2017.12.26

Co-worker: How was your Christmas?

Me: Fine! And yours?

Co-worker: Great! Our family came in from out of town and we went to Moody Gardens or The Galleria or maybe we traveled to see family all over the country. What did you do?

Me: Oh. The same. Family mumble mumble - sucks being back at work, right! Ha ha.

The truth is; being back at work is a lifesaver. Because what I actually did for Christmas was sit around all day listening to MW cry about how nobody likes us (her). 

Literally. All Day. Non-stop. Except for those few hours agonizing over the fungal infection on her foot. Man. God Bless Athlete's Foot! It provides a well-needed break from the everlasting litany.

All the stores are closed - there is no place to go. Trapped. Nothing to do but let dementia fill our home and hearth with a flurry of hateful words and recriminations. It is beyond sad. 

Context: MW tells her friends she spends the holidays with my family. She tells my family she spends time with her family. Therefore, nobody invites us to any celebrations. At one point, I actually risked telling MW her negligent friends were not so evil; after all, they all thought she was with my family.

That didn't go over very well, and I should know better. Stupid, stupid, stupid.

Of course, my family does know the truth. And I could probably wrangle an invitation from them if I secretly asked; but it is far easier dealing with the disappointment of having no company on Christmas than the fall-out of somebody accidentally saying or doing something to upset MW. At this stage, it is all but a certainty that will happen. 

So MW spends Christ's birthday viciously attacking all our relatives and close friends for being insensitive.

I try very hard to agree with her, while somehow calming the situation, and at the same time avoid getting terrorized myself. It is the highest of tightropes, it goes on forever, and walking it wears me out. I'm so glad to be back at work! 

Even if it is temporary - fucking New Years Day. 

Although, with luck, I can get MW out of the house on January 1st as the stores will be open. She'll still have the foot-funk, too, so maybe that'll work in my favor. 

Goddamn these holidays.

***

Here's something I've noticed: MW's HD movements appear to be more pronounced early in the morning and late at night. That's when her speech is worse as well. Why? I've read where stressful situation bring about the worse in HD victims - but I've not come across anything stating that the time of day would or should have an ill effect.

Odd.

I suppose the nighttime up-tick could be explained by stress. Sleep is such a difficult thing. And there's always so many items that need to be dealt with before getting in bed. But why is she so unwieldy come morning? She doesn't have to do anything but get up, dressed, and drive with me to the bus stop. Nevertheless, she can barely put a sentence together and watching her put clothes on is like watching the Weather Channel's tornado highlights.

2017.12.22

I've been making an ass of myself lately. Oh, lots of reasons. Drinking. Holidays. Uptick in MW's dementia. Just an overall sense of drowning in hopelessness and defeat.

So, desperate, I reached out on social media and became an ass.

There's nothing for me on facebook. It's a mockery of human contact; which hurts bad, because my real life is so lonely and isolated. Posting on facebook was too sad to handle, so I deleted my account - unfortunately I'd already embarrassed myself by telling my story and asking for help. Like a pathetic asshole.

Then I got drunk and wrote some blog entries. Those were a lot of fun. Deleted now, of course, and nobody reads this anyway, so no damage done. Except to my own pride. I'm better than that; a better writer than that. Eh, maybe I used to be. 

Anyway, it's past time to sober up (some) and get right. Five years so far and MW still doesn't think/know/believe she has HD. She doesn't (can't) work anymore and rarely leaves the house. We have no family connections - except my brother, who politely stays away - and only a handful of friends who also, not so politely, stay away. It is a meager existence, and the fucking holidays don't help any. All this to say, we won't make it through the new year. We can't last another 365. 2018 will be the year something terrible happens with MW and she'll wind up in a hospital, a grave, or treatment.

Or not. Clearly I'm very bad at dealing with this. So I may very well be pissing in the same stream come 2019. Unless I myself am in the hospital, a grave, or prison.

***

Full disclosure - when I started this entry, I wasn't drunk. I am now. It's the day before Christmas break and the office is closing early. Most everybody is gone and I'm drinking at my desk.

And trying hard not to embarrass myself.

In that spirit, let me document what's been going on with MW as concisely as possible behind a $4 bottle of Moscato. Jesus.

A little over a month ago, MW contracted some weird fungal infection on her foot. To guess, I'd say it's because she never wears socks when shopping for shoes. Whatever the case, she has a creeping black funk all over her toes. 

We bought a tube of Lotramin. It sat on the counter for three weeks. The fungus spread. 

MW would not use it because it is "medicine". Everybody knows taking medicine is always more dangerous than having the disease. Why, just look at prescription pharmaceuticals. So much better off not taking drugs and just, I don't know, killing yourself.

Sigh.

Eventually, however, she had to start using the cream. This only after she talked to everybody she knows and they all wondered why the hell she hadn't just started treating it in the first place.

They think she's crazy. 

Heh. 

Anyway, now MW is going through three pairs of socks a day. A sock can only be worn once, then thrown away. You can't wash it, you fool, because Lotramin is poison. Pure poison. If you put it in the wash, it'll infect all your clothes with poison.

I'm not exaggerating when I say, by the time this is over, we'll have spent hundreds of dollars on socks.

There is an upside to this condition. MW has become so obsessed with her feet, she doesn't have time for anything else. Which is not great. She still stays up all night, worried, constantly asking me to look at her feet, agonizing over every new blemish; but at least this is a real thing. It's actually there. She's not just blurting "Cancer!" over and over again while imagining some ache somewhere.

Still dementia, but easier to deal with. Sort of.

***

IONIS. 

I have to be careful now; this is the stuff that sets me off - especially when in my cups. 

IONIS is starting trials for a drug designed to "slow down" the progression of Huntington's Disease. 

Seems like something good to be a part of, no?

I'm low. I'm not much of a person. I lie to my wife daily. I hide everything from here. I'm a closet alcoholic. Oh, and the end result of all this cowardice and subterfuge is that I -and I alone - get to watch MW descend into madness and death. 

Because I have no choice; or rather, the only choice I have is to speed that grave-digging plow and put her in a hole early. 

Saint or monster. Toss a coin.

Now a wrinkle: this IONIS drug is a hopeful thing; but not a cure. Should it change my decision to confront MW with the truth? 

Monster says no; Saint says....? Saint says...? 

I have no fucking idea what Saint says.

I'm kind of afraid Saint's dead and Monster is all I have left.

2017.11.21

I'm living in a horror movie.

Specifically, Invasion of the Body Snatchers - the '70s version.

I made MW mad this weekend and she screamed at me. No words, no gestures; just screaming. Just opened her mouth and - AAAAAAHHHH! - screaming. Like the body snatchers. Eyes popped, mouth a perfect circle - AAAAHHHH!

The only thing missing was the accusatory finger. That and a mustache and she could've been Donald Sutherland.

What brought it on? I gave the dog a piece of cucumber. Apparently, we're not supposed to give the dog ANY human food. Thus the rage-scream.

After it was over, MW stood just as confused and bewildered as I. Did she really act like that? She couldn't reconcile the reaction to the deed and started trying to correct it. So now we have a Scream Calendar tacked to the wall. For every day she doesn't scream, she gets a check mark on that square. Actually, two checks. One in the morning; one at night.

Yes. A Scream Calendar. Tacked to the wall. Tell me I'm not in a horror movie.

***

Worse than that, MW's leg has been "buckling" a lot. I tell her it's normal and happens to everybody, but she's not buying it. At one point she actually put hands-on-hips, rolled her eyes, and accused me of treating her like she was stupid.

"Are you kidding," she insisted. "It has to be Huntington's, right?"

Back to the wall; where do you fall?

I took a moment, centered myself, and countered. "Why are you even asking when you don't really want to know?"

Talk about thin ice!

But - ha! - it worked. She considered for a moment and then, basically, agreed. "I want to work for at least another 20 years," she said.

Because that's what she thinks she has left. Twenty years. She's sure she'll be in her late 60s, maybe even 70s before it "hits".

Christ. See? All that's missing is a John Carpenter soundtrack.

2017.11.09

MW had me take a day off work so I could accompany her to a job fair for moral support. It was a three hour event in a hotel's large conference room. I walked her to the where the meeting was scheduled to take place then she quickly turned me around and shuffled me back to a chair in the corner of the lobby. She didn't want anybody to see she was there with a white guy. They'd never hire her.

You know how this ends.

In fifteen minutes, MW was done. She complained that nobody really wanted to talk with her and she only handed out one resume.

"They must have seen me with you," she complained and shot me a nasty look.

***

She didn't get the part time bank job either. Again, it was a racial thing. Nobody likes Indians. Or white guys. We're lucky we haven't been shot dead on the street yet. Yet.

***

After the failed interview and the job fair disaster, MW decided she needed to brush up on her interviewing skills and effect a more professional appearance. Jackets, now. She'll wear jackets. And earrings. Immediately after the hotel, we drove to a jewelry store and spent $1500 on a pair of "professional" earrings for next time.

Then she rushed home, hopped on the computer, and started watching youtube clips of interviewing strategies.

In the end, however, she concluded that the best path will be to disguise herself as a black woman - easy to do with her hair and skin color. All she needs is to practice the talk.

And that was interesting - listening to MW try to sound "black".

Gently, gently I nudged her away from this strategy. Or maybe I give myself too much credit, as I think she soon realized she couldn't pull it off. Anyway, we're back at square one. MW is confused and angry at her inability to pass an interview. She demands I tell her why and gets furious when I offer up lame excuses like; "you're just over-qualified" or, my favorite, "they probably already knew who they want to hire, but they have to post the job for legal reasons." That actually worked very well in the beginning, but now she's suspicious. It can't be true for every job!

***

An issue brought up by my lawyer friend was the possibility of MW being taken advantage of - financially - because of her dementia. I brushed it off - MW goes the other way; absolute and total mistrust of everybody. Even me. I can't take a dollar's worth of quarters from the lose change drawer without giving an account. However, I've noticed she's been buying a lot of crap from HSN. So far not a problem; its just more junk cluttering up my office.

I haven't had the bandwidth to worry about money. We're dying; I'm not going to nickle and dime it. This process is completely draining anyway. A million dollars; one dollar, what difference would it make? The end is going to be the same.

No, I've decided I'm not going to worry about the bank account.

2017.11.03

Yesterday I talked to a lawyer where I worked about getting power of attorney over MW because she has HD. Sounds simple, but the wrinkle being: she doesn't know she has HD and isn't receptive to the idea of being tested.

"So would she willingly sign a POA?" he asked.

I dunno. Probably. Maybe. I dunno.

"Then you would have to lawyer up and go to court."

Jesus.

He went on to explain that I should immediately write a will and maybe even establish a trust. He's right, of course, but.... If I die first, what chance does MW have, really? Even with money?

None. Best case scenario being, when the time comes, her useless tits of a family would actual take the trouble to visit the nursing home before dumping her off - never to be seen again. Knowing them, however, I doubt it. They'd just find the cheapest rate and Uber her over there. Hope the nurses don't wail on her too much.

Nope. I'm gone; she's done. Even if I do set up a trust, who would I get to oversee the account? MW hates my family. I suppose she wouldn't have a choice if I did put one of them in charge, but I can't imagine her accepting any of their care decisions.

Bleak stuff. Then again, if I'm dead, my problems are over, aren't they?

An indulgent, selfish thought, I know. But hey. I've earned it.

***

I don't want to understate the preceding event. Talking to the lawyer was huge. An irreversible act of admission. We work together. He could go tell HR and they could fire me for having a sick wife. Yeah, yeah, nobody's supposed to do that kind of shit anymore, but I'm old enough to know better.

They could. Of course they could. Hell, they probably should.

Anyway, not just that, but it was also an act of betrayal. If MW were to find out that I talked to someone about her condition? The end. She would either kill me or drive me out of the house. Already in the past week she'd flown into a rage threatened to divorce because A) I wore the wrong jacket; B) I picked up some trash off the floor (I wasn't supposed to touch it); C) I didn't read one of her emails that she'd been waiting for (I hadn't known anything about it).

God, if she knew I was conspiring behind her back? Ho shit.

Naturally, I felt guilty and sick about it all day.

Then I got home and, after about an hour or so, MW sheepishly approached me and said she had something bad to tell me.

She'd accidentally hit a car that morning. No one was hurt; not really any damage either. But our insurance might have to be notified.

Second time in as many months that she's played bumper cars with our Toyota.

And I didn't feel so bad after that. Not a clear justification; but good enough under the circumstances.

Now I just have to decide how many more of these little accident's to allow before I do something about it.

***

Some more new-ish symptoms: MW has started getting angry when reading emails and websites. She'll demand I read back and explain sentences and paragraphs to her; then yell at me when she doesn't understand the words. "That doesn't make any sense!"

So I'll read it again, patiently, and try to explain gently what it means.

Once she exploded; "It's like I don't understand English anymore!" and stormed out of the room.

Heartbreaking. And there's not much heart left around here.

2017.10.26

MW can't get a job. She fails every interview. She's been "black listed" by at least one employment agency. Another has told MW that they won't be able to find her work if she acts as "nervous" as she did during their meet and greet.

"What's wrong with me?" she asks.

And I have no words.

She's pinned all her hopes on an interview next week for a part time phone job. She's qualified, it is only three hours a day, and very close to home. The perfect situation.

So when the rejection comes this time, it is really going to hurt. I fear it will instigate another bout of deep depression. And, dammit, MW has been doing fairly well these days. She wakes up happy enough, anyway. Still runs around and laughs with the dog. Sure, little things set her off, but it doesn't stick. Last night, for example, she dropped an egg and flew into a rage. She found some excuse to terrorize me, yelling and screaming about a bathroom door I'd left open, but I figured it was a reaction to her own self-doubt. And, after only a few minutes, she apologized and the evening wasn't ruined.

Not bad.

However, when she doesn't get this job, I foresee her attitude plummeting hard and fast. It'll be a return of the dark days. The sleeping-in-the-closet/never-leaving-the-house days.

And at this point, I doubt we'd ever get another chance at normalcy.

***

Or, they might actually hire her. Wouldn't that be something? A postponement of the inevitable - and what's worse: never getting the job or being fired almost immediately? - but that would really boost her spirits. For awhile.

***

Last Sunday I was airing up the car's tires when suddenly a sharp spike of pain tore through my head, literally striking me blind. Tunnel vision. It was all I could do to stand up and fight back the nausea and wait for the motes to clear from my eyes. I've had migraines before, but this was unlike anything I'd experienced. It came on so quick and without warning.

Somehow I was able to hide the condition from MW and, even more impressive, drive home. Then I gobbled some Advil and got in the shower until I felt half-way human.

It is Friday now and my head has not stopped hurting. The pain isn't as intense (of course, or I'd be dead), it has settled into a dull throb, but it is constant. I'm eating Advil like M&Ms. I've been waking up at four every morning with a splitting headache. Sleep is impossible.

I've no idea why. A couple of thoughts - I was squatting when it happened, so maybe my hernia got pinched? Also, I had stopped drinking; so maybe withdrawal?

Or, could it be, just nerves?

***

In mentally playing out end-game scenarios to this waking nightmare - none of which are tolerable - I've recently become aware of something I've overlooked. A few times in the past, when confronted with something she couldn't handle, MW just broke away entirely. She stopped talking about the problem, changed the subject, and wouldn't allow it to come up again. She just talked louder, shouting over the person who was trying to discuss the issue.

This never happened with anything Huntington's related, but other family dramas got the shut-out treatment. If she didn't want to hear it; she wouldn't hear it, and that was the end.

What if that's how it ultimately plays out with HD? When it gets to the point where I simply can't allow her to drive or be unsupervised - and she blocks it out. Refuses to deal.

Then what will I do?

***

I went walking around during my lunch hour and found myself outside a Catholic Church where I experienced an odd urge to go inside. This blossomed into a desire to sit through Mass. Impossible during the weekends, but what if they had some sort of weekday, noon service for the working stiff? As I approached to see their posted hours, I noticed a crowd of people milling about the doors. Well dressed, attractive, happy people. They were getting into nice cars and talking and laughing with each other.

I left. I'll not return.

2017.10.11

New nightly ritual for the Monster: lay his head down and say a quick prayer - "Lord God. Don't let the morning come."

I've been corrupted beyond repair by the constant deceit. I loath what I've become. If there is speck of saintly light left in my behavior, it is too dim to even cast a shadow. 

I'm all monster. But I know no other way.

Last night MW woke me up around one in the morning to ask why it is people sometimes can't pronounce words. "Is it HD?" she asks.

"Of course not. I always mispronounce things."

Side note: I used to deliberately skip or mispronounce words around MW just to maintain the lie; but now that I've started drinking again, this is no longer necessary.

Yeah, so what? This is the kind of small, shitty lie I've been selling for years now. Not monstrous, no, because MW has clearly stated she'd rather not know if she has the disease. This lie is 100% saint!

Well, maybe not. Because it comes on the heels of this:

MW had been obsessing over the Vegas shootings. Every day, non-stop "why do you think he did it?" If you don't live in an HD house, you can't possibly understand, but when an HD victim latches onto something like this, it endlessly spirals until it becomes madness. 

However, I figured out a way to stop it. I know MW. She doesn't like scary stuff - won't even let me watch horror movies. So when she started going on again about why that Vegas guy shot up all those people, I replied. 

"Without any information, nobody can say. For all we know, it might be demonic possession."

"Don't say that," she whined, but it shut her down. She hasn't talked about Vegas since.

See? 100% monster.

***

And, of course, there's the falling, kitchen mishaps, and household hazards. What am I doing? Waiting for MW to get really, really hurt before I stop this? What the hell am I doing?

***

And yet, what if I'd told the truth last night - or any of the other endless nights? Told MW she shows symptoms of Huntington's? 

Again, I know MW. It would have ended her. Quite simply ended her.  

That's a lot of power; to end someone's life. And, fucking hell, a lot of responsibility too.

God I wish I was a better person. I wish I could figure this out.

I wish morning hadn't come today.

2017.09.29

It looks like MW's friends - what few she has - are learning to ignore her. They won't answer her calls or respond, timely, to her texts.

Mixed emotions about this: one hand, it makes MW frustrated and sad; the other - I don't have to worry about any of them tossing grenades. "Gee, MW, you're acting funny today. Maybe you got that disease like what your mum had? Oh! Look at the time. Gottagoluvubye!"

This is not an irrational concern. Just last year, in fact, one of MW's aunties -out of the blue and for no reason - made an ignorant comment about the disease; "haven't they found a cure yet?" she'd asked.

Makes you want to slap someone. 

Fortunately, MW didn't pick up on it, or if she did, it didn't resonate. So there was no catastrophic fall-out from that particular conversation.

But it was terrifyingly close. And things are only getting worse with MW obsessing over health concerns. For example, last night MW flew into a panic because she had a bloody nose.

Actually, it wasn't a "bloody" nose. Just that when she picked it, the tissue came back with pinkish tinted spots. To prove this was a significant event, she spent about an hour picking her nose then shoving the tissue in my face, demanding I look at it.

I tried to calm her down. Told her to stop picking at it and it'll stop. Explained how the membrane in the nostrils worked. At one point, I aggressively blew my own nose and showed her the results - which included some pinkish tint - but it wasn't enough.

So she decided to call her friends and ask for their advice about the "bloody" nose. Again, I tried to talk her out of this because these are exactly the types of conversations that drive people away, also, I knew she would make the symptoms sound a lot worse than they were (my nose won't stop bleeding!) but she was intractable. She needed to talk to someone.

But none of them answered their phones. I assume this is because it was close to ten at night and MW generally calls at odd hours to discuss bizarre health issues. 

Good, I guess. No grenades anyway. 

2017.09.22

Two days ago MW fell down the stairs. Yesterday she burned her hand on the toaster oven.

Whatever. Monsters says The Big Lie must be maintained!

Neither incident was too bad. Again, the fall was more a controlled tumble. MW was two steps from the floor, her foot slipped, and she collapsed backwards. She held the rail for the most part and wound up harmlessly on her butt. Nothing broken, twisted, or even bruised but pride. And psyche.

And she accidentally closed the oven door by touching glass instead of handle. Scorched fingertips, that's all. She did, however, call me at the office after it happened; crying so bad I could barely understand her.

Nerve-wracking.

But Wayne, you exclaim, surely you can't continue to lie about her condition! Why, MW herself must suspect the truth! She can't work, can barely function around the house, and now she's routinely having accidents which are just shy of disaster. She needs help and by denying her that help, you're going to cause serious injury or worse.

Yeah. Well. Monster says fuck you.

And if you're wondering how I am even able to maintain the lie after these two catastrophic events; once again I credit reverse gas-lighting and my well-honed ability to work within MW's dementia parameters.

When I got home from work yesterday and MW was still talking about the toaster-oven, I admit I was very close to defeat. I'd drunk some vodka to prepare for the evening and was feeling down and fuzzy. Then MW actually said, on her own without any prompting, "My mother never burned herself. And she was in the kitchen all the time."

And I smiled. Of course not. Your mother never fell either.

Therefore, you don't have Huntington's Disease.

Beautiful.

****

Work is another issue. They want me to travel to New York for training. I told my boss, in the vaguest terms, that I can't travel because I'm a care-giver. He didn't push for details and said it wasn't a problem, but then he called back and asked if I could make a session in Dallas. I told him I'd let him know, but haven't had the courage to ask MW if she'd allow the day-trip yet.

Thinking on it, I'm not even going to bother. I know the answer. So, once again, I'll have to tell my boss that I can't perform the duties of my job.

Not sure how long I can keep that going.

2017.09.19

Another autumn anecdote:

Curtains. Draperies. This is MW's current obsession. Window coverings all over the house. 

Easier said than done. To date, we've spent hundreds, if not thousands of dollars on panels that just aren't right. We've piles of them shoved in closets and covering chairs. None the right color, style, vibe, etc.

I'm resigned to the fact that we will never actually have conformed curtains - and I'm good with that - but MW is very frustrated by the current lack of drapes in Casa Muncie. Generally, this annoyance manifests itself by MW criticizing me for my overall uselessness. There was a point last weekend, however, when she related a story that struck me as odd. 

MW was discussing how much we should spend on curtains; with me agreeing to anything, and she recalled that her mother bought very expensive drapes for their house. Probably around five thousand dollars, MW estimated.

She went on to describe how thick and beautiful they were - worth every penny.

Then she said, "Those curtains were the last major decision my mother made before getting sick."

Spooky? I think so. A little bit.

Because when you look around our house and all the things that need to be changed, window coverings aren't in the top ten.We already have shades and panels that are at lease functional. And I've often wondered why MW is so fixated on buying curtains right now. 

Also, why mention it? 

I guess I shouldn't read into it too much; but, coupled with her recent statement that mommy fell hard and fast after being diagnosed, with this odd coincidence, it makes me wonder. 

Just a weird coincidence or a manifestation of self-awareness?

2017.09.18

Now that I've gotten that flight of fancy out of my system, let's return to harsh reality, shall we?

This just happened:

MW called me to discuss various job opportunities she's considering and started complaining about one opportunity that was too far away with poor hours. "It's not worth the aggravation," she said.

Or, tried to say. She kept getting stuck on the word, "aggravation". 

The more she tried to say it right, the worse it got. Finally, frustrated beyond reason, she demanded; "How do you say 'aggravation'?"

Oddly, she said it exactly right. Then, immediately went back to trying to place it in the phrase, "...not worth the..." and messed it up every time.

Back and forth like this - asking me how to say it (when she herself is saying it correctly); then fucking it up in that particular phrase. 

Eventually she asks, "why can't I say that word? What's wrong with me?"

Oh. Jesus.

"Everybody has trouble saying words sometimes," I answer.

"You don't!" she snaps.

(Note to self: deliberately fuck up some words now and again.)

And then, displaying amazing memory, she went on to recall other words she hadn't been able to pronounce recently. 

I tried again to placate her with the "everybody does it" response, but that just mad her more frustrated. So she hung up, angry.

***

MW's speech has become noticeably slurred and increasingly difficult to understand. Words are misplaced, misused, and often skipped entirely. 

On Sunday, I could do nothing right. MW shouted at me and stormed around the house, slamming doors and throwing things. Then, after an outburst where her curse words were ineffectively stammered, she paused and admitted the reason she was so angry is because she's noticed how difficult it is for her to talk.

Is it Huntington's? she asked.

Of course not. Over and over again. Of course not.

Oddly, at one point, while motioning towards an item she wanted moved, her finger poked me right in the eye. Fortunately I was wearing glasses, but the force was enough to knock them from my face. 

This she laughed about.

I always assumed if any self-awareness were to come about, it would be from uncontrollable movements. It seems, however, drunken speech might be the symptom that forces the issue.

***

This, I'm sure, is why she can't pass any of the job interviews she's been to since quitting. Friday, in fact, she had an employment company tell her they wouldn't work with her because she's "unprofessional". The events leading up-to that exchange were obsessed over for all of Friday night and most of Saturday. MW told me the story (something about them having inadvertently set up two interviews with the same company, then cancelling one to save time. MW did not want them to cancel the second, redundant interview. She wanted to go to both), then asked me what she'd done wrong. Naturally I told her she'd done nothing wrong. They were wrong. They're the one's who are unprofessional. She's better off not using them.

Alas, as more of the complete story was related and told in a less dramatic fashion, it became clear that MW totally confused the situation and acted irrationally. 

MW seemed to recognize this and kept asking me what she could've done better to avoid the confusion.

Ah, but I'm a pro at this. I'm far too slippery to be caught in that clumsy trap. I gave enough ground to satisfy MW by saying the situation itself was confused. My argument being they should have used the word "reschedule" instead of "cancel" when consolidating the appointments. You never want to hear your employment interview will be "cancelled". They needed to communicate that better. 

So, if anything could have been done differently on MW's side, she might have asked for an email confirming the cancellation and consolidation of both interviews. 

Neat, right? Nothing wrong here. Just honest mistakes all around. God, I've become so fucking good at this constant lying, I should run for politics.

***

As I've mentioned, I'm drinking again. So is it helping? Hells Yes! First, I can match MW's slurred, sloppy speech which reinforces my argument that "everybody does it". 

Second, it's made midnight manageable. Typically, MW will stay up watching TV until 11 or so, then complain about being tired and needing to sleep. Unfortunately, before she can sleep, she needs to confirm that everything is "right" - nothing that can be tripped over, bumped into, set on fire, etc. This takes an hour or so. Also, while doing this, she'll think of a dozen other things that need to be addressed in the morning. Each one of these action items must then be written on paper and taped to the wall; or, inside the car.

Sober, this hour/hour and a half of late-night furniture moving/wall-papering is intolerable. Drunk, it's kind of fun. Last night MW and I shared a laugh when, while shuffling the "to do" notes, we had a moment of play while passing the papers back and forth. Good times when tipsy!

2017.09.14

As we travel deeper into the dark depths of the HD swamp, I'm frequently pulled towards the pointless and ultimately crippling practice of nostalgic thinking. Fall, Halloween in particular, has a way of casting me back to a time when I could enjoy and participate in life. Crisp air; blue skies. Colorful landscapes and festivals with costumes and laughter. Cider and candy. Tricks and treats.

Unbearable to remember now, knowing what's to come.

However, there has been a sequence of odd experiences I've had with MW during this journey which Autumn thoughts have stirred up and brought to the forefront.

The impetus is a seasonal book called Halloween Dreams wherein a handful of horror writers relate their favorite holiday memory - usually some scary or unexplained childhood event which forever twisted their minds towards the macabre.

And I, sadly, realize that I've never been touched by the supernatural. Or have I?

So much for the preamble. Here's the point:

Since MW started showing symptoms of HD, going on four years now, there have been a handful of occurrences where she's exhibited uncanny awareness.

The first time was actually quite terrifying. It happened back when I was drinking a lot of vodka, which I had to hide from MW because she doesn't allow alcohol in the house. Again, this is something that anybody who doesn't live in an HD house would understand or believe, but it wasn't really difficult to be a full-on alcoholic without the person living under the same roof even knowing.

I would pour vodka in empty seltzer bottles and store them in the freezer. When it came time to drink, I'd mix the frozen vodka with regular seltzer in another empty bottle and bobs-yer-uncle. MW sees me drinking seltzer with no idea that I'm floating down river V.

Then, once when she was complaining about me being alive, she made the comment; "and why do you have all these stupid empty water bottles all over the place? Are you pouring booze in them?"

I froze like a deer in the headlights. Where the hell did that come from?

Anyway, she immediately moved on to other complaints and nothing came of it but still.... Such an odd thing to say.

Again, anybody who doesn't live in an HD house would dismiss this out-of-hand because they would assume she really knew and was playing games or something; but no. MW had no idea I was drinking. She believes I agree with her low opinion of drinkers. Also, she is incapable of deceit. There would be no reason for her to suspect I was drinking; and if she did, she wouldn't bandy about. She would attack full force.

Yet, somehow, she had the thought that I was sneaking booze in empty seltzer bottles. It didn't stick and she immediately moved on - but where did that unlikely - impossible, really - idea come from? Spooky.

That would have been about two years ago. The other times were less significant in that they were purely "mind-reading" events which didn't have a physical (water bottle) component.

Next example: My grandfather committed suicide and, no surprise, there are times when I dwell upon it - was he a coward or a hero? Once, while pondering this question, for no reason MW started talking about him; asking questions. Seeking details. Note that he died when I was quit young and MW never met the man. Also, as a family, we don't talk about him much. Not many good memories there.

So why would MW start talking about him then? When he was on my mind?

Anyway, as per our usual course of conversation, I feigned no knowledge, made vague comments, and hemmed and hawed a lot. And, as usual, MW plowed ahead anyway - her point was that she respected people who only killed themselves but didn't commit murder; not like all those who take psychiatric drugs and go on shooting rampages (the point, of course, is that psychiatric drugs inevitably cause shooting rampages. Which is why she'll never take them. Yay.). Then, unbidden and for no reason, she made the comment; "if you ever want to kill yourself, you can leave."

Wha...? Where the fuck did that come from? How could she possibly... make that connection?

The other two examples happened fairly recently. A month or so ago, in one of these journal entries, I made the observation that, if there were suddenly a miracle cure for Huntington's, it would be too late for us anyway because MW wouldn't like the person I've become. Shortly after writing that down, my wife actually told me, "....I don't think I'd fall in love with you if we met today. You've become a bitter old man."

Weird for her to say. Not because of its hurtful and insulting nature - compared to other things she calls me, it's practically a valentine - but why then? When that's exactly what I'd been thinking?

And, finally, just yesterday, MW started talking about how her mother, after having been diagnosed with Huntington's, succumbed very fast to the ravages of the disease. This is relevant because lately I've been seeking information about how long "1st stage" lasts - we can't continue like this and I'm worried about leaving MW home alone when I go to work.

But these are my thoughts. MW had never talked about how fast the disease overtook her mother before. Why bring it up now, when I'm considering the exact same thing?

Okay, not exactly Stephen King territory, but still....

2017.09.11

I started drinking again. Last night I polished off a four pack of that faux-Champagne shit. To borrow from Was Not Was "she made Champagne out of Sprite and cheap wine, like a chemist". Two sips in and I already felt the headache building behind my eyes. No worries. Pop some Advil, chase it down with the fizzy, and keep going.

Four cans of gutter wine and six tabs of ibuprofen later and here I am - not feeling too bad either in body or spirit. My liver might be whining, but fuck 'im. The brain, man. The brain is more important. And my poor brain needed a break.

What brought this on, after a full year of sobriety? Well, first, check the facts: to be clear, I did not get drunk. Not off those glorified wine-coolers. That's why I bought them - I wanted to ease back into it. Yes, I have a bottle of V hidden behind my desk - it's been there since last year - but I'm saving that until I prove to myself I can handle it. The next thing to try is some real, honest to God wine. Only then will I crack the paper on the hard stuff.

Anyway, what brought this on?

Blame Hurricane Harvey, that bastard. Blew me right off the wagon.

MW quit her job on the Friday Harvey came knocking. My office then closed for an entire week during the floods. For ten days we were basically housebound together.

Ten days; nowhere to go, nothing to do but allow MW's HD dementia to fill the house like flood water.

Since this is for the record, I don't want to overstate things. MW did spend a lot of that time glued to the TV watching the drama. She became obsessed with the story of a lady who died in the elevator of a hotel. Anyway, that focused much of her energy. Also, on the third day, we were able to get out and drive around some and go walking. So it wasn't like we were snowbound 24/7 without comfort. Nevertheless, after the news coverage died down and things returned to normal and I was able to return to work; without a job, MW had nothing to do but stay home and go mad.

The primary target of MWs anger was the ex-supervisor who had taken away her part-time hours. He is just as bad Hitler. And, because he also happens to be gay, she no longer likes homosexuals - even refusing to do business at a store where the proprietor was obviously homosexual. "I don't like gays right now," she explained to me later as we were driving away.

It was - and continues to be - a relentless and classic persecution complex. Everybody there yelled at her all the time, they hated her and wanted her gone. They are all evil. Evil as Hitler.

And as irrational and unpleasant as these tirades are, I encourage them because the alternative is usually white-hot rage directed towards me. Terrifying, bare-toothed fury followed by an insistence that we sit together because she's lonely.

This behavior builds and builds and then two nights ago MW storms into the front room where I sleep on a mattress on the floor at one in the morning and yells at me because the nightlight in the hallway isn't lit.

And that's when I knew I had to start drinking again.

Oh sure, I've been scolded worse for less, but by then I'd reached my saturation point. Indeed, the nightlight hadn't been turned on, but the other nightlight in the bathroom was. As was the one in the living room, etc.. So, as MW is accusing me of trying to harm her by making her walk around in the dark (even though, as she's standing in the hall to make her point, there is abundant light coming from the bathroom/living room/entryway/etc.), I nod my head, apologize profusely over and over again, and resign myself to drink.

I have to. I can't do it anymore; at least, not sober.

2017.08.21

MW fell twice over the weekend: once when going down the stairs; then again when putting on underwear. And that adds up to a shit load of cowardly lying on my part. Fortunately the ol' "your mom never fell" riff still has legs. If falling were a symptom of HD, her mom would have fallen all the time. Since her mom never did fall, it can't be a symptom, right?

Abso-fucking-lutely correct.

Even better, it dawned on MW that her mother always sat down to put on pants. Perfect! Don't step into them; slide them on, and you'll never fall again.

Solid.

Also, she didn't hurt herself any. The falls weren't drastic; more like controlled tumbles, so that's good.

Nevertheless, these two events caused us to rearrange the entire house again. No more going upstairs, beds and televisions moved accordingly, and chairs and sofas are now strategically places wherever she may need to put on pants. 

Exhausting work with very little sleep all on top of an aching hernia.

Eh. Could be worse.

***

Like when MW will be forced to quit. Her full time hours start this week but she's using PTO to effect part time employment. Once that's played out, she's housebound. Without a job, she'll have no purpose. Nothing to do, nowhere to go. She will, I'm sure, be overwhelmed by depression. And that will go hand and hand with anger and sleeplessness. 

Bad days coming. I wish I was better equipped to deal.  

***

My margin of error has dipped below zero. I'm in the negative zone. Even if I do everything right, on time, and with a smile, I'm still going to get cussed out. Stand and take it, of course, but lately that seems to make things worse. And MW's growing favorite response is to command, "just divorce me!" 

I gently push back; calming explaining that I'm not upset, I haven't been upset, I'm very sorry for whatever it is I did (or didn't do), but if she wants the divorce...?

Usually it ends there and we'll move on to other ways I've failed or reasons why I'm a total dumb-ass, but it makes me wonder; how much sense of self-preservation does MW still have? At some level, she must know she needs me; yet everything I do infuriates her and she never lets the words "I hate you!" go unsaid.

The concern is, would she/could she really divorce me? It raises many complicated issues. She hasn't been tested so nobody knows for sure she has HD. There is no paper saying she is not "of sound mind". If she wanted to, she absolutely could....

And I'd be a free man. How about that?

But talk about complicated! She's my wife and I'm honor-bound to take care of her "in sickness", but the only way to fight a divorce would be to proclaim her condition. I've spent the last four years of my goddamned life avoiding just that. I've isolated us from everybody - missing seeing my father on his deathbed; missed his funeral - did all this to keep her from that reality.

So. Would I fight the divorce if it meant exposing MW to the truth?

2017.07.25

I'd been floating along in a tolerably smooth slipstream for so long, this recent patch of turbulence has me unsettled and sour. We're back to the terrible sleeping issues. MW cannot stay in rooms where she's seen a tree roach; nor can she sleep on beds that are too high (risk of falling off). However, if the bed isn't high enough off the ground, well, the tree roaches can get at her.

So there isn't a bed in the house upon which she's comfortable. And for the past few nights, in vain efforts to accommodate her dementia, we've spent hours hauling blankets, pillow, cushions, setting lights; removing lights, hanging shades; removing shades.... It doesn't end.

MW is also a few weeks away from losing her job when they force her to go full time. She's been trying to find another part-time job but, surprise, she hasn't been able to get past the interview process.

And she fell again the other night; hurt her back. Her foot still aches. She also has a mysterious pain behind one ear she's sure is cancer.

MW is tired, worried, and angry. I'm exhausted.

And I have a project at work that demands a lot of time these next few weeks. It never ends.

Four years. I've been holding onto this secret for four years.

I cannot see the end. That terrifies me because I can't continue like this.

It has to end.

***

I come home to a disaster and clean and clean and clean some more; all while attending to MW who inevitably needs  help with the computer or television, whatever. Eventually, things settle and I'm able to prepare food for myself.

And while I'm spooning sauce on a tortilla, the salsa accidentally plops on the counter.

Another mess; made by my own hand this time.

Such a small thing. Only one swipe of the sponge....

But it turns me inside out. My eyes catch fire, threaten to spill over. It is the last, the very last, straw. I see myself ending this; I can picture my limbs moving; legs taking me to the bathroom, hands turning on the water. I see myself in the mirror. What have I become?

I could end it there and then. I want to end it.

But I turn and get the sponge.

Maybe tomorrow.

***

Here's something from a Huntington's website:

Access to care early on is critical to managing Huntington’s disease

Yeah, okay. What about it?

As patients with HD become symptomatic, it is key that those individuals have access to comprehensive care with doctors who are knowledgeable in HD. 

Uh huh.

HD patients in early to middle stages of the disease need coordinated multidisciplinary healthcare services, including assessment of cognitive function and counselling by (neuro) psychologists, rehabilitation programmes, active physiotherapeutic interventions, speech therapist training and occupational therapy. 

Jesus, look at that list!

Lack of access to care for families with HD means unmanaged or poorly managed symptoms, higher rates of caregiver burnout, potential unnecessary hospitalisations and early entry into long-term care facilities.

Caregiver burnout. Too fooking right! And all the rest.

So, monster then. I'm back to being a monster.

2017.07.13

But it isn't always intolerable cruelty. In fairness, MW's flurries of rage only take up around 15-20% of our time together. Understand, however, that would be significantly more if I wasn't completely servile and voiceless. It is a tenuous balance. Many times MW's anger will be sparked by my silence being perceived as neglect, whereas I'm actually holding my tongue out of fear. I've learned that any fire started by recalcitrance burns shorter and cooler than the furnace-blast generated by misspoken or misunderstood words. To that end, I communicate mostly through grunts and non-committal stammering. It works most of the time; MW just keeps on talking.

I credit this for keeping the peace. Mostly keeping the peace.

What about the other 80%?

Half and half: 40% complaining about things; 40% worrying about cancer.

So, really, the bulk of my time isn't cowering in fear, but nodding along with whatever perceived injustice MW is suffering or repeating the mantra - "I'm sure it's not... I'm sure it's not... I'm sure it's not cancer."

Tolerable, I suppose. Sad, but manageable.

However, every so often there's a small moment of grief that is almost impossible to overcome. Not like the ear-drum piercing shouts or narrowly avoided acts of violence; but something so subtle, it quietly breaks you.

The other day, MW was rambling on - I can't remember about what - but she was talking, talking, talking. In the middle of it, she realizes she has to go take a shower, so, still talking, goes to the bathroom, undresses, and turns on the water. Then immediately comes back out to continue the "conversation" - nude, with the water running.

She talks and talks and talks. Minutes pass. Ten, fifteen....

For me, this is one of those hard-learned judgement calls. I could politely interrupt and tell her to go turn off the water, or I could rise out of the chair and turn it off myself. Either of these two actions, however, could start a tirade. I might be accused of not paying attention to her and get screamed at. So I do nothing but sit and nod and mutter "uh huh".

Fifteen, twenty...

Eventually MW stops, looks around confused, and says "What am I doing? Why am I standing here naked?" And shuffles off to the shower which by now, I'm sure, is cold.

Just that expression....

Confusion. It's worse than when the hideous contortions of rage twist her pretty face.

***

From the misery/company corner: a FB post about how HD is like a body snatcher. It takes a person away and leaves behind something else.

Yeah. That's pretty good. Expand it to the caregivers, too. HD has stripped me to nothing and tacked up a thin, paper mask as a replacement.

Indeed, many people are changed through hardships - some forged into stronger mettle; other's collapsed into waste. But my experience with HD is different. Hardship, sure; but so relentlessly hopeless and isolated.... Take the social media postings: I check them to connect, but I can never post anything. Inside my house, I canonize myself a saint, but I'm not so far gone to realize that I would be seen as a monster to anyone else. Especially in the HD community. They would recognize my behavior as negligent, dangerous, maybe even mocking.

I'm alone here. No family; no friends; just a bogus account on social media platforms crammed with suffering. Not stronger; no weaker. Just gone.

There's nothing left of who I used to be. My job is mostly done on computers - very little human interaction. I don't talk at home. Sometimes, when I do open my mouth to speak, what comes out is raspy and broken. A stranger's voice. I have to clear my throat multiple times just to form words.

The "person" I talk to most is my dog. He's cool, but....

I've been removed from family; society.... humanity. I've been removed from myself.

Goddamn this disease.

***

Which brings up another, interesting thought.

A cure. What if they did find a cure?

Well, it depends, doesn't it? Could the cure reverse the damage done? Not only halt the onset, but restore the brain to healthy?

If not; if the cure only prevented further degeneration; it would leave us stuck in this... living hell where MW can't really function without help and is prone to anger, depression and confusion.

But if a cure could restore the victim?

I wonder if MW, once cured, would even recognize me anymore. I can't image her caring for the person I've become. I certainly don't like him much.

So if MW were to become healthy again, could I recover too? Or would is it just too late for us anyway?

2017.07.07

I joined a support group today. Yup, I've become one of those people. Enfeebled.

To be fair, it isn't a real group - "HDSA Caregiver Support Group". Just an on-line thing. And, oddly, they only allow so many accounts to sign into their sessions and all the spots are currently full, so I won't be able to attend any meetings. 

Still. I have a support group. 

What a joke.

***

Recently, MW has suffixed her bouts of enraged aggression with timid niceties. She'll attack me with all the fervor of a Templar, turn around, and then start some banal chit-chat without even acknowledging that'd she'd just called for my head on a pike. 

I wonder how much of this is early on-set and how much is self-preservation. I've timed it: if MW is not otherwise occupied with something like a TV show or a phone call; two minutes will not pass without her calling upon me for some service or with a question - usually about her health ("Cancer? Is this cancer?"). 

If I'm in the house, she is incapable of being by herself. She needs me around her constantly.

And yet, everything I do infuriates her beyond reason. Or everything I don't do. It doesn't really matter. In the past week she's reamed me for stopping at yellow stoplights; driving too fast to make it through a yellow light: putting too much water in her bottle; not putting enough water in her bottle: waking her up when she'd asked to be woken up; not waking her... You get it. Oh, and the things I have no control over; like when the computer doesn't work or the TV goes out - that's my ass right there. 

I take it - I have to - but these recent turnarounds rile me. Is this next level shit? Is she sliding into the next phase of dementia where she can no longer conceptualize her own behavior? I'm used to her getting and keeping a mad on for hours if not days - that, at lease, seems natural once you get past the point that it isn't justified - but these sudden reversals are confusing.

Unless it is self-preservation; where she realizes she can't both destroy and use me at the same time.

Well, this is something I can ask my support group about.

***

Saint or Monster?

Based on MW's comments last month - when she said she never wanted to know - I have been strutting around the place with my halo cocked at a jaunty angle. Only room upon this cross for the chosen, you know. A few days ago, however, something happened that gave me pause.

A small thing.

After MW had finished writing down her daily reminder notes, sticking them all over the walls with masking tape, she spent a few awkward moments trying to fit the cap back on the Sharpie - getting her thumb good and inked in the process.

I went to take the pen and cap from her, but then stopped and thought; "No, let her do this herself."

Followed immediately by another thought; "Why? Degenerative means this won't get better. So what if MW gets the cap on today? What about tomorrow? Next week? Next month? Holy shit, next year? What difference will it make if I take it away from her now?"

By then it was moot - she'd managed the cap.

And just like that, I'm back to being a monster.

2017.06.16

Temporary though it may be, I've been walking on air these past few days. It started when MW, during one of her protracted, rambling ruminations on life, expressed the desire to "never know" that she has HD. "I would be really depressed.... if I knew I had a terminal disease," she said; then, "All I hope is, if I do have it, God makes it so I never know."

There you go. I'm not a monster after all. In fact, I'm doing God's work.

And that motherfucker owes me big time for this.

***

Anyway, for now, I'm Saint Wayne - snugly tucked in my hair-shirt, lying to and deceiving MW for His great glory. Hallelujah! 

It can't last, of course, but then I've been saying that for years. But if it is going to end soon, one of these will likely be the reason:

1. Unemployment
2. Insomnia
3. Foot pain caused by walking "wrong"
4. Diet
5. Cockroaches

Not necessarily in that order. In terms of actual severity; cockroaches would probably be #1. 

MW absolutely looses her shit when she sees a tree roach. Even a dead one; if it's in the house, she's terrified. She won't enter the room until I've gone ahead to make sure it's clear. She can't sleep worried they'll come for her in the night. She had me go around and duct-tape every seal around the light fixtures and doors we don't use. She'll talk for hours, recalling every roach she'd ever seen it the house; where it was, what it was doing.... 

She's one tree-roach away from institutionalization.

***

Foot pain. MW likes to run around the house, chasing after the little dog. Whenever I hear them playing, it sounds like our floor is being stampede by a football team. It's just a matter of time before she falls or knocks into something with disastrous results. 

***

Unemployment, diet and insomnia are on-going concerns. Any of them could put her over. She's also been getting these pimples on her face - she blames them on her diet - and they upset her beyond reason.

***

Let's not forget erratic movements, in-coordination, and carelessness. She'll leave the stove top on more often than she turns it off these days and I cannot just hand her anything anymore. I have to grab her hand, place the item there, and make sure her fingers have closed around it before I let go. Oddly, she doesn't recognize these behaviors as "wrong". When I remind her that she left the stove on, or when she drops things, she just laughs it off. 

Everything else causes extreme anxiety, but the actual, undeniable symptoms don't even register.

Mysterious ways, I guess. Now that I'm a saint, I'd better get used to them.

2017.05.18

Social media buzz today is all about the Pope meeting with HD families. He told us that we are “not alone”.

Wrong. But thanks for trying, buddy.

***

The problem with social media is watching the videos. Seeing how everybody with the disease starts to act, sound, even look, the same. The same gait; the same arm movements. The same slurred, drunken speech. And worse, their faces. They all get that lopsided, twitching appearance. Wait for it and you’ll see the Sardonicus grin. Rictus, really. After that comes the deep frown: the furrowed brow over sunken eyes; revealing a terrible mixture of confusion and fear.

One roll; 30,000 actors. Each slightly different, but all of them commanded to act out the same characterizations. The part they’re playing? Slow death.

***

But I admit, watching the Pope interact with HD victims had an effect. It made me sad, but in a good way. No, trust me; I’m an expert on sadness and it is possible to be good-sad.

I was raised Catholic. He is the Pope. How can I not react to him acknowledging our struggle? Oh, I know it is meaningless and won’t change a thing. My options are still intolerable. Nevertheless… he is the Pope. And he went out and hugged people like MW.

Thanks, buddy.

***

Today, for the first time, I got proof that my sympathetic HD actions are working. MW called me at work to worry over a possible symptom she’d experienced last night. She explained it as having “heard a noise” while on the computer.

At first I didn’t understand; but that’s not uncommon. So I asked if the computer’s speakers were turned on?

She went on to explain that the noise came from her arm twitching uncontrollably.

Ah.

But then, as I was running through all the reasons why sudden, unexplained movements are definitely not symptoms of Huntington’s disease, she preempted me by stating; “I’ve seen your arms like that sometimes.”

Indeed she has. And not by accident. I will make random, twitching motions when I’m around her just to plant those seeds. Lo and behold – fruit!

So that strategy paid off. Good. Any little victory…. The downside, however (everything comes with a downside these days) is the anxiety and roiling guts I experience when I call the house and she doesn’t answer (accident? fire?) or if I hear sirens when she’s out alone (crash?)

2017.05.08

The conversation about "why does my arm/leg/head move like that?" has progressed from a once-in-a-while occurrence to a daily event.

I still answer it is normal behavior, everybody experiences it, happens to me all the time. We're growing older. And so far that's worked.

So far.

I'm going on my fourth year of this... madness. Four years of lying to MW while taking ridiculous, almost comical steps to ensure she doesn't discover the truth of her condition.

Four years ago I was certain the end was in sight. I knew it couldn't last. 1,400+ days later and here we are: Still dancing on the edge of the cliff.

But now....

MW can't sleep for the twitching. She wakes up every morning asking me why her body moves like that. I lie.

She spills food and drops things so frequently these days; it isn't even remarked upon anymore. I hear the crash and shout out "Got it!" before she calls for help. I've done a remarkable job keeping her away from family and friends, but the few she does speak to, I know, are confused by her behavior. I feel physically ill when I hear the phone ring because I'm worried about what will be said.

And she's maybe a week away from losing her job. They say it is a schedule change, but there is no way she can work full time and I think they know that. They're trying to get rid of MW without actually firing her. I can't blame them; but not having a place to go, even for just a few hours, will be very difficult for MW.

More time to sit around and feel her body twitch.

***

The warrior heart that beats for the struggle; lives for the fight. Will never surrender or submit. Finds strength in adversity; comfort in God.

That's not MW. She would rather die than even admit she has a problem.

Which leads to the question: where does this end? What will I be asked to do; what am I prepared to do?

***

Hopelessness. I've a newfound appreciation for the word and I think it may be overused. "This is hopeless", usually means the outcome will be less than ideal.

And that is not hopelessness.

I read the HD social media posts. Misery; company, etc. Recently someone posted an angry rant about the disease, one of the lines read "only God has the cure!" Naturally the comments were voluminous and almost uniformly offered "prayers".

Nope. Maybe, but nope. "Only God has the cure!" means the only cure is God taking you away. Translation: death. There's your cure. The only cure.

Now we're edging closer to the true meaning of hopelessness. Not that the outcome will be less than ideal, but there is no outcome at all. Just an end. The ultimate end. That's where this is going. And the journey towards that end is long and painful and intractable.

I spend every waking hour of every day feeding and cleaning up after MW, listening to her irrational and often hateful speech, and, most important, lying to her face; her once stunningly beautiful face that has started to contort and reform into the HD rictus. My reward for this will be to do the same tomorrow, but a little worse. Then a little worse the next day. Again and again.

Until one of us dies.

Hopelessness.

2017.04.10

Saturday was my birthday. 45 years old.

Think about that - anyway you look at it; my life is over half over. Take into consideration that my father died at 68, round that down, we're talking almost 80% done.

And if what they say about despair and lifespan is true, that ought to bump the needle up well into the 90s.

Will I even see 46?

Do I care?

***

MW is about to lose her job. It's a little complicated, but the up-shot is they are taking away her part-time status; forcing her to go full-time. I'm not sure if they're doing this to try to get rid of her because she acts weird, or if they really can't have any more part-time employees. Note that they did make an exception when they transitioned her into a new position - they allowed MW to keep her hours even when everybody else had to change schedules, and for years now she's been the only part-time employee in her group.

It gives them an easy out: MW's behavior around the office is odd; but she hasn't fucked up the job yet, so instead of firing her, just push her to 40 hours and wait.

She won't last a week.

For me, this means I'll no longer have four hours alone on Saturday to get shit done around the house. I won't be able to do laundry, clean the bathroom, or cook the hard-boiled eggs I eat everyday for lunch. My future has become smelly and hungry.

For MW, this has pushed her closer to hopeless depression and created more of those hot-anger spikes. Bouts of weeping followed by near-violent outbursts of rage. I have to gently talk her down from filing a lawsuit, then withstand the attack when she accuses me of being against her.

Her fear is being alone and lonely all day. I've suggested taking classes or volunteering somewhere - but this advice is ill-received.

And, as I stand there taking the ceaseless tirade of what a worthless, terrible, pathetic person I am, I nod my head and consider:

Alone and lonely. Yes. That's where we're going.

***

Take, for example, my birthday. The only people who acknowledged it were my brother (who sent an email) and a co-worker who saw it on the firm's calendar and poked his head in my office to wish me HB. Not even MW remembered - though I don't blame her. She's going through a lot.

And I'm not complaining - this is entirely by design. I can't trust family or friends not to say anything that might upset MW so I've pushed everybody away. I've worked very hard to establish alone and lonely. Once MW loses her job, that's another little triumph for my master plan.

Achieve total isolation; then wait around to die.

Perfect.

***

The frequency of MW commenting on uncontrollable movements is increasing. I assure her it's nothing; happens to everyone; especially as they age. I've even started twitching some of my own limbs at odd moments - hoping she'll notice and think it's normal.

There's one for the medical books - sympathetic HD.

***

One thing that's confusing/annoying me is MW's weight. Two years ago she was highly worried about weight loss. Now she's concerned that she's putting on the pounds. And she has gotten quite large around the middle. What the fuck?

I'm sure this has more to do with getting sober than sympathetic HD, but I've lost over 30 pounds since October. Again, I rather hoped MW would somehow think it is normal for certain people to get trim as they grow old. You'd be surprised at what I can get away with when it comes to lying. But now that's backfired on me and all I've got to show for it is a couple of crudely punched holes in my belt and one pissed off wife.

She yells at me for looking thinner while steaming with anger that she's gotten thick.

That ain't right.

2017.03.31

It's been day-by-day for so long, I've grown inured to the sense of dread. Life as I know it will be ending soon; replaced with something much worse. 

And so what? After three plus years of waking up anxious and going to sleep sick, I'm just ready for it to be over. 

That said; I am sinking low these days. The flood of irrational behavior has turned our house into a swamp and I don't have the inclination or strength to keep bailing. Two days ago I'm banned from going upstairs because MW almost tripped over the dog; yesterday I'm told we're no longer allowed to use the garage door opener because MW almost backed into the door. The HD wall paper is back with a vengeance - there isn't an inch of the bathroom wall or fireplace mantle not covered with taped-up "reminder" notes.

MW complains incessantly; she gets angry at everything and anything. I'm routinely and vehemently chastised for things I've no part in or control over.

Sleep is difficult. Night-time anxieties strike and MW is in and out of bed for hours setting the world right.

And, of course, she worries about her health.

I have the power to end it. All I need to do, next time she asks if I think her muscle spasm could be HD, is say yes.

Like that; it's over.

Christ, I've come close. Over these past few months? So close.

Why haven't I? Why am I still standing here, useless, bucket dangling from my fingers while the water rises past my nose?

***

I'm ill. Hatred for MW's family has poisoned my mind; turned my soul black. I've had recurring dreams where I'm drinking again - the sensation so real, I wake up nauseous and wobbly. Feeling evil.

I justify "reverse gas-lighting" MW, especially when it is her own behavior I'm trying to normalize, but lately she's noticed my weight loss. There's nothing "reverse" about me telling her she's mistaken and that I've always been this size even though I'm swimming in my clothes and my pants fall right down without a belt.

The look of confusion and concern on her face only reaffirms my low opinion of myself.

Everything is a lie - and I can't pretend that it is all for her own good anymore.

2017.03.27

I'm so full of hatred and poison now, I'm amazed my exhalations don't drop birds from the sky; my footsteps scorch concrete and kill grass. For you see, hard times at Casa Muncie are on the upswing and there is no relief in sight. Indeed, the future holds an ironclad promise of  unavoidable confusion, depression, isolation, and hostility.

And now, into this lock-box of misery, steps one of MW's unbelievable relatives bringing yet even more anger in each wicked hand.

I'll take this much culpability - I did answer the phone when he called. Normally I divert or hang up on any of MW's relatives, but I'd been caught off-guard. MW had been working the phone that day, trying to get things "organized" for a day-trip she wanted to make. Ten hours on the road for a two hour stay at an expensive hotel in Dallas because.... Well, just because. And when we travel, we're not allowed to use public restrooms or eat at restaurants. All food for the day must be prepped and packed before leaving. We can use the bathroom at the hotel - that's why we're renting the room at $300 for a couple of hours - but we can't sit on the bed and/or chairs without first covering them. So we had to hit the stores for cheap sheets and other items (flip-flops because we can't step on the carpets) necessary to make this trip a success. And while I was gathering supplies, MW was busy making reservations and such.

Anyway, when my cell phone rang and the caller ID read "Private", I should have just diverted and told MW that it was a wrong number/spam. Stupidly, I answered.

It was one of her out-of-town cousins. From her mother's side. Who should know better.

Surprise! He had a stop-over in our city and wanted to see us. Unfortunately MW was right there in front of me so I couldn't brush him off without alerting her. With no other option, I put him on hold and told her who it was and what he wanted.

She panicked. She told me to tell him that we couldn't do anything because.... We were having diner with friends.

Which I did. Then he started complaining about how he never comes to our city and he only wanted to meet us for an hour and we would still have time to meet our friends. I didn't relay any of this, of course, I just smiled and said into the phone "Okay, thanks for calling. Good to hear from you!"

Then hung up with my heart pumping black, poisonous blood.

That fucking cunt! Throw guilt on us? When he goddamned knows his cousin is at risk for HD? Okay, the layperson gets a pass - but he, he himself, hisowndamnedself, his highness personally - comes from an HD family. The coin dropped favorably for him and his - God bless and keep them - but not only is he as close to the disease as you can get, he's also a goddamned doctor of psychiatry! And he knows his cousin is almost 50; he knows she's been having "issues"....

Absolutely incredible, the way these fucking people act.

But it gets better.

Later that day, we've run most of the errands in preparation for the Big Trip and MW decides to lay down for a nap. No sooner has her head hit the pillow then there comes a knocking at our door.

Her cousin. Unannounced, uninvited, even after I've told him we wouldn't be home... There he is on our doorstep, banging away.

MW flies into a panic. She's runs towards me, saying in a "stage whisper" to be quite so we can pretend we're not at home.

Of course her whisper is just a notch below a normal person's shout. The cousin hears her and commands that she "Open the door!"

And I would have too; if I owned a gun.

But I don't. So we stay away from the door, huddling in silence until he leaves.

Very rarely have I ever been literally sick with rage, but this certainly qualified. I was shaking, quivery, nauseous. I wanted so desperately to run after that fuckwad and tear his cunting head off.

How dare he?

I mean, really. How fucking dare...

The thing is - we need so much help. Jesus, do we ever. And family is everything, right?

Right.

Assuming I don't die first; I will not have those motherfuckers at MW's funeral.

I cannot think about this situation without my vision going blurry and my teeth grinding. I hate them so utterly and completely. I'm filled with venom. It bows my back and hurts my guts.

And I really need to be feeling like this now.

***

As I said; times are hard. MW's irrational behavior - of which I've become expert at managing - has lately been coupled with vehement anger. When she topples her bottle, it is my fault for filling it too high; if the dog barks, I should have trained him better; and when I try to clean up around the house...? I can't do anything right.

Of course the reason I don't do anything right is because I don't care enough about her.

This is what I hear constantly. This is what I hear after I work twelve hours, come home and spend the next four hours cooking, cleaning, and generally taking care of MW.

The other day she yelled at me for breathing too loud while she was trying to watch TV.

Yeah, okay. That ain't her; it's the disease.

So I'm HD's bitch. I get it. And I deal with it, mostly, but I get so tired.

***

I make it through the day's like an emotionless automaton. When MW rages against me, I stand and take it. I let it storm; my thoughts to the sink full of dishes or the food that needs to be cooked for tomorrow and how much longer until I can get those chores done. How many hours of sleep will I get? Four? That would be good....

But lately it has dawned on me: once MW is no longer able to equivocate her condition; once she's been fired from her job or can no longer control her physical movements; then she will turn against me with a scorching hatred the likes of which I'm not sure I can withstand.

She will blame me - rightfully so - for hiding the condition from her.

She will accuse me of not caring enough to tell her she has the disease.

I will have no response; no defense. Yes, I have been lying to her for years. And it won't matter that she has told me she'd rather not know.... It won't matter that she even asked me not to tell her if I thought she had it.

When she can no longer avoid the truth; she'll know I've betrayed her.

That's not going to end well.