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.

How do you know when?

A very tough question that I hope none of you will ever have to answer: When do you put your ill loved one in a skilled nursing facility? I suppose that it's easier when they are obviously physically sick...like with pneumonia or KS. But what about when there are cognitive issues...when they're slowly losing their mind? When the person is no longer themselves? When they can't remember what happened yesterday and revise your joint history.

Hmmm, that's been true for awhile. When I can't deal with it any more? Hmmm, well past that point. So, where is that line?

A good friend of mine, J, says, "You're just not being selfish enough. 8 or 9 years is too long...why are you sacrificing your life to see that he has a good home?" Why indeed.

Another friend once told me, "All those who want you to leave him have just never been in love...love transcends inconveniences, pain, issues. Love means that you care for someone else's welfare more than your own."

All that's very well and good, but how do you know when?

Ride the coaster

So now, a few weeks after a very bad diagnosis, there's a new salvage regimen for H. For weeks, he's been heading downhill and now with these new meds (one is brand new to the market), he's thinking is clearer, he has energy, he's eating...all in a few days. Hard to go from getting ready for the end to now he's getting better. Again, the dichotomy rears its ugly head.

I didn't realize until just recently, and I haven't explicitly shown it to H much, just how angry I am. Not really at him, per se, but at the situation. I feel like my lover was stolen from me 9 years ago...I feel cheated. Since then, I've had to keep it all together (because he cannot work anymore) and I told H last night that I'm not certain I can do it all anymore. I'm exhausted from the past month and all the ER visits, stress, the family circus, crying marathons, and lack of sleep/food. I just feel overwhelmed, plain & simple. And really, really, really pissed off.

Do the dichotomy

Each day, I'm torn. While I don't want him to die, I do. Horrible to lose someone you love, but horrible to see them suffer, not to mention the cost to me either way.

So, I sit here on the horns of the dichotomy (sic), all the while wanting and needing something different. The (realistic) options are not appealing: he limps along with a marginal quality of life or he dies. What I really want, no need...need more than anything...is a healthy lover...the way he used to be. And that ain't gonna happen.

Damned power ballads!

So, I wake up early this morning, H is sleeping & snoring by my side, with a song in my head. This doesn't usually happen to me (although sometimes I confess that some commercial jingle gets in my head and I just can't shake it for the entire day). The song was "Here Without You" by 3 Doors Down.

I’m here without you baby
but your still on my lonely mind
I think about you baby and I dream about you all the time
I’m here without you baby but your still with me in my dreams
And tonight it’s only you and me

Damned musak at the gym! For months, they've played this song over and over again there and even in public there I'd get a bit teary. But to wake up to the song playing in my head...shit. So, I just get up, cry for awhile, have a cigarette...and now hours later, I still can't get this song out of my head. And I cry everytime it plays in my head. Must get it together as I am at work....

There's this notion of "anticipatory grief," where you can see a loss coming (or smaller loses happen along the way) and you grieve along the way. Right where I am right now. Been here for years in fact. It sucks.

One good thing is that we have time to say our goodbyes. My mom died a very sudden death and it was very hard because I never got to say goodbye.

Waiting for the other shoe...

I decided to start this blog before I become a widower, even tho' the blog title is for after that unfortunate event. We recently found out that my partner, H, does not have long to live...complications from long-time HIV infection. In fact, recently I've been planning full-time nursing & hospice care for him.

For those of you who think that HIV doesn't kill anymore in the U.S., you are wrong. It isn't something that pills can "cure," only control. And over time, the virus became resistant and all the treatments have failed him now. There is one possible "silver bullet" left...a "back against the wall" salvage treatment...but Dr. is not optimistic that it will buy more than a few months at best. In the meantime, H is slipping into dementia due to neurological damage from the virus. He is no longer who he was. And who he was slips further away every day. I already miss him, because in many ways, parts of him have already left.

I didn't create this blog for your pity or support (although support is always welcome), nor to document yet another horrible AIDs experience, but rather to have a place to record & share my thoughts and experiences with this key transition in my life: from life partner to a single man and maybe even back to life partner again some day. I'm not the only one to have this experience, nor the last, unfortunately. So, I hope that this blog will be helpful. At the very least, it will be helpful for me, I think.

I've been with H over half my life and can't imagine living without him. But I must. And in the meantime, I'm doing my best to take care of him. He's been quite ill over much of the past few years or so and so none of this is unexpected really. But as much as you prepare yourself, you really can't be prepared for holding your lover of many years in bed as he's crying and saying, "I'm dying. I'm afraid. I'm sorry to put you through this."

And please don't think I'm being cruel by the title of this post. It is a horrible waiting game right now and all of us hope that God takes him quickly & mercifully. If you pray, please don't pray for me, pray for him and a painless & quick exit from this life.