No more cleaning & nothing to say

As expected, H ran out of steam after a few days of proving how healthy he is by cleaning the house.

He's now back to sleeping most of the day and is marginally incoherent when I try to talk with him.

I find myself with nothing to say to him anymore. I find myself just not telling him things, like I've talked with his Dr. about his cognitive state, that I've talked with Place about him going there, that I've resumed my therapy appointments, that my job is a dead end for me (I think) and I have much anxiety about finding another one.

Now, this is in addition to how much I've been witholding about my emotional state from him. I realized awhile ago that I couldn't share that with him as it's just too scary for him...realistically, this fear comes from fear of losing me. I understand that because he is so vulnerable. But, in spite of just about the worst situation that I can imagine, he's not losing me entirely.

Over time, not only is his life shrinking, but our lives together are shrinking as we interact less and less about what is really going on with us. Very strange. He's telling me less and less because he wants to appear healthy; I'm telling him less and less because I just don't want to share.

Ah, such is the state of our marriage today. Very sad.

I know how we can improve our relationship, but right now, he won't go for that.

Time machine

It's one thing to see a still photo of yourself taken 15 or 20 years ago. It is entirely different to see a movie of yourself.

About 15 years ago, H & I had a commitment ceremony and we recorded it with a video camera that we bought for the occasion. H had the tape of this burned to DVD recently.

So, I didn’t really care to watch the ceremony again (I’ve seen it a few times and it is wonderful)…mostly because I felt so cheated, seeing H all strapping, handsome, very much in shape, and energetic. For H, it is a great reminder of our love and commitment. But for me, it just made me mad and sad because of what I’ve lost.

In addition to the ceremony, H had filmed us just hanging out, watching TV at home. It was great to see how we used to interact, the playfulness, joking, quick exchanges of witty repartee. We were so natural together, so much at ease; we did not have the burden that we now have.

I miss how we used to interact, when we joked, played, tickled, and just had fun together. When he used to be able to keep up with my wise cracking. When he used to be able to crack some of his own wise (sic). We had so much fun together then.

I’m sad for myself that I no longer have this funny, smart, sexy, wonderful man healthy .

And I’m sad for H because he is no longer that way.

It just seems that watching our history should be a pleasant, reinforcing experience. But it isn’t.

Even our past is tainted now.

Unconditional love

After talking with H about "going somewhere" (sic), life at home has been less tense and entirely predictable. I certainly feel much better and am more relaxed, more present. Lesson: I should have talked with him about this awhile ago; I held back due to not wanting to upset him.

I should know better by now. I did in fact upset him a great deal. His first reaction was that I'm divorcing him. He sees me wanting him to go somewhere as losing my love, not something I'm after as a result of my love for him.

But we both survived and life in all its mystery & glory just goes on.

Now, H is all about proving to me that he's not so sick, doesn't need so much care. He's been running around, cleaning the house, shampooing the carpets, dressing up during the day, etc.
There's this whole notion that if he can just prove that he is healthy, then I'll somehow change my mind. Practically speaking, it also means that he will withold important information from me, e.g, how he's feeling, whether he's fallen, etc.

He equates going somewhere, even a place that we both agree is wonderful, with "being thrown out onto the street" and losing my love.

He asked me, "Is cleaning the house enough?" Huh? Enough what?

I told him that I really appreciate the help with the house. But I'll love him whether he cleans or not. Whether he's sick or not. In fact, no matter what.

My love for him doesn't change. In fact, if I didn't love him I would not be having such a hard time with all this.

What he's trying to do is to prove how well & self-sufficient he is, but I already know better. It's not sustainable. He'll bust his booty for awhile and then collapse and sleep for several days. I have seen this cycle before.

Nothing that he does (save for maybe winnning a 10K race right now) will change my mind about what I think is the right thing for him (and for me).

How do you say (other than just saying it)? "My love for you is unconditional as it has been for the last almost 25 years. I brought up you going to X because I love you, not as a way to get rid of you. It isn't about divorce, it's about making our relationship better, you getting the care you need, and me focusing on my work. It's because I love you that I talk about these things. You don't have to earn my love or prove anything to me. Whatever you do doesn't change my mind that it is the right thing to happen."

"You don't want me here"

I finally had the conversation with H last night about going to a facility. Not a pleasant conversation, as expected. I came to the conclusion that I just had to say something as it has been eating at me for so long.

I presented it as, "I'd like you to consider the possibility of going to x for three reasons:

Our relationship is not what it couldbe. I'd like to be your partner again, not your caregiver and as long as I have care responsibilities, I can't.

Your care needs are increasing over time.

I need to focus on my work."

His reply, "You're breaking up with me."

"No, I'm not. It isn't about that. I'm burned out. I'm asking this because I love you."

He says, "I'm not going unless my doctor tells me."

"I've talked with him on and off the past several years about this. He's been willing to write the order 4 times this past year and I've said 'no'. I want you to condsider that you're sicker than you think you are...that you're in denial about it."

He's crying. "You said that you'd never make me leave my home, our home."

"I'm not making you leave. I'm asking you to consider it. Nothing will change here at the house. You can come visit on the weekends, maybe during the week even. The pets will be here, nothing will change."

"I've been stewing about this for the past year and a half. I've got others telling me that it is time and that they don't know how I can keep doing what I'm doing."

I encouraged him to think about it, to check it out with others, keeping in mind that others may not cop to it.

"Well, if I have to leave, I'm going to commit suicide. (Suicidal thoughts again.) I won't be able to survive anywhere else."

I told him that's not what I want. Place is a wonderful place, tho' admittedly, I would be frightened too if I were him.

He's pressing for someone to come in and care for him now, something that he's resisted for a long, long time. I told him that I didn't think that this would help as I've got to take care of the arrangements, etc. because he won't be able to do that part. In other words, no real relief for me.

Also, he's very suspicious of my motives and I pointed out that he's been more than a little paranoid recently...like accusing me of stealing from his savings account 3 times over the past year. I suggest that he just take what I'm saying at face value.

For the rest of the night, H is running about the house, doing chores, cleaning up, putting laundry away. He is trying to prove that he can help, that he's not that much of a burden.

Both of us crying from time to time and me holding him, telling him that I love him.

Dinner and bed. Not much else there. He's in a state of shock and I would be too. I'm tired and have had more than enough to drink.

This morning he gets up as I'm heading out for work (after a nice hot tub soak on a sunny spring morning for moi!). He's crying. Oh, God, I can't miss anymore work...

I look him in the eye and tell thim that I love him. And that I have to go to work.

He says, "You don't want me here."

"That's not what I said. That's your guilt saying that. I said it was for 3 reasons: our relationship is not what it could be, your care needs are increasing, & I need to focus on work. I did NOT say that I don't want you here. You are saying that, not me. I want you healthy and here, but that isn't going to happen at this point. I have to go to work, honey."

I hate leaving the house when he's crying.

I expected that he would be upset and it hurts me to see him cry, but I simply had to bring this up. There's a part of me that thinks I should have stayed home today, but I'm just not going to.

I am so tired of dealing with all of this stuff. And somehow, I have to focus at work.

The unbearable lightness of waiting...

I've been working up the courage to put H into a facility. There's been a shift from wondering "is this the right thing to do?"to "I'm going to do it, now when do I?" Really, it's "when do I talk with H about it?"

It's hard to describe, but I feel so much better knowing that I'm going to do it (as opposed to sitting on the horns of the dilemma all the time). I feel lighter, anticipatory...it feels right for me, even tho' I am nervous about how H will react.

So, I've talked with his Dr. and talked with the facility. They are ready for H at any point in the "near future." And Dr. is on board.

Now, I just need to talk with H about this. And I'd like to do it sooner rather than later. Don't know that there is any good time, there is just a time. H will likely be upset & angry...but I owe it to him and to myself to be honest.

This weekend, H was up for just a few hours during the day and then back to bed. He keeps telling me that he's tired of feeling bad, of being in pain. He's said this several times this weekend.

Oh, our cat of many years has cancer, it is incurable without heroics (and unclear that even heroics can help), and I don't want to put our kitty through that. Sigh. H and I have discussed this and he's way more upset than I am about this. I mean, I love our kitty and everything, but it is just more sickness in the house that I have to deal with from my perspective.

The countdown begins

Talked with H's doctor last night and told him what's on my mind.

Dr. agreed that the next time an opening comes up that he and I will discuss what is right for H. Given the history, admission is likely right, he says and, "I'm surprised that you've made it this far. You must love him very much." Yes.

In the meantime, I've got some other conversations to have with his other Drs. and with the nursing facility.

I know what the process is, but I don't quite know what to expect.

Looking for the courage

So, talking with my shrink last night about all this stuff again. Paraphrasing below...

He asks me just what is it that prevents me from doing what I know (at many levels) to be right: I can no longer live with H and he needs more care than I can provide. He needs to go to a facility.

1) I just don't know if it is the right thing to do. I may regret it.

"That is true for almost any decision in life. You just have to go with the best information that you have at the time, think through it, and then make the call. Maybe you'll regret it, maybe it will be the best thing ever for you and him. You just don't know. My belief is that it is right for you and most likely him and certainly for you two together in order to salvage what you can of your love/affection for one another."

2) Maybe he'll get better, although he hasn't in a long while. He has bad days, where he can't dial the phone, but days where he's almost cogent (at least when he's awake).

"That sounds like denial and bargaining to me. You've told me that he is slipping downhill over time and that he's getting more incoherent, paranoid, and incapable of self care. And that each time he goes into the hospital, he comes out worse cognitively."

3) I worry that my judgement is flawed, that I can't be objective about this (see #1).

"What have others, such as his family, your friends, your doctors said? You've told me that they all agree that it is time. They have seen this, you said. You said that you've all talked about it. You said that the Dr. was willing to write the order on 3 different occasions this last year. Don't you think that the Dr. is more objective than you, that he has more exposure to these types of situations?"

4) Fear.

"Fear of what?"

Fear that I won't ever be able to get the love that I need once he's gone. That I'm not worthy of love, somehow and that H is the best I can do. Fear that I'll be alone...but others do support me and love me and can be there for me, if I only ask them. I will miss him and his loyalty, companionship.

"OK. It is human to think that we're somehow not worthy of love...very human. It is not unique to you. Right now, though, you're both living in some kind of fantasy that what you have together is somehow working. Great, you have a loyal companion who doesn't meet your needs, who is slipping away into dementia, and whose time with you at home is risking your job."

OK, how about fear of being abandoned, of being alone...if I assert my needs over his (which is what we're talking about) and he goes away, it feels like I might die somehow. Not physically, mind you, but...we'll, it's hard to explain...like I can't make it without him by my side.

"That's just your childhood playing out. You're an adult capable of self care now...you've not only cared for yourself all these years, but you've also been caring for H all this time. You're the one who is working, who has friends, interests and is taking care of all of it. It will be far easier just to care for yourself once you get through this transition."

(The writer here demurs talking further about childhood.)

He's right. I'm waiting for the call from the Dr. and we'll put this in motion.

Once we get closer to the date, I'll be taking leave from work for a bit as it's going to be a rocky ride for a bit.

Goodnight and have a pleasant tomorrow.

Now, I'm stealing from him...

H calls me at work yesterday morning about 11 or so on his cel phone.

No greeting, yelling, "I only have $100 in my savings account. You told me last night you didn't know the balance...." I didn't.

So, I looked online at the banking record. "Oh, that's right, in December we agreed that some of that money should pay for the Christmas presents you charged...so I paid those in January."

"You lied to me, you (expletive deleted)," he yelled. "I wanted my money to do (my project) . Now, I'll never get to."

More swearing and yelling.

I pulled the phone away from my ear and said gently, "Now, sweetheart, we talked about this and I'm sorry if there was an understanding."

More yelling & swearing....

I said softly, "Honey, we'll put the money back into your account then, OK? I'm sorry that there is a misunderstanding."

More yelling & swearing. He hangs up on me.

I call him back...straight to voice mail. I left a soft-voiced message about how it was unfair to call me at work, yell at me, swear at me, and then hang up. Especially, since I'm so stressed about work right now and it was just a misunderstanding (meaning...he forgot what we agreed upon again). "We're going to talk about this when I get home," I said gently at the end of the message.
I left the same sotto voce voice mail on our home answering machine.

When I got home, he was asleep (typical) and after he got up I raised the issue gently with him.

He says, kinda yelling and getting more and more agitated, "This is the 3rd time that you've taken money from my account without asking me. I want the money for (my project) and you don't want me to do it, so you take my money."

I don't remember any time when I have taken money out of "his" account without him knowing and agreeing. Odd that we have had joint finances for over 20 years, but now he's talking about his money. Well, he's been doing that more and more recently.

Then he went on about how much of "his"money (SS disability) "I'm keeping," meaning how much goes into the house fund. We had agreed to the numbers a long time ago to make the budget work. I don't keep it, it helps pay for food, electricity, the mortgage, gas, cable TV, etc. Much appreciated since this is the only income he has.

I said, "Honey, we've been together almost 25 years and you're saying that now you don't trust me with money. This is the first time I've heard you say that. And I want to let you know just how much that hurts me, how disappointed I am, and how totally unfair that is to me. If you can't trust me by now, why are you here? Why am I here? I just want to remind you that we are on the same side."

I got all misty eyed and left the room, hurt. He never apologized or mentioned the conversation again.

H has been paranoid about others before and what they are doing (e.g., coming into our front yard and breaking the needles on a hedge that we have, our neighbors robbing banks or growing pot, ), but never me. This is getting really bad for my sanity.

This morning, I've left a message to talk with his primary doctor about getting Hadmitted the next time there is an opening to our favorite skilled nursing facility. Dr. will agree and then I'm going to be talking with H's family and then H as we get closer to the event.

Enough already.

And now the job....

For the past year and a half, I've struggled to fulfill my demanding job and take care of my sick partner, H.

It isn't just the 10 or so times he's been the hospital at least overnight; and, at least 4 times, he's been there for the better part of a week. Then pretty much a zombie for another week or two as he gets back on his feet.

It isn't just the dozen (at least) times that I've taken him to the ER because of any number of things, but mostly seizures.

It isn't just that he can't do much for himself anymore. Or that I don't get my needs met. Or that I'm exhausted.

It isn't just that I'm watching H lose his mind. Or his health. Or his personality.

It isn't just the job and all the crazy demands that it has that wants to take over my life.

It's all of the above and more stuff that I can't remember.

All of this came to a head yesterday, when having a somewhat formal conversation wth my boss about recent performance.

Apparently (and this is a surprise to me), I have "lost all credibility with management" and they're not certain that it is "recoverable."

I've missed too much time, not produced enough, and what I have produced is below what they think my ability is. (How about that for a sideways compliment?)

Now, few people here know what is really going on with my partner, but I tend not to talk about it very much for obvious reasons.

So, they have cut me slack for the past year or so, but are now putting pressure on me to ramp up the productivity.

My choices are many, but the most likely are: 1) buckle down and do my best to fix this situation or 2) go to another company. Internal transfer is not likely to work out in this case.

Problem is that I don't have the emotional energy to deal with either 1 or 2 right now.

I discussed this issue with H last night and, of course, he feels badly. How could he not?

What do I do now? I thought that I had the work thing under control. But I guess not.

Sigh.

Truth be told, there are really three things that make it hard to continue living with H:

• As long as I am his caregiver (read: live with him), then our relationship will never been what it can be. It won't ever be what it was, but there is certainly room for improvement.
• His needs for care are increasing as time goes by
• I need to focus on work and it is hard to do when you live with someone you love who is fading away

How do you work this thing?

So, last night H was looking for a phone number for some friends. We found it and H wrote it down in big numbers on a piece of paper.

He picked up his cell phone to call them and didn't know how to dial it. "What do I do? How do I use it?," he asked with a bit of tremble in his voice. "Oh, you just punch in the number like this," I said.

He punched in the number after a few tries and then decided it was too late to call them anway.

As it turns out, their phone number was in his contacts list, but he couldn't figure out how to find that contact entry either. He doesn't have to...all he has to do is say, "Call X" and it will dial. But he forgot that too.

Is that all there is?

So, back in therapy for me after about a year break. I stopped last year because, not only were my benefits running out, but also because I was running out of things to say. Yup, it's still distressing, I need to act, yup, it sucks, woe is me, time to act, no it isn't, I'm afraid, blah, blah, blah.

Now that I'm back in it, some observations:

• My relationship with H has digressed to one of "resentful roomate" and I am not emotionally present with him...I'm just kinda "flat." I dont' know any other way to describe it...maybe it's just depression, but it doesn't feel like that. Depression for me means that I don't want to do anything, which isn't entirely true.
• I realize just how much I don't like my life and how much I've let his illness consume me as it has been consuming him for some time. I mean, I get up, go to work, maybe the gym, come home, he's asleep until dinner's ready (which I'm making always), then he's up to eat (we don't really talk much), a few hours on the computer, and it's bed time. Weekends aren't much different.
• Unfulfilling doesn't even come close to describing my life. And that is my responsibility, not his.
• Caring for him and living with him is sucking me dry (no, not in that way!)

So, with all apologies to Peggy, I have to ask, "Is that all there is?" And, am I happy with that? No. Until H is no longer living with me, we will not have any reasonable "partner-like" relationship.

It is up to me to raise the topic of the nursing home with him and I just don't want to do it. Not certain why...some is guilt, some is fear, some is seeing the expression on his face. What I have to do is to not let fear stop me. I think that there is also the "I don't deserve to be happy" thing going on in my head.

One startling realization is that we all have what we think that we should have. In many ways, I do believe that we create our lives to fulfill our deepest expectations/beliefs of ourselves.

So, if you don't feel worthy of love, you don't find it...or you find a "love" that will refinforce your belief that you are not worthy of love. If you don't feel your needs matter, then you get someone who will reinforce that deeply held belief (Uhhh, HELLO!). If you don't feel worthy of success, then you get the level of success that you believe you deserve. This is the ole "what you think about, how you feel, and what you focus on" is what you get because at your deepest level it's what you believe you deserve.

All of this basically says that I am where I am because where I am is a result of my beliefs about what I deserve.

Kinda pisses me off, to tell you the truth.

Pushing the button

After a brief stay at the hospital (it took a few days and some heavy duty meds to get his seizures down), H was to come home. I was not happy with him coming home as he has been sent home before too early and then ended up back in the ER again a few days later as the seizures came back with a vengance.

Now, if anyone has been reading this blog, you know that when to get him into a care facility is my biggest conflict about all of this.

So, I told one of his Drs (his primary is out of town) that I didn't want H to come home and that I wanted him to be watched for a bit beforehand. H then went to an actual nursing home for a few days for observation, which gave me some time to get back on my feet after that bad cold.

What is weird for me now is that I actually pressed on his Dr. and got my way...although it was only a temporary stay. Was it really that easy to say, "I've had enough" and bang it happens. Seems too easy in some ways.

When he was in the hospital, I began to fantasize again about being on my own, without a sick partner to care for. After a day or so, I started to feel afraid of that.

Now that he is back home again (no reason to keep him in the nursing home right now), I'm eager to get on as a single man.

A friend of mine lost his lover of many years to AIDs some time ago. My friend told me that it is just a waiting game. Now, his lover died much quicker as they didn't have any advanced meds back then. So, the waiting game is longer for me.

My poor sweetheart in the maelstrom

More than a week ago, I took H to the ER because he was having a minor seizure. When this happens, and it has happened a lot in the past year or so, they watch him for awhile and then send him home if his syptoms improve. Sometimes, they admit him; last week, they didn't.

I've been mostly home from work for the past week. Partly because I have a wicked head cold and partly because H has been very, very sick. He's been in bed 80% of the time for the past week.

I've been talking with his neurologist, who has had me up H's anti-seizure medication. It hasn't made any difference.

H's left hand and left side of his face have been twitching and kinda paralyzed. He's been confused and very docile. He can hardly walk to the john.

When I took H to the hospital, he could hardly get into the wheelchair at the hospital front door. He looked so frail, so weak, so disabled. My poor sweetheart. His speech was slurred because his tongue was both numb and twitching.

I cannot believe that this is the same man that I have been with for more than half of my life. But I know it is because I have watched his decline for many years now. His decline has been very steep the past couple of years.

24 hours later (now), he's in hospital, and they still haven't gotten the seizures under control in spite of some heavy gun IV medications.

My poor sweetheart.

On the way down in the truck this afternoon, H told me that he is tired of this...of all the pills, the pain, feeling so very bad. I told him that what is happening is unsustainable; I can't care for him and the house and the pets and the job. I feel badly that I told him that I needed him to get well or die. (I wish that I had said or we somehow get you the care you need, so that I can be your partner...not your caregiven since your care needs are so high right now.)

His care needs now exceed my ability to meet them. Whatever is causing this: HIV dementia, PML, stroke, whatever...please give the man a break and let him go. he has been so sick for so many years and so miserable, please Father, just take him.

I have always known that this moment would happen. When I couldn't take care of him any more. And here it is.

I am both afraid that he will die and afraid that he will come back home. H's mom says that for my sake, he can't come back home. The precipitating event has occured and now is the time to act. To put him in a local faciliy that is world-renowned for its expertise and kindness. Where he has been before. And where he says he wants to go "when it is that time."

How do you say to the man you've loved for half your life, for 24 years, "Honey, I know that this place is the end of the line for you, but that is where you are at. I love you and can't care for you anymore. But we both know that these people here can. And you can come home on the weekends."

How do you acknowledge with this man that we both know that he is dying and that he isn't getting the care he needs here at home?

All I've ever wanted to do with him was to talk with him and make love to him.

And now we have to talk about dying.

A break, a blur, and a crush

So H has been gone for over a week visiting family. A break for me...just me and what I want to think about and do. I had forgotten just how much I do for him. Upon his arrival, a trip to the pharmacy, set up medications, hadn't eaten all day, dinner, variety of home projects (like why the TV suddenly doesn't work...just a loose wire)....

While he was gone, I felt so free, so unencumbered. The time went by so fast and I reveled in the brief freedom that I felt. I felt light, had a smile on my face.

Now I just feel heavy, depressed, like I'm dragging a weight around again.

Many of my aches & pains went away or were much less problematic while he was gone. Now, that stiff neck and sore back are back.

I'm really tired of this.

When there is no there there

My last post was "at what cost?" And now I ask myself that same question about me staying to care for someone who is so ill.

What if they don't have emotional room anymore to be there for you when you need it? I can't talk with H about how I feel these days. He can't hear how difficult all this is for me, how upset I am, how distressed at at the end of my rope I am. I get that. But he can't handle me being upset at all anymore about anything.

And, my friends, bless their hearts, can only hear this stuff so much. So, here it is on a blog.

In fact, on the rare occasion that H & I have an arguement these days (usually, I just let things go, which is why I've been so depressed in the past) and I raise my voice, he usually ends up cowering away and tells me that I'm "being mean." I'm just not a mean guy; I have been called many things, but never mean (until now). If fact, many people have told me that I'm one of the nicest guys they've met.

But, him seeing me upset just triggers his fear, poor man. I have learned that he can't be there for me emotionally because he has all his own stuff to deal with, but is this really a partnership anymore? And so, what I've learned is to just not share whatever is going on with me...You learn to live without that support & connection.

What if they don't have the physical ability to be your lover. And you don't want them to be your lover anymore because of how they are. You learn to live without that support & connection.

What if you don't want to go home, but you do. So, I go home, but I don't want to. There is nothing there that feeds me. It used to be that home was my refuge, but now it's my prison.

What if you have no fun together anymore. When you no longer remember what it's like to have a healthy lover. You learn to live without it.

How long do you live without these things until you don't know what they look like anymore? Does your ability to receive these gifts go away? Or is it just lying dormant? Does your skill as a partner or lover go away? I hope not. I'm eager to get back on the bicycle again.

At what cost?

H and I started talking last night about his fatigue. Seems that he's just been very, very tired recently and more so the last week or so. Most likely, his viral load is going up again...it's a very clear correlation: VL up, energy down. He's getting mentally foggier as well (also happens when VL goes up) and has a hard time remembering the conversation we were just having. He just kinda spaces out mid topic. It's hard to describe, but he's slowing down again. This happended last time his VL shot up. The rub is that his virus is resistant to nearly everything, so if it is going up rapidly (more than from 0 to 90,000 in a few months...which is fast enough for me), there's not a lot to be done, unfortuantely.

H says, "I wonder just how much money it's costing to keep me alive and if it's worth it." Last year his meds cost over $60,000 and his stays in the hospital were another $30,000 or so. One of his HIV meds costs $1,800 a month; the other two are a relative bargain, coming in at another $2,000 or so combined. And these meds are just 3 out of over a dozen he takes everyday. We estimate somewhere around $750+K in medical bills (all inclusive) for the past nine years or so.

I told him that without those meds, he wouldn't be alive today and it's been worth it for me (I didn't share my very, very mixed feelings on this topic). And he says, "Alive for what? At what cost? I feel like s4*! most of the time, my stomach's upset, I'm tired and always in pain. And the money they're spending on me could help a lot of other people." He rarely acknowledges my perspective on his situation.

He's feeling guilty that his medical bills are so high. Now, we have very, very good insurance coverage for him, so everything is covered. I tell him not to feel guilty about this...that our insurance companies have lots of money and for every person that has high bills, there are likely many, many, more (like me) that do not. But his self esteem has taken a big hit from having the "plague" and so he doesn't feel like he deserves anything at all. This is very sad. With former friends disappearing, being homebound much of the time, and focusing on his own losses and trauma somewhat obsessively makes him a pretty distressed guy right now.

He's taking antidepressants and I've been trying to get him to a psychiatrist to see about getting a new med, but I haven't been able to get him to agree and go.

So, years later, he is still alive, but at what cost? His quality of life sucks and it costs a pile of money to keep him alive. In the UK, I understand that they make cost/benefit decisions about a patient's care based on their likelihood of recovery. If someone is terminal, they don't necessarily do the heroics: Rx, procedures, and/or hospital care. (Some US HMOs do this too.)

We don't do that here...at least not our insurance plans. And I have mixed feelings about that. Of course, you want to keep your loved one alive, but at what cost to the individual, their loved ones, and the insurance companies?

Magnetic & dodging the bullet

While H has been poz and quite ill for some time (over 10 years now), I've managed to dodge the bullet somehow and continue to test negative. Whew. I've been waiting to hear a poz diagnosis (and I wouldn't be suprised really), but my results are always negative.

Many people assume that because my long-term partner is poz that I must be as well. Certainly, given some of the things that we've done in the past, before we knew his diagnosis, you would think that I would have ended up poz. Use your imagination....

What's wild about all this is that H and I were monogamous for many, many years, probably 15 or so. We both prefer monogamy (we are "built" that way, if you will) and we also realized in the 80's that being so would somehow protect us from the plague that was just starting among our friends and acquaintances. Guess not.

While I'm not going to go down the road of how he seroconverted (although I have my theories), I consider myself very, very lucky. At this point, how he got it is less important than he has been very ill the past year and may not have much time left here.

While I don't object per se to having sex with someone who is poz (as you can probably imagine, I'm safe to the point of paranoia these days), I do have issues with having sex with someone who looks sick.... And he does.

Ever see those old men with a round soccer-ball belly, thin arms and legs, no chest or ass, shuffling down the street with a cane? H looks like that now, but his face still looks like he's in his 30s and he still has most of his hair.

I wish that I could get past my visceral reaction to how he looks, but I can't. The magnetism just isn't there anymore (it hasn't been for a long time) and that is sad.

And so it goes.

VL going up...

From 0 to 90,000 in a few months. Yikes. His CD4 count is still high at over 400. Dr. says not to worry, but....

Keeping me from living

Have I stayed with H because I'm afraid of being on my own. A therapist some time ago asked me, "What keeps me from living while waiting for him to die? "

Am I hesitating so much to press for putting H in a nursing home because then I'll have to figure out my life and I can't blame him anymore for me not getting what I need?

I don't think that this is the case, but I do know that I fantasize a lot about being on my own, having freedom, which to me means less responsibility in general, and specifically, less responsibility to care for someone else.

I have held back from pursuing him getting care, going into a nursing facility, because I can't bear to break his heart...and I know it would. And I don't know that I could live with myself.

But I do know that I am done with the romantic part of our relationship and have been for a long, long time. He isn't done and lives in a fantasy world of somehow our relationship will get better...if I were him, I'd hang on to that hope as well.

The rub in not taking action due to concerns about how he might feel means that I miss opportunities...opportunities that may not come along again.

For example, some years ago I met a great guy...sexy as hell, built, smart, successful, funny, and spiritual. Not to mention a (mostly) bottom with an amazing ass. Oh, and negative too. We clicked in a way that I do with very few people...sometimes that connection is just "there" on many levels. He was in a relationship that was winding down, mutually, and was angling to get me to leave my sick lover...not directly or rudely, but it was there. And while I do think that our paths will cross again, I have regrets today for letting my loyalty and fear keep me from something that I know I wanted...and that I still want now, 4 years later.

And there were others and while maybe the connection wasn't as strong, if I were single...I know that I wouldn't be for very long. I'm just too relationship oriented.

How long can I hold my breath and deny my needs? I've done it for so long that it is second, if not first, nature. No wonder I've been depressed.

I don't blame H for my choices...those are mine to own alone...but I do blame him for being sick.

A 6 month horizon

Life goes on and on and on. H is doing well these days...well enough I suppose given that he's been in the hospital some 6 times in the past year. While the Drs aren't talking about PML or a short time to live, that cloud is hanging over us all of the time. Well, over me anyway.

H told me last night that he's been falling around the house a lot. I asked when and how and if he has his cane with him around the house. He says, yes, even with the cane, he's been falling. Now, he hasn't hurt himself, I think, but it's another factor in whether I think that he can take care of himself during the day while I'm at work.

Talking with my doctor, and, while she doens't know the whole story of what is going on with H, she suggested that I just arrange for hospice care now. Being told that I need to arrange hospice care for H twice in the last year is sufficient in her mind that he needs the help. Apparently, you can have hospice come in and do care for 6 months and then renew again in 6 months.

I need to talk with his doctor about this.

I'm seeing H fade more and more. And there's nothing I can do.