Home for a long Memorial Day weekend, 5 days worth. On Thursday, I couldn't wait to leave the office and get home. By Wednesday following, I couldn't wait to leave home and get to the office. I have been on this wheel many, many times.
Happiness, someone once said, is looking forward to going home and looking forward to going to work.
What is it when you can't wait to leave wherever you are, yet don't like where you're going?
Part of me keeps expecting, hoping for something different when I get home. Bargaining I think they call it.
But H was true to form, only up for a few hours a day (eat, bathroom, and a bit of TV (Oprah and Dr. Phil)) spread out over 3 or 4 stints. And when he was up, he was rummy, slow, somewhat odd in focusing on bad things that happen, his health issues, etc…predictable, really.
He keeps telling me "I don't know why I’m so tired; I just want to sleep all the time." I mention that he's been this way for years now, that he hasn't felt well in a long, long time. "I don't know what's wrong with me…must be because I didn't get to bed early enough last night. I'm going to lie down now."
And so I find myself at home alone, again, save for that sick man that sleeps all the time in our old bedroom and a few pets that need my, well any, attention. Everyone in the house wants something from me…needs something from me, yet I am not nurtured here.
To offset my despair and loneliness, I medicate myself with alcohol, etc. Now, I have great concern about my need to drink so that I feel normal, although I haven't written about it here much. Right now, I am able to manage what I'm doing…to keep from sliding further into alcoholism...but I fear that I won't be able to hold it at this level forever.
I remember years ago talking with a couples' counselor about my concerns about my drinking and he said, "Well, it's understandable. But if you're still worried about it 2 or 3 years after he dies, then that's another issue." OK, so now we're 8+ years after that conversation.
But this weekend, I tried and tried to not hit the stuff or just to have less, but without my usual, I just can't deal with what is left for me at home. My distress is too high…so I leave for awhile and it follows me home again. After a few drinks, I feel more normal and can actually function without freaking out; and after a few more, I don't care that I can't function anymore and I don't mind so much that life is slipping away from me also.
By Weds, when I came back to work, my brain is addled from a weekend of imbibing and despair and I'm just sad and feel the distress well up again and am not able to focus on work at all today. Ahhh, just another day with a hangover. And I have lost yet more days in a daze.
Good thing I only drink at home, alone.
Wednesday, May 28, 2008
Tuesday, May 20, 2008
Maybe you'll be there
In spite of overwhelming evidence, I find myself still hoping that H will once again be the man that he once was…even just part of the man that he was. But there's ample evidence that this just won't happen. Even tho' his VL has dropped, all the neuro damage won't repair…some will, I suppose, but I doubt that it will be enough to return him to me.
And so, as we continue to live in the same house that we've shared for over 20 years now, I find myself transported into the past. I hear him come down the hallway, open a door, and I am returned to history and I expect that bouncing, healthy, and hot man to appear around the corner with that big happy grin that I fell for so very long ago.
While I love our house, there are so many memories and I respond so automatically and I am filled with heartfelt hope, even if just a little bit and just for a moment. I've realized that hope is just another form of bargaining ( "he'll get better, it isn't so bad, he's not so sick") and just a waypoint-albeit one that I'm stuck at- toward acceptance.
These lyrics from "Maybe You'll be There," written in 1947 by Sammy Gallop sum up the hope so well:
Someday if all my prayers are answered
I'll hear a footstep on the stair
With anxious heart
I'll hurry to the door
And maybe you'll be there
And so, as we continue to live in the same house that we've shared for over 20 years now, I find myself transported into the past. I hear him come down the hallway, open a door, and I am returned to history and I expect that bouncing, healthy, and hot man to appear around the corner with that big happy grin that I fell for so very long ago.
While I love our house, there are so many memories and I respond so automatically and I am filled with heartfelt hope, even if just a little bit and just for a moment. I've realized that hope is just another form of bargaining ( "he'll get better, it isn't so bad, he's not so sick") and just a waypoint-albeit one that I'm stuck at- toward acceptance.
These lyrics from "Maybe You'll be There," written in 1947 by Sammy Gallop sum up the hope so well:
Someday if all my prayers are answered
I'll hear a footstep on the stair
With anxious heart
I'll hurry to the door
And maybe you'll be there
Thursday, May 15, 2008
But they keep telling me he will die
In the past decade or so that H has been sick, I've been told many times by his Drs. that he will die, sometimes it could be tomorrow, sometimes it's a matter of weeks or months.
First, in 1997 it was PCP pneumonia and a 3 week stay in ICU on a ventilator followed by months in the hospital and nursing home. And, no, they told me, he won't be going home. But he did.
Then every two years or so as his virus developed resistance to each set of meds, I was told to get ready for hospice. Then a new med comes out and pulls him back from the brink.
In the last 3 years now, I've been told 4 times that he has <6 months to live. So, for two of the past 3 years, he has been on that edge. And so have I.
Thus, the horrible cycle repeats and repeats where I get ready for him to die and he doesn't yet continues to functionally decline. And I get more and more desperate for relief and he does too.
H asked me once why I haven't left him yet. I told him honestly, "Because I love you and they keep telling me that you're going to die and I wanted to be there for you through that."
How do you honor someone you love, your soulmate, while also honoring yourself under these circumstances?
While he may be dying slowly, so is our relationship and, while I may not be dying myself, I'm certainly suffering and in some metaphorical sense, it is killing me too.
First, in 1997 it was PCP pneumonia and a 3 week stay in ICU on a ventilator followed by months in the hospital and nursing home. And, no, they told me, he won't be going home. But he did.
Then every two years or so as his virus developed resistance to each set of meds, I was told to get ready for hospice. Then a new med comes out and pulls him back from the brink.
In the last 3 years now, I've been told 4 times that he has <6 months to live. So, for two of the past 3 years, he has been on that edge. And so have I.
Thus, the horrible cycle repeats and repeats where I get ready for him to die and he doesn't yet continues to functionally decline. And I get more and more desperate for relief and he does too.
H asked me once why I haven't left him yet. I told him honestly, "Because I love you and they keep telling me that you're going to die and I wanted to be there for you through that."
How do you honor someone you love, your soulmate, while also honoring yourself under these circumstances?
While he may be dying slowly, so is our relationship and, while I may not be dying myself, I'm certainly suffering and in some metaphorical sense, it is killing me too.
Another piece falls away
H and I don't sleep together much anymore.
While I prefer to sleep in our big, cushy bed, his C-PAP machine is just too noisy and I get woken up 3 or 4 times a night, which makes me pretty much non-functional during the work day. So, over time I've moved into the guest room more and more frequently and now I sleep in there on "school" nights and sometimes on the weekends.
At first, I really liked the idea of sleeping alone. I sleep through the night and wake up at 5:30 - 6am without an alarm. Who would have thought that with regular good sleep, I'd have more energy, think more clearly, my mood would be better, and I'd just generally be more productive?
Even tho' many of our other couple activities had fallen away (sex, entertaining, visiting friends, joint projects and goals, intimacy), we still had the comfort, the ritual of sleeping together and of sharing a bed…even if I couldn't always sleep due to noise.
And now H is referring to our bedroom as "his" bedroom and the guest room as "your" bedroom.
Whatever else is going on, we've slept together for all these years and now we don’t. And it makes me terribly, terribly sad…not in the "Oh, I’m sad" sense, but in the visceral, painful gut-wrenching grief sad.
While I prefer to sleep in our big, cushy bed, his C-PAP machine is just too noisy and I get woken up 3 or 4 times a night, which makes me pretty much non-functional during the work day. So, over time I've moved into the guest room more and more frequently and now I sleep in there on "school" nights and sometimes on the weekends.
At first, I really liked the idea of sleeping alone. I sleep through the night and wake up at 5:30 - 6am without an alarm. Who would have thought that with regular good sleep, I'd have more energy, think more clearly, my mood would be better, and I'd just generally be more productive?
Even tho' many of our other couple activities had fallen away (sex, entertaining, visiting friends, joint projects and goals, intimacy), we still had the comfort, the ritual of sleeping together and of sharing a bed…even if I couldn't always sleep due to noise.
And now H is referring to our bedroom as "his" bedroom and the guest room as "your" bedroom.
Whatever else is going on, we've slept together for all these years and now we don’t. And it makes me terribly, terribly sad…not in the "Oh, I’m sad" sense, but in the visceral, painful gut-wrenching grief sad.
Thursday, May 08, 2008
Lonely, but I want to be alone
In my busy life, I work ~10 hours a day and am home for only a few hours in the am and at night. In the morning, I get ready for work and leave; in the evening, I cook dinner and then maybe watch TV or play video games for an hour or so. Very boring, I think, but maybe not untypical.
Unless I get him up, H will sleep in the morning until after I leave for work and will nap through me getting home until dinner time. This gives me some much-needed alone time to do whatever I need to do for me...sometimes, I just sit in a quiet house or listen to music or putz in the garden or watch one of those compelling all-male movies.
This morning, H gets up just as I'm finishing my breakfast and he is distressed.
"What's wrong?" I ask. And I try to sound concerned, but all I can hear in my head it, "God, what now? It was such a peaceful morning." (Would be nice to get the internal monologue and external dialog to match up.)
"Can you get me up when the coffee's ready? So that I can spend time with you?" he asks softly.
"Sure." I say, without meaning it. I won't put the other S word I thought of here.
While I fret about my loneliness and isolation, the little alone time that I do get is precious to me. Just another example of how our needs collide without an obvious solution for us both.
Unless I get him up, H will sleep in the morning until after I leave for work and will nap through me getting home until dinner time. This gives me some much-needed alone time to do whatever I need to do for me...sometimes, I just sit in a quiet house or listen to music or putz in the garden or watch one of those compelling all-male movies.
This morning, H gets up just as I'm finishing my breakfast and he is distressed.
"What's wrong?" I ask. And I try to sound concerned, but all I can hear in my head it, "God, what now? It was such a peaceful morning." (Would be nice to get the internal monologue and external dialog to match up.)
"Can you get me up when the coffee's ready? So that I can spend time with you?" he asks softly.
"Sure." I say, without meaning it. I won't put the other S word I thought of here.
While I fret about my loneliness and isolation, the little alone time that I do get is precious to me. Just another example of how our needs collide without an obvious solution for us both.
Witholding
One of the things that happens when you withold yourself from others, don't tell them the truth and what is on your mind, is that the witholding creates distance. Intimacy is the oppositie of that distance.
And over the years, I've witheld more and more from H. Early on in his illness, when he was 120 lbs and close to death, I took lovers. I never told him and I don't intend to now; why hurt him? In the distant past, we'd share our "indiscretions," much to the entertainment of us both.
What else do I withold? The complexities and worries about my future, my worries about him and how I'll handle it when he's gone, my fears of growing old alone, how "done" I am with not only being his lover, but his caregiver also, conversation topics, most of my needs (and I know that he can't meet them anyway), how upset I am with him for being stupid and getting this disease, my plans and dreams for the future...my hopes for something different for us both....
So, when I talk about loneliness I have contributed to it myself with my partner by witholding.
On one hand, I can point to the fact that he can't "catch." Then again, I'm not throwing the ball anymore.
And over the years, I've witheld more and more from H. Early on in his illness, when he was 120 lbs and close to death, I took lovers. I never told him and I don't intend to now; why hurt him? In the distant past, we'd share our "indiscretions," much to the entertainment of us both.
What else do I withold? The complexities and worries about my future, my worries about him and how I'll handle it when he's gone, my fears of growing old alone, how "done" I am with not only being his lover, but his caregiver also, conversation topics, most of my needs (and I know that he can't meet them anyway), how upset I am with him for being stupid and getting this disease, my plans and dreams for the future...my hopes for something different for us both....
So, when I talk about loneliness I have contributed to it myself with my partner by witholding.
On one hand, I can point to the fact that he can't "catch." Then again, I'm not throwing the ball anymore.
Monday, May 05, 2008
Lonely is as lonely does
I went to a conference out of town this last week. While the event was interesting and even fun in some ways, I had a key insight. Without my usual distractions and err ah medications at home, I realized just how lonely I am. Of course, being a business conference, there were opportunities to spend time with like-minded men, but that is just a quick fix and the loneliness came rushing back (well, it was always there; I was just marginally distracted for a bit).
Before I left for my trip, I read about a man that had cared for his son with autism for the past 40 years. And recently the father had a heart attack and couldn't care for his son anymore. In an interview, the father talked about his loneliness (his wife had died some years earlier) and the burden of the care for his son. Because of the son's behavior, people wouldn't come to visit or be available as much as they were in the past. So, for the past decade or so, this dad was on his own with a mentally compromised son…no social life, no help from others, nada.
I've written here before about friends disappearing and as H's dementia has progressed, even our long-time friends are staying farther and farther back. Oh, they are there with a phone call and worried when H is in the hospital yet again, but they have faded away, pacing H's decline. His family has done the same.
And as my distress increases in these late days, I'm not the most fun person to be around anymore and so my friends have faded back and I'm less inclined to engage. Part of this is depression (I refuse to take anti-depressants anymore) and part of this is that I'm so burned out and grief-stricken watching this tragedy unfold that I'm just not engaged in life enough to have stuff to talk about other than how whacked I am. And bottom line, I'm sad and distressed and have been for years now.
Now that I'm back from my trip, I've spent some time with H and the loneliness is still there. Whatever it is that I need in this regard, he obviously can't provide. It is distressing to be in the room with your partner of so many years, crazy or not, and still feel lonely.
While I can't take responsibility for everyone else's issues (tho' I certainly do try to from time to time), I can take responsibility for mine. I don't get out much anymore and when I do, I'm afraid that I don't feel like a very interesting person anymore. I need to take steps to end my isolation, even as H slips more and more into his and pulls me along with.
Before I left for my trip, I read about a man that had cared for his son with autism for the past 40 years. And recently the father had a heart attack and couldn't care for his son anymore. In an interview, the father talked about his loneliness (his wife had died some years earlier) and the burden of the care for his son. Because of the son's behavior, people wouldn't come to visit or be available as much as they were in the past. So, for the past decade or so, this dad was on his own with a mentally compromised son…no social life, no help from others, nada.
I've written here before about friends disappearing and as H's dementia has progressed, even our long-time friends are staying farther and farther back. Oh, they are there with a phone call and worried when H is in the hospital yet again, but they have faded away, pacing H's decline. His family has done the same.
And as my distress increases in these late days, I'm not the most fun person to be around anymore and so my friends have faded back and I'm less inclined to engage. Part of this is depression (I refuse to take anti-depressants anymore) and part of this is that I'm so burned out and grief-stricken watching this tragedy unfold that I'm just not engaged in life enough to have stuff to talk about other than how whacked I am. And bottom line, I'm sad and distressed and have been for years now.
Now that I'm back from my trip, I've spent some time with H and the loneliness is still there. Whatever it is that I need in this regard, he obviously can't provide. It is distressing to be in the room with your partner of so many years, crazy or not, and still feel lonely.
While I can't take responsibility for everyone else's issues (tho' I certainly do try to from time to time), I can take responsibility for mine. I don't get out much anymore and when I do, I'm afraid that I don't feel like a very interesting person anymore. I need to take steps to end my isolation, even as H slips more and more into his and pulls me along with.
Wednesday, April 23, 2008
Good news, bad news
For a year or so, Drs. have had a hard time controlling H's HIV viral load. His virus is resistant to all, literally ALL, the meds that were available last year. As a result, he went into a nose dive last Fall, the culmination of which was my ill-fated attempt at placement and a corresponding nose dive into burnout for me.
But in February of this year, new meds came out. And a few months later, his viral load is undetectable for the first time in 10 years. And his T cell count is the highest it's been during that time as well.
At the same time, he's taking what amounts to chemotherapy and it makes him feel sick a lot of the time. So, whether his viral load is up or it is down, he's just not able to participate that much.
It's happened many times, about every two years or so: his virus gains resistance to the meds he's on, his health takes a dive, we discuss hospice, etc. Then, new meds come out, they pull him back from the brink and for a year or so he's out of the woods. Then his virus develops resistance…rinse and repeat.
What's striking this time is that his dementia and delusions don't seem to be improving, even as his viral load drops, hence all the fretting about alien conspiracy theories.
More than his physical health, what has been hardest for me is the mental decline.
But in February of this year, new meds came out. And a few months later, his viral load is undetectable for the first time in 10 years. And his T cell count is the highest it's been during that time as well.
At the same time, he's taking what amounts to chemotherapy and it makes him feel sick a lot of the time. So, whether his viral load is up or it is down, he's just not able to participate that much.
It's happened many times, about every two years or so: his virus gains resistance to the meds he's on, his health takes a dive, we discuss hospice, etc. Then, new meds come out, they pull him back from the brink and for a year or so he's out of the woods. Then his virus develops resistance…rinse and repeat.
What's striking this time is that his dementia and delusions don't seem to be improving, even as his viral load drops, hence all the fretting about alien conspiracy theories.
More than his physical health, what has been hardest for me is the mental decline.
Monday, April 21, 2008
Accepting craziness
I've come to the conclusion that H's mental state is doing nothing but declining. And so I now think of him as crazy. It's one thing to have dementia, it's another to be "crazy." The more I've thought about this, the more freeing it is…this is a key part of my acceptance work to call it what it is.
Part of me is sad because I'm giving up hope that he'll ever get better, but he just won't. And as he sleeps more and more and becomes more and more delusional, I know that the end is in sight. What end, I don't know, but some end is in sight.
And so, the drama grinds on, but seeing his mental state decline so much recently is helping me accept the inevitable more easily and, perversely, gives me much hope for my future...as in, I will have one soon.
Part of me is sad because I'm giving up hope that he'll ever get better, but he just won't. And as he sleeps more and more and becomes more and more delusional, I know that the end is in sight. What end, I don't know, but some end is in sight.
And so, the drama grinds on, but seeing his mental state decline so much recently is helping me accept the inevitable more easily and, perversely, gives me much hope for my future...as in, I will have one soon.
Thursday, April 17, 2008
Tuesday, April 08, 2008
For almost half the time...
On Thursday, H & I celebrate our 25th anniversary. Wow. Even I say wow...and I was here the whole time.
While we will celebrate in some fashion...I don't feel celebratory, just tired...we still haven't settled on what we will do.
Of those 25 years, H has been sick to very sick - and officially disabled - since 1996...for almost half the time. And I have carried him all this time.
Usually, I'm just a fountain of words here, but today I have nothing left to say.
While we will celebrate in some fashion...I don't feel celebratory, just tired...we still haven't settled on what we will do.
Of those 25 years, H has been sick to very sick - and officially disabled - since 1996...for almost half the time. And I have carried him all this time.
Usually, I'm just a fountain of words here, but today I have nothing left to say.
Wednesday, March 26, 2008
Are you strong enough to be my man?
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).
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).
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.
Subscribe to:
Posts (Atom)
Posts
