live on his own. I was relieved to hear her say, "But he is dying, they just don't see it. It's just taking awhile and they don't see him reguarly and he tells them that he is OK, but we know he's not."
Yes. Thank you so much for your honesty and especially your courage, my friend.
I talked with her about my struggles to handle this with love for H and gather his family around him. But instead I get denial and guilt. So, I told her that instead of me worrying about his family anymore, I'm just going to focus on me and doing the right thing for H. They will either come around or not.
She had a great idea: since his family is unaware of how he really is doing all of the time, I should send out a weekly or so email that briefly outlines how he is doing. How much he's been sleeping, how he's functioning, and when necessary, lab results, any special events that happen.
I'm going to try this, but I have to hard sell this to myself as just trying to improve communication with his family…even tho' I'm still steamed at them. M's take is that after a few months of this email newsletter, their denial may begin to crack. Who knows.
I've written about forgiveness being essential…and here is a lesson for me too. I need to forgive them for their anger, guilt, and fear (I have these too) and help them see what is happening with H. And to get them to the table to talk about where H really is and how to be there for him as he makes this transition, whenever that happens.
H felt too ill to be up for very long and went to take a nap for a few hours.
M and I talked about where H is and what has been going on for the past few months. I assumed that H had told her what was going on, but she had no idea what was happening with the whole placement issue, his family's reaction, and my break from work. She did say that H had told her that he hadn't been feeling all that well recently (not news).
I really needed her support after being kicked (while down) by H's family, and, since I've known her for a long time, I trust her judgment. She and H had spent a fair amount of time together recently and she had stories about some odd behavior and some even odder delusions. She expressed a lot of concern about H's decline the past year or so. Yup, I see it too. I'm worried and sad too.
I was talking with her about H's family reactions to placement and all that, about how they think he is fine and able to live on his own. I was relieved to hear her say, "But he is dying, they just don't see it. It's just taking awhile and they don't see him reguarly and he tells them that he is OK, but we know he's not."
Yes. Thank you so much for your honesty and especially your courage, my friend.
I talked with her about my struggles to handle this with love for H and gather his family around him. But instead I get denial and guilt. So, I told her that instead of me worrying about his family anymore, I'm just going to focus on me and doing the right thing for H. They will either come around or not.
She had a great idea: since his family is unaware of how he really is doing all of the time, I should send out a weekly or so email that briefly outlines how he is doing. How much he's been sleeping, how he's functioning, and when necessary, lab results, any special events that happen.
I'm going to try this, but I have to hard sell this to myself as just trying to improve communication with his family…even tho' I'm still steamed at them. M's take is that after a few months of this email newsletter, their denial may begin to crack. Who knows.
I've written about forgiveness being essential…and here is a lesson for me too. I need to forgive them for their anger, guilt, and fear (I have these too) and help them see what is happening with H. And to get them to the table to talk about where H really is and how to be there for him as he makes this transition, whenever that happens.
Monday, December 24, 2007
Reframing this Christmas
My best wishes to all of you for a Happy Holiday Season and, for those of you who celebrate it, a Merry Christmas!
After having two months off of work now (!), I've realized that it is harder to not place H than to place him. Rather than a clean set of boundaries and rules…created by a clean break (sic)... it is all a swirling mush of gray.
He'll have to go somewhere at some point, but in the meantime I need to get my needs met elsewhere and somehow deal with my grief and other issues while he continues to believe that our relationship can get better.
Good idea or not, I wear my heart on my sleeve most of the time. I am just not a good actor. It is hard to know how to be genuine when doing that hurts the man you love.
Snap! Caught that guilt tripping?
The answer is to just love him and be genuine, kind, and speak your truth. Realize that he is a child in many ways, can't meet your needs anymore, and just can't understand what is happening. Try to hide what you need to do that will hurt him or that he has no need to know. Yet...holding back in this way does not feel right after 25 years with this man.
H has been back from a visit out of town for about 6 weeks now. He has since spent 4 of those weeks in bed, first with seizures and now significant fatigue as his viral load goes up as his current antiviral med effectiveness wanes (again).
While I don't mean to be cruel, what happens with him doesn't matter in many ways. I believe that he will get sicker and die sooner rather than later and my life will go on and I will be the one that has to make it all work for me. I just can't allow what is happening with him to bring me to my knees emotionally, physically, & psychologically again.
My focus has to be take care of me. Nice sentiment this time of year, no?
After having two months off of work now (!), I've realized that it is harder to not place H than to place him. Rather than a clean set of boundaries and rules…created by a clean break (sic)... it is all a swirling mush of gray.
He'll have to go somewhere at some point, but in the meantime I need to get my needs met elsewhere and somehow deal with my grief and other issues while he continues to believe that our relationship can get better.
Good idea or not, I wear my heart on my sleeve most of the time. I am just not a good actor. It is hard to know how to be genuine when doing that hurts the man you love.
Snap! Caught that guilt tripping?
The answer is to just love him and be genuine, kind, and speak your truth. Realize that he is a child in many ways, can't meet your needs anymore, and just can't understand what is happening. Try to hide what you need to do that will hurt him or that he has no need to know. Yet...holding back in this way does not feel right after 25 years with this man.
H has been back from a visit out of town for about 6 weeks now. He has since spent 4 of those weeks in bed, first with seizures and now significant fatigue as his viral load goes up as his current antiviral med effectiveness wanes (again).
While I don't mean to be cruel, what happens with him doesn't matter in many ways. I believe that he will get sicker and die sooner rather than later and my life will go on and I will be the one that has to make it all work for me. I just can't allow what is happening with him to bring me to my knees emotionally, physically, & psychologically again.
My focus has to be take care of me. Nice sentiment this time of year, no?
Saturday, December 08, 2007
When one goes out, the others stay lit
Each year, I care less and less about days of note: Christmas, our anniversary, our birthdays, Valentine's Day. And while I understand that days like these are difficult for many, what is hardest is that I just don't feel like celebrating with H anymore. Why celebrate when you are so profoundly unhappy?
Yet, H wants to celebrate and uses guilt as a way to try to get me there too. Doesn't work. The MO is that if you don't agree with whatever they want, then the guilt comes out to push you there. "You don't want a tree? You've never liked Christmas, it's always a struggle to get you to do anything. "
Now that the seizures are under control and the Holidays are here…no, I really don't want to get a tree and I really don't care about Christmas. More of the same....
Bit by bit our relationship deteriorates and I'm more content than I like, just watching it float by. No kisses in the morning, no kisses going to bed. Another piece gone and then another. Over time, as our life together continues to shrink, only the love remains...for now. I am worried that we will end up hating one another if this goes on.
What the hell am I doing here?
H was crying in the kitchen this morning, "Why is my life this way? I hate my life."
Indeed.
Yet, H wants to celebrate and uses guilt as a way to try to get me there too. Doesn't work. The MO is that if you don't agree with whatever they want, then the guilt comes out to push you there. "You don't want a tree? You've never liked Christmas, it's always a struggle to get you to do anything. "
Now that the seizures are under control and the Holidays are here…no, I really don't want to get a tree and I really don't care about Christmas. More of the same....
Bit by bit our relationship deteriorates and I'm more content than I like, just watching it float by. No kisses in the morning, no kisses going to bed. Another piece gone and then another. Over time, as our life together continues to shrink, only the love remains...for now. I am worried that we will end up hating one another if this goes on.
What the hell am I doing here?
H was crying in the kitchen this morning, "Why is my life this way? I hate my life."
Indeed.
Wednesday, December 05, 2007
Do you see what I see?
While H's family may not see what I see, in many ways, it doesn't really matter. They are just playing out a script that they have: it can't be H's health…our son/brother is not dying…it must be you, (a single man's name). They equate me trying to address "he needs more care (really), I need to focus on work, and our relationship is suffering" with divorce.
Ironic that they equate my efforts to help H and me as me wanting to divorce him. Such BS.
H was gone for a few weeks and had been home for about the same when the seizures started again.
Petit mal seizures this time; they got the grand mal seizures under control (finally) about a year or so ago, but he still has minor episodes. They start with just his hand, then his mouth…after a few days, he could not really use his hand, eat without drooling, or even walk down the hallway WITH HIS CANE without bouncing a few times off the walls. And each day he got more and more confused…seen this all before.
We've seen his neurologist, who says, "I don’t know what to do if upping his current meds don't work," in spite of him being one of the top guys in his field in this area. We'll talk with him again tomorrow.
Good news is that H's seizure episode seems to be winding down, but he sleeps even more now with double his regular neuro med dosages.
I find the irony delicious that after H's family told me "he's fine (sic)," H has had another unfortunate episode, which has rendered him unable to care for himself much the past few days (e.g., usually he can dress himself, but I've needed to help him this week). Likely, it will take another week or two for him to bounce back…even so, it seems that with each seizure episode, even "small" ones, he loses ground overall.
I must say that one of H's sisters has been very understanding and supportive. She is the only one of the nuclear family set that hasn't gone on the attack, questioning my judgment, experience, and motives.
The sad thing is that if H and his family don't support me in my efforts to address this situation (instead of denying it further), I may need to actually do a divorce just to get him the care he needs while also saving myself. So much for trying to improve our relationship for the time he has left.
Just one of those great self-fulfilling prophecies…then I really can be the bad guy for the conspiracy theorists.
Ironic that they equate my efforts to help H and me as me wanting to divorce him. Such BS.
H was gone for a few weeks and had been home for about the same when the seizures started again.
Petit mal seizures this time; they got the grand mal seizures under control (finally) about a year or so ago, but he still has minor episodes. They start with just his hand, then his mouth…after a few days, he could not really use his hand, eat without drooling, or even walk down the hallway WITH HIS CANE without bouncing a few times off the walls. And each day he got more and more confused…seen this all before.
We've seen his neurologist, who says, "I don’t know what to do if upping his current meds don't work," in spite of him being one of the top guys in his field in this area. We'll talk with him again tomorrow.
Good news is that H's seizure episode seems to be winding down, but he sleeps even more now with double his regular neuro med dosages.
I find the irony delicious that after H's family told me "he's fine (sic)," H has had another unfortunate episode, which has rendered him unable to care for himself much the past few days (e.g., usually he can dress himself, but I've needed to help him this week). Likely, it will take another week or two for him to bounce back…even so, it seems that with each seizure episode, even "small" ones, he loses ground overall.
I must say that one of H's sisters has been very understanding and supportive. She is the only one of the nuclear family set that hasn't gone on the attack, questioning my judgment, experience, and motives.
The sad thing is that if H and his family don't support me in my efforts to address this situation (instead of denying it further), I may need to actually do a divorce just to get him the care he needs while also saving myself. So much for trying to improve our relationship for the time he has left.
Just one of those great self-fulfilling prophecies…then I really can be the bad guy for the conspiracy theorists.
Saturday, November 17, 2007
And now, marriage counselling
While I'm pretty well-rested at this point, I'm awfully puzzled and annoyed.
Had a long conversation with H's mom yesterday about what is happening here. But, they haven't seen any evidence of his dementia worsening, she tells me, other than he's a bit slow. Now, she's been there all of one day and H has only been at his sister's for two weeks now. Apparently, he's cooking his own meals, but "he does sleep a lot."
I explained how when I've raised placement with H before that he gets all energetic, cleans and polishes, but that this isn't sustainable and that he will poop out and crash after awhile.
Suffice to say that there is a difference between what they've seen and what I've seen. And what is that difference attributable to?
Simple: H is afraid.
She did use the divorce word again and once again I asked her not to use it because it isn't helpful. And it isn't true, besides. How is it that I struggle do this anymore is divorce?
She suggested marriage counseling. We did that 5 years ago, I say. The net was that yup, it's a hard situation and that what love we have for one another is slowly being destroyed by circumstance. Advice at that time was to get out before you end up hating one another.
We'll see how it goes when H gets back this afternoon.
Sheesh….I am so tired of having a drama about my sick partner (again). I so enjoyed the brief respite that I had.
Had a long conversation with H's mom yesterday about what is happening here. But, they haven't seen any evidence of his dementia worsening, she tells me, other than he's a bit slow. Now, she's been there all of one day and H has only been at his sister's for two weeks now. Apparently, he's cooking his own meals, but "he does sleep a lot."
I explained how when I've raised placement with H before that he gets all energetic, cleans and polishes, but that this isn't sustainable and that he will poop out and crash after awhile.
Suffice to say that there is a difference between what they've seen and what I've seen. And what is that difference attributable to?
Simple: H is afraid.
She did use the divorce word again and once again I asked her not to use it because it isn't helpful. And it isn't true, besides. How is it that I struggle do this anymore is divorce?
She suggested marriage counseling. We did that 5 years ago, I say. The net was that yup, it's a hard situation and that what love we have for one another is slowly being destroyed by circumstance. Advice at that time was to get out before you end up hating one another.
We'll see how it goes when H gets back this afternoon.
Sheesh….I am so tired of having a drama about my sick partner (again). I so enjoyed the brief respite that I had.
Wednesday, November 14, 2007
Guilt song trilogy
Low burn
H is coming home in a few days, after spending over two weeks at his sister's house out of state.
I've been sorta beginning to feel fondness for H the past few days…like "Yea, it would be nice to see him." Or even a fleeting, "I wish H were here to share this moment with me," or two.
The weight of my anger and resentment is much lower right now. And so I notice what love that I have for him more.
Before he left, I was so angry that I rarely felt love for him, just obligation and resentment. I am worried that the anger will come raging back when H returns. Without any change, it will.
I am not trying to steal from you
I was just talking with H a few minutes ago. He's asking me if he should find a place near his sister's out of state, "cuz I'm not ready for a hospice or for assisted living."
"Dr. says you are," I say.
"That's not what he told me. ..that was true a long awhile ago. But now you just want to get me out of the house, so that you can get it," he says.
I try to beg off of the topic until he gets home. I tell him that I still think that (place) is the right solution, or something like it because there are big issues here at home. That this isn't sustainable for me anymore. And that everyone seems to have their opinions.
"Then it is over," he says. "You said that this was for better or for worse. If I move down here, then it is divorce…. The amount of care you seem to think I need…well, that's ridiculous. You just want the house."
I object to the word ridiculous.
I beg off, tell him I love him, and say goodbye.
When he gets back, I will try to see what H and I can work out. Something has to change here…if he is doing so well, can he step up?
The bitter aftertaste of denial
I'm getting a sense that the family is minimizing H's disability and gathering the wagons…looking for a place for him to live away from our home and me. I can just hear them cackle about how good he is doing. In some ways, I can't blame them…he's not dying in front of them, after all.
And I know that H will do the best show that he can while he's on his visit. And I will be the bad guy in all of this, even though I've been a "saint" for so many, many years (his family's word). Now, they may think that I'm cheating him…he does. Sigh.
I've been planning on arranging having his family talk with his Dr. and also talk with my shrink. And to get a dementia baseline test done (essential). I guess that I feel a need to build the case…or, at least, smooth the waters?
Truth is, us continuing to live together is hard for me, but easier for everyone else. Living apart is easier for me, but harder for everyone else.
Why is everyone so certain that he doesn't need to go to a facility, that he can live on his own? I have seen little evidence that he can live on his own in the last 3+ years. Was he just being lazy? Why isn't he exhibiting those skills now?
H is coming home in a few days, after spending over two weeks at his sister's house out of state.
I've been sorta beginning to feel fondness for H the past few days…like "Yea, it would be nice to see him." Or even a fleeting, "I wish H were here to share this moment with me," or two.
The weight of my anger and resentment is much lower right now. And so I notice what love that I have for him more.
Before he left, I was so angry that I rarely felt love for him, just obligation and resentment. I am worried that the anger will come raging back when H returns. Without any change, it will.
I am not trying to steal from you
I was just talking with H a few minutes ago. He's asking me if he should find a place near his sister's out of state, "cuz I'm not ready for a hospice or for assisted living."
"Dr. says you are," I say.
"That's not what he told me. ..that was true a long awhile ago. But now you just want to get me out of the house, so that you can get it," he says.
I try to beg off of the topic until he gets home. I tell him that I still think that (place) is the right solution, or something like it because there are big issues here at home. That this isn't sustainable for me anymore. And that everyone seems to have their opinions.
"Then it is over," he says. "You said that this was for better or for worse. If I move down here, then it is divorce…. The amount of care you seem to think I need…well, that's ridiculous. You just want the house."
I object to the word ridiculous.
I beg off, tell him I love him, and say goodbye.
When he gets back, I will try to see what H and I can work out. Something has to change here…if he is doing so well, can he step up?
The bitter aftertaste of denial
I'm getting a sense that the family is minimizing H's disability and gathering the wagons…looking for a place for him to live away from our home and me. I can just hear them cackle about how good he is doing. In some ways, I can't blame them…he's not dying in front of them, after all.
And I know that H will do the best show that he can while he's on his visit. And I will be the bad guy in all of this, even though I've been a "saint" for so many, many years (his family's word). Now, they may think that I'm cheating him…he does. Sigh.
I've been planning on arranging having his family talk with his Dr. and also talk with my shrink. And to get a dementia baseline test done (essential). I guess that I feel a need to build the case…or, at least, smooth the waters?
Truth is, us continuing to live together is hard for me, but easier for everyone else. Living apart is easier for me, but harder for everyone else.
Why is everyone so certain that he doesn't need to go to a facility, that he can live on his own? I have seen little evidence that he can live on his own in the last 3+ years. Was he just being lazy? Why isn't he exhibiting those skills now?
Friday, November 09, 2007
Enjoy the silence
H has been gone for over a week now, although he calls me at least once a day. I've been off work for over a week too now. I love being a hermit.
It's very strange to have this house to myself…this house that I've shared with H for so many years. I like the silence and the lack of responsibility. I like being able to sleep so long in the king size bed without having to share the covers or wear ear plugs so I don't hear his C-pap machine.
I've been disoriented by the lack of structure recently. I don’t have to be anywhere, I don't have to talk to anyone. There is nothing that really has to be done. If I were somewhere else, I'd call this a vacation.
I've talked with H just a few times since he's been gone, even tho' he's called several times a day (I am so thankful to whoever invented Caller ID ). He hasn't asked me any questions about how I'm doing or how I'm feeling, just what I'm doing.
"Where were you yesterday?," he asked me. "I called many times." "I must have been in the garden, outside," I say, knowing that he didn't call me yesterday.
H tells me that he's bored, "They all have to work. I miss all the things that I get to do at home."
I don't care that he misses home, but I don't tell him so.
There is odd silence in my head as well. I don't hear so much of my anger, my resentment driven by the things that H has said when I've told him that I can't deal anymore:
At least I'm not in the hospital right now.
You've always been depressed and stressed and angry.
I'm not that sick…you're just trying to get rid of me.
I don't blame him for his anger, but I'm tired of having my experience so discounted. The sad truth is that this is not H, not the man that I have known for so long, but the dementia talking through his own fear and denial.
This time apart and this time off of work is to help me catch my breath for the next run up the hill. I hope that this will be the last run I make up this hill.
It's very strange to have this house to myself…this house that I've shared with H for so many years. I like the silence and the lack of responsibility. I like being able to sleep so long in the king size bed without having to share the covers or wear ear plugs so I don't hear his C-pap machine.
I've been disoriented by the lack of structure recently. I don’t have to be anywhere, I don't have to talk to anyone. There is nothing that really has to be done. If I were somewhere else, I'd call this a vacation.
I've talked with H just a few times since he's been gone, even tho' he's called several times a day (I am so thankful to whoever invented Caller ID ). He hasn't asked me any questions about how I'm doing or how I'm feeling, just what I'm doing.
"Where were you yesterday?," he asked me. "I called many times." "I must have been in the garden, outside," I say, knowing that he didn't call me yesterday.
H tells me that he's bored, "They all have to work. I miss all the things that I get to do at home."
I don't care that he misses home, but I don't tell him so.
There is odd silence in my head as well. I don't hear so much of my anger, my resentment driven by the things that H has said when I've told him that I can't deal anymore:
At least I'm not in the hospital right now.
You've always been depressed and stressed and angry.
I'm not that sick…you're just trying to get rid of me.
I don't blame him for his anger, but I'm tired of having my experience so discounted. The sad truth is that this is not H, not the man that I have known for so long, but the dementia talking through his own fear and denial.
This time apart and this time off of work is to help me catch my breath for the next run up the hill. I hope that this will be the last run I make up this hill.
Wednesday, October 31, 2007
Strange disconnections
Today, I had to come into the office to do a few last things before I’m off for the next 3 months. It's very strange being here, knowing that I won't be coming in for awhile.
On one hand, I'm glad that I'm getting the break. On the other hand, I've been experiencing some profound sadness today. It's not just about work, I know that. But I've been denying for long enough that somehow I can still do the work and soldier on while also caring for H during his decline. And so, taking leave from work is another physical manifestation of how hard it is for me to be able to care for H over the years.
I talked with H on the phone and he's very unhappy being at his sister's: "It's a very full house, it's too hot/cold here, I don’t feel well, I miss you, I miss being a t home."
All I could do is tell him that it's only for a short while and that I miss him too. Well, what I miss is my memory of him. I don't miss the care that I have to provide, the responsibility that I've assumed, or his incessant questions first thing every morning.
Now, off to home for a nap and maybe Oprah.
On one hand, I'm glad that I'm getting the break. On the other hand, I've been experiencing some profound sadness today. It's not just about work, I know that. But I've been denying for long enough that somehow I can still do the work and soldier on while also caring for H during his decline. And so, taking leave from work is another physical manifestation of how hard it is for me to be able to care for H over the years.
I talked with H on the phone and he's very unhappy being at his sister's: "It's a very full house, it's too hot/cold here, I don’t feel well, I miss you, I miss being a t home."
All I could do is tell him that it's only for a short while and that I miss him too. Well, what I miss is my memory of him. I don't miss the care that I have to provide, the responsibility that I've assumed, or his incessant questions first thing every morning.
Now, off to home for a nap and maybe Oprah.
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