Gifts and gratitude

I was talking with a friend of ours who has known H longer than I have. I surprised myself when I told her about the gifts that I am receiving as a result of H's illness and my time caring for him. I've certainly shared my grousing in this blog and so it makes sense that I'd share my gifts and gratitude as well.

Let's start with compassion. Before I met H (and even for awhile afterwards), I wasn't the most compassionate man. I wasn't mean or selfish, per se, but I was definitely not patient and compassionate when considering others' experience. Now, while I do get impatient with my situation with H, I find myself being way more sympathetic and patient with H and other people overall. Not just the disadvantaged or ill, but with everyone. In many ways, this experience has taught me to love in a way that I didn't expect: unconditionally.

Respect for mortality. Before H got sick I hadn't had much experience with people that I love getting ill, but in the past 10 years or so, I have seen what it means to be in poor health. As a result, I convinced myself to stop smoking some years ago. And most importantly, I feel deep gratitude for my good health pretty much every day and I try to do the right thing. And I realize just how precious good health is.

Slowing down. In my work, we are racing constantly…racing with the market, with other groups in the company, with our peers; fast paced doesn't cover it. But when you need to patiently explain the same thing over and over again, it helps to have patience…to gear yourself to the other's pace. While I can't claim that I've nailed this one yet, it does me no good to be impatient with H and I'm finding that it just makes life more stressful to be impatient all of the time.

Forgiveness. Can't say that I've got this one nailed down either. But I can say that I at least understand how important it is: not forgiving others just gets in the way of me loving them. And not forgiving myself just keeps me stuck in regret and pain.

Would I want to repeat this experience? No! Please, no!

But what is it worth to learn how to love unconditionally, to respect our health and bodies, to slow down, to forgive, and to be grateful?

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.

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.

He needs so little and I need so much

I've been thinking about how to position H in my mind, my life, and my heart. Our relationship has changed so much over the years, especially the last 3 or so as he has been so sick.

And all this time, I kept thinking that his needs were so overwhelming. But you know, what he needs is reassurance, some help with meals, some companionship, some love. Pretty simple really. Yea, I think that he would like more, as do I, but I think he's also finally coming into reality.

I keep thinking that he is in my way and that because of that, I feel more resentment towards him than is warranted and fair.

But he isn't in my way. I just think that he is.

His needs aren't so great, I just think that they are.

But, I need a fully functional partner and all that entails. And I haven't had one of those in a very, very long time…oh, let's say 10 years or so.

So, at this point, it really isn't about him at all, but about me.

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.

You are not the center of me

As I've written before , I've struggled with how H's health issues (and the impact to me) have become at times the center of my life. It's all about H and his health and his issues and what he needs and that he's leaving me bit by bit.

And I have fought this centralization (sic), knowing that I can't allow myself to be swallowed up, but usually I got lost in the maelstrom of it. Of course, how could it not impact me?

What I haven't been able to do is to just accept: I am caring for a sick loved one and this is what it is. He isn't any more than he is, which is less than I need. He can't be. He won't ever be again.

And also accept: I don't have the heart to send him away…I couldn't do it when he was so direly ill, so I just have to release that possibility as long as he is weller (sic).

And, most importantly, if I accept it for what it is and don't fight it and rail against it, then maybe I can focus on what I need (which is a lot, admittedly). If I can just get to the point of acceptance that he is what he is and that won't change and that he will continue to be home for now, then (my hope is that) I can be more rational about how I approach my life and what I need.

They say acceptance is the final stage of grief…my hope is that I'm nearing the end of (at least) this part of the road.

Bits 'n' bats

Cutting myself some slack

I've been really ragging on myself recently about: my drinking, my performance at work, my social life, my emotional state, my choices, my depression, etc. etc. etc.

I keep forgetting that this is the cost of my choice to stay with H, plain and simple.

Once I started giving myself some grace for why I'm where I’m at, I felt much better. Forgiving others is one thing, forgiving yourself is harder, I think.

At least it's not home

After a bit of time off last week, I can happily say that work is refreshing and just a bit overwhelming. Home is just bleak.

I used to find that I enjoyed his companionship, that it nurtured me to be with him. That is no longer the case.

Odd that work is more fulfilling than home...not because work is so great, but that it's not home.

Giving up

I've tried a bunch of ways to deal with my depression: exercise, cutting back on my drinking, eating better, …. But it's just too oppressive, bordering on debilitating.

Depression is one of the stages of grief, the one that says "I can't bear to face going through this." And I really just can't.

So, today I will schedule an appointment with my Dr. to go back on my anti-depressants. Goodbye, sweet Johnson…it was nice getting to know you again.

If you know what I mean

I get a phone call from a long-time friend's wife yesterday. H and I have know these folks for at least a decade now. I've been invited to a BBQ on the 4th ("we wanted to invite you...") and I can bring "…a guest of your choice…anyone you want to…if you know what I mean."

I said, "Hmmmm, I'm not certain that I do, but H is taking a nap right now, so let me talk with H and I'll give you a call back."

Was kind of taken aback that H wasn't explicitly invited, nee, he was explicitly not invited. This friend's wife also told me some years ago that she didn't like H being around her (much younger then) kids, that he was "too weird."

And when this woman's husband, my friend, was here a week or so ago for a visit, he pretty much ignored H or at the very least, was patronizing and bossy with him.

While I can't claim that I am always the most patient with H, what I can say is that this behavior is not OK. It is not OK to exclude H from an invite and it is not OK to be rude to him.

I think that part of the reason this bothers me so much is that I've already moved on in my head in many ways, yet I still go through the motions of doing the right thing with H. I don't actively exclude him, I try to listen, I try to be supportive.

Yet, I see others doing what I only dream of: H is now yesterday's news. Next.

Once again, the drama is about H. It's always about him; it always is.

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.

Just enjoy him

As I've written here before, H's health has been up and down many times over the past few years. When he is very sick, the obvious focus is to get him well again. And when he is well, we both wonder how long until he gets sick again and we both try to recover from the last time he was sick.

When he became so sick a few years ago, when I started this blog, we all thought it was the end, but it wasn't. And last year, we thought so too. And so on, dating back some 10 years or so.

So, I was talking with my shrink about what do I do now that he is getting better again? How do you go from a crisis to it's OK again…how should I feel? H and I are both concerned that his VL will only stay low for awhile and then start to rise again…it's happened every time.

So, how do you go forward, knowing that this will likely happen again?

My shrink laughs and says, "What else can you do but love him and enjoy him? None of us knows when we're leaving this place. All we can do is love those we love and enjoy what time we have with them."

I remember when one of our pets was very sick with cancer. Now, the pet wasn't in pain (at least the vet didn't think so), so he sent us all home and told H and me: "Spend what time you can with him, just enjoy (your pet) while he is here with you. It will be time soon enough."

Focus on the moment and enjoy them while they're here. What else can we do?

Controlling us with fluoride

One of my local cities is talking of taxing or outright banning bottled water.

H tells me last night, "They're banning bottled water in (city name). You know, the Nazi's gave their prisoners fluoride so they could control them. That's why they're banning bottled water you know, they want us to drink tap water so that they can control us."

I say, "OK, so they want us to stop drinking bottled water so that they can control us with the fluoride in tap water?"

H laughs, "That sort of sounds like one of those conspiracy theories, doesn't it? But it's true, tho'."

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.

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.

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.

Witholding

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 future...my 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.

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.

Good news, bad news

For a year or so, Drs. have had a hard time controlling H's HIV viral load. His virus is resistant to all, literally ALL, the meds that were available last year. As a result, he went into a nose dive last Fall, the culmination of which was my ill-fated attempt at placement and a corresponding nose dive into burnout for me.

But in February of this year, new meds came out. And a few months later, his viral load is undetectable for the first time in 10 years. And his T cell count is the highest it's been during that time as well.

At the same time, he's taking what amounts to chemotherapy and it makes him feel sick a lot of the time. So, whether his viral load is up or it is down, he's just not able to participate that much.

It's happened many times, about every two years or so: his virus gains resistance to the meds he's on, his health takes a dive, we discuss hospice, etc. Then, new meds come out, they pull him back from the brink and for a year or so he's out of the woods. Then his virus develops resistance…rinse and repeat.

What's striking this time is that his dementia and delusions don't seem to be improving, even as his viral load drops, hence all the fretting about alien conspiracy theories.

More than his physical health, what has been hardest for me is the mental decline.

Accepting craziness

I've come to the conclusion that H's mental state is doing nothing but declining. And so I now think of him as crazy. It's one thing to have dementia, it's another to be "crazy." The more I've thought about this, the more freeing it is…this is a key part of my acceptance work to call it what it is.

Part of me is sad because I'm giving up hope that he'll ever get better, but he just won't. And as he sleeps more and more and becomes more and more delusional, I know that the end is in sight. What end, I don't know, but some end is in sight.

And so, the drama grinds on, but seeing his mental state decline so much recently is helping me accept the inevitable more easily and, perversely, gives me much hope for my future...as in, I will have one soon.