An exercise in reduction

Many days, H struggles to follow a TV show or a daily conversation. He will ask about the same thing over and over again with escalating anxiety about the topic. He offers only the same 4 or 5 topics for conversation and he stares into space for 10 minutes at a time. Most days, he sleeps most of the time.

Fewer and fewer days now, he can be articulate, funny, and charming...just a glipse.

I miss him, "like the deserts miss the rain." I so want for him to be there more than he is, but he is declining and there is less and less of him left.

While some deaths are sudden, I'm watching the process of H's life leaving him and him leaving us. I've written prior about our life together shrinking and he is falling behind more and more as I move forward just living my (rather dull) life.

For his sake and mine a big part of me will stay behind with him just to be with him, just to love him. He will be better for it.

And when I don't need anything from him anymore, I can just be with him. I will be able to forgive him for whatever it was whenever it happened or didn't and just love him unconditionally.

As he slips away and our life together recedes, all that is left is the love between us. And the way to the depth of that love is through forgiveness.

DABA doo doo

Denial, Anger, Bargaining, Acceptance

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

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

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

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

A summer afternoon vignette

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

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

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

"I'm OK." Hissing.

"Sorry to bother you."

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

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

"I'll cry," I said.

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

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

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

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

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

Longings unfulfilled

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

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

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

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

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

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

Connections missed

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

When All Else Fails, Eliminate Your Expectations

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

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

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

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

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

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

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

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

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

Back at the keyboard

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

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

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

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

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

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

A birthday, an upcoming visitation, and a tire

Yesterday was H's birthday and it was a peaceful day at home, thankfully. I made his favorite coconut curry dinner and made some homemade bannana walnut bread. A few cards, a modest gift. A happy birthday song first thing in the morning while he's sitting on the john. Just a typical day.

In a few weeks, we'll have some friends come and visit for a week or so. One of the guys, S, has been here several times already and he's a delightful guest (and a sweet man to boot). His sometimes BF, P, will be coming with for the first time and it will be nice to meet him finally.

H is a bit worried about them coming to visit. He said the other night, "I think that I'll need a wheelchair when I go places with ." What? H tells me that he's having a hard time walking around these days, that his legs aren't working properly...uncoordinated and sore and get very tired quickly. We'll talk with the doctor about this next visit, but my guess is that we're just seeing the progression of the brain damage (walking can become harder).

Make that a spare tire. Sigh. I've been trying to be good, but not good enough. I'm at my all time high weight and while I certainly have gained muscle mass over the past several years, what I'm seeing hanging over my belt is not muscle. Must eat less and exercise more.

Gaming & shrinking

Our life together has shrunk.

From a wide range of activities, friends, intellectual & prurient interests, hobbies, house projects, each having varyingly successful careers at different times, relocations to exotic places, our family of pets.

To what we are having for dinner, how he's feeling, how my job search is going, and most recently some rather distressing games on H's part.

I thank Jeff (comment in last entry) for pointing out that it's just anger escaping his body. I forget that from time to time. H is angry and he is also feeling guilty. If I were in his shoes, I would be as well.

While I understand, hearing things like "I sleep all weekend because you don't want to be around me," "you're embarassed to go out in public with me" and so on is really hard. There's this whole guilt tripping thing going on and outbursts of anger. Putting words in my mouth that basically position him as the victim and me as the guilty party in his victimhood.

A friend of mine refers to this as the "tyranny of the ill."

H has always wanted to be morally superior in all manners: "I'm a good boy, I know what is right, I do what is right (so that I won't get in trouble)." A family of origin issue for him.

And so that continues today. But in the past, there was so much more of our life together the moral superiority thing was small enough in comparison that it wasn't so bothersome.

And, the anniversary incident pushed me very far away and I am disengaging more and more emotionally. I don't think that was H's intent, but it is the result.

The end result is that there is little left for us but the gaming, the setting of the hook to see if I'll bite.

I am not engaging in the guilt tripping. I refuse to. I just smile and don't comment. What else is there to do? If I engage and take the bait, then it opens the door to more manipulation.

My belief is that me taking the bait less and less will result in him becoming less and less happy being at home.

My desparate hope is that it makes it more likely that H will willingly go to the facility. Although I have power of attorney and could "force" him there, I would prefer not to.

It is so very sad to see it shrink like it is. But it is what it is and I am doing the best I can to forgive myself, to forgive H, and to forgive all of our situation and past so that I can focus on loving him. I desperately wish that he would focus on forgiveness as well, but I don't see how that will happen with him at home.

A hotel of my very own

I realized last night that the only reason H is still with me is because I love him. But he is with me for many reasons, including that one as well. I mean he needs my income, my cooking, my occasional cleaning, my comfort, my driving, health benefits from my job, etc.

To a large degree, he lives at our house like a hotel. Sleeps whenever he wants, gets food from me, bills are paid, he doesn't have to do anything. Nor do I expect him too.

A few weeks ago was our anniversary; 24 years in fact. Both of us "forgot" it until later in the week and then I brought it up and apologized for forgetting.

Me: What do you want to do to celebrate?
H: Since we're not having sex hardly at all anymore, there's nothing to celebrate.
Me: Hmmmm. Now, ever since you got sick there have been issues with sex, but we've still managed to celebrate and honor the time we've had together and our love. Can't we just hug and acknowledge this marker?
H: No.

OK. So, we can't celebrate our anniversary now because he's not getting as much sex as he wants (but when we do do it, he doesn't work to speak of). Nothing else that we have had together matters. Even in our most sexual times, there's always been more for us together than just sex.

Boy, do I feel hurt, deflated (sic), and invalidated. Nothing else matters except for the sex? Sheesh. Not me holding his hand in ICU for 3 weeks, not me taking him to the hospital and ER over a dozen times in the past year and being with him & working the Drs., not me worrying about him, helping him in so many ways, feeding him, and trying to provide a home for him in his last days.

Without me, he would be in a nursing home.

This is what prompted me to think about me running a hotel.

Now, I do know that those with dementia have a hard time seeing anything from the perspective of "the other." But even knowing this, what he said floored me.

Everything has now been reduced to whether his willy is satisfied and if it isn't, then we aren't married and have nothing to celebrate. Well, my johnson isn't satisfied either, but I can still love him and honor our time together.

While it has been relatively peaceful on my front for a bit now (I've resigned myself to more of the same), this conversation has emotionally pushed me in ways I didn't expect. And it made me realize just how little I get and get credit for.

588 and obligation

Latest bloodwork for H was good, VL of ~35K and the highest T cell count (588) since he got sick 10 years ago.

Without a long diatribe (must keep entries shorter....), I'm glad for the good bloodwork, but it doesn't really change what is happening at home and how "faded" he is. Faded in the cognitive & participating in life sense, not in the jeans sense.

I do not want the following to be said of me: “You are the type of man that would stay with someone for the rest of his life out of obligation.”

However, I have reason to be worried, I think.

Caring styles

For a long time now, I've struggled with learning how to live with someone who has dementia and the occasional delusion. And how to love him and care for him.

A big part of this is learning to react, or rather, catching myself before I react with my gut.

So, when H comes to me and says he doesn't know how to operate his cell phone, well, I react with shock, dismay, and worry...and more than a bit of frustration (He thinks I'm angry at him, but I'm not.)

Awhile ago, I learned in a caregiving class (thank goodness for those!) that if someone is delusional, you can argue with them all you want, but they BELIEVE what they are saying is true and nothing you say will change that.

I've also recently learned that the style of caregiving affects the agitation level of he ill person.

If I react with a caring nature or a parental nature, then the ill person is less likely to become agitated than if I react and get agitated, worried, or angry. Now, those feelings are very real when things happen like he can't use his cell phone, forgot how to play chess, or doesn't remember the back routes through our neighborhood of 20+ years.

I am worried and afraid and angry and and and...normal human reaction to seeing someone you love decline. This is the partner part.

But as his caregiver, when I show those feelings, he gets agitated, worried, and generally upset (he thinks I'm mad at him or worse, that I want to divorce him).

So, I try not to show those feelings to him. I do believe that relationships are partially based on emotional honesty, but yet that isn't "indicated" in this case.

It's easier to have a caring or parenting style when the person is not your partner, I think. Then you can focus on the needs of that person. But as his partner, I have my own stuff about how he's doing...but that isn't something I can share with him.

How much can you withold from your partner and still claim that they really are your partner?

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.

Nearly undectable

Unexpected recent news. H's viral load is way, way down...the lowest that it's been in many, many years. And his virus is resistent to all the meds, so it shouldn't be happening, but it is and we'll take it. He has energy again.

What a ride this is: white knuckling it in the front seat of the roller coaster.

Getting closer

Today we had friends over for dinner; they bring the pizza and conversation and I help with their taxes. Fair trade. One person, K, said that when she arrived that H was confused about putting clean dishes away..."a big deal project" for H, she said, "he got overwhelmed"...and that he kept forgetting what part of the floor he had last swept.

I said that I think I'll have to put H in a nursing home in 6 - 12 months and she says..."no, on the short side of that...I'd be surprised if he makes it to 6 months given what I saw today."

Later, I was talking with H about my conversation with my boss about my work. While I'm not in trouble or anything like that (I don't think), I am very behind in my work and have missed 6 weeks in the last 6 months due to H's health. H was very surprised and felt very bad that it's so hard for me to work...I told him that I can't concentrate and am upset all of the time. He says, well I'm home now, so you can stop worrying.

Not true. I explained how everytime that he went into the hospital, it affects me for awhile afterwards, not to mention the cummulative affect of 3 hospitalizations in 6 months (and 10+ years now of AIDs-realted health issues). I'm depressed, worried, scared, anxious, generally whacked out, overwhelmed, plain and simple and it's hard for me to work. Now I'm worried about work...I have to dig out right now....review time is coming up...and I worry that I don't have it in me, that I am so worn down. (I will find a way, if there is one.)

He said he felt really, really bad and went to take a nap.

I started thinking that maybe it's just me that is in denial about this. That it is my fear, my lack of objectivity that is making this worse for both of us. A friend of ours, C, tells me that what is best for H may not be what either H or I want. She backs me too in putting H in a nursing home and she has known H for 25 years and me for nearly as long. His family backs this too and all of our friends, save for the very, very few that don't want to get caught in any crossfire. Doctors are all onboard as well.

It isn't his death that I'm afraid of; it's what happens between now and then that worries me. We talked about that the other night...the same conversation where I told him that he doesn't have to stay solely on my account. And, that I have a plan, such as it is. He seemed very pleased on both accounts.

How gut wrenching is that? Saying your piece is the right thing, but man these are hard topics.

What I haven't done is talked with H about the distinct possibility, likelihood really, that he will need to go to a nursing facility soon. Probably sooner than either of us like. This is probably the best thing for H. Unfortunately, except for visiting, he won't be coming home most likely.

Time to take the tranqs, get a good night's sleep, and hit the job running tomorrow morning.

Now, I would ask that you pray for both H and me: strength for me and peace for him.

Anniversary

Today is our 23-year anniversary and I am not in a celebrating mood.

Sunday before last, H went into the hospital again with seizures. He came home only a few days ago. Each time he goes into the hospital for seizures, it takes a lot out of him. And me.

He get's less and less functional and cogent and I get more and more tired. Sadly, his care needs are increasing when I'm beginning to stumble from being so tired all the time.

And work? It is a joke that I'm even coming to the office now and then. No work gets done...I'm too upset.

Just how much longer can this go on?

A model to be forgotten

Last night, I got another reminder.

Was helping H put together an Excel spreadsheet model. He has a pretty good idea of what he wanted, but couldn't figure out how to add formulas. Odd, since he was the Excel whiz for many years, creating inventory & cash flow models for our businesses, creating monthly budgeting worksheets and so forth.

Last night, I had to show him how to select a cell, copy it, and then paste it no less than 4 times over the course of 10 minutes. He kept forgetting which cells were which and where to paste the copied ones.

This is scary.

Lining up

So, H and I have been talking about the following:

• That he's ready for the next plane (he brought up unsolicited)
• That he's had a good life and he's glad for that (he brought up unsolicited)
• He's at peace with the possibility of dying
• I am at peace with the possiblity of him dying
• That he doesn't think he'll be here in a few years to enjoy the new garden grown out (his intuition tells him)
• That I don't think he'll be here in a few years too (my intuition tells me)

Sheesh, something is coming....

67 things about me

1. My favorite color is blue
2. I like fast cars and have owned a few
3. I like men who are hot, smart, and most importantly, sweet
4. My garden is my sanctuary
5. Computers (either at home or at work) eat much of my time
6. I have more regrets than dreams
7. I lead with my heart, not my mind
8. I am prone to depression
9. I am an only child
10. I am afraid of what aging will bring
11. I work out very vigorously at the gym (see above)
12. I like working out
13. My favorite foods are: chocolate ice cream, french fries, potato chips, and beer (not in that order) (see above)
14. I love my cats
15. Right now, I have no sex life to speak of, although I often have opportunities, and it usually doesn't bother me
16. I love my partner, even tho' he doesn't meet my needs anymore
17. I am trying to figure out how to live while I wait for my partner to die
18. My work seems glamorous & exciting to others, but it is pretty dull to me
19. My hair doesn't get long, it gets big
20. I have a hairy chest, tummy, legs, and ass...sometimes I trims, sometimes I don't
21. I like Pink Floyd (a lot)
22. I laugh at giant pick up trucks & SUVs, esp those with lift kits (sorry 'bout yer dick!)
23. I'm afraid of dying alone
24. I'm afraid of getting seriously ill
25. I really enjoy public speaking and have done it professionally
26. I'm very shy and nervous in small social groups
27. I would like to experiment with a love relationship with a gay couple (I think)
28. I fantasize about life without a sick partner
29. I fantasize about living alone
30. I love computer games, especially The Elder Scrolls series
31. I love plants of all types and have very little space left for new ones in the house or the garden
32. I'm told that I look younger than I am (thanks mom 'n' dad!)
33. My favorite movie is a tie between the Lord of the Rings trilogy, The Shining, and Fantastic Planet
34. My favorite TV show is a tie between Six Feet Under, South Park, and Transgeneration
35. I'm a geek at heart
36. I don't care much about the latest fashions, tho' I do like nice clothes
37. I don't care at all about celebrity gossip, reality shows, or who's who
38. I would like to try living in Ireland, Scotland, or London
39. I have no time for bitchy, judgemental, or mean people...so there!
40. I have lived in Hawaii and decided it was not for me
41. I love fish and have had aquariums for years, tho' I don't currently have one
42. I love the feeling of comfortableness (sic) when talking with old friends
43. I really enjoy good coffee
44. I rarely enjoy anonymous sex and I say "no" way more than I say "yes"
45. The way into my pants is through my heart & mind (and having a great body doesn't hurt, either)
46. I don't kiss and tell
47. I am versatile, but prefer to top
48. I have lived in the same house for the past 20+ years
49. I have very strong intuition and it is more often than not right
50. I need to listen to my intuition more
51. I'm a Cancer with Pisces rising and many planets in Leo
52. I'm pee shy more often than not
53. I don't consider myself attractive
54. I am not impressed by how much money someone has, where they live, or what they own
55. I have a tighty-whitey fetish
56. I like men and art that make me think
57. I like to travel
58. I want to make a contribution to the world that matters
59. I'm an INFJ
60. It breaks my heart to see my partner so sick and losing his mind
61. My mantra for many years (with thanks to Nietzsche): "What does not destroy me utterly makes me stronger"
62. I've liked boys/men for as long as I can remember
63. I got in trouble for playing with the neighbor boys' junk
64. I came out at college when I was 20
65. I am a butt man
66. For the first time in my life, I'm actually gaining muscle mass from working out...mostly because I've been eating more (see below)
67. I no longer have a six pack

I'm so tired (& puffy)...

Yesterday, H and I are sitting in the office, him at his desk, me at mine. He starts moaning about his foot pain (neuropathy) and runs to get meds.

He sits back down and says, "I'm so tired of this (a single man's name).... I don't want to do this anymore...these pills, always chasing the pain." I say, "I understand. It's OK. I don't blame you. I wouldn't want to either...so many years. It's OK; I understand." He smiles with a bit of tears in his eyes. I want him to know that it's OK to go, that I'll be OK, that I have a plan...even tho' I'd miss (what's left of) him and the companionship at home.

He knows he's slipping again (he's been getting more confused and forgetful again) and his pain is very bad. I know that sometimes he wants to go...he is tired & depressed...he has been so sick for a very long time now.

I've heard that it helps sometimes to tell someone who is very ill that it's OK for them to go. And it really is OK with me...although a bit frightening at times. I have to say that he's receding again and has been for a long time...I live mostly with memories, many of them wonderful, now anyway as he's not here much. In many ways, I've already buried him...I'm just waiting for the formality.

They have him on some new meds...they make his feet, legs, belly, & face swell. A known side effect, but being the good fag that H is, he doesn't like it and wants to stop taking these meds.

H spent Friday night with a friend/fb of his. He said he couldn't get hard, coudn't come. No real reason to try anymore, he says.

My poor guy is so depressed. Who could blame him? Here he is a young(ish) man and it's all been taking away: health, career, friends, incredible mind (and ass!), big dick, etc. He's got the body of an old man now. We'll talk with his Dr. about either more or a different anti-depressant. In the past, changing anti-depressants hasn't really helped him much.

It's a strange thing for me: I don't feel all wacked out, tho' a little anxious. I think that I've made peace with what is likely going to happen. I can't do anything about it.... And, I do want it to happen sooner rather than later as much for his sake as for mine.

The next plane

It's been pretty quiet & tense...distant...at our house recently. I have been sorta in a funk and burned out. H is scared as his VL is going up again. Dr. says not to worry, but H is also getting more forgetful and confused again....

So we were talking and he talks about how he's OK with dying, moving onto "the next plane of existence." He said, "I've had a good life, went to college, had some businesses...done things that I've wanted to do. Never got to Europe tho'. It's OK, I'm not afraid. I'm ready to accept what comes." There's a part of me that says I should just take leave from work and take him on a trip or two while he still can go; I don't think he can go, really.

I know that he is afraid, but I also know that he knows that it's time to move on. He's been in denial that he is really that sick for a long, long time now...a dear friend of ours talks about H "sticking his head in the sand." This is the first time where he's looked back at his life and talked about how it's been good. I'm glad that he's coming out of denial, but I'm a little nervous about what's coming next. And, mostly, I'm glad that he thinks of his life as having been good. I am worried about having regrets on my deathbed and I need to address that.

This morning while out in the garden, I had a rush of excitement and fear when I looked at the sun rise. The thought was: "someday soon I'll be out here and he won't be inside anymore when I go back into the house. It's my life now and I've got to figure it all out...without him." There is a sense of anticipation and my gut tells me that it's coming...soon...this year. I have to say that I'm feeling lighter than I have in many, many months, in spite of knowing that something will happen soon enough.

So both of us can feel something coming...he's trying to make peace where he can, wrap up things in some ways, and has a sense of urgency about living his life. I'm just waiting, knowing that soon enough I'll be on my own and I am both thrilled and terrified. At least I'll be alive. And the reality is that H isn't contributing much at all these days, in any respect. He's not wholly there...so what will be missing when he dies? Whatever is left of him now and I'll be missing his company.... But, I'll feel relief that finally this is all winding down and I can get on.

I can't imagine being in his shoes: so sick for so long, stuck at home since he can't drive anymore, many friends gone, those that are left are wonderful but not around that much, I'm only home a few minutes in the morning and then after work. And, while I do my best to be reasonable, I have to say that I'm less than present most of the time. I would find the isolation oppressive. Hell, I find my own isolation oppressive. I need to have some guilt-free fun.

Just how done is "done?"

I went to a caregiver training class awhile ago...a class on caregiver burnout. Sorely needed, I might add.

Striking that when I went through a "Are you a burned out caregiver?" quiz, I scored very high...severe burnout, which basically means that you shouldn't be a caregiver anymore as the burnout affects your ability to provide care.

What do you do when you're "done," but you have to go on?

More doctor appointments this week and I find myself struggling to even pay attention at them. I know that they're important...I know that he needs the care and no one has the overview of what's going on with all the Drs and the details of what's happening at home. But geez...I am so sick of all this.

How am I burned out? Let me count the ways from the quiz:

always exhausted (yup)
feelings of hopelessness (sometimes)
overwhelmed (yup)
emotionally numb or emotionally explosive (alternating between the two)
unable to focus or concentrate (yup)
feel inadequate to the task (yup)
the need for an increased use of alcohol or stimulants (yup...former)

The teacher, class, and materials say, "Take care of yourself." Sure. I understand that. Get rest, recreation, exercise, eat well, etc. I try to do those things. But NOTHING changes the reality of what's happening to either H or me.

He's dying and I can't be there for him in the way I'd like. I want to help him, and I'll soldier on as best I can, but it's bad right now. I won't leave him, but I feel like I'm waiting for him to die, which I am honestly. He knows that too. And he is too.

And it's going to get worse before it gets better.

As the loin stirs

And, after writing the prior entry, I met this very hot guy at the gym...fantasy man...nice guy too. Who knows what might happen?

Having them in front of you "in the flesh" is so much more compelling than having them in front of you on the computer...duh.

On the computer, the brain gets too involved...is he really that hot? is he lying in this pics or profile? how far do I have to drive? does he want to go through with it or is he "shopping?" what if I don't like him? blah, blah, blah.

But meeting someone in person: your gestalt responds to the gestalt of the other. I'm not just looking at a picture or yet another series of IMs on a computer screen. There is a living, breathing (hot) man there, smiling at me. He smells nice (at the gym!), I like his body language and his eyes, his smile, and what I can see of his body, which turns out to be most of it happily.

It's been a long time and the pull is strong.

Needs, what needs?

Earlier in H's illness...when he was too sick...I had boyfriends, for lack of a better term. And it was good. I mean, I persued 'em, had fun with them, had sex with them, and did other stuff too. H didn't know and I have no intention of telling him now, 8 years after the fact.

Now, he's know some of my bfs or fbs since then, but he's always been insanely jealous...even when he was healthy. It's worse now, I think, because he feels so insecure due to his health. At this point, I don't know if I would tell him or not...probably not.

Truth be told, the drive just isn't there right now. Oh sure, I get horny and take matters into my own hands (sic), but it just seems too much work to "find a man," for lack of a better expression. In the past, I met guys online and it worked out fine, believe it or not. Minimal flakes, no liars. Today it doesn't seem that way.

Aside from the logistics, I just don't have the energy to persue someone. Weird. Clearly, this is related to my emotional state. And, I know that it's not just a "get me off need," but a need to engage with someone...to be with someone who doesn't look sick....

Geez. H can't meet my needs and I no longer have the energy to pursue 'em. In a word: f*!@$ed (or rather not f*!@$ed).

Just when you think you can have hope

I've been plugging along now for a few weeks and feeling pretty optimistic. H's last viral load test was down, he's had more energy, he's eating, his night sweats stopped, and he's thinking more clearly. T-cells are 450+; VL 39K. He's looking more like his old self.

Now, his viral load is up, he's sleeping more, he's sweating again at night, and he's getting more forgetful and confused by the day. T-cells are still strong tho'; VL 73K.

VL almost doubling in a month is not good, especially since he's on one of the last meds that might work for him. We see his doctor next week. 100K VL is the threshold...if we can keep the VL below that, then the PML won't progress (as quickly).

What's striking now is how quickly he is getting more forgetful & confused. I had to explain our cell phone plan to him (granted, they can be confusing), but he couldn't track. 4 times. I've explained this to him before, but he forgot. So, I just simplified it for him. Here, use this phone....
We've had a friend, S2, stay with us the last week. He notices the confusion as well. He notices the decline since last year.

It's the PML. Stats are bleak: 90% of the folks who get it die within a year of diagnosis; a few have a complete remission, some stay where they are. Even with HIV meds that work to control the virus, which doesn't appear to be happening right now, average life expectancy is 2 years from PML diagnosis.

The short story is that it will likely get worse...it is just a question of how quickly. Last time we saw his Dr. (a few weeks ago), Dr. was very surprised that H is doing so well. We see Dr. again next Monday. It's horrible to see him improve physically, but to experience him losing his mind.

I've written about friends disappearing and offered some thoughts about what sick people need from their loved ones. Joe has captured that so well; I just fell apart when I read this post ("I Will Hold You Ten Times" is the name of the post. 1/30/06).

God, I am so tired and so afraid.

Making the best lemonade

After all the turmoil, life is settling down again. New meds have brought H's viral load down (tho' he is not undetectable and likely won't be) and he's doing better. So, I can back off of the worrying about the nursing home, at least for now.

What is very strage is that he has lots of energy and is doing projects here and there around the house, but his cognitive function doesn't seem to be improving as fast. (Geez, "cognitive function"...you think I had bee around a bunch of doctors or something.)

All of this does nothing towards getting my needs met. I've come to the conclusion that he just can't do that.

So...you make lemonade. Problem is, I never liked lemonade.

All roads lead to the same place

A long-time friend of ours, S, came over to visit with H a few days ago. H knew S in college and is one of the true blue friends that have stuck with us. I wasn't around when H & S visited, so I called up S to get his perspective on their visit. He talked about H spacing out when they talked...almost going to sleep...and H's denial about how sick he really is.

I asked S to validate or refute my reality: that I see H slipping away and that H knows that he is slipping, that he is quite ill...more ill that he'll admit (at least to me), needs more care than I can provide, and that H is hiding his health issues from me. Oh, and that I'm at my limit of caregiving and have been for some time.

He validated my reality. And so has H's family and H's doctor and...and.... How many more have to before I will push the button.

I've tried to pick up the phone and to get H on a waiting list at a local nursing facility with some specialty in his type of health issues. I just can't pick it up and dial...yet. Bit by bit I get up the courage to do this and I'm almost there.

Several have said that it might be a relief to H as well as to me if he goes to a care facility. H must realize that he is dependent on me and that he is becoming more so each passing week. The tough bit is that we all have to deal with our denial & bargaining for this to happen.

And guilt.

Do the dichotomy, redux

So, I get all geared up and then the self-doubt sets in. The guilt. The, "oh, it's not so bad and I do love him still." Yet, just a few days ago, I'm getting up the courage to call to get him on a waiting list. And I told myself, "I can't take this anymore." Back and forth. Back and forth. Aaagh!

What do healthy partners do?

H has been sick for so long, I've forgotten what it's like to have a healthy partner. What do healthy couples do on the weekends? H gets up at noon, is up for awhile, goes back to bed, maybe eats dinner, is on the computer for a few hours and goes back to bed. His mind is slow and forgetful these days. Part of this is the medications, part of this is his illnesses.

Sometimes I can get him to go somewhere, but that is becoming less and less likely. He gets overwhelmed out in public, usually can't eat a meal at a restaurant, and doesn't have the attention span to sit through a movie or a play.

He sweats all night in bed and it smells like chemicals (although less than awhile ago)...no cuddling in bed for moi. Forget sex. His dick is 1/2 the size it used to be (really) and he often can't get it up, even with a prescription. Besides, his body has changed a lot and it weirds me out. He just doesn't look healthy anymore.

I still love him, tho'.

So, I've learned to entertain myself. And in some ways, I suppose that I like the quiet. In many ways, it's comforting and less stressful that being around him...it's "me time," which there is simply not enough of. Sometimes I wish that he would just stay asleep, but really I just want things to be different.

A friend came by to visit and offered to take H somewhere: shopping, see the Christmas lights, a walk...just get him out of the house. But he didn't want to go. H has often described to me how he feels safe at home and I think that this is becoming more pronounced.

Oh, and for years, I've just filled in the gaps for him; it's sorta like completing your partner's sentences, but you do it in your mind when they can't do something they used to. So, for example, if you say something and you'd expect him to respond a particular way and he doesn't respond that way or doesn't respond at all, you just fill in the blanks because your so used to how he responds. It's hard to explain, but very, very real and the mind is a trickster. As a result, it's easy to lose objectivity and you want them to be better so badly...and so you don't notice how sick they really are.

When "How do you know when?" is now

So, I talked with H's Dr today about H forgetting so much. He didn't realize that this was happening, which is why I called him...he doesn't have the context that I do.

He said that H's body can get better (his viral load is down) while his mental state deteriorates. Sigh. He asked about having someone at home during the day to keep an eye on H...we don't have that. I told him if that is necessary, then H has to go somewhere because I can no longer deal.

I asked him if there were some markers: how do you know when to say, "It's time." "It's entirely up to you," he said, "unless there's a safety issue for H or you" (there isn't). If anything, H is getting more docile as he fades away.

Net: the line is where I draw it, plain & simple. And, at this point, we've crossed over that line. I can't deal anymore...it is costing me too much. Besides, I do think that H really does need more care than I can provide for him even tho' he tries his best to hide his increasing dependence.

Also, I am so whacked out by all of this that I can't be the supportive, loving partner that I know that I can be. I'm just too stressed, distressed, and angry. My hope is that after H is settled in a new place that I will be able to be there for him as I would like to in his last months or however long. I want to be there for him, but the current situation makes that very, very difficult.

Dr. is fine with writing the order so that H can be admitted. I told him that I would keep him posted, but that I didn't want to do anything before the holidays.

So, now I am gearing myself up for the call to the nursing home/hospice to get H on a waiting list. It's so hard to be thinking about doing this, but I knew that it was coming and, realistically, due to either my kindness or fear (both, really), I haven't wanted to do it. I think also that I have been in denial about the necessity for some time now and I've bargained, "Maybe he'll get better." If the Dr is willing to write the order to admit H to a nursing facility/hospice for the second time in 3 months, H is not going to get any better.

I feel guilty and ashamed that I'm where I am in all of this...that I've had enough after 9 years of his illnesses. H's family tells me that I'm "a saint" and that they will support "whatever I decide" and that I am considered the "spouse." I don't feel like a saint right now. I feel like I'm betraying him, sending him to the "end of the line." And I am sending him to the end of the line...well, actually he is likely there already and it's just a question of where he spends his last days. My shrink tells me that all of this is normal...but it doesn't make it hurt any less. This is the most gut-wrenching thing I have ever had to do in my life.

Someone whose husband had HIV dementia and was in decline told me, "Run away while you still can." I didn't understand at the time. Why would I do that? But to suffer through the "long goodbye" for many years now, where a parts of H fade away bit by bit, where not just his body is affected, but his mind is wasting too - his personality, memories, reasoning...all of it is going - and then to finally get so stressed out that I can't have him at home anymore. Ouch.

I must do it 'tho. It is time, my dear.

Where have all the friends gone?

Before H was diagnosed, we had lots of friends...friends accumulated over 10 years before he got sick. His friends, my friends, and our friends. Gay, straight, bi-, trans, and poly...you name it. B-day and anniversary parties would have ~50 people at our home and almost 100 showed up for our wedding, which we did on our 10 year anniversary.

When he was first diagnosed and in the hospital near death at 120 lbs, some wouldn't (should I say couldn't) come visit. Some wouldn't talk to me again after I told them he had AIDs. Some of my friends from college (mind you this is 20 years after college) just said, "I can't handle it. I've seen too many get sick and die" and poof, they were gone from my (our) life forever. I understand that some of them watched their friends/lovers die and can't deal, but it hurts nonetheless.

Ironically, it was the gay friends who disappeared the quickest. Not returing phone calls, not extending invites anymore, not even rsvping to events they had attened each year for 10+ years. So much for supporting your own.

It nets out to losing proably 3/4s or more of our friends since H got sick.

I guess that this "attrition" is not all the unusual when someone is very sick, especially when it's terminal or when the illness affects their mind. A neighbor of ours had lung cancer and her husband tells me that many, many of their friends accumulated over 40 years of marriage just disappeared. Just like happened to H and me.

God knows it IS scary to watch someone get very sick, to know that they will likely die from their illness, to see them change physcially and mentally. But we will all face illness and death, whether our own or someone that we love. I hope that when these former friends are in failing health or someone they love is that their friends stay around.

I think that people don't know what to do or say...don't know whether to talk about the illness explicitly or just chit chat or anywhere in between. I think that people also don't know what to do...perhaps they want to do something, anything to help...and they really can't change what's happening no matter what they do so there is a feeling of powerlessness. And, let's face it, mortality is not pretty, nor fun, nor sexy.

H and our neighbor both said that what we say isn't as important as just being there for the sick person. Just holding their hand or just sitting in the same room, telling them that you love them and talking to them as a friend. Simple. Why is this so hard?

Take me there...where?

After the last trip to the hospital, H is not allowed to drive for awhile (6 months or so...or until Dr says it's OK). So, I play taxi driver as well.

We were going to his new dentist, whose office he has been to once, but I've never been to. He tells me that its "across the street from the YMCA." So we head there and pull into an office park. We look at the directory. No dentists here. Luckily, H has the dentist's business card in his wallet. The address is across town, less than a mile from our house.

We were going to see his pain doctor in a nearby large city (we live in the 'burbs). I had been to that office before, so I headed there. But when we got close, he said, "No, no. It's over there," pointing at the main hospital tower. I said that I didn't think so, that it was West of hear a few blocks, but OK. We go into the medical tower and nope, no Dr. of that name here...no pain clinic either. We ask around and finally find out that, indeed, the office is where I remember. H was very puzzled at first, claiming that he had never been in this building. But we had both been there together at least 3 times in the past few years.

Hard to realize that you can't depend on someone's memory anymore, even for simple things.

Chess as a metaphor

H has been after me to play chess with him. He and I used to play quite a bit in our younger days and we were both pretty good, I think...well, at least good enough so that we each won 1/2 the time or so.

So, we sit down to play chess, at H's request, for the first time in over a decade. I spent a 1/2 hour or so reminding him of the rules, showing him how pieces move, and some suggestions on opening play. I can tell that he has a hard time keeping up.

After a bit, H looked very distressed, began to cry. "What's wrong?" I asked. He has a look of great pain on his face. "I can't figure it out anymore; it's overwhelming. Put it away." I go over and hug him, kiss him on his head, tell him, "I can't remember parts of the rules myself, it's OK." "No, it's not," he says. "Here I am 46 and I can't remember how to play and I can't figure it out now."

And I think to myself, if chess is this hard, this overwhelming for him...how does he experience life then?

Damned power ballads, take 2

So I go to the chiropractor to get an adjustment and I'm sitting there and they're playing some power ballad.

After All that we've been through,

It all comes down to me and you.

I guess it's meant to be,

Forever you and me, After All.

Now, I've never been a Peter Cetera fan at all and this song has never gotten to me before, but tears started to well up and I had to leave the office right then. I had two employees follow me out, but I told them, "I just can't deal with the music right now" with tears welling up in my eyes and my voice cracking. Geez and I'm this much of a mess when he's still alive.

They used to play dance music, definitely better musak for me these days.

My poor sweetheart...

Another bout of seizures last week. Two visits from the medics and two trips to the ER in an ambulance in two days. And another week-long stay in the hospital for H. A bunch of tests and more medication. And then home and "can't be alone" for a few days; can't drive for at least 6 months. I am happy that they are working to control his seizures (and it seems to be working now), but I'm also concerned about his other health issues.

We'll find out in a few days if the current HIV anti-viral treatment is working for him. He certainly looks and sounds better than a month ago.

What I'm most worried about is a degenerative brain disease that they discovered H has about two months ago. It's called PML (Progressive Multifocal Leukoencephalopathy), it's rare, and there's no cure. It basically destroys the mylein sheath around nerve cells in the brain and also destroys that cells that product myelin, so the body can't repair the neural damage. His brain is actually shrinking, fast, due to the loss of the myelin. It's sorta like having a bunch of wires bundled together, but some of them are missing insulation and shorting out. Hence the seizures. What they do know is that the best way to control it is to keep HIV virus levels low and we're waiting to see if that's the case.

H has had HIV dementia for a number of years; 8 or 9 now I think. So, he's been a bit forgetful, a little slow on the uptake in conversations, and kinda clumsy and strange sometimes. But now, with the PML, he's forgetting things like "back way" routes through the neighborhood that we have lived in for over 20 years, forgetting how to use computer programs that he once had mastered, and, most frightening is that recently he's forgotten how to tie his shoes and stands staring into space, "daydreaming" he says, for long periods. Sigh. He continues to be the sweet and very funny man that I fell in love with and I am greatful for that at least.

From the National Institute of Neurological Disorders and Stroke (www.ninds.nih.gov):

What is the prognosis (for PML)?
The course of PML is relentlessly progressive. Death usually occurs between 1 and 4 months after onset, but there have been a number of reported cases with survival for months to years.

Now, H's doctors tell me that "I've had patients survive for a year or two if we can get their HIV levels down" and "very few go into complete remission...so there's always going to be some progression." Sigh. He was diagnosed with PML about two months ago, which was when we though he would die shortly and when I started this blog. We don't know what to plan for...when he might die, for example. But I supposed that none of us really know that anyway, it's just that we all hope we live long enough and that seems far away.

My poor sweetheart. He's been so sick, in so much pain, and now, he's losing his mind and that seems to be accelerating. He says he's not afraid and I am grateful for that too.