Quattro Tuesday

Tree up and decorated
Last year, we didn't have a Christmas tree. After two years of me putting it up a giant tree mostly by myself, I just wasn't going to do that much work again. And besides, its no fun to put up a tree by yourself, especially since I see the ornaments as one rendition of our history together and I miss sharing that with him.

So, H and I were talking about putting up a tree this year and I had to work and work to get him to understand that 1) I would like a tree this year, 2) it can't be a large one, and 3) I'm not going to do all the work myself again. Nope.

So, last weekend we put up and decorated a 4.5' artificial tree. Just big enough to hold all our "special ornaments" and yet small enough to finish quickly to make it fun. It was nice to have him there, decorating, as we reminisced as each special ornament came out. How it should be….

Viral load up and despondent
H had been on a holiday from his anti-viral medications since about March of this year. 3 months ago, his HIV viral load was effectively 0 and his T-cell counts were good. Results from last week showed that his viral load is now up to 330,000 and his T-cell counts are dropping.

Time to go back onto the meds, I think, and he's not happy about it at all as these meds in particular make him feel sick much of the time. His virologist will let us know in the next few days the results of a test (phenotype) to see which meds may still work against H's virus. The big risk is that the virus will be resistant to the new meds that had been working for H the last year; if that is the case, there is no other treatment for him and he will most certainly get sick and likely not pull out of it. And if the meds do work, he can look forward to feeling sick most of the time.

Oddly, I feel a bit relieved and I also feel a bit frightened and sad for him.

Now, what's for dinner?
As the chef in our house for the past decade or more, I've got my favorite recipes and new ones that I try out. Over time, H has ruled out whole food groups: pasta, curry, pizza, stir-fry, Mexican, eggs, etc. Now, I'm struggling to figure out what to make him for dinner and, at the same time, my resentment grows for his increasing fussiness.

The unbearable weight of responsibility
So, my manager is leaving the company and I've been approached by several folks, including my "big" bosses, telling me that I should apply for my manager's job. I've led groups like this one before, so I know what's involved. And this is a great opportunity any way you choose to slice it.

But the first thought in my head was, "I just don't have the energy for this as long as H is around. How can I focus on work when the situation with H just sucks the life out of me?" Sigh. I am so tired of being tired and distracted.

Turkey snippets

Smokin' 'n' drinkin'
While I was in Europe last month, I decided to smoke and drink out on the town with my pals from work. I worried a bit about the drinking…if I had my first drink in 7+ months, would I be able to stop?...but all for naught. 'Twas a social thing only. During the day, no cravings; no cravings upon my return home. I could take or leave smoking on the road, but once I got home, I wanted to smoke more.

Down for a visit
Although I've only got one response from H's family to my status email, H will be heading South to visit many of them after Christmas. They are eager to see him and I'm glad that he wants to go. Also, gives me 2+ weeks of break, which I am grateful for.

All is calm
H is doing rather well physically right now. We'll know what his viral load is here in a few weeks. What's so odd is that he's stable right now and his spirits are good. In some ways, I don't know what to do with him when there isn't a health issue going. His dementia is still worsening tho'.

When I'm sick
Over the past several weeks, I've had two migraine headaches and also got a weird flu. H was good about this, as there was no way that I can keep up at home when I was that sick. He said, "Sheesh, even when you're sick, you don't get a break." I replied, "Yup, I know." And, to his credit, he asked me for nothing during my sick times.

Deteriorating in front of my eyes
One of H's sister lives in another state, not too far from his parents. Since this sister lives closest, she sees what is happening with his parents. Like most folks in their mid to late 70s, they have a myriad of health issues, but some dementia is beginning to creep in.

His sister said to me, "I can't believe it, I'm watching them deteriorate before my eyes…it's horrible (crying)." I told her that I understood as I'm watching H deteriorate as well. She asked me what she should do…I said, "love them and realize that you can only do so much to help them…you can't stop them aging. Most importantly, just be there for them."

Family response

My prior post is the text of an email that I sent to H's family to give them a sense of where he is.

Of the 3 recipients (two sisters and parents), only one sister replied:

"...that is sad news, very sad indeed. Thanks for the update. I know some people who can help with H's caregiving…just let me know and I'll fwd their contact information."

Trouble is that a full-time (or even part-time) caregiver is waaay more than I can afford ($800 - $1,000/week) and that wasn't really the point of my email. (I do worry about that as H declines further that I won't be able to keep him at home…even tho' part of me would just like him to leave.)

Really, all I wanted to do was to give the family a sense of where H is. Interesting to me that I got only one response and that was to get some "hired help.

I was hoping to hear that they all will spend as much time with H as they can while they can.

Thought you should know

A few days ago, I sent an email to H's family to tell them about my worries and to give them some idea about what is going on.

Here's the text of that email (kinda long, apologies). In a future post, I'll give y'all a rundown of their reply.

Beloved family,

I hope that I have all your correct email addresses here….

I wanted to give you all a private update on how H is doing. Please don’t forward this email to H as I don’t want to have him worry unnecessarily or hurt his feelings.

Please don't worry, I'm not wanting to "put him somewhere" right now, nor is he having any acute health issues right now. And, I'm not trying to frighten you or request any action from you.

I'm telling you this because I know that we all love H and you need to know what is happening.

What I am seeing is a continuation and acceleration of his general physical and mental decline, especially compared to a year ago. Many of our long-time friends see this too and have told me their stories.

His HIV viral load has been down this year (in spite of now being off his anti-virals) and his T-cell count is normal for a man his age (highest that it's been in a decade or more). Usually, when his viral load is down, he does better physically and mentally, but not this time. He'll get another blood test next month.

His doctor has told me that they can control his virus, but his dementia will get worse. And it is:

-He can't operate the washing machine any more…he gets confused by the dial and what to do. We've had this washer for > 10 years now.
-He can't operate the over timer anymore…we've had this oven for almost 20 years.
-He will sit and mutter to himself for several minutes at a time, shaking…almost like an autistic kid.
-He can hardly make a sandwich or a bowl of cereal for himself anymore
-His short term memory is shot and he will ask me the same question 10 times a day
-He is having a harder and harder time keeping up with even a simple conversation or TV show.
-He is having much more trouble walking and balancing, even with his cane
-He can't take his parrot out and about anymore…he's too tired, too lame and afraid to leave the house
-And on and on…

Now, some of these things (and worse) have happened before, but what is so striking is the change in the past year. And that decline is accelerating. Even though he does have his lucid and cogent moments, he is becoming physically lamer and cognitively much slower. And, I don't know how else to describe it, but his personality is fading and his emotional range is shrinking.

Doctors tell me that he is in a decline, where we will lose him "inch by inch," maybe faster. The can't predict his death (besides, we've all heard those predictions many times), but they do say that he is heading towards "general disability," which means the inability to do anything. Much like what happens to Alzheimer's patients.

Based on what I'm seeing and what the doctors tell me, the reality of it is that H is not going to get any better than he is right now and he will most certainly continue to decline.

My recommendation to all of you is to find a way to spend as much time with H as you can within the next year or so.

Much love,
asm

General disability

A long-time friend is now helping me with the garden. She has know H and I for about 20 years or so. Now, she's over a few times a month and is able to spend some time visiting with H and me.

While I was visiting with her yesterday, she told me how she had seen H decline over the past year. She characterized it as significant mental slowness, difficulty in getting around, lack of ability to track with a simple conversation, and just overall "fading" of his personality.

She says that "if he continues declining at this rate, I don't see how he can be at home for much longer…likely he'll only live a year or two more."

I can see the same things also (and I do think that his tether is short), but I'm so close that I don't notice the gradual decline and I mostly focus on the significant events: confusion over the washing machine dial, inability to make a bowl of cereal, major short-term memory issues, muttering to himself and shaking, and trouble setting the oven timer.

While I'm away next week, a series of our friends and family will be spending time with H. I will check in with them after I'm back to get their observations.

But, I know what they're going to all say and I do appreciate their counsel. That doesn't change my reality any, but does help me with needed perspective.

Reality is that, given his series of CNS & dementia issues, he is heading towards general disability, a disability where he can't hardly do anything, eventually resulting in him being bed-ridden.

Leavin' on a jet plane

In a few days, I leave for Europe again. Last year, I went to lovely Amsterdam; this year it is (I've heard it's lovely) Rome.

While it sounds a bit glamorous that my company sends me about the world from time to time, I find it rather grueling and my ole' man's body is not too keen on that whole jet lag thang.

Nonetheless, I am looking forward to the break. I've got H covered through a combination of family and friends. And, so I am free to travel half-way across the world.

This is the first time that I've had such diametrically-opposed feelings about leaving.

On one hand, I can't wait to get away from H and all the care that he entails. I need the break and I'll have a good time travelling with my team.

On the other hand, I am actually more worried about him than I have been in a long time. Not from an acute health issue, but from the continuing chronic decline. Over time, he just seems less and less "there" and less able to do even simple tasks.

But I am certain of this: when I get in the cab to the airport, my aching back and other body parts will stop aching. And, when the return cab drops me off at the driveway at home, those aches will return

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.

The never ending list

Since I don't see H much - what with me working and him sleeping so much - whenever I do see him, he rattles off a list of what "needs to be done" and "we need to buy."

Now, I've written before about this, but H's requests for the list are doing nothing but escalating. And in the past I'd get all agitated about this (the "I have to do everything" martyr song), but now I'm less upset about the never-ending list.

Many of the things he asks for - cleaning the gutters, ordering pet food, new eyeglasses - are all fair game, but some are just bizarre.

My favorite is the pressing need to tear out a Laurel hedge in the back yard and replace it with a small building…a studio with power and water that we could rent out. The other fun one is that the 42" plasma TV that we have had for less than a year isn't "big enough," so we need to buy a 54" one. So not going to happen.

The other day, he was pressing on getting something done (I can't even remember what it was now) and I did get upset.

"Why are you so pissed off?" H asks me.

"Well, I can't keep up anymore with just what I need to do and you sleep all the time and then get up and tell me everything else you want me to do. And over time, you're able to do less and less, so you just assume that I'll pick everything up that you can't or don't want to do," I said. (AKA "the martyr song.")

"Oh, I don't understand, but I'm sorry." H said.

I thought about telling him that nothing happens in the house or our lives unless I do it, but it didn't seem worth it. So, I just dropped it as I often do. The trap is that I keep thinking that he can understand and empathize with my experience (he used to be able to), but of course he can't anymore.

The challenge is to take what I think needs to be done and talk him down from the others where I can. And since he often can't remember what he asks for, sometimes I just agree and then change the subject.

Peace in the house

Since the very brief conversation that we had, the tone in the house has been more peaceful, more gentle. No real whining, carping, no angry skulking from H.

Part of this is that between me stopping drinking and taking anti-depressants, I'm just in a better mood.

But most of this is just H and me clearing the air with a thank you and a you're welcome.

This isn't to say that all issues are resolved (far from it), but I needed to hear some appreciation to remove that chip on my shoulder. And, as much as I stuggle to not have any expectations or needs of H, I needed to hear him acknowledge what it is that I've done and continue to do.

Appreciation

We're in the office, surfing the Web and H says to me, "I love you (singleman's name).

"I love you too, honey."

H continues, "Thank you for not abandoning me."

"You're welcome."

Great resources for spouse caregivers

If you're caring for an ill spouse (as I am), I've found a great resource at wellspouse.org.

Useful information on the site, but the real gems are in the forums (you'll need to register). I spent a fair amount of time being amazed and relieved that others experience what I do (e.g., distress over the change in our relationship, should I stay/should I go?, etc.).

On a different note, I started taking Effexor again for depression. Even tho' I'm only a few days into a low, ramp-up dose, I feel so much better. While I have mixed feelings about taking the meds, I can't argue with the results. And I'm a bit worried about side effects, but better the devil that you know.

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.

Birds in a cage

Whenever I get overwhelmed by the whole ball o' fun, including work, stress from watching H decline, and now having to do everything around the house (except for cleaning and H's meds), I just tell myself, "This sucks, but I can handle it." Seems to work much of the time.

Nonetheless, I find myself fantasizing about life "outside," life without caring for a very sick person…of course, the fantasy is likely better than what the reality might actually turn out to be.

H has had a large parrot, a macaw, for about 7 years now. In the past, H took the bird on picnics, to Petco, to friends, and for long walks around the neighborhood. But recently, H has not been able to do these things and is now having trouble holding the bird as his hands are shaking. Of course, H can't clean up after the parrot or feed him, etc….so I end up doing that.

For awhile now, I've been thinking, but not saying, that we need to plan for a home for the bird when H can no longer care for him. Now, these birds need a lot of attention…they are highly social animals and they adopt families as their "flock," so it is bad for them if they spend too much time alone or in a cage, which is what is happening now. I work much of the time and H sleeps pretty much all day.

I've raised the topic of H and I working together on finding a future home for the parrot (but, likely, I'll have to arrange that myself). I want to make certain that the bird gets a good home, someone who knows how to care for him. But H got really, really angry about it and said that the Dr. just needs to change his meds so he doesn't shake so much, but that is just one part of it.

H fell again the other night and was incoherent for 5 minutes or so afterwards. This is the fourth time in two weeks that he's passed out and fallen. Luckily, I was home each time. Drs. know about this, but say that his blood pressure is so low that they're not certain just what to do. Mostly, "just don't stand up so fast."

This morning, H said that he is afraid to take a walk in the neighborhood or go anywhere because he might fall down and that he doesn't feel well. And that he's afraid to leave the house without me. And so, even tho' H stopped taking his HIV meds this Summer, so he could "have a life," he doesn't.

When he's feeling better

It drives me crazy when I come home, as last night, and H is in a chipper mood and has been doing stuff.

"Doing stuff" in this case means playing with the pets, doing stuff on the computer, and cycling the dishes in the dishwasher. Nothing major for the rest of us, but major for him.

I guess that I should be happy that he is feeling better for that day, but really I just resent it because it's not consistent…and most importantly, that it conflicts with how I've learned to see him and my own resolve with how to move forward.

And just a moment ago, he called me at work to say, "I just called to say I love you."

While the distress and desperation that I often feel is overwhelming, so is the cognitive dissonance.

Are we there yet?

Back at the desk (and the Web) after a two-week+ break. Nice to get off the grid for a bit. Didn’t do any travelling this time…was a staycation and it was a delightful break from work: get up and just do stuff I want. And coming back to work is a relief from what has been going on at home.

H has been having fainting and falling spells, so that created a bit of a hubbub during my break. Well, hubbub for me anyway. Dr. didn't seem alarmed about this or H's faltering mental state…"well, yes, his dementia will get worse, yes, he's at risk for falling." What's expected by others doesn't help; it's a big deal to me.

Keep wondering when he'll die…like being on a long, hot, uncomfortable car trip and you don't know when you'll get there because you've never been there before and traffic is bad. Sure, at some point you will get there, but not soon enough, in any case.

H pretty much slept through my whole vacation. Up around noon, take meds, back in bed until 4, take meds & eat, back up for dinner at 8, up for a few hours for TV, and then sleep again. More of the same, really. Just a shadow in the house now.

So, I just go about my life, visiting friends, working in the garden, etc. and I see him for 2 - 3 hours a day.

This year, among other things, I had planned to 1) quit drinking (check), 2) focus on work until vacation (check), 3) take an extended break from work (check), and 4) figure out what I'm going to do with H.

So, here were are.

Short answer: no surprise, but I’m not going to place him until I have to. I won't place him (I don't think) due to my issues, even tho' I can really feel the burden now that I'm rested about work. But I do wonder how long he can continue to be at home by himself.

He can't remember to take his meds, is at high risk of falling, goes to bed and leaves the windows opened and doors unlocked, can't remember to eat or if he does, he can't figure out how to make food or even where to get food from the refrigerator (e.g., looking for eggs in the produce drawers).

And from here on out, that trip in the hot car will only get more uncomfortable, however long it takes to get there, wherever it is that we're going.

Why I sleep so much

For years, H has slept a lot…up a few hours in late morning and early evening, but generally in bed the rest of the time. Sometimes he sleeps more and sometimes less, but generally, he's sleeping 18 hours a day or so. When he sleeps more, he's up for a few minutes here and there and then goes back to bed.

When I've asked or said anything about his sleeping, I get a range of answers, usually defensive, which is not what I was trying to achieve:

* Because the meds make me sick and I'd just rather sleep it off
* The pain meds make me so sleepy
* You're an asshole and I prefer not to be around you
* You don't want to be around me
* I'm trying to give you some alone time

When I ask, I'm looking for information about how he is doing. A few days ago, I mentioned that it seems he's sleeping a lot more (up for just a few minutes at a time and I really notice this) and he said, "Well…you can't diagnose me. "

"Oh, honey, I'm not trying to diagnose you, I'm just trying to understand what is happening," I said. "I'm asking because I care."

H said, "Well, I'm just depressed. I'm sick, I feel bad, and you don't want to be with me anymore. So I sleep. Besides, I just love sleeping. I really enjoy my naps…the highlight of my day."

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.

The thing about the hat

H and I went to our friend C's b-day party a week or so ago. She's 86 now.

While we were there, H told me that he was feeling bad vibes from the crowd and that C had likely told them bad things about him. I told H, "Well, if there's an issue, give them the responsibility to bring it up…otherwise, let's enjoy ourselves."

Later, H talked about how the bad vibes at the party must be because he wore a hat when outside during the party. Now, it was a very stylin' hat, a modern take on a nice fedora. He said, "They're from a different era and must not have liked me wearing my hat."

For the next 5 days, C called us several times, but H refused to answer the phone when she called and he didn't want me to answer it either. And he went on and on about how C is just cranky and wants to chew him out about wearing the hat. I tried to talk him down, telling him that "you don't know that's the issue…." But of course, that was the issue for him.

"I just know she wants to chew me out about wearing the hat," he says.

Finally, he decided to call C to "spoil her little game."

As it turns out, C wanted to thank us for coming to the party and to tell him how much she enjoyed the flowers that we sent to her home. No mention of the hat.

How to wash

Since i've been so busy recently at work and H is on a break from his anti-viral meds that make him feel so ill, he's been trying to help more around the house.

I really appreciate all the help I can get and give him losts of positive reinforcement for any help at all, even unloading the dishwasher and bringing up the empty garbage cans from the street.

Last night when I came home from work and the gym, he was starting to do laundry. He asked me how I do it.

"What do you mean?" I asked.

"How do you use the dial? Don't you start at the top?"

Our washer has 3 cycles (heavy, light, and delicate) on a big dial. I showed him each of the cycles and told him what each was for.

I told him about the dial for about 5 minutes trying this tack and that. You "don't always have to start at the top of the dial," but that you pick the cycle based on the clothes and how dirty they are. And sometimes, where you start is not at the top of the dial. It just depends....

He was very puzzled and more than a bit agitated at this point. Clearly, he was frustrated.

I finally said, "For most things you can just start at the top of the dial."

"Oh, OK, now I get it," he says smiling. "I've already washed one load, you know."

This is a man with two college degrees and was once one of the smartest people I know. Now, laundry seems daunting.

He has noticed that he hasn't rebounded (energy and thinking) like he has in the past when he took an anti-viral med holiday. I agree with his self-assessment. He asked me this morning if I was worried about this.

"No honey, I'm not. Give yourself some time off the meds. You know that you have good days and not so good days. You'll be just fine."

"Good, I'm glad to hear that," he says smiling.

But I know he won't. And I'm scared and sad about it.

Peas for dinner

About 12 years ago, H was recovering at a local facility that has a specialty in AIDS care after a bout of PCP pneumonia that nearly killed him. At that point, he had been in the ICU for almost a month and needed skilled nursing care to get him back on his feet. This is the same place that I was working to place him at the end of 2007. Lovely, kind people and state-of-the-care.

I had wheeled H in a wheelchair down to the dining room as he wasn't yet able to walk due to shaking and weakness. We lined up for food and I got his plate from the servers. Tonight was steak, mashed potatoes, and peas.

A handful of folks were in the dining room, mostly residents and a few family members. All the residents were either in wheelchairs or using a walker/cane. Only low talking, serious tones.

At the table, I'm cutting his meat because he isn't coordinated enough. But he bristled at being fed. He tries taking a drink, but is shaking and spills the water .

He tries to stab a pea with his fork, but misses and the pea skids off the table. I suggest a spoon and reach for it. "No! No! I can do it," he says.

He loads the soup spoon up with peas and moves up from the plate. OK so far, but then his hand starts to shake a little bit…a few peas drop to the table.

The higher he lifts the spoon, the more he's shaking and peas go flying. One hits me in the forehead and bounces into my water glass. I start laughing, then H starts to laugh and the spoon shakes more.

Now several peas are launched across the dining room. One splats on the nearby window. One flies towards the serving line and many land bounce across our table. At this point, I'm nearly in tears laughing…H begins to laugh more. And more peas fly.

One flies across the dining room, bounces on a table, and hits a guy in a wheelchair in the side of his face and drops into a visitor's plate.

At first he flinches like if a bug hits you, then he realizes it’s a pea, looks at us and starts to laugh heartily. Then others at his table laugh. Later as they were leaving, one of them comes over and says, "Thanks for making Joe laugh…we don't see him laugh enough anymore."

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.

Brains & bunnies

H says to me in the car on the way to a local park, "I can really tell that my brain is not what it used to be. "

"How so honey?" I know the answer, but am wanting to encourage him to talk.

He says, "I can't remember hardly anything anymore and I keep having to re-learn how to use programs on the computer. And I've had to learn them again and again."

"That must be very frustrating," I say. What else can I say?

"And I can tell what's from the dementia and what's from the stroke and the epilepsy and what's from the meds."

I nod and say, "That's a lot of stuff, isn't it? Honey, you have gotten more than your share. And I'm sorry for that."

"Yea, me too. I thought it would get better without the (anti-viral) meds, but it isn't."

I say, "Give it some time, honey," not believing what I'm saying.

When we get to the park, he sees a bunny and goes on about it for quite some time. "Oh, look a bunny…." He's standing there pointing his cane at it, bending down and talking loudly to it. People looking at him being so excited and smiling kindly like they do for a little kid. I find it challenging to stand there.

We walked a bit in the gardens, but it became very clear that he was struggling just to walk around on level ground. I'm learning to be more patient and go slowly with him, which is hard as my gut just wants to run away.

And later on the way home, he says, laughing, "It just made my day to see the little bunny. I love rabbits, you know, so soft and furry and kind."

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.

Life and presence

Get a life

H has been struggling with side effects from his many meds: gaining weight, sleeping a lot, and most notably, just feeling like-he-has-the-flu sick. The latter is from his antiviral meds. H wants to stop taking the antiviral meds so that he can "have a life" this Summer. In the past when he's stopped his meds, he'll feel great for a month or so and then get very ill; been through that before and would prefer not to repeat.

In some ways, I don't like it when he's feeling better. His demands on me increase…he feels better so he starts more projects, but he rarely finishes them or can finish them anymore. And when he's up and about, I should just enjoy him while he's here, but I struggle with that too: I have all those fond feelings for him that I feel very conflicted about because I've been up and down too many times before.

And when he's feeling better, his expectations rise: he wants to do stuff with me, hang out with me…normal stuff really. But I just see it as work….seems like all I do is work these days. Work at work, work at home…little down time right now. And, to be honest, it is work to be around H for me now that I'm more present.

Being present

One of the side effects of (some would say the reason for) my drinking was that I was not present when I was at home. Heh, hard to be present with a minimum of a 6 pack a day.

Now, without drinking, I can be present and I find that a challenge. I can deal with the notion that he's sick and afraid and feel compassion, I can deal with his dementia and be patient and try to understand, but what I can't deal with is the thought that this will drag out for (many more) years…knowing that I'll not (ever) have a partner that meets my needs.

And yet I struggle to get those needs met now due to feelings of guilt and shame as I'm "leaving" my partner. Very strange, but that's how I feel. As much as I want a partner, or even just some fun, the block is there and much of it has to do with the thought of lying to him or hurting his feelings if he found out.

Random snippets

Treatment burnout...

Well, I've spent so much time on recovery stuff recently that I'm just burned out on it. Not that I'll stop attending my sessions and all that, but sheesh I'm tired of hearing about drinking or not drinking. The counselor in my treatment program is having fits with me about this as it challenges much of the AA a priori dogma.

Happily, I don’t have any cravings and I rarely think about drinking…well, unless I'm in a meeting of recovering alcoholics. Question under consideration: I know that AA is tremendously helpful to many, but given that I don't struggle with not drinking …how much of this do I really have to do to keep myself sober?

Don't go to that meeting!

H is worried that I'm doing too much right now, yet he can't see that he is a big part of my overload. Work is crazy busy and he's worried that somehow I'll run into someone at my once a week treatment meeting that is from my large company and that "it won't be good for your career." He also says, "You need to focus on work and yourself, you don't have the capacity to go to a meeting." Reality check, please.

It's really more about him not understanding the facets that I juggle constantly: it's work, work, work at the salt mines, then home to do more work (make dinner, listen to his old angry stories, take care of the pets), my self care stuff (including the gym & therapist), and oh that pesky spiritual path thing. I know I need a vacation, but that won't happen until August. So, yea, I need to do a bunch of self-care stuff and I do it wholeheartedly without guilt.

Just go back to bed, would ya?

No surprise, but H doesn't have all that many good days these days. But after a slew of bad weeks, he's up and about a lot more right now. So, he's up early with me, sleeps during the day, and is up when I get home. First time in literally years and, of course, I've been fancying myself a single man, so I have much dissonance about this. But, I'm not PO'd at him since I've stopped drinking and I am grateful for that.

He "just wants to be with me." I appreciate the sentiment, but all I hear at this point is neediness. I don't do well with this as he's been so bloody needy for so very, very long. But, when he's up and about and trying to be all chipper, I mostly just want him to go back to bed. Now, I don't say that, of course, but I think it and I also think to myself, "How many more years do I have to babysit?"

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.

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.

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?

Finding a replacement

Someone in my treatment class was whining about how much time the class and homework is taking. (I didn't say it, but I was thinking the same thing: Class weeknights from 6 - 9:30 and homework too.) The counselor asked, "Well, how much time did you spend drinking?" Every evening and weekends too.

Someone else in the class was whining about how they had to rearrange their life around the classes. (I'm sure you can see this one coming.) The counselor said, "Well, you rearranged your life around alcohol, didn't you?" Uhhhh, yes, I did, clearly.

Very strange to not drink 1,000 or more calories a day. Now I have to eat and eat and eat. And even so, I’m still losing weight. Eventually, I'll figure out and get comfortable with how much I need to eat, but sheesh…I've never been a big fan of eating anyway.

Even stranger still is to be able to know in my heart that my romantic life with H is over, yet not be angry at him about it . The more present I become as I dry out, the clearer it becomes to me that I have to take responsibility for getting my needs met and not blame H...just love him.

Weekdays of clarity

I haven't had a drink since last weekend and I'm amazed at how clear I'm thinking; people ahead of me in the treatment program say that thinking continues to improve for a long time.

Work is easier, my quick wit (we can debate how funny it is) is returning, and I'm realizing just how much I love H in spite of it all. And a little support from H and our family goes a long way in helping me feel better too.

I also realize just how impaired H is - not just in the "big" things, like not being able to cook a meal - but in small things, like tracking a simple conversation, mumbling half the words in a sentence, or struggling to wash a pan because "no matter how much I wash it, it just feels oily." (It wasn't.)

Weekday schedule now is work 8 - 5 & intensive outpatient treatment (group therapy) 6 - 9:30. Throw in physical therapy and psychotherapy once a week each and 2 AA meetings a week and I'm max'd out. Too much therapy if you ask me…. And just for fun, I'm getting a cold too.

Happily, sister and nieces are cooking for H and he likes seeing them and they love to spend time with him. And a nurse is now coming in to manage meds for H.

Nice to have some relief so that I can take care of myself.

But best of all is that my anger towards H is diminishing in a big way and I'm able to be more patient and kind. I simply don’t have the hostility towards him that I've felt in the past…even when I'm exhausted and he's being, well, his impaired self.

And for all of this I am very, very grateful.

Monday snippets and !s

We had a nurse come to the house today to evaluate H for home visits to help with his meds. It's always striking to have a cogent adult in the house and compare H to that. And I realize how lost H would be without my help with all the paperwork and questions. The first nursing visit will be later this week!

Someone asked me once how my birthday was, I said automatically, "Fine thanks…just another day with a hangover." Well, I've not had a hangover every day for a week or two and I'm realizing just how impaired I have been. Wow. My mind is working again and I'm getting stuff done at work. I have energy and my quick wit is returning. And I've lost 7 pounds!

Local sister is taking care of H's dinners for the next month or so while I'm at evening sessions. I've talked with her and all is set up. I felt elation, yes elation, when H asked me how it was going to work and I said, "We've talked and it's all set up, but you need to talk with sister to find out the particulars." How nice to pass the buck!

Lab results

H's viral load is now undectable...the first time in over a decade.

His T-cell count is 984, well within the normal range for a man his (our) age.

He still sleeps much of the time, tells me he feels crappy a lot, gets anxious when we run out of grocery items (like sugar), is in terrible pain from neuropathy, and has a hard time following or participating in a conversation or making a bowl of cereal.

Modern medicine has saved his life again, but for what? For this?

H's support

Over the past week or so, I've been consciously reducing the amount that I drink in prep for stopping entirely. Now, I know that I have to stop, but I'm hoping to manage down the withdrawal just a bit.

A week from tomorrow I start my evening sessions and no later than that day, I have to stop drinking.

So, I've cut down from 8+/day to 6 to 4, etc. over the past week. This has been surprisingly hard. And now I get cravings by 10am every day, earlier than my usual, "It's 3 o'clock…where's my beer?"

H has been helping me stay within my limits. We count out how many I get and whatever is extra gets hidden. And I don't start drinking until 5pm.

Now, I'm not keen on putting H in the role of policeman, but it's something he can do to help for the next week or two and he is more than willing to do so. And I both appreciate and need the support right now.

In fact, we discussed H going to AZ to visit his sister during this time. His sister suggested it in fact…wanting to be helpful and supportive.

I said, "No because I don't know that I trust myself to not drink and so I could really use your support.

H said, "I don't trust you to not drink either."

And while I've been whining here about H not being there for me, this is one area where he can be. And for that I am very grateful.

Confirmation

Got an assessment at a treatment center. "Yes, you're an alcoholic." Thought so. I'm starting outpatient treatment the week after next.

Getting some help, family stepping up. "I'm here for both of you," his sister who lives locally says. They will help with dinners while I'm gone.

"I'm sorry that my illness makes you drink, " H says.

I say, looking him square in the eye, "Thank you, but don't blame yourself. I have to take responsibility for this."

Talked with a nurse today about help with meds, which should start in the next week or so. "…you're losing him inch by inch, it's a chronic condition with a slow decline."

Single dad

Well, it's just not the care duties, but it's the whole package of having to play "single Dad" for another grown man in the house. Very little happens without me personally doing it, cooking, picking up the house, bill paying, unravelling insurance issues, etc.

That's annoying enough after 10+ years of this.

But the real issue isn't the care, the chores, or the responsibility, but that I don't get my needs met by this person. And it won't be any different unless I do something about it. H is hardly capable of making food for himself, let alone being capable of meeting my needs.

However this resolves itself or not, I do believe that, after a bit of errrrr adjustment, that I'll be able to handle this all better when I'm sober.

There I wrote it, "when I'm sober."

And I also think, with apologies to Saint Augustine, "Lord make me sober, but not yet."

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.

Gearing up to dry out

For many years now, I've been drinking quite a bit. At first, it was for fun and now, well, let's just say it's a requirement.

When H first got sick, 12 years or so ago, I started drinking more and with increasing regularity and I worked my way up to a 6 pack a day. Recently, I've blown through that mark and drink way more than I mean to, even tho' I'm trying to limit it. Sigh.

I remember talking with a therapist about my drinking. At that time, H was very, very ill. The therapist said, "Well, your drinking is understandable, but if it continues for longer than 2 or 3 years after his death, then that is a concern." That conversation was 9 years ago now.

The cold reality is that I need to stop drinking before I slip off the cliff. And the other cold reality is that I won't be able to medicate myself when I'm at home and I hate being home.

I'm sad that drinking has become what smoking was: something I used to enjoy, but now I can't control anymore and I have to stop. While I can have a cigarette from time to time, I know better than to have any in the house as I'll just smoke 'em all, quickly and without realizing it.

Now, I'm not keen on AA, and I'm already in therapy, but I'm going to my Dr. later this week to see if I can't take something to help with withdrawal. Getting Nicotine replacement was the only way I was able to stop smoking. I hope there is something comparable for drinking.

Family time

Last weekend was a big b-day bash for a family member who turned 50 (no, not me…yet!).

It was frustrating for H because his sister and her family came into town for the event and he didn't get to spend as much time with them as he would have liked.

I had a wonderful time with them all and my worries about getting grief were happily unfounded. What was even better was that we only had a moment to talk about H because there was so much going on. Nice to not have the focus on him so much.

What was most striking tho' was when I told his sister, "You know, (sister's name), I love H and I'm doing the best I can. I know how unhappy he is."

She starts getting teary-eyed. Me too.

Whatever tension was in the air due to the placement fracas last Fall vanished.

She said, "I wish I could fix his attitude. He's so angry and negative. He's pissed at you, mom & dad, me, everyone, the world."

"Me too," I said. "But who can blame him? He's not even 50 yet, but he's losing his mind, his health, everything. And mostly, (sister's endearing nick-name), he's just tired, very tired."

Thank you

I wanted to say thank you to all of you folks out there who read the blog.

It's very helpful to know that someone is out there listening.

And I'm grateful that you spend time reading my entries, doleful tho' they often are, and supporting me in your thoughts, prayers, and comments.

Why do I do this?

Twice a day, H takes his many, many meds. They make him very, very sick and so he dreads 10am and 10pm. The other morning, he was grumbling about taking his meds and exasperated.

"Why do I do this? Why do I take these?" he asks me as he looks at a small Dixie cup filled with pills. He takes two Dixie cups filled with pills twice a day.

"Because they keep you alive."

He says, "Yea, but I feel so bad so much. I should stop taking them."

"You've done that a couple of times, you know…"

"I have?" he asks, looking very puzzled.

"Yea, at least 3 times you stopped taking the meds because they made you so sick. You called it 'pill rebellion.' "

"Then, you got sick, very sick within a week or so of stopping the meds…with what you described as the worst flu you've ever had. The virus came roaring back. And you got scared - got hospitalized one time - and started taking them again."

"I did?" he asks. "I don't remember any of that."

Being the bearer

H's sister and her family are coming to town this weekend for a family birthday bash. (H's parents are not coming to town, which is AOK.) I haven't seen his sister in about 4 years…last time she came up to see H because we were told that he was going to die in 6 months. But, another anti-viral med came out and pulled him back.

But the past year or so has been strained with his family because I moved so aggressively to place him last year.

Because they're not local, they don't see how H is really doing except when he goes to visit once a year or so…like he did last Thanksgiving. And he tends to put on a good show for them, although "he does sleep a lot."

As is the case with H, whenever I raise the issue of my burnout (e.g., my experience), their response is that this means divorce and they get all discounting and accusatory on my ass. Really, what I'd like would be some support and sympathy, but they can't seem to muster it and neither can H.

So, I'm not certain what to expect when they're all in town again.

I guess that no matter how I play it, I am the bad guy. And I just need to accept that. After all, I'm the one who struggles to deal and if I can't, then they are terrified that they will have to step up.

The only way I know how to play it is to tell my truth and if they start to get surly and I feel defensive, I'll just tell them that I love H and I’m doing the best I can…and then just walk away.

My biggest challenge is to approach the time with them with an open mind (& heart!) and not have any expectations. But right now, I find that rather daunting.

Heal me

H's family has always been seekers, looking for alternative healing methods that include both the profound and the silly. Profound in terms of how we create and can change our reality and silly like a burbling mason jar of fungus has healing properties or pads that remove toxins from the bottom of your feet.

While these methods may or may not work, they pursue them with a vigor that some reserve for their most favored hobbies or passions.

Recently, H's little sister has been interested in a form of long-distance healing. She's taking some classes and others in the family are interested also.

So, H says to me last night, "They're learning this (healing technique) for me, you know."

"Yes, honey, they love you very much and want to help."

He says, "I just don't know if it could help or not…."

"Well, if it does, it would be a miracle. Not that I don't believe in miracles…just that it would take one to make you healthy again."

H says, "I really need two miracles: one to get me well and one to get a good job so I can get on with my life."

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."

Hoping for colon cancer

H has an accumulating set of issues in addition to his baseline stuff: depression, bowel distress, loss of strength and stamina, fear of just about everything, frequent nausea, more mental slowness (again), etc. etc.

Talking with him last night, he blurted out, "Well, maybe my bowel trouble is colon cancer. I hope so...maybe adding one more thing will get me out of here more quickly."

Then he laughed a bit.

I said, "Honey, you were checked for colon cancer just a bit ago and you were OK. Besides, in your case, clearly it isn't about how many health issues you have...as you say, all of your dance cards are full...and besides, you've beat the odds again and again."

"Yea, but I doubt I could beat cancer...wouldn't want to, anyway."

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....

Burden snippets

As I've mentioned before, we thankfully have a house cleaning service and on "school nights, " I sleep in the guest room so I actually can get a good night's sleep. H asked me last night to make certain that my pillows were on "our" bed before they came to clean. I didn't ask why.

Some states have Death with Dignity laws and while I have mixed feelings about it, when my time comes I hope that I have the choice to end it if the alternative is a miserable, painful death. When H and I discussed this topic very recently, he said, "You just want me to die" and "It's a good thing they couldn't do that when I was so sick awhile ago."

One of our pets died last week…we had him for 15 years. His kidneys failed and we had to put him down. As I was driving us home, H turns to me crying and said, "Why do we treat animals better than humans? Why can't I just go to sleep?" All I could do was choke back the tears so I could see the road and gently squeeze his hand. I thought, "Yes, honey, I know how tired you are. Me too."

H takes >20 different meds each day…a total of at least 50 pills a day, plus a number of liquids. I've encouraged him to take care of the ordering and setting up because I think it's good mental exercise for him. I audit to make certain it's OK. But he can't figure it out anymore…he panics more often than not... and so I've tried to do it…even with a clear mind, it is too much for me. Time to bring in skilled nursing, which is sad and a relief to us both.

People in the house

We have people coming into our house on a somewhat regular basis...we have a cleaning service that comes in every two weeks (thankfully) and there are usually a few repairfolk coming and going on a somewhat regular basis.

Recently, we got a call about some permit issue related to some improvements that we made last Winter. Seems that the city didn't have a record that the inspections happended, yet we remember they did but can't find the paperwork.

So, the inspector has to come back.

These is the same inspector who H tells me wanted to use our bathroom as soon as he came into the house. Seems they were looking for a certain substance that, while approved for medical use in our state (and H needs and uses it with an Rx), is illegal in this country.

Maybe he just had to pee. I suggested this to H, but "that's just his excuse to go into the back of the house."

So, now H is afraid that they are coming back to the house again, not because the paperwork got lost, but because they are out to bust him and so they're going to be here collecting evidence.

Recently, the house cleaning crew has become suspect. "They keep having new people come over...they're just checking out the house. They're collecting evidence." And so, before they come over, we must scour the house of all visible trace.

I'm very sorry that H lives with so much fear and worry. (I have fears and worries too, but mostly about growing old and that it will get much worse with H over time.)

On one hand, I won't tell him that he's crazy (although I think he is by now) and on the other, I can't tell him that he is right. All I can say is, "Honey, it will be OK. I'll help you put things away."

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.