Wednesday, May 28, 2008

Home for the holidaze

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.

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

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.

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.

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.


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 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.