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 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,, 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."

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.

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.