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.