This 'n' that

While H was up and about much more for awhile, he's now back in bed most of the time. Maybe up for just a few hours a day again. He told me that he just doesn't feel well and is very, very tired. Nice to get the gallbladder out, and that helped him a lot, but at the end of the day, he's still a very sick puppy.

He's got a classic car that he has been lovingly restoring for the past 20 years or so. It is the second love of his life, he tells me. He doesn't feel well enough to even take it out for a spin around the block, not to mention getting it to the shop again for some (more) restoration work.

I've been working to get him to accept that our romantic relationship is over. I told him so in so many words a bit ago, just as I have several times over the past few years. Each time, this seemed to be a surprise to him. Sigh. I'm guessing he just doesn't remember our conversations, is in denial, or hoping I'll change my mind/heart.

Finally, I've come to the realization that I don't like being home anymore...in retrospect, this seems obvious, but I finally named it and claimed it. When H is up, I don't like dealing with him or his noisy pet or his blaring TV shows or his incessant repetitive questions and statements. When he is asleep, I fantasize/worry about what my life will be like when he is gone, and I hope that he goes soon.

And finally, finally, I am able to catch myself in conversation and respond with more patience and kindness than I thought I had. I keep saying to myself, "You've got a kid now…respond in kind."

All of this points to a few truths:
* My identity is H's caregiver (and partner) and little else
* I am feeling lost as I struggle to move past this identity and I worry about how lost I will feel when he is gone
* I am often profoundly tired and I understand why people just give up and walk away

But, push the rock up the hill again, I must.

Healthier weirdness

Now that H has had his gallbladder out, he is doing much better with eating. And he's just not in bed as much. I mean, he's up much of the day now on weekends, he's tidying up the house, and starting up long-mothballed projects.

This is really weird. I suppose that I should be happy about this, but it's taking some adjustment. H finds it weird too.

It's so strange to have someone who has been in bed for 13 of the past 15 years and now he's not...to go from bed-ridden and terminal to talking about his hope for the future. I don't know how to be with him as a partner anymore...just as a caregiver.

And the MRI showed no changes in his brain over the last 5 years or so. I have fears it means this will just drag on and on.

I don't trust it. I don't really like it. And it pisses me off, "Where have you been the last decade, my dear?"

Oh sure, I'm happy for him that he's feeling better. But, the dissonance in my head is daunting. How do I reconcile the "I just wish you'd die already" feelings with the happiness *for him*. Well, I can't.

This wonderful feeling

In spite of it all, H and I are better together these days.

Maybe it's that the medical stuff is so routine now...even with new issues... or we've reached some type of détente in our expectations for one another. Or maybe we're both getting closer to acceptance. But on occasion and more regularly, that gentle fondness is there in the forefront and we talk, laugh, and playfully joke with bad puns...just like before.

Oh, and I finally told H just how lonely I am given that he sleeps so much and that I'm tired of being in our house alone...I just have to get out, which disturbed him greatly. I told him that we both wish it was different, but it is what it is.

So, for the past few days, he's been in bed less...up when I get home, sitting in the kitchen while I make dinner...even making some simple joint plans for the weekend…routine stuff that other couples perhaps take for granted, but that we haven't had for so, so long.

While I'm enjoying his company a lot right now, I do find myself being mistrustful that this is just a brief episode that won't last. And a tad pissed off that he's been missing in action for so long (e.g, for much of the past decade). And, for some reason, my grief keeps coming up.

But, all I can do is enjoy it this wonderful feeling while I have it and while I have him.

And, for right now, I am grateful.

Why isn't it better?

When H is sickest, needless to say, our relationship declines. He's not cogent, feels awful, and there are other priorities.

But then, when he gets better, he goes on about how our relationship isn't what he wants it to be, that it ought to be better. Yet, he doesn't remember what's happened.

So, I find myself with someone who's been asleep for close to a year and then wakes up and wants their life to be what they want.

And, he can't understand that when he's sick, our relationship is all about me being guardian/caregiver and the last thing on my mind is what is going on with our relationship. I have other concerns, such as, "Is he going to die?"

He'll tell me that he's unhappy about this or that aspect of our time together and while I want to be sympathetic (and I am) to not getting needs met from a relationship, part of me just wants to slap him. "Don't you realize that it's like this because of your health? How can that not have an affect on our lives together?"

"Well, I'm better now," is what he'll say, "so there's nothing to worry about."

Yea, but tell that to person with PTSD. The event is over, but they are irrevocably changed, and not for the better

When he's feeling better

It drives me crazy when I come home, as last night, and H is in a chipper mood and has been doing stuff.

"Doing stuff" in this case means playing with the pets, doing stuff on the computer, and cycling the dishes in the dishwasher. Nothing major for the rest of us, but major for him.

I guess that I should be happy that he is feeling better for that day, but really I just resent it because it's not consistent…and most importantly, that it conflicts with how I've learned to see him and my own resolve with how to move forward.

And just a moment ago, he called me at work to say, "I just called to say I love you."

While the distress and desperation that I often feel is overwhelming, so is the cognitive dissonance.

Boundaries, an invitation, and a holiday

One of my struggles has been how to deal with the reality that I no longer wish to have a romantic relationship with H, yet we continue to live together in our home of 24 years. For me, the romantic part of our life together is long over and I just don't see my feelings changing, although I'm trying to keep an open mind. Needless to say, H has been in denial about this for years now. But, in all fairness, I haven't been consistent as I've been racked with guilt and shame about how my feelings have changed for him and about us...and I have wavered.

So, now, I am being consistent. And while he may pout, throw a tantrum (like the kid who wants ice cream before dinner, but mom says no), or try the masterful guilting that only he can do…I hold firm and am loving and kind with him. Oddly enough, I feel much better being around the house and, for the first time in years, I’m feeling more comfortable in my own skin. My hope is that he, like me, will get to acceptance on this issue so we can enjoy whatever time we have left together and in whatever context we have it.

Setting firm, unyielding boundaries is key, but also it is important for me to extend a loving invitation to H: he's welcome to stay with me and I will be there for him, whatever happens. I've been consistent over the years with him on this point: I'm not abandoning him (tho' he may feel that way), I love him, and I will continue to care for him, regardless of how our relationship shakes out.

H is taking a holiday from his anti-viral meds for the Summer. He talked with his virologist about how sick the meds were making him feel and he wants to stop for awhile and "have a life this Summer." Now, this is not without any number of risks, but Dr. says it is better for H to stop taking them entirely than not taking them consistently due to the risk of viral resistance. Having said that, there still is a risk that that he may get sick after a month or two off or that the meds won't be effective anymore if he starts them up again.

I told H that I support his decision to take a holiday. I can see how bad his quality of life is, but I also reminded him about what has happened in the past when he took a med holiday. It's important to me that he knows I support him and that I will be there for him and it's also important that I tell him the history.

I didn't tell him this, but I'm very concerned about him taking a holiday as I've seen what happened before, but part of me hopes that he can have a few months where we can enjoy one another again. And, another part of me just wishes that this means the end of his long, tortuous road of this horrible disease.

Random snippets

Treatment burnout...

Well, I've spent so much time on recovery stuff recently that I'm just burned out on it. Not that I'll stop attending my sessions and all that, but sheesh I'm tired of hearing about drinking or not drinking. The counselor in my treatment program is having fits with me about this as it challenges much of the AA a priori dogma.

Happily, I don’t have any cravings and I rarely think about drinking…well, unless I'm in a meeting of recovering alcoholics. Question under consideration: I know that AA is tremendously helpful to many, but given that I don't struggle with not drinking …how much of this do I really have to do to keep myself sober?

Don't go to that meeting!

H is worried that I'm doing too much right now, yet he can't see that he is a big part of my overload. Work is crazy busy and he's worried that somehow I'll run into someone at my once a week treatment meeting that is from my large company and that "it won't be good for your career." He also says, "You need to focus on work and yourself, you don't have the capacity to go to a meeting." Reality check, please.

It's really more about him not understanding the facets that I juggle constantly: it's work, work, work at the salt mines, then home to do more work (make dinner, listen to his old angry stories, take care of the pets), my self care stuff (including the gym & therapist), and oh that pesky spiritual path thing. I know I need a vacation, but that won't happen until August. So, yea, I need to do a bunch of self-care stuff and I do it wholeheartedly without guilt.

Just go back to bed, would ya?

No surprise, but H doesn't have all that many good days these days. But after a slew of bad weeks, he's up and about a lot more right now. So, he's up early with me, sleeps during the day, and is up when I get home. First time in literally years and, of course, I've been fancying myself a single man, so I have much dissonance about this. But, I'm not PO'd at him since I've stopped drinking and I am grateful for that.

He "just wants to be with me." I appreciate the sentiment, but all I hear at this point is neediness. I don't do well with this as he's been so bloody needy for so very, very long. But, when he's up and about and trying to be all chipper, I mostly just want him to go back to bed. Now, I don't say that, of course, but I think it and I also think to myself, "How many more years do I have to babysit?"

So many appointments

Finished my intensive evening treatment classes and now I'm down to one evening class, an AA meeting, a psychotherapy appointment, and a massage therapy appointment weekly. So, that's 4 - 5 appointments a week…a lot I guess, but worth it.

H says to me, "Wow, so many appointments…I thought you were done with treatment."

"Well, I want to make certain I don't drink anymore and I was already going to the therapist and massage," I said. The reality of it is that I'm just taking care of myself, wanting to stay sober, and trying to figure out what my life looks like. Yup, I need the care.

"I just don't think you need to go to treatment anymore...you never drank that much," he said. "I just don't know why you're seeing a therapist...you've seen him for years already and it isn't helping our relationship."

By now, I've learned to not defend my choices or my actions. It doesn’t matter. He doesn't need to agree or disagree or approve anything that I'm doing. In this case, being silent is the high road. But, he does pout about it.

I feel a transformation underway…for the first time in a long time, I'm focused on making my life better for me. I think that H can see me changing…certainly my personality has changed since I stopped drinking and I feel peaceful…but he's afraid of that change as much he's wanted it for many years. And he's not in any position to change himself at this point…his life is continuing to shrink and he's making it worse by not accepting where he is or we are.

He keeps wanting me to be at home (all the bloody time) and, happily, these appointments give me a reason to not be while also helping myself.

Changing dynamics

In my treatment program class last night, we learned about how families can react when someone gets sober. In my case, I'm not certain that H knows what to do with me ("Hey, where's the asshole I lived with for so many years?").

Many marriages end in divorce after one (or both) of the spouses gets sober.

But I'm not interested in fixing my marriage, just fixing me. Right now, it IS all about me.

He can't be fixed (tho' I likely underestimate him), so my marriage can't be fixed, I think.

And do I really know who he is now? I'm assuming that he isn't capable, which is likely true. Would I have drunk so much if I thought he could be there?

And also, to the degree he WAS there, I wasn't because I was drinking too much.

I've learned that H is an addict as well…a prescribed one, but one nonetheless. I mean, he's been taking pain meds for so long now and the long-term affects on brain biochemistry are there nonetheless. Throw in significant dementia and he'll not ever be what I need, in spite of how much I love him and want that.

As I get weller and weller (sic), I’m realizing how impaired he is, but he can't get well…well, as well as I need him to be. Where does that leave me, leave us?

Finding a replacement

Someone in my treatment class was whining about how much time the class and homework is taking. (I didn't say it, but I was thinking the same thing: Class weeknights from 6 - 9:30 and homework too.) The counselor asked, "Well, how much time did you spend drinking?" Every evening and weekends too.

Someone else in the class was whining about how they had to rearrange their life around the classes. (I'm sure you can see this one coming.) The counselor said, "Well, you rearranged your life around alcohol, didn't you?" Uhhhh, yes, I did, clearly.

Very strange to not drink 1,000 or more calories a day. Now I have to eat and eat and eat. And even so, I’m still losing weight. Eventually, I'll figure out and get comfortable with how much I need to eat, but sheesh…I've never been a big fan of eating anyway.

Even stranger still is to be able to know in my heart that my romantic life with H is over, yet not be angry at him about it . The more present I become as I dry out, the clearer it becomes to me that I have to take responsibility for getting my needs met and not blame H...just love him.

H's support

Over the past week or so, I've been consciously reducing the amount that I drink in prep for stopping entirely. Now, I know that I have to stop, but I'm hoping to manage down the withdrawal just a bit.

A week from tomorrow I start my evening sessions and no later than that day, I have to stop drinking.

So, I've cut down from 8+/day to 6 to 4, etc. over the past week. This has been surprisingly hard. And now I get cravings by 10am every day, earlier than my usual, "It's 3 o'clock…where's my beer?"

H has been helping me stay within my limits. We count out how many I get and whatever is extra gets hidden. And I don't start drinking until 5pm.

Now, I'm not keen on putting H in the role of policeman, but it's something he can do to help for the next week or two and he is more than willing to do so. And I both appreciate and need the support right now.

In fact, we discussed H going to AZ to visit his sister during this time. His sister suggested it in fact…wanting to be helpful and supportive.

I said, "No because I don't know that I trust myself to not drink and so I could really use your support.

H said, "I don't trust you to not drink either."

And while I've been whining here about H not being there for me, this is one area where he can be. And for that I am very grateful.

Uresolved

When H and I have had issues to deal with and we've gotten angry, usually there is some resolution to that tension. Someone takes responsibility, we agree to do something different, or one or both of us just says, "Yup, you're right." And mostly, something changes.

But now, instead of being resolved, well…it doesn't .

Recently, H got up from a nap after not having eaten all day…it was late, 9pm. I had just worked an 11 hour day and was making dinner: very tasty Reuben sandwiches with cole slaw and homemade baked potato chips. (!)

He was very upset about "sandwiches again for dinner" and "we've been having a lot of sandwiches." Uhhh, no…a few times in the past month. The night before I made a fabulous dinner, but he couldn't remember what we ate. Most of our meals are homemade meals.

So, tense words ensue and what we said doesn't matter. Unfortunately, H can't deal with me when I get angry anymore…. And he can't acknowledge the issue because he's so puzzled or he doesn't understand what the big deal is, so my anger doesn't abate.

There are many, many other examples like this, but more and more it involves a lack of resolution about the issue. Not just for me, but for us. We're not working on the issue together.

I need to get to the point where unresolved issues don't matter to me.

Honestly, I don't see how I can do that....

He's not your partner anymore

I really struggle with how to view H these days. While I understand that he is sick, I keep expecting him... nee keep needing him...to be my partner. As I've written here before, since we still live in the same house that we bought 20 years ago, I just keep hoping and filling in blanks for him.

So, I'm whining in therapy about my disappointment about not getting my needs met and how to deal with H's issues as I go out and get my needs met (nothing too salacious, just taking some nights off to visit with friends).

Now, it's hard to even do simple things without him as he gets pissed and mopes about that I don't love him, that I’m ashamed of him, that I am tired of him, and "we never do anything together anymore." Right, doing things with him is not fun for me, it is work because he is so high maintenance.

And I'm whining about how H continues to be after sex and talks about how our relationship isn't what it used to be. Yup.

At some point, I blurt out, "Well, I just think that I should be able to talk with my partner and work through these issues…"

My therapist leans forward and says, "He's not your partner anymore. He just can't be. You are in a fantasy that he is or ever will be again. Whatever he is to you, he is no longer your partner in the way that you need one. Sure you love him and care about him, but based on everything that you've told me for the past 4 years, he will never be able to give you what you need. In fact, it continues to go the other way."

What needs to shift for me is to view him as the sad, sick little man that he's become. Maybe I won't be so angry at him if I just accept this.

And maybe, just maybe, if I can think of him differently, I can begin to move on in a way that honors him and the love that we have while still getting what I need.

Counseling our marriage

Up early today and busy with getting ready for a house project that involved moving some furniture, etc. Great anxiety for H as "someone is coming early in the morning and I have to have my breakfast made before they get here." So, we're both up early today.

I'm sweeping and just moving stuff around and H asks me, "Can we get some marriage counseling? I don't want to be here if we're not having sex."

"Uhhhh, sure," I answer, but not meaning it. He'll likely forget he asked me about this and I don't really care much anymore about the outcome anyway. Frankly, I would prefer to live alone and have wanted to for many years now.

And I didn't say what I was thinking, "I don't want to be here at all anymore either. I told you I was done years ago and I've said that over and over again. What part of "I'm done" don't you get?"

His question did make me sad, very sad. Our time as lovers is over and, even tho' I know this to be true, I'm very sad about this. Not only am I sad due to what H and I have lost, but I'm also sad because I want what he wants and likely as desparately as he does, just not with him.

And I just don't want to tell him "No" again and again and again.

For my new readers, sex has been a issue with H and I for awhile now. His doesn't work and I just end up in tears and can't do it. Very sad.

One bright spot is that maybe counseling will help him move on, but it hasn't in the past. We've been here before and nothing changes. Nothing at all. Sometimes, in my more irrational moments, I fantasize that he'll want to leave so that I don't have to be the bad guy and "kick him out"...sure, I'll continue to help him, but I won't have to live with him anymore.

What I can say is that it is unreasonable for me to expect him to change in any way. He just can't. And he'll never leave under his own steam.

While H may have lost some of his mind, I am losing more and more of mine as time goes on.

Yup, sometimes I just want him to die...but mostly, I just want it to be different.

The party in question

For many years, one of our lesbian neighbors has been having a large, very large garden party in July. Lots and lots of people attend. And for the past several years, I haven't gone.

It isn't the people or the venue, it's me: I just can't deal with seeing all those happy, healthy-looking passionate gay couples there (same reason I don't like Pride) and I'm tired of all the conversation around H's health.

Mostly, I am just tired of being the sick guy's partner.

So, this weekend I thought that I would just plan to go to the party…just plan to go for the first time in at least a few years.

Slept in on Saturday. Took a nap later. Good. Putz'd in the garden. Seems OK.

But by 4:30, I was a heaving, sobbing mess. And I continued to be a mess all evening. Even Sunday was a very emotional day. And I'm still verklempt here in the office on Monday morning.

While I'm trying very hard just to accept my lot and make the best of it, I really struggle with situations like this.

Poor H doesn't understand. For him, me not being there highlights HIS loss. For me, being there highlights MY loss.

H just thinks that I want him to die. What he doesn't seem to get is that our situation is what it is because he IS dying.

Just enjoy him, redux

I wrote last time about how I should just enjoy what time I have with H. I wish that I did. Frankly, most of the time, I just see him as a burden now.

Now that his health is (relatively) good, we don't have a crisis to rally around, to define our time together. And what we have left after all the crises over the past 10 years is less than satisfactory for both of us. How could we both not be affected?

I think that we both struggle with how to be with one another given our roller coaster. Given where we are right now, if H were healthy enough, or thought that he would be for long enough in the future, I know that he would leave me. And that would be OK. In balance, if he hadn't got so sick, then we would not be where we are.

And while I wish that what has happened to us didn't affect us and our relationship so much…it does. How could it not?

On the occasions that we "click," it is delightful to experience the fondness, humor, and love that we have for one another. But those clicks don't happen much anymore.

And so, I find myself not being able to enjoy him very much anymore. It isn't that he's a bad person in any way (he's actually quite a sweetheart), it's just that the challenges with his health and what it's done to him and to me and to us have changed us and our relationship irrevocably.

Simply put, neither one of us is happy, neither one of us gets our needs meet, and neither one of us knows how to proceed from where we are.

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.

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.

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.