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.