Learning to stay

I wrote this post awhile ago and I think that this is a good time to publish it.

I've been reading a book, "The Places that Scare You," by Pema Chodron.

While there is a lot of good stuff in the book, the key thing I'm learning is to stay with difficult feelings and not cower from them or medicate them away.

Chodron says that difficult feelings in response to an event are based on a judgement that something will likely be bad.

The reality is that we just don't know how things will work out.

The tricky bit is to have an open heart and mind and not assume that something will be good or bad. Just wait..."stay"...and see what happens.

In the book, Chodron tells the story of a small village and that an only child, a son, of some farmers was thrown from a horse and was injured. He was so injured that he would never be able to work on the farm to support his aging parents in the way that he had in the past.

Shortly thereafter, a call went out to all the men in the village to go fight a battle. Because the son was so injured, he couldn't go to fight.

As it turns out, all of those called to war were killed and the injured son, while not able to works as hard as he once could, was at least able to be there for his aging parents and care for them. They were grateful that he was still alive and he was grateful that he could help his parents.

You never know how something will work out.

I struggle to stay without judgement and see what happens in my situation with H.

Stuck at home

Thank you all for the comments and inquiries.

H is stable right now (which is good), but the quality of his life, well, in a word, sucks. The usual: sick, in pain, tired all the time, forgetful, somewhat paranoid...you know the usual.

I received a summons for jury duty next month. I've done it before and found it interesting and a nice break from the usual grind.

I was talking with H last night about jury duty and he said, "Now, don't forget your responsibility to me."

"What do you mean?" I asked.

"Well, if they want to sequester you, you have to tell them that you can't," he said, "because of me"

"Oh, I see," I said. And the following immediately came out of my mouth, " It's really sucks that you can hardly leave the house because of your health and it's hard for me to get out the house for the same reason...few trips, no social events, no entertainment events, and not even jury duty."

"I'm sorry," H said, "that your stuck here with me."

He looked very distressed.

"I know honey; I know that you would change it if you could...but you can't and neither can I. Let's just make the best of it we can."

Acceptance is very, very hard for both of us.

But, right now, I’m just focusing on making myself happy as I can and working on my bucket list. Many of the items on my list either require a functional partner or no partner...those will have to wait.

Resistance is futile (or at least hurts)

I keep circling back to the notion that all suffering is caused by not accepting what is.

Case in point...I've been sick twice in the past two months, first with an awful 24 hour flu and just this weekend, a nasty head cold.

Now, I'm usually am sick maybe once a year with a cold. But two times in two months got me thinking.

When I look back at the last two months, what do I see?

Stress, anger, resentment, just generally being in a foul mood and being unhappy. Anger at H and what I'm missing and I have to deal with. A bunch of crazy stuff at work that I get all riled up about. Negative voices in my head telling me just how f*'d up this all is.

Now, the trick is to accept reality as my facts and circumstances...some things I can change, some I can't (hopefully, I can tell the difference).

I can't change H and I can't really change work (much). All I can do is resist or accept reality.

Granted, I may not like what is happening, but fighting it and being all pissed off just hurts me.

Dopa, dopa
H's neurologist thinks that his shaking may be caused by damage to the cerebellum, the part of the brain that produces dopamine. So, will try some Parkinson's meds to see if it helps him. And an MRI next week to see what's going on inside. Most likely, more brain damage from the virus, Dr tell us. H's other neurological symptoms are progressing as well.

Why I sleep so much
I asked him recently how he deals with all this: his failing health, being homebound, feedling sick all the time and in pain (I was more diplomatic and sensitive about it when I said it, of course). He said that is why he wants to sleep so much, so he can escape the pain, feeling sick, and despair about his condition.

Finally, I'm getting him to talk about these issues and he's not defensive or angry about it. Finally, I think that he is moving towards (some) acceptance of his situation, even tho' he doesn't like it.
 
The thing that is hardest about this for me is that I know he is tired, I know that he is hurting, and I know that his will to keep going on is fading. His will has always pulled him through his health challenges, but he is tired of fighting. But, of course, there's nothing I can do about any of that except help him and love him, which somehow doesn't seem enough.

I wish I could kiss him and make him better, but I can't (well, I can kiss him anyway).

Fun and fun
Last night I was tired and cranky. I told H that between him (5 trips to the pharmacy and 2 Dr. appts. this week), the pets, the house, and my job...all I do is work and I'm tired of it.

I appreciate that H didn't judge or wasn't defensive, but said, "I know that this is hard for you. Of course you're tired."

I know that need to get out and have fun. OK. Right now, I don't even know what might be fun any more. Now, not trying to be all morose or anything, but after all this time, the only thing that seems fun anymore is to start drinking and smoking again (which I won't).

That isn't fun...that is addictive behavior to escape.

A trio of snippets

Another sick one in the house
Our remaining cat (we've lost two in the last year or so to a feline virus/cancer) now has a tumor on her belly. Sigh. More sickness in our house. We'll find out in a few days what's the deal.

We were told that it's likely she'll get sick as all of the other ones died of cancer and there is a virus in the house (well, two really).

So much sickness in the house. Sigh.

Can't be bothered
The other night, H and I were talking about how he's doin' (sometimes a touchy topic). I commented that the past few months have been hard on him and that he's sleeping more and more.

"Well, I only sleep so much because you don't want to be with me, you pressure me to go to bed, we're slipping apart, you won't have sex with me…" H says.

Me, I just sit there and don't say anything, not really feeling like I need to say anything for several minutes. No point in engaging as he won't understand and it will just lead to more ill will.

Nice not to be angry or defensive...just let it wash over me.

Lotta shakin'
H's hands are shaking more and more...a result of damage to his CNS by the virus. H did some homework on this and found out more about the progression of HIV dementia and what it means.

"Will I really turn into a vegetable?" he asks me.

"I hope not, honey; I hope not."

Two 2011 snippets

Happy New Year to my gentle readers.

I'm still alive and kicking out West. H is stable, which is a nice change. And I'm spending more and more time at work…and less and less time at home, which is preferred.

What to say?
On a typical day, H will complain repetitively about:

How sick he feels, how tired he is, how much pain he is in
How he hates taking his meds
How his dad disappointed him and has made stupid choices
How his mom was an emotionally abusive monster (she was)
How he doesn't get his needs met at home (from me)
How he is frustrated that he spends so much time in bed
How he is disappointed that he will never go on an international trip (Australia in particular)
How he is frustrated that he can't do what he used to do

And the only response I can muster to the repetitive sad state he's in is, "I'm sorry, honey," or "It was a long time ago" or "that must be frustrating or disappointing."

Thing is, I want to make him feel better, but I really can't. And I know that just being here is a help for him...to act as a witness to his life and feelings. But, sheesh, it is sad for me to see his pain and sadness and loss of hope, knowing that not only is there no way for me to fix it, but also that there is little likelihood that he can as well.

Acceptance is really, really hard.

This rock, again?
Poor Sisyphus...pushing that same rock up the hill, only to have to do it all over again. Can he choose another rock or another hill? Can he just decide not to push it up the hill? If he doesn't push it up the hill, is life worth living? (Apologies to Camus.)

Me, I've decided to just polish up my rock so at least it is purdy.

Monday, Monday

I H8 VD
Just don't like Valentine's Day (humbug). My (few) single friends don't like it as everyone gets all giddy and romantic with their SO. I've got one of those, but I dislike VD as much, maybe more, than my single friends.

Not because I'm lonely this VD (well, sort of), but because I'm in this tween space…not really involved and not really single. Yet, I feel obligated too and I also want to... do something for H….

Yet, my desire on this Valentine's Day *is* to be a single man.

So, H and I exchanged cards and a bit o' chocolate. A nice acknowledgement without any reference to the sex and romance part. Just the love, then…what a relief.

What isn't there
I work with a bunch of smart people, really smart people. And when you get into a meeting with them, for some reason they focus on what isn't there: here's what's wrong with this, here's what you missed....

Now, this isn't restricted to work certainly, as many folks focus on what they don't have instead of what they have.

I have a friend who is quite wealthy and healthy, has a wonderful man who loves him, several great kids, and more toys and property than anyone could want. But when I see him, all he talks about his how or ex-wife isn't doing this or that, how he's lost money on this or that transaction, how his kids aren't growing up right, and how much he hates living here and wishes he were somewhere else.

As annoying as I find this, I fall into this as well. In fact, I've whined here about my lack, sometimes at great length.

In balance, I'm healthy, well employed in a job I like, and generally a happy person that owns a home and loves my garden and music. No real worries in life other than dealing with H dying, which is a big one.

The tough work for me to reach acceptance and always see the sick and vulnerable man that I love who needs my help instead of seeing what he isn't doing for me (besides it's my job, not his, to make my life work).

New Year's Snippets

Best Wishes
I hope that my gentle readers had a great Holiday season and New Year's celebration.

No trip for H
With H's viral load so high, he just wasn't up to the trip and so he stayed home. Really was fine with me…oddly enough. 'Twas happy that I wasn't angry.

No meds for H or are there?
At first we were told that no meds would work for H's virus, now we're being told that there *might* be an anti-viral regimen for him, pending some conversations that his virologist will be having with some of his colleagues. We just have to wait for a bit to see…but with H's viral load so high, he's fading rapidly again.

Less and less
H's decline into non-functionality is continuing, of course. Not much to say here that I haven't said before. He's losing weight, doesn't want to eat, stays in bed most of the time….

Conspiracies abound
H's paranoia is increasing…he's been worried about any number of conspiracy plots and the latest one is about the "great culling," which postulates that pandemic diseases are just a way for "them" to get rid of undesirables. Of course, H sees himself in that category. He tells me tho', that he has a way out if he needs one (assisted suicide). I wish that he weren't so afraid; very sad.

Not just H
Even tho' it is happening to H, I hadn't really seen much information on HIV dementia and accelerated aging for folks on the meds for a long time. Now, there is this article in NYMag.com. These stories are so sad and yet oddly comforting for me as they give me some understanding of what is happening to my dear H.

Peace at home
One of my goals for this last year has been to have peace at home. For a long time, I have been filled with so much resentment and H with so much fear and frustration, that the "tone" at home was awful. I'm happy to say that it is peaceful now for the most part…me stopping drinking helped and also me working to reduce the poisonous resentment that I've held towards H. Yea, I can deal with the burden, but the resentment was just so corrosive. The key change for me was acceptance: H is like a (sick) child now and that isn't going to change, ever.

Expectations again
The father of a long-time friend is very ill with heart and kidney failure. The father's wife asked me, "What do I do? He's no longer fun to be with, he can't remember our history, what am I supposed to do? And I'm so angry at him."

"Love him and don't expect him to be the way he was. He can't be that for you anymore," I said. "That's what I've had to do with H…otherwise, I'll end up hating him and I don't want that."

As if this were so easy….

Monday snippets

More of the same
I haven't posted much as life grinds on with no real news…just more of the same with me struggling to cope and H struggling to do just about anything. Really, I'm struggling to accept and my not accepting reality is why I struggle.

That must be frustrating
I've told H on many occasions when he's expressing his dismay at all he no longer can do, "That must be frustrating, honey." "Yea, it really is." What I don't say is that it is equally as frustrating for me (especially when I hear the same story over and over) and that makes me frustrated (but there's nothing he can do).

Better living through chemicals
Effexor is a wonderful anti-depressant in so many ways. I'm not longer in my deep, dark hole and for that I am glad; in fact, my mood is pretty darned good these days. But, the side effects are troublesome, from the slight agitation feeling, to the hot flashes, to the libido up, but performance down.

Nodding and muttering
I keep finding H sitting at his computer nodding and muttering. He tells me that he's daydreaming. This usually also happens when he's sitting at the dinner table, fork shaking in his hand while he's staring down the dinner plate.

Using the oven timer
Yesterday, H put some cinnamon rolls in the oven while I was doing laundry. He came to me and said he couldn't figure out the timer (on our oven that we've had for 20 years). When I went to check on the oven, he had set it to self-clean and then to a timed bake for 90 minutes at 400. I tried to explain what he had done, but finally settled for "only use the left button" for the timer.

Wish I could remember
H continually reminds me of things that need doing. Problem is that he doesn't remember that he's already talked with me several times about the chore and we've reach agreement on what needs to happen. Chances are, the task is already done. Challenge for me is to reply as tho' we never had a conversation about the topic…that's how H sees it after all.

Favorite quote of the day
"If you experience chronic difficulties in a particular area of your life, there’s a strong chance that the root of the problem is a failure to accept reality as it is," Steve Pavalina here.

Be amazed

'Twas talking with my massage therapist, who's actually a spiritual teacher in some ways, about my decision to go back on anti-depressants.

I stopped drinking because I was not functional and now depression is getting the better of me so that I struggle to function, especially at work.

He suggested, "If you could focus on what H CAN do right now and be amazed at anything that he does...loading the dishwasher, folding any laundry, anything really...then maybe you wouldn't need anti-depressants."

At this point, I was beginning to grumble a bit in protest.

"You have a need for him to do particular things...things he used to do...and the fact that he can't is what makes you sad, depressed. Your expectations are what is making you sad. What if you didn't need him to do or be anything other than just what he is?"

Isn't that acceptance in its purest form?

Still seeing the doctor tomorrow, tho'.

Acceptance

Strange, but true…I am, for the first time, feeling peace with where H is and what is happening. Now, that doesn't mean I like it, because I most certainly do not.

Happily, I no longer get angry (or as angry) at H for his incoherent questions, his general lack of ability to accomplish anything, or his need for my help in almost every area of his life. These days, I have caught myself trying to be helpful, to anticipate his needs and to do so willingly and whole-heartedly, even cheerfully.

I'm relieved that I'm finally feeling gentle towards him again…been a long time, too long.

As I recounted in my last post, I recently pressed on finding the parrot a new home and getting a viral load test during his anti-viral medication holiday. Both of these topics made him very angry and remarkably coherent for several minutes, which is a rarity. The net of it is that he doesn't want to know what is viral load is doing, doesn't want to re-start the anti-viral meds, and doesn't want to work on finding a home for the parrot.

Seems that all he wants to do is spend time with his bird and with me. And sleep.

Last night, I was talking with H about how much he's sleeping these days (18 - 20+ hours a day) and that I've noticed this increasing the past few months. Again, I got one of the most coherent answers I've heard in a long time: "Well, I've just given up. I can't do anything. I feel sick all the time. I'm in a lot of pain. I don't have a brain anymore. I'm tired of fighting this. I just don't want to be here anymore."

This is the most honest answer I've heard from him in a long while; usually, it's about how he will get better…"when I get better, I'll do ," or, "when I'm on my med holiday, I'll…".

And without taking his anti-viral meds, he will die. Simple…they are the only reason he is alive today. We'll see if he really doesn't want to restart his meds when it is time to do so (it may already be). But, for now, I'll support him in his decision, even if it means he will die. Truth be told, his life is no better if he takes the meds; in fact, he'll just feel sicker from the "chemotherapy."

And while what is happening is sad, I am relieved that both of us are arriving at some kind of acceptance, albeit by very different paths.

Boundaries, an invitation, and a holiday

One of my struggles has been how to deal with the reality that I no longer wish to have a romantic relationship with H, yet we continue to live together in our home of 24 years. For me, the romantic part of our life together is long over and I just don't see my feelings changing, although I'm trying to keep an open mind. Needless to say, H has been in denial about this for years now. But, in all fairness, I haven't been consistent as I've been racked with guilt and shame about how my feelings have changed for him and about us...and I have wavered.

So, now, I am being consistent. And while he may pout, throw a tantrum (like the kid who wants ice cream before dinner, but mom says no), or try the masterful guilting that only he can do…I hold firm and am loving and kind with him. Oddly enough, I feel much better being around the house and, for the first time in years, I’m feeling more comfortable in my own skin. My hope is that he, like me, will get to acceptance on this issue so we can enjoy whatever time we have left together and in whatever context we have it.

Setting firm, unyielding boundaries is key, but also it is important for me to extend a loving invitation to H: he's welcome to stay with me and I will be there for him, whatever happens. I've been consistent over the years with him on this point: I'm not abandoning him (tho' he may feel that way), I love him, and I will continue to care for him, regardless of how our relationship shakes out.

H is taking a holiday from his anti-viral meds for the Summer. He talked with his virologist about how sick the meds were making him feel and he wants to stop for awhile and "have a life this Summer." Now, this is not without any number of risks, but Dr. says it is better for H to stop taking them entirely than not taking them consistently due to the risk of viral resistance. Having said that, there still is a risk that that he may get sick after a month or two off or that the meds won't be effective anymore if he starts them up again.

I told H that I support his decision to take a holiday. I can see how bad his quality of life is, but I also reminded him about what has happened in the past when he took a med holiday. It's important to me that he knows I support him and that I will be there for him and it's also important that I tell him the history.

I didn't tell him this, but I'm very concerned about him taking a holiday as I've seen what happened before, but part of me hopes that he can have a few months where we can enjoy one another again. And, another part of me just wishes that this means the end of his long, tortuous road of this horrible disease.

So many appointments

Finished my intensive evening treatment classes and now I'm down to one evening class, an AA meeting, a psychotherapy appointment, and a massage therapy appointment weekly. So, that's 4 - 5 appointments a week…a lot I guess, but worth it.

H says to me, "Wow, so many appointments…I thought you were done with treatment."

"Well, I want to make certain I don't drink anymore and I was already going to the therapist and massage," I said. The reality of it is that I'm just taking care of myself, wanting to stay sober, and trying to figure out what my life looks like. Yup, I need the care.

"I just don't think you need to go to treatment anymore...you never drank that much," he said. "I just don't know why you're seeing a therapist...you've seen him for years already and it isn't helping our relationship."

By now, I've learned to not defend my choices or my actions. It doesn’t matter. He doesn't need to agree or disagree or approve anything that I'm doing. In this case, being silent is the high road. But, he does pout about it.

I feel a transformation underway…for the first time in a long time, I'm focused on making my life better for me. I think that H can see me changing…certainly my personality has changed since I stopped drinking and I feel peaceful…but he's afraid of that change as much he's wanted it for many years. And he's not in any position to change himself at this point…his life is continuing to shrink and he's making it worse by not accepting where he is or we are.

He keeps wanting me to be at home (all the bloody time) and, happily, these appointments give me a reason to not be while also helping myself.

Changing dynamics

In my treatment program class last night, we learned about how families can react when someone gets sober. In my case, I'm not certain that H knows what to do with me ("Hey, where's the asshole I lived with for so many years?").

Many marriages end in divorce after one (or both) of the spouses gets sober.

But I'm not interested in fixing my marriage, just fixing me. Right now, it IS all about me.

He can't be fixed (tho' I likely underestimate him), so my marriage can't be fixed, I think.

And do I really know who he is now? I'm assuming that he isn't capable, which is likely true. Would I have drunk so much if I thought he could be there?

And also, to the degree he WAS there, I wasn't because I was drinking too much.

I've learned that H is an addict as well…a prescribed one, but one nonetheless. I mean, he's been taking pain meds for so long now and the long-term affects on brain biochemistry are there nonetheless. Throw in significant dementia and he'll not ever be what I need, in spite of how much I love him and want that.

As I get weller and weller (sic), I’m realizing how impaired he is, but he can't get well…well, as well as I need him to be. Where does that leave me, leave us?

Monday dyad

Illusions

I've been encouraging H to do as much as he can for himself. This could be medication ordering & set up, calling about insurance snafus, or even just getting an eye exam.

It's helpful to me if he can do the tasks, but mostly I’m just playing a game with myself that he's not totally dependant on me. If he can do this or that, then I don't have to acknowledge the reality.

Sometimes, he can do the task…but more often than not, he gets frustrated and whacked out. Then I have to jump in, call him down, and finish the task myself.

Might be better if I just do the tasks myself, me thinks.

Give up my dreams

We were watching some TV show and there was a Bentley on it…a nice new convertible. (He's always been keen on fancy cars, especially Bentleys.)

H sighs and asks me, "Should I give up on my dreams?"

"What do you mean?" I ask.

H says, "I just don't know if I should give up on my dreams…."

I say, "No, because anything can happen. I could die of a heart attack tomorrow and you could buy that Bentley. You just never know."

"I'd really like a red one," he says.

"Yes, you'd look good in a red one," I reply.

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."

Funhouse

When I was a kid, we used to go to the local carnival and they had a fun house. Dark, twisted hallways, mirrors, smoke, scary heads that pop out from no where, horrible noises...the ususal dark ride stuff. I always hated those because you never knew what was going to happen, but you knew that it was going to scare the **** out of you.

These days, while things are calmer...sense of resignation, perhaps...it still borders on the bizarre from time to time. And I don't know what to expect anymore.

H grabs me in the hallway, really, really upset looking...almost in tears.

"I have something important that I need to talk with you about...it's been bothering me a lot," he says.

I think "Oh boy, is this another relationship conversation?" But what I say instead is, "What's bothering you, honey?"

"Well, I've been watching this movie and the US government really DID cause 9/11 to happen. They let it happen, the b******s. I just knew that it couldn't be the terrorists...the government just wants to control us with fear to advance their agenda...."

OK, so I'll stop there with his narrative on this.

Another time he's visibly shaken and is telling me that he's having nightmares. So we are talking about that and then he starts telling me about watching CSI shows and shows on serial killers. And while he won't watch a horror or ghost movie with me like we used to (or even a tense movie at all with me because he "has enough nightmares"), he's clearly obsessing on death these days. And in some ways, he needs to confront it...even if on TV.

I'm finally learning to just hear what he has to say, not have any pre-conceived notions in my head about what he's going to say, and to not cut him off. The only way I know what is happening with him is if I get the unfiltered story. And so, I've shifted my internal monologue from "Oh, God, what is the issue now" to "I wonder what he's thinking." And when he says something, I just try to have an open mind and listen.

Keeps me saner.

But I really never know what to expect: it ranges from outright rage at simple things ("Dammit, you put WAAAAY too much food out for the dogs (insert much yelling about how I never listen to him)"), to complete contradictions in a single sentence, to multiple shows on serial killers (e.g, movies about them or documentaries about them) on the DVR, to a whimpering puddle at the thought of a government conspiracy.

Another step in my acceptance is that I just need to think of him as a child...sometimes they rant, they cry, are mad, are lost in fantasy land, or scare themselves silly.

Truth be told, it scares me too.