First snippets of Fall

Doctor, doctor

As expected, H's health continues to be up and down, but mostly slowly down. Most recently, he's been having stomach pain and is having a much harder time walking than ever before. Some of the walking issue is his dementia and some of it is that he has a somewhat lame leg and hand due to a stroke about 15 years ago. H said to me last night, "I'm so mad at how frail I've gotten. I worry that I'll never recover...."

H and I joke about his dance card being full (on both sides) and now we are talking about stapling another dance card on so that we can add a potential gall bladder issue as well as the need for ongoing PT, not to mention more trouble holding things due to shaking, new pain now in his scalp from neuropathy, etc. And he's not eating very much and is down to 140 lbs again.

So, a series of Dr. visits this week...everyday this week, a new doctor, an old doctor, a referral, etc. And then next week, Dr. appts for him 3 of the 5 days. Hard to find the time to work.

Now, we haven't had a spate of Dr. appts like this in a long time (thankfully), but even tho' I am more than completely capable of dealing with it all, it bores the hell out of me. And while I am sympathetic and want to help, I just wonder when this will all stop...for H's sake as well as mine.

A death in the family

Our young Siamese cat finally died; he should have lived for 20+ years as Siamese are a very long-lived breed. Last Tuesday, I found him stretched out on the kitchen floor in a pool of his own (well, you know) at about 6am. And he had been coughing up blood overnight. We knew that he was close, but like most folks, we were looking for the right time...not too soon, not too late...you know. I feel really bad that we didn't put him down before he got to this point.

I went to comfort him...not knowing if he was dead or not...and gently petted his head and called his name. He cried and cried and cried and cried...wailing really...and his face was sunken in (dramatic since the night before) and his eyes hollow and red. It was like knives into my heart...my poor boy...he is only 7 years old. He was one of my favorite kitties of all time. He cried for hours until we got him to the vet when they opened at 9. I can still hear his crying in my head a week later.

So we go to the vet, H and I, to put our friend down. Now, I am a complete sobbing mess...can't even talk to the vet. H to his credit was very calm and just spent time telling the cat how much we loved him until the end. H hardly shed a tear. But I blubbered all the way there and back and the whole time we were at the vet. Last cat we lost, I shed a tear or two, but sheesh, nothing like this.

I think finding the cat in the state I did triggered a lot of my grief around finding H in in similar states (many times) over the years. If I had found the cat dead, maybe it wouldn't have been so bad. But seeing someone you love so sick they can't raise their head, looking so different from just the night before, and crying and crying and crying...very hard.

I am so glad that my kitty is relieved of his pain and suffering; I am glad that we were able to do that for him.

Thoughtful, loving alternative

Well, I've been thinking about some comments to my prior post (Snippets Again), specifically about choice when dealing with death and grief. And I thank my gentle readers for their comments.

Here's the deal: yes, it is a choice to wallow in pain and grief, to a degree.

But, the reality is that if I am fully present with H, as I try to be, then I am sad...both for him and for me. Simple.

Sure there are gifts -- important ones that I have blogged about here -- from this experience, but after 14 years of this, I am worn out from the loss and burden. I have great hope for me and my life, but not for H.

Last night, H was telling me that he was terrified that someone was going to show up at our door, arrest him for having AIDS, and take him to a concentration camp to be executed, but not until they delighted in his withdrawal from his pain meds. He was sweating, red faced, almost crying...abject, visceral fear.

I calmed him down, but this type of thing is a frequent event at our house these days.

How can I not be sad and not be affected every single f*!@ing day when the love of my life is delusional and terrified, can't walk hardly at all...even with a cane, and can no longer make a sandwich?

I would love to hear how to not feel sad and "chin up" or "man up" under these circumstances.

It is one thing to judge and lecture, it is entirely another to present a coherent, thoughtful, loving alternative.

Snippets again

Oh, the drama of it all.
H has always liked reality television, such as Wife Swap, Nanny 911, etc. But now, he's completely focused on RTV (Reality TV), especially those shows that include yelling, screaming, fist fights, police takedowns, acerbic meter maids, crashes, etc. The noisier the better.

Grieving in the dark.
When the house is quiet at night, when H and all the animals have gone to bed, that's when I feel the saddest. Mostly, this is when I can finally hear myself think (see above). It's only then that I feel really, really sad for H and all that he has lost. And I feel sad that our lives have ended up where they are. I wish that there was some way to grieve, get it over with, and just be done with this mess…I have been grieving for over 15 years now. Ironically, I would have grieved less if he had just died 15 years ago.

As much as I grieve in the dark, it also comes up for me at odd times...in the grocery store, at the dentist (?), driving to work. I'm sad because I see what H has lost...pretty much everything at this point. And I'm sad that I can't help him, really. Hell, I'm sad that I can't help myself. And I'm sad that he's afraid...I am too.

Stuck in the past.
As I stumble into the future (which keeps arriving before I'm ready), H is rooted firmly in the past. He focuses on his anger towards his parents, getting arrested 20 year ago for minor possession, on how our relationship has never been what he wanted, how he was disadvantaged in school, how he had strokes as a child…. What can you say to someone who is living anywhere but here and now? Meet them where they are? Tell them to get over it? Just nod and listen?

Letting go.
H and I are moving farther and farther apart...at least I feel that way more and more. We spend less time talking than ever before...some of that is that H doesn't know what to say; I don't either. What can I share with him that he'd understand? What can he share with me that is relevant? He often sits in the office with his back to the blaring TV, staring at his computer screen. We are hardly even in the same room in the house anymore...a just metaphor for our life together.

Snippets from the edge

H has been off his anti-HIV meds for over a month now. He hasn't called to find out if his viral load has gone up or not. He says, "I just don't want to think about it or know."

Conversations at our house are very quiet…I talk but I rarely get a response. H is quiet a lot these days, part of it is that he's not been feeling well and I think that part of it is that he's not home very much.

My therapist talks about how people feel lost when a spouse dies. Nice to have a name for what I've been feeling.

Went out to dinner with folks from work and some work-guests from out of town. Everyone has something interesting to talk about…books, travel, hobbies. I come home and it's, "I'm not feeling well, I need to go to bed."

Work consumes most of my time and thoughts right now. It's good fun tho'. Will get a break in August and I can use the rest. Not certain how the time at home will be for me as I'll be alone whether he's up or not.

When it is time

When we had an old cat who was quite sick, the vet told us that he would die pretty soon, but that he wasn't in pain and so we should take him home and enjoy him while we can. "He'll let you know when it is time," the vet said.

So, we took our old kitty home and just spent time with him like we always did: treats, cuddling, and just sitting with him on the couch, petting. The old cat wasn't interested in playing with his toys, the other cats, or with us, but he wanted to hang around us a lot.

And, after awhile, it was time, but we had a few weeks more together where we enjoyed one another's company.

Of course, I think about this now that H is going off his anti-viral meds again, just as he has several times before…each time being a bad trip for all concerned.

In the past, when he's gone off his meds, H has been much more functional than he is now…we could by and large have a normal time together, at least for a month or so until the virus flared up again and he went into the hospital or couldn't figure out how to use his cell phone.

I need to manage my expectations better. I keep thinking that he'll be able to do stuff with me once he's stopped taking the meds that make him sickest. But reality intrudes. And I keep wanting him to be able to do things, not run a marathon, just normal things.

H doesn't want to play or run around, of course, he just wants to hang out and be with me. And right now, I find that rather painful for many reasons, not the least of which it brings up much fear that I'll have to descend into the depths of pain and grief yet again.

Dementially yours

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

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

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

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

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

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

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

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

It is what it is

I keep having regrets, deep regrets about how things were and how things are. And I wonder what would have happened if I made other decisions instead of the ones I made. And, yes, I blame myself sometimes for the choices I made.

"If only I had done this or that…." "If only it were different…" "If only, if only."

Well, it's not if only. It is what it is.

And instead of just looking at things as "these are the facts and circumstances of where I'm at," I keep looking back over my shoulder wishing it was something else, that I had done something else, and that I'm somehow able to do something to change it. And I beat myself up about the regret I feel because somehow I think that I could affect the outcome. But I can't.

All of this is my struggle for acceptance of what is. That my partner is dying, slowly, and that I'm very sad and it impacts me profoundly in many ways. And that results in a life that I'm not happy with.

My favorite metaphor that my therapist uses is, "You're in a plane that's going to crash and there's nothing you can do because you're not the pilot. You're not in control, you can't be and you won't be. You have to accept the reality that H is dying, nothing you can do or think will change that in any way, and you're just along for the very scary ride."

Uresolved

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

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

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

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

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

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

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

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

Looking back

Now a week out of the country on work travel with my extended team. In addition to the wonders of a more tolerant society who believe "live and let live," I've really enjoyed the break from the tedium of living with H and just how helpless and hopeless he is.

My team is astoundingly smart, funny, and passionate. Sometimes I don't feel that I belong, but that is my issue as I have clearly already been accepted.

Many nights out with all of them and obvious things to say: they are not only looking for an adventure…to expand their experience…but they are also able and willing to go after it. There is a keen desire for adventure and the ability to go after it. To have fun without the "my feet hurt," "I feel sick," "I need to lie down," or "I need you to make dinner for me."

So, we are in a strange city and go clubbing…men and women, straight and gay. It is just about having fun together without accommodation. Up steep narrow, twisting stairs, dancing on a crowded floor, walking a mile back to the hotel on rough cobblestone streets at 3am.

Maybe that is what I struggle with: the notion that he needs so much accommodation and I need a peer…someone who can keep up with me. Not that I'm running marathons, but still….

"There is a fine line between being noble and being a martyr." From the Alzheimer's' Moments blog.

So, you think that you're being noble…but is expressing your grief and whining being a martyr?

And for those who haven't experienced this slow, long painful goodbye...is missing what you once had and talking about it being a martyr?

I want you to be there for me

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

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

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

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

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

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

Anger management

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

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

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

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

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

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

He's not your partner anymore

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

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

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

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

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

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

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

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

Counseling our marriage

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

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

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

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

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

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

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

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

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

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

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

The party in question

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

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

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

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

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

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

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

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

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

You are not the center of me

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

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

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

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

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

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

Bits 'n' bats

Cutting myself some slack

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

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

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

At least it's not home

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

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

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

Giving up

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

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

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

Home for the holidaze

Home for a long Memorial Day weekend, 5 days worth. On Thursday, I couldn't wait to leave the office and get home. By Wednesday following, I couldn't wait to leave home and get to the office. I have been on this wheel many, many times.

Happiness, someone once said, is looking forward to going home and looking forward to going to work.

What is it when you can't wait to leave wherever you are, yet don't like where you're going?

Part of me keeps expecting, hoping for something different when I get home. Bargaining I think they call it.

But H was true to form, only up for a few hours a day (eat, bathroom, and a bit of TV (Oprah and Dr. Phil)) spread out over 3 or 4 stints. And when he was up, he was rummy, slow, somewhat odd in focusing on bad things that happen, his health issues, etc…predictable, really.

He keeps telling me "I don't know why I’m so tired; I just want to sleep all the time." I mention that he's been this way for years now, that he hasn't felt well in a long, long time. "I don't know what's wrong with me…must be because I didn't get to bed early enough last night. I'm going to lie down now."

And so I find myself at home alone, again, save for that sick man that sleeps all the time in our old bedroom and a few pets that need my, well any, attention. Everyone in the house wants something from me…needs something from me, yet I am not nurtured here.

To offset my despair and loneliness, I medicate myself with alcohol, etc. Now, I have great concern about my need to drink so that I feel normal, although I haven't written about it here much. Right now, I am able to manage what I'm doing…to keep from sliding further into alcoholism...but I fear that I won't be able to hold it at this level forever.

I remember years ago talking with a couples' counselor about my concerns about my drinking and he said, "Well, it's understandable. But if you're still worried about it 2 or 3 years after he dies, then that's another issue." OK, so now we're 8+ years after that conversation.

But this weekend, I tried and tried to not hit the stuff or just to have less, but without my usual, I just can't deal with what is left for me at home. My distress is too high…so I leave for awhile and it follows me home again. After a few drinks, I feel more normal and can actually function without freaking out; and after a few more, I don't care that I can't function anymore and I don't mind so much that life is slipping away from me also.

By Weds, when I came back to work, my brain is addled from a weekend of imbibing and despair and I'm just sad and feel the distress well up again and am not able to focus on work at all today. Ahhh, just another day with a hangover. And I have lost yet more days in a daze.

Good thing I only drink at home, alone.

Maybe you'll be there

In spite of overwhelming evidence, I find myself still hoping that H will once again be the man that he once was…even just part of the man that he was. But there's ample evidence that this just won't happen. Even tho' his VL has dropped, all the neuro damage won't repair…some will, I suppose, but I doubt that it will be enough to return him to me.

And so, as we continue to live in the same house that we've shared for over 20 years now, I find myself transported into the past. I hear him come down the hallway, open a door, and I am returned to history and I expect that bouncing, healthy, and hot man to appear around the corner with that big happy grin that I fell for so very long ago.

While I love our house, there are so many memories and I respond so automatically and I am filled with heartfelt hope, even if just a little bit and just for a moment. I've realized that hope is just another form of bargaining ( "he'll get better, it isn't so bad, he's not so sick") and just a waypoint-albeit one that I'm stuck at- toward acceptance.

These lyrics from "Maybe You'll be There," written in 1947 by Sammy Gallop sum up the hope so well:

Someday if all my prayers are answered
I'll hear a footstep on the stair
With anxious heart
I'll hurry to the door
And maybe you'll be there

Another piece falls away

H and I don't sleep together much anymore.

While I prefer to sleep in our big, cushy bed, his C-PAP machine is just too noisy and I get woken up 3 or 4 times a night, which makes me pretty much non-functional during the work day. So, over time I've moved into the guest room more and more frequently and now I sleep in there on "school" nights and sometimes on the weekends.

At first, I really liked the idea of sleeping alone. I sleep through the night and wake up at 5:30 - 6am without an alarm. Who would have thought that with regular good sleep, I'd have more energy, think more clearly, my mood would be better, and I'd just generally be more productive?

Even tho' many of our other couple activities had fallen away (sex, entertaining, visiting friends, joint projects and goals, intimacy), we still had the comfort, the ritual of sleeping together and of sharing a bed…even if I couldn't always sleep due to noise.

And now H is referring to our bedroom as "his" bedroom and the guest room as "your" bedroom.

Whatever else is going on, we've slept together for all these years and now we don’t. And it makes me terribly, terribly sad…not in the "Oh, I’m sad" sense, but in the visceral, painful gut-wrenching grief sad.

Good news, bad news

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

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

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

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

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

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