DABA doo doo

Denial, Anger, Bargaining, Acceptance

D: He's not that sick and I can deal with all this indefinitely.

A: I'm really pissed at him and life in general about this. It's the disease, not the man, I know, but still.

B: He'll recover enough to have a life together...I mean, I know that he's declining, but his T cells are so high. or...I can compensate for not having a healthy partner, somehow.

A: I shouldn't expect him to be anything that what he is today, which is less than I have had from him (ever), and is way less than I need and deserve.

A summer afternoon vignette

H is taking a long nap. Outside our bedroom door, I can't hear him breathing or the C-PAP machine making its usual rhythmic hissing.

I push the door open to listen and step in. He doesn't seem to be breathing and it's quiet. I lean towards him and stare. His right eye opens.

"Oh, hi," I giggle in surprise. "I didn't hear any breathing in here and thought I should check."

"I'm OK." Hissing.

"Sorry to bother you."

While I was cooking dinner later, I said, "Sorry for waking you, but I didn't hear any breathing and thought I should check."

"Thank you," H says. "But if you ever find that I'm not breathing, don't feel bad for me."

"I'll cry," I said.

"But only for awhile," he says, looking for his daily tray of up to 30 pills so that he can take his pain meds.

"I'm so tired of taking these pills and every six hours, I have to take pain meds OR ELSE. Six hours. Six hours. Every six hours I have to take meds."

Now he's crying. I'm holding him.

"And the rest of the meds make me so sick. God, I'm so tired....I'm going to go lie down now."

"OK, honey. Have a good nap. I love you."

Longings unfulfilled

Neither H nor I get our partner needs (insert long list here) met at home, or at all, for that matter.

I've whined here about how he isn't a partner for me anymore, really, and I'm finally getting better at cutting through all the denial I have about this. And the denial that somehow it will all be better…that he will get well enough…oh, that's bargaining, isn't it. But that isn't going to happen.

My longing makes me want to get away from him to fill my needs because I know that he can't -- ever again. Once "free," I can then focus on getting what I need: (insert long list here).

His longing makes him be after me to fulfill his needs. I am often in the position of rejecting him over and over again as 1) he doesn't remember what we talked about and 2) he's just relentless in feeling that he can "fix" either our relationship or me or both.

I can appreciate his hope (mine has been gone for awhile now) and I don't want to unnecessarily hurt him.

So, here we are, both longing for what we need and neither one of us able to give or get that anymore.

Connections missed

• Neighborhood garden party this weekend given my one of our local lesbians; she's been doing this party for many years now and H and I have gone for many years as well. Except for this year and last year…I didn't feel like going either year.
  
  So H goes by himself. When he comes back, he talks about how neat it was to see all the gay couples, happy, in love, being physical with one another (kissing, holding hands, etc.). Silence ensues. He then goes on to tell me that he wants what they have…why can't we, he asks? "Maybe they have a better relationship than we do," I say.
  
  Also, since this is my second year of non-attendance, I get scolded that I just don't like her party and now she thinks so too.
  
  I want to say, "I'm just reminded of what I'm missing when I see healthy, happy gay couples and so I'd rather stay home than see that. It just makes me sad & angry. And I am so tired of everyone asking how is H's health, telling me how good you look given your health and telling me, 'I just don't know how you do it.'"
  
  But I say, "Can't you stop ragging on me? Why are you constantly after me? I'm tired of you picking at me all the time." Not the most loving response, but it's the best I can do. Is the truth any better here?
  
  He's very nice to me the rest of the evening.
  
  
• Voicemail at work today asking me if they should keep H on the waiting list for the nursing facility or remove him, "as it sounds like he is doing very well."
  
  
• Found out that an old flame of mine is now working nearby…a man with whom I had a huge connection. Not looking for nookie, just a friend. So, I drop him an email to get together for coffee to catch up on our respective lives. Silence ensues. Guess not.
  
  
• Sometimes, I have a hard time sleeping and so I go to sleep in our guest room. More often than not, I wake with morning wood. I haven't had morning wood when sleeping with H in many, many years....thought it was just age. Guess my body knows, huh.
  
  
• I’m floating right now, between jobs and very much feeling how far apart H and I really are. Well, I think that I'm finally coming out of denial enough that I feel just how disconnected we are. No anchors at work, no anchors at home, nada. Irritation at the ambiguity coupled with urgency on resolution…enough to make my head explode. Ahhh, Mondays!

When All Else Fails, Eliminate Your Expectations

nI've been struggling recently with my anger and disappointment about H's health and its impact on me, him, and our lives together. I feel cheated and impatient to get on with my life (re: I'm very aware how short life is), he's worn out and tired of fighting this damned disease (me too), and our relationship is shifting to that of caregiver and caregiveee (sic), which in some ways is an improvement.

The other day, I was completely frustrated by a conversation I had with H. We've had a major car-repair issue that involved the classic decision: sell it, fix it and keep it, or fix it to sell it. The repair involved a comma in the price and so I was discussing this with H because we always have.

Now, I should know by now not to trust his judgment anymore, but it so automatic for me to ask his opinion and then consider it seriously. Instead of just a car repair discussion, it turned into we need two new cars (long list of candidates) and we need to move…he pulls out a house ad for a nice enough house, but much farther from work and in a less desirable neighborhood. So not going to happen. There is no reason for us to move.

Over the years, I've learned not to expect H to be able to do much physically and over time I've learned that his judgment is failing. What I haven't done is actually say to myself and believe it emotionally, "He's not my partner anymore, he can't be there for me, and I can't depend on him anymore."

Suffice to say that I left frustrated that I couldn't consult him on this decision -- the type of decision that we always discussed prior to acting.

The Buddhists tell us that one cause of suffering is not accepting what IS.

If I think about H as my patient, someone that I can be caring and loving with if I don't expect him to be a partner for me, then it is easier. But if I expect him to be the partner that I automatically invoke in my mind based on 24 years of history, then I will just get more and more disappointed and angry. And I don't like being there either.

Isn't this just the next phase of the long goodbye: having no expectations of him in spite of our long history together? Easy to type, hard to do, especially since my "partner" needs aren't getting met and that drives my expectations of H. No…not just sex (that's easy to get), but the share-your-life-together type of needs.

It's really about gradual losses for both of us and right now, it's also about accepting what is for me.

Back at the keyboard

So sorry for the length between posts recently, but a combo of visitors from out of town staying with us, vacation, and the inevitable dramas at work and at home have kept me crazy busy.

We had two friends stay with us, S & P (sic), for a little over a week, visiting from an unnamed red state. They are both sweethearts and we had a great time with them. It was great to have adults around the house to talk with.

I won't bore y'all with a recount of our activities, but I think the striking pieces about H during this time were twofold:

H was giving me grief about my drinking while we had guests in house. Now, I've been known to put back a few or even more than a few, but I was really pretty much of a lightweight when our guests were here (well, except for the fine scotch and tequila). After a bit of H's comments, asked him, "what's up with this?" After a bit of hemming and hawing, he confessed that he was jealous because he can't drink anymore due to his meds. Of course, I tried to be kind about this, and I told him that I was sorry he can't do that anymore and that it must be very frustrating, especially with scotch, which was our favorite drink for years.

We all went to the "gay area" in our town for a bit of shopping, mens watching, and sunshine…and trying to convince one of the guys, P, that he really needed a PA (we all would pay for it, after all)…no dice though. Anyway, H was really struggling to keep up with us walking. Not just huffing and puffing, but moving so very slowly, like one of those old men that shuffles down the street. At one point, we all realized that he was having trouble, so one of us stayed with him while the other two went off down the street.

The contrast of H, shuffling slowly down the street with a cane that didn't seem to help him, and everyone else on the street was frightening. Sometimes I just forget how ill he is and the comparison to other healthy people shocks me back into reality. Now, if I can just keep from getting angry when that reality intrudes on my little fantasy. I was wanting a day off of fun with our friends and then caregiving rears its ugly head again.