Monday, October 24, 2011

Dead weight

As always, life grinds on and on...push the rock up, it rolls down, push it up again (rinse and repeat...).

I wonder about finding meaning in life with all this grinding and rolling. I'm not talking about meaning in the abstract sense, but in the concrete sense of "here is why I get up every morning." This is not depression, mind you...just a heart and mind looking for a mission, for peace, for adult company, for satisfaction, for fun, for an adventure worth having.

H continues to be sort of a mess with a few stays at the hospital since I've last written. Pretty routine seizure (they think) activity. He's still declining although it is slow, almost imperceptible...at least until I see him try to have a conversation with someone. More of the same.

Part of the grind is living with someone I don't want to live with anymore. Over time, I've come to the conclusion that I really don't like H much as he is now. I would prefer not to be around him, to not have to deal with him, to close that chapter in my life. If I could, I would just "wish him into the corn field." (sic)

I've written here about the delusions and the paranoia. Recently, tho', a heap o' narcissism is cropping up and, after all, it is all about him. It is all about people listening to him (which means they must agree with him and do as he says) and of course, if they're struggling, it is because they didn't listen to him. Nothing worse than someone who knows what's good for someone else and has no hesitation in telling them with conviction.

All of this is to say that I generally feel pretty happy (really), but struggle with putting one foot in front of another (with purpose) as I move through time with H. It's hard for me to imagine that I'd place H because I tire of him, because he pisses me off, because I'm tired, because I don't like him anymore, because he is dead weight.

Tuesday, July 12, 2011

It's been a long time since snippets

Finally finished up a major project at work and am coming up for air. Work continues to be a welcome distraction from home...I prefer work to home. Work = respite for me.

H continues his inexorable decline and it's hard for me to watch, as it has been for years.

Sometimes, I look at H and wonder where he has gone. Yea, I know what happened, but it's strange to be around this person wearing H's costume. Occasionally, I get a glimpse of a non-demented H, but not very often.

Placement is as placement does
The other night, H asked me quietly, "Can I go to the nursing home?"

"OK. Is that what you want?" I asked. In the past, he's only brought up a nursing home when he's been mad at me…"just to get away from you" is what he'd yell.

"Yes," he said, "at least there I'll get the occasional hand job."

Sigh. Right. Frankly, I think he's depressed, lonely, and isolated here in the house by himself so much. A nursing home would at least give him a community, some social outlet...if not the occasional hand job.

Trouble is, I don't know if he's really serious as he often takes shots at my expense. But, I'll ask him about it again soon.

While I very much want to be relieved of my burden, it is very sad to consider that he'd be moving out and on.

It only hurts all the time
H is in a lot of pain these days. His pain meds aren't covering his neuropathy pain, but taking more meds just knocks him out. He is very frustrated and tired of the struggle and all of his pain and meds that make him sick. My poor guy.

Wood elves in the wardrobe
About 15 years ago, H was in a nursing home recovering from a bad bought of pneumonia. The guy across the hall, a young guy, would go on and on about the wood elves in the wardrobe in his room. "They're hiding right now, but when you leave, they'll come back and harass me," he would say.

H told me at that time that if he was ever like that, commit him. Well, we don't have fairies in the cabinets, but we do have a long string of paranoid delusions: our neighbors monkeying with the property lines so that we have to tear down the house, various conspiracy theories where H is the last man out, and any time a leaf is out of place in our front/back yard, someone is coming into the yard with ill intent.

Dreaming of home
H continues to dream that he's half naked, can't find his car and his cane and so can't get home. A shopping mall is in his way and he can't go around it because it's too far without his cane. He can't go through it because he'll get lost. He has the same dream over and over again and never makes progress towards his goal. He wakes up anxious & sweating at home, in his bed.

Thursday, May 05, 2011

This 'n' that

While H was up and about much more for awhile, he's now back in bed most of the time. Maybe up for just a few hours a day again. He told me that he just doesn't feel well and is very, very tired. Nice to get the gallbladder out, and that helped him a lot, but at the end of the day, he's still a very sick puppy.

He's got a classic car that he has been lovingly restoring for the past 20 years or so. It is the second love of his life, he tells me. He doesn't feel well enough to even take it out for a spin around the block, not to mention getting it to the shop again for some (more) restoration work.

I've been working to get him to accept that our romantic relationship is over. I told him so in so many words a bit ago, just as I have several times over the past few years. Each time, this seemed to be a surprise to him. Sigh. I'm guessing he just doesn't remember our conversations, is in denial, or hoping I'll change my mind/heart.

Finally, I've come to the realization that I don't like being home anymore...in retrospect, this seems obvious, but I finally named it and claimed it. When H is up, I don't like dealing with him or his noisy pet or his blaring TV shows or his incessant repetitive questions and statements. When he is asleep, I fantasize/worry about what my life will be like when he is gone, and I hope that he goes soon.

And finally, finally, I am able to catch myself in conversation and respond with more patience and kindness than I thought I had. I keep saying to myself, "You've got a kid now…respond in kind."

All of this points to a few truths:
* My identity is H's caregiver (and partner) and little else
* I am feeling lost as I struggle to move past this identity and I worry about how lost I will feel when he is gone
* I am often profoundly tired and I understand why people just give up and walk away

But, push the rock up the hill again, I must.

Wednesday, March 02, 2011

Healthier weirdness

Now that H has had his gallbladder out, he is doing much better with eating. And he's just not in bed as much. I mean, he's up much of the day now on weekends, he's tidying up the house, and starting up long-mothballed projects.

This is really weird. I suppose that I should be happy about this, but it's taking some adjustment. H finds it weird too.

It's so strange to have someone who has been in bed for 13 of the past 15 years and now he's not...to go from bed-ridden and terminal to talking about his hope for the future. I don't know how to be with him as a partner anymore...just as a caregiver.

And the MRI showed no changes in his brain over the last 5 years or so. I have fears it means this will just drag on and on.

I don't trust it. I don't really like it. And it pisses me off, "Where have you been the last decade, my dear?"

Oh sure, I'm happy for him that he's feeling better. But, the dissonance in my head is daunting. How do I reconcile the "I just wish you'd die already" feelings with the happiness *for him*. Well, I can't.

Monday, February 21, 2011

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.

Monday, February 07, 2011

Wanna see something really scary?

For the first time in a long time, H told me that he was frightened last night.

I had asked him a few days ago if he was afraid about the upcoming MRI...he said, "nothing frightens me anymore." Now, I didn't believe it.

But last night, with tears in his eyes he said, "(asm's endearing nick name), I'm afraid of what the MRI will show."

"I know, honey," I said. "I am too. But let's find out what the story is, first."

He continues, "I mean...I know I'm slipping, but I don't want to know why or what is causing it."

I just held him while he sobbed and told him that I love him. What else can you do?

I wish I could tell him that it will be OK and that there's nothing to worry about. But I don't believe that is true. Well, maybe it's true, but my hope has waned with his health.

As much as I desire to be free from my burden and desire him to be free of his, it's getting from here to there that is terrifying. And seeing him afraid is very hard.

H continues to have dreams where he can't find his cane or his car. He's half-naked and looking for a way home, but without his cane or car, he can't start the trip home, but he knows he has to get there somehow.

Friday, February 04, 2011

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.

Monday, January 24, 2011

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."

Thursday, January 13, 2011

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.