Stuck at home

Thank you all for the comments and inquiries.

H is stable right now (which is good), but the quality of his life, well, in a word, sucks. The usual: sick, in pain, tired all the time, forgetful, somewhat paranoid...you know the usual.

I received a summons for jury duty next month. I've done it before and found it interesting and a nice break from the usual grind.

I was talking with H last night about jury duty and he said, "Now, don't forget your responsibility to me."

"What do you mean?" I asked.

"Well, if they want to sequester you, you have to tell them that you can't," he said, "because of me"

"Oh, I see," I said. And the following immediately came out of my mouth, " It's really sucks that you can hardly leave the house because of your health and it's hard for me to get out the house for the same reason...few trips, no social events, no entertainment events, and not even jury duty."

"I'm sorry," H said, "that your stuck here with me."

He looked very distressed.

"I know honey; I know that you would change it if you could...but you can't and neither can I. Let's just make the best of it we can."

Acceptance is very, very hard for both of us.

But, right now, I’m just focusing on making myself happy as I can and working on my bucket list. Many of the items on my list either require a functional partner or no partner...those will have to wait.

All H, all the time

Well, I'm trying to give y'all a more balanced view, as not all is bad in my world (although incredibly crazy)...but you know, it is still bleak with H. In many ways, my crazy job is a respite from my caregiving and issues at home. And for that I am glad that I have a distraction.

It just seems that there is always a health crisis/issue with H these days...if it isn't one thing it's another. He's lost 30 lbs due to GI distress, had to have his gallbladder taken out, has had major issues with obtaining some meds, a whole pile of stupid Dr.-related stuff, and serious side effects from some new meds.

Latest is that his virologist is in collusion with his pain Dr. to reduce the amount of pain meds H is on. The pain Dr. upped and upped his pain meds until she talked with his virologist. Now, everyone's in an uproar again.

It nets out to, I work and I deal with his health issues.

Even after having his gallbladder removed, he's not really eating much...even his favorite cinnamon rolls sit on the counter uneaten. And he still sleeps almost all of the time. So, he can't even make a sandwich for himself and won't eat what I leave for him.

I talked with him about how we might need to have someone come in during the day and make certain he eats. He thought it "ridiculous" that someone has to "babysit" him. I told him that Drs have told me to expect that at some point he will not be able to do some aspect of daily living activities and that he will need help.

H said, "Yea, OK, I know that is where I'm headed. I'm sorry. I love you (asm's endearing pet name)."

"I love you too, H."

Halloween snippets

Family visits
H's dad and youngest sister (G) came for a visit; they live in a far away part of the US.

The occasion was a wonderful soiree for the middle sister's 50th B-day.

G hasn't seen H for over two years now. Before she came up, H told her that he "is not sure he can keep doing this." And when she saw him, she was shocked at how thin and frail he was compared to two years ago, the last time she saw him.

G is wanting to come up to see H again before the end of the calendar year. And I am glad for that because there is no way that H can make the trip down to see her.

My dance card is full, thank you tho'
On a related topic, H has to have his gallbladder removed and they also found an irregular heart beat when they did an endoscopy.

So, off to a cardiologist for a pre-surgery screening (never heard of this before).

I'm terrified that H won't wake up from the surgery and I told him so. He said, "I know, (asm), but it won't be bad for me, I'll be asleep. Know that I love you."

Present is as present does
I strive to be fully present when I'm with H (well, just in general). As a result, I find that I say things I don't expect, such as, "I'm tired of working all the time...at work, at home...I have to do everything now...it's just not fair."

H responds, "I'm sorry..."

"Me too, but I know that you would change it if you could and I would too. But it is what it is, so let's make the best of the time we have."

"Is it OK if I take a nap?" H asks.

"Of course, honey."

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.

The bane of proximity

Both H and I struggled upon my return. Once I came back, had a good night's sleep, and I needed to do something for H (make dinner), all of those resentments, fatigue...the burden came rushing back...less than 24 hours after getting home.

Yea, holding H in my arms was wonderful, but after the initial elation, it was the same ole, same ole feelings of "I don't want to be here. I am so done with this. Etc."

And H was so looking forward to my return, but of course, he, like me, had unrealistic expectations for what it would be like once I got home. It didn't turn out the way he wanted and so he's been in a major funk for over a week now.

It is the old cliché that absence makes the heart grow fonder. That is indeed the case, but I wish that proximity didn't undo that fondness so quickly.

Last night, I was sitting at the dinner table with H and he blurts out, "Can't I just die?"

I said, "I'm not certain what to say, honey."

"You don't have to say anything. I'm just tired of not being wanted...even S(his friend with benefits) doesn't want me anymore." He's crying now. And yet again, I'm stuck between wanting to comfort him and boundaries that I know need to be in place for my sanity.

And it pains me to see him in pain. In spite of it all, I don’t want him to experience pain, but that is completely unrealistic as all he has had for the past 15 years are losses.

I wonder what his experience really is. Most recently, he was expressing alarm to his nurse and me about the oil spill in the Gulf, volcanoes, floods, & earthquakes all make it likely that he won't be able to get his medications when he needs them.

In any case, the up-close view was just as I left it. I blissfully forgot the burden while I was away and the love for him took center stage, where it belongs. Another good reason for placement.

The beauty of distance

I've been in NYC the past week for work and have enjoyed being here in the city with my work crew. Must say, tho', that I'm far too old for the combination of working on the road, the time zone change, and the all-night party that the city can be. Yea, and a few hangovers as well.

As in the past, when I was getting near to leaving on this trip, I couldn't wait to leave and get a break. And now, as has also been true prior, I'm looking forward to seeing H again. Odd to go from being angry at H for all the exhaustion and burden to missing him and looking forward to seeing him again.

Regardless of all that has happened, the fondness and love for H is still there.

I find the emotional whiplash exhausting...an exhausting way of being that has dogged me for over a decade now. The gifts - compassion, being able to set clear boundaries and keep to them, patience, respect for my own mortality (and his), and belief in the survival of love in spite of overwhelming odds - are great, but so is the cost.

It would be easier if I were either consistently resentful or consistently in love. But that isn't the way it is anymore.

When I see other couples, I wonder what their lives are like. What it must be like to not have such a whiplash every year or two. What it must be like to stay in one frame or another: either resentment that builds over time and results in divorce or love that builds over time and the sense of the adventure of a life shared and all the excitement and comfort that brings.

But, from where I sit now, some 3,000 miles from home, I'm excited to see H again and to hold him in my arms. I wish that I could hold onto this feeling once I get home in spite of the burden of caregiving.

I'm sorry you're stuck, redux

Last night, I talked with H about his comment: "I'm sorry that you're stuck caring for me."

I thanked him for acknowledging what a difficult situation this is and I told him that I don't blame him for it.

"Where we are is because of your illness, not you," I told him. "I don't blame you for this, I blame your health. I wish that it was different, but it is what it is."

(Lots of conversation not worth repeating here.)

The core issue is that H can't accept that our relationship is irrevocably changed...he keeps telling me that I'm "punishing him" by not re-engaging in a romantic relationship as soon as he's feeling better.

I told him that "I can't deal with the whiplash. You're going to die, no you're not, then you're going to die again, then you get better and want me to be the loving man that I was earlier in our time. You don't remember last year, you could hardly get out of bed, couldn't make a sandwich, and now you want me to act like nothing ever happened. I can't keep up emotionally."

"No, I don't remember what happened last year, but I know I was in bed a lot," he says.

I continue, "If you want me to show up, you need to show up too. And you haven't for years, except for a few months at a time. I do love you H and I want to make certain you're OK, but I'm mostly a nurse now anyway, not a partner."

And then the divorce word comes up again. Sigh.

So we go through all of that again. And I told him that I'm not going to make him leave, but if he wants to, let's talk about that, but where will he go?

The whole thing netted out to him begging me to place him at the facility that we have planned on using when the need arises. Then he told me he didn't want to talk about this anymore.

This morning, I asked him if he remembered our conversation last night and what he thought about it.

"No."

Monday, Monday

I H8 VD
Just don't like Valentine's Day (humbug). My (few) single friends don't like it as everyone gets all giddy and romantic with their SO. I've got one of those, but I dislike VD as much, maybe more, than my single friends.

Not because I'm lonely this VD (well, sort of), but because I'm in this tween space…not really involved and not really single. Yet, I feel obligated too and I also want to... do something for H….

Yet, my desire on this Valentine's Day *is* to be a single man.

So, H and I exchanged cards and a bit o' chocolate. A nice acknowledgement without any reference to the sex and romance part. Just the love, then…what a relief.

What isn't there
I work with a bunch of smart people, really smart people. And when you get into a meeting with them, for some reason they focus on what isn't there: here's what's wrong with this, here's what you missed....

Now, this isn't restricted to work certainly, as many folks focus on what they don't have instead of what they have.

I have a friend who is quite wealthy and healthy, has a wonderful man who loves him, several great kids, and more toys and property than anyone could want. But when I see him, all he talks about his how or ex-wife isn't doing this or that, how he's lost money on this or that transaction, how his kids aren't growing up right, and how much he hates living here and wishes he were somewhere else.

As annoying as I find this, I fall into this as well. In fact, I've whined here about my lack, sometimes at great length.

In balance, I'm healthy, well employed in a job I like, and generally a happy person that owns a home and loves my garden and music. No real worries in life other than dealing with H dying, which is a big one.

The tough work for me to reach acceptance and always see the sick and vulnerable man that I love who needs my help instead of seeing what he isn't doing for me (besides it's my job, not his, to make my life work).

Peace in the house

Since the very brief conversation that we had, the tone in the house has been more peaceful, more gentle. No real whining, carping, no angry skulking from H.

Part of this is that between me stopping drinking and taking anti-depressants, I'm just in a better mood.

But most of this is just H and me clearing the air with a thank you and a you're welcome.

This isn't to say that all issues are resolved (far from it), but I needed to hear some appreciation to remove that chip on my shoulder. And, as much as I stuggle to not have any expectations or needs of H, I needed to hear him acknowledge what it is that I've done and continue to do.

Appreciation

We're in the office, surfing the Web and H says to me, "I love you (singleman's name).

"I love you too, honey."

H continues, "Thank you for not abandoning me."

"You're welcome."

Life and presence

Get a life

H has been struggling with side effects from his many meds: gaining weight, sleeping a lot, and most notably, just feeling like-he-has-the-flu sick. The latter is from his antiviral meds. H wants to stop taking the antiviral meds so that he can "have a life" this Summer. In the past when he's stopped his meds, he'll feel great for a month or so and then get very ill; been through that before and would prefer not to repeat.

In some ways, I don't like it when he's feeling better. His demands on me increase…he feels better so he starts more projects, but he rarely finishes them or can finish them anymore. And when he's up and about, I should just enjoy him while he's here, but I struggle with that too: I have all those fond feelings for him that I feel very conflicted about because I've been up and down too many times before.

And when he's feeling better, his expectations rise: he wants to do stuff with me, hang out with me…normal stuff really. But I just see it as work….seems like all I do is work these days. Work at work, work at home…little down time right now. And, to be honest, it is work to be around H for me now that I'm more present.

Being present

One of the side effects of (some would say the reason for) my drinking was that I was not present when I was at home. Heh, hard to be present with a minimum of a 6 pack a day.

Now, without drinking, I can be present and I find that a challenge. I can deal with the notion that he's sick and afraid and feel compassion, I can deal with his dementia and be patient and try to understand, but what I can't deal with is the thought that this will drag out for (many more) years…knowing that I'll not (ever) have a partner that meets my needs.

And yet I struggle to get those needs met now due to feelings of guilt and shame as I'm "leaving" my partner. Very strange, but that's how I feel. As much as I want a partner, or even just some fun, the block is there and much of it has to do with the thought of lying to him or hurting his feelings if he found out.

Dementially yours

As my head clears up, I'm really noticing how bleak my time with H is…especially on the weekends. And because of my distress at seeing how empty and odd he is/we are, I drank at home to numb out.

While H wants to spend as much time with me as he can, I find that I want to spend as little time with him as I can get away with. I'm in a weekday evening "class" at my local treatment center and, even tho' the classes are a bit dry (sic) at times, they at least get me out of the house in the evenings and talking with other adults. Even AA meetings, in all their bizarreness, are a relief for this reason.

Our time together is reduced to watching TV, smoking cigarettes (started that again, but will stop again), and eating dinner. I'm just bored with him and as we continue this long, slow declining dance together, there just isn't much of him left there. And I feel great distress from this.

Our conversations are pretty much me talking about work and my projects/hobbies and him talking about how he's still angry at his dad because "he never would admit that I'm right," his continual frustration and angst about being ill and having to take meds that make him sick, and reliving and being angry about the past. Oh, and the latest gadget that he found surfing the web that we have to get.

About a week into my treatment class…just as my head was beginning to clear...H told me that he wanted a divorce because I had mistreated him so…"I'll live in a hole if I have to." The next day he told me that he didn't want his medical smoking to cause us to break up because he knows that when folks get sober, they often have to cut all prior ties to stay that way.

Over the past several years, I made the transition from lover/partner to friend/caregiver emotionally. But I was too drunk to really notice it happening bit by bit. Now I see it. H readily accepts my friendship and care, and he clearly benefits from this. But H still thinks that I'm his lover/partner, which I no longer am in my mind and heart, even tho' I love him a great deal.

I don't have the heart to put this change in his face...he'd forget the conversation anyway...so every day I dance around the rotting elephant in every room.

If he were not demented, I would just tell him or he could see what has occurred…that wouldn't lessen the impact, mind you. But given how he is, he can't see it, doesn't remember what happended, and continues to live in a distant corner of the Twilight Zone, expecting, hoping that when I'm sober long enough I'll come around again.

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?

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....

I want you to be there for me

While there is ample evidence that he's simply not capable of meeting my needs, I still want him to be there for me as I struggle through his waning days. But he simply can't be there in the way that I need, but that doesn't stop me from wanting it.

Oh sure, I can intellectually understand how he's not capable anymore, that H is my patient, my job, if you will…and not my partner anymore. But my heart still yearns for him to be what he once was and to be there for me as he once was, plain and simple. How could I not?

And if we were living apart, say with H in a facility, the physical distance would be the evidence I need to really get that he is no longer there for me, literally and figuratively.

H and I continuing to live together has slowed down my grieving and transition in many ways...there is no marker like moving away or death, just a long grind down to the inevitable.

A vignette from last night (this has happened many times in the past month or two):

So last night, I'm sitting on the couch watching TV with H, holding his hand. Suddenly, his hand gets very sweaty, then very cold, and he's stopped breathing. I touch his shoulder, once, twice...nothing...Oh God is this it?...then a firm push and say his name. He comes to and says, "Oh, I must have fallen asleep."

Anger management

The husband of a dear friend of mine has Parkinson's and the progression is limiting what he can do more and more. My friend told me that she finds herself getting so mad that her husband can't do even simple things (like the dishes) anymore...not just irritated mad, but raging mad. She asked me what I thought she should do and I said, "Don't expect anything from him anymore."

I was talking with H the other night and somehow we got onto the topic of anger, my anger. He's pressing me, what am I so angry about? "That I lost my partner, my lover, that I'm exhausted from all this." "Well," he says, "you can't be so angry and still love me. You better talk with your therapist about this (he's yelling now and goes on for about 5 minutes in a rage)." Everytime I try to say something, he cuts me off and yells louder.

He's screaming now about how our relationship isn't what it could be, should be and that this is my fault. I tell him that he's living in a fantasy world...out relationship has changed, period. More yelling, "You're the one living the fantasy...you go off to work everyday, make money, have somewhere to go...I'm hear all day, alone." He's crying now.

Don't expect anything from him anymore. Don't expect him to understand.

H's has been having dreams with lots of crying, he says. And lots of yelling. I'm not in those dreams.

Next month I'll be travelling for a week and H will be visiting family for two weeks. So, for ~3 weeks I won't see him. I need to get used to him not being in my life both literally and figuratively. It will be a very welcome break.

How do you be?

I have a hard time separating out my love and desire to care for H from our history as lovers, romantic partners, spouses, soul mates.

He so wants the romance, the way it used to be, and of course gets reassurance from me when I provide the kiss, hug, etc. I don't get any reassurance from H when he returns the favor. All I can hear in my mind is a voice screaming, "I am done with this."

Yea, I want that too...just not from him anymore.

I am done with that. For many years now, I've gone through many motions (sic) to give him that reassurance. But it get harder and harder to fake it.

And so I struggle with feeling guilty about just not wanting the romantic part from him anymore and, more to the point, dealing with his reaction about that.

The dilemma is that I love him and I know that he needs that attention (we all do), yet I just don't want to do that with him anymore.

But the real question is: How do you continue to live with someone when you are done with the romantic part, yet you desparately want that, but not with this man? And yet I love him and want the best that I can do for him.

The reality is that after being his caregiver for so long, I can't be anything but that (albeit a caregiver that loves him deeply).

Just smack his butt, etc. and make him feel good when smacking his butt is the last thing I want to do. It's not about what he needs anymore, other than the caregiving part.

How do you be under these circumsances? How am I supposed to interact with him? How are we to spend time together? What are we, then?

Neither of us likes where we are, yet here we are.

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

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.

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.