2018.06.13

I'm rethinking the whole "this will be the year" thing. MW has shown, like, zero self-awareness. Interviewing for employment invariably leaves her a shattered, weeping mess; moving has become well-nigh impossible; and she makes doing the simplest tasks around the house seem monumental. 

Her "clumsiness" has become alarming. She's constantly banging into things; knocking stuff down. The other day, while trying to re-cap a pen, she stabbed herself - hard - in the leg. She inadvertently punched me in the eye; like a comic book character, I saw stars. The dog refuses to eat dog-food. He knows that if he just follows MW around, sits close when she's snacking, he'll get a much better meal. As soon as she moves from the couch, he's right there to Hoover up the leavings - of which there will be plenty.

And yet - through all this - she never once entertains the possibility that she may have HD. Well, okay, that's not strictly true. She has, on occasion, mentioned it as a remote, distant event that might take place somewhere around 2040/2045. Something she can deal with AFTER her life's been lived.  

She frequently talks about how she wants to work until she's seventy years old. Even 75, she says. She never wants to retire. 

Oh, darling. 75? Oh my dear.

So whereas I started 2018 certain that she could not continue to delude herself; here we are: half way through and still no signs of discernment on her part. 

The power of denial is awesome. Truly, it is amazing. MW will slam right into a table; knock everything off, then laugh - "why am I so clumsy?" - and go about as if nothing happened.

***

"Why won't they hire me?" is another constant question - but this is fraught with danger. My pat answers have lost effectiveness from overuse and she grows angrier every time I trot one out: 

"You're overqualified."

"They have to advertise the position even if they already know who they want to hire. It's the law."

"That job isn't right for you anyway."

Once acceptable, any of these answers today will land me in a boiling pot of white-hot rage. See, these responses mean I'm not taking her seriously.

Fortunately, there are two I can still get away with:

"They're probably looking for someone younger."

And the one that makes me hate myself even more than I already do:

"They're racist."

Yes, the racism card. Guaranteed to send MW into an ugly, hateful rant on race and ethnicity. They only hire blacks. And Mexicans. This isn't even America anymore. Why can't we make English the national language? 

And on and on.

It's depressing. And exhausting - she never lets up! I'm staggered by how much vitriol and nastiness MW can muster when on a tear. And I despise myself for going there, but it beats the alternative.

***

The alternative being me. MW verbally abusing me. Yeah, yeah. Poor baby. But it can get sketchy. When MW turns it on...? So I know when we're in the kitchen and MW has a knife in her hand and she gets mad at me - and really starts unloading; yelling, screaming, calling me every name in the book - hell, I know she's not going to plunge that knife in my heart.

Right?

Of course not. 

Still, it gets sketchy.

And before you suggest that I just not do anything to set her off, allow me to relate what happened last night. We're going for a walk at the park and there's a big branch - I mean a very large chunk of a tree -picture cord-wood and you're not far off - sitting just off the side of the walkway. Part of it, in fact, jutting onto the walk. 

I move over to allow MW plenty of room to avoid the wood. As we pass it, she comments on how dangerous that is. How someone could easily trip over it. How somebody should be responsible for making sure that doesn't happen.

Then, after we've passed it, MW turns on me: "Why didn't you warn me? You must have seen it? Did you want me to fall?"

And she is furious. Genuinely, not even joking, seething with anger towards me.

I cannot not piss her off.

***

Previously I wrote about how MW has said she made a mistake by marrying me. Recently she's expanded on that. Not only should she have not married me; she shouldn't have married any white guy. It's only because her mother got sick that she even tried dating outside her race.

Understand, this is actually one of our more pleasant conversations. She'll say this when she's not mad at all. No, she talks like this with me; as if I'll sympathize.

And I do. I'm sure she's right. I have to be a tremendous disappointment. 

Still, she relies on me for everything - I mean, everything. Cooking, cleaning, making her bed, listening to her rant about how terrible I am.

I'm a caregiver for someone who hates me.

***

Which brings us to the topic of suicide. Rather on point, as the world comes to grips with two recent celeb suicides; Spade and Bourdain. Couldn't care less about either of them - except I actually actively disliked Bourdain. Understand I eschew all television - that's MW's domain. She has it going all day, all night, to whatever bullshit station she wants. Mostly Fox news, but she also liked Bourdain's show. And the Real Housewives. So he never had much of a chance with me anyway.

However, even without being lumped in with such reprehensible company, he struck me as being an egotistical, self-impressed blow-hard who made every meal about himself. Whatever. And to his credit, in the glut of info that was bandied about after his death, I learned that he had, in fact, self-diagnosed himself as being a narcissist. Too fookin' right, mate! 

But now everyone is reporting on mental health issues and promoting suicide prevention. My favorite being, "Suicide is a permanent solution to a temporary problem." 

Nice, right? Because we all know Huntington's Disease is a temporary problem.

And of course all the noise about counseling or "just talking with someone". 

I've can't imagine there is anything anybody could say that would help me through this illness; except maybe "close your eyes, this won't hurt a bit." Conversely, who could I possibly talk to that would understand what I'm going through? Only another HD caregiver; more, only one who is trying to hide the truth of the condition. And why would I trust someone like that?

***

I'm good for awhile anyway. I really do have something to live for: my next drink. See, the 4th of July lent is working - I want to live so I can have a fucking beer. Then some vodka. Maybe that fruity wine too. 

I ache for it. I think about it all the time- it keeps me going.Whenever I feel too, too down, I imagine the first sip.

I want to live to drink again!

Which worries me. Hopping on the wagon was rough this time. The worst of it being a very nasty dream about, you got it, suicide.

In the dream, I was at the top of a tall building, explaining to somebody why it was safe to be there; all the while knowing I could die just by moving my feet from the ledge.

And I was compelled to move my feet. I felt myself moving them. Even while talking about safety, I was inching towards the abyss. 

I woke up feeling disoriented and sick. Sure, withdrawal, but even more: I regretted.... Not falling.

I'm not doing it justice, but it was bad. See, there's HD logic behind suicide: dead I wouldn't have to face the horrors of the disease stealing my wife away from me. I wouldn't have to suffer through the hatred and anger anymore. No more fear of her getting hurt or hurting others. And, really, if I were gone, she'd have to get the help she needs because she can't handle life by herself anymore. 

The lies would stop. As would the odd and various physical pains that wrack and wreck me.

This all makes sense, and I can bandy it about in my head, then consider that I can go another, maybe year? Maybe day? Anyway, I don't have to do it now. I can put it on the shelf and take it down later.

But the dream? That brought me low. It felt more real than making a logical, clear headed decision about ending my life.

The compulsion to go off the building was visceral. It was in my guts. 

It was hard to wake up.

The question is: what will happen when I start drinking again? I'm not sure I can handle another such dream.

2018.05.25

Last night I duct taped washcloths around the doorknobs in MW's bathroom so she doesn't hit her head when using the toilet. "Don't they make safe doorknobs?" she asks.

"Most people don't have problems with doorknobs," I answer.

Later, around midnight, she wakes me up in a terrified panic. She's trying to floss but can't wedge the string between her teeth; too much plaque.

The night before she woke me up at the same time to move a heavy blanket. So heavy, this blanket, that she was afraid it might strane her arm were she to try and adjust it.

Before that, it was 3:00am when MW had a crying fit over a pain in her hip. Arthritis, she was sure, and we stayed up the rest of the night worrying.

I am exhausted.

The ebb and flow nature of my job is flowing now and I've been working 12+ hour days - that's straight up work: no breaks, lunch at my desk, no walking around. Tack on a two hour a day commute, then home for cleaning and cooking and care-giving.

This is what a zombie must feel like. Except, of course, they're already dead. Lucky.

***

MW was hired last week. She filled out all the paperwork, even went to take the drug test. Then the night before she was supposed to start, she sent an email saying she couldn't take the position. Another, better job came along, she lied.

Dodged that bullet. MW needs to be kept as far away from people as possible so nobody accidentally sends her over. So far her own dementia has taken care of this - she really can't commit or make up her mind about anything. But it does cause distress. "What am I going to do with my life?" she cried after turning down the job.

Nothing much. Die, mostly. Spend a lot of time dying.

***

Having walked away from employment, MW is now determined to travel and see friends. Eh, we'll see. This is another one of those deals where I get to be a totally useless asshole and will still likely get my way. Of course we can't travel - MW can barely survive in her own house. No way she'll adapt to strange buildings/strange rooms, therefore, I'm terrified she'll actually commit to going.

So how do I prevent it?

By doing nothing. I tell her to plan the trip and I'll show up. Whenever she asks for my advice, help, or opinion on anything, I just reply "Whatever you think is best." and let her spin around uselessly until the decision doesn't get made.

This almost always works; and I'm trusting it'll pull us through again.

***

As it has with the house situation. We can't renovate because MW wants to move instead; but we can't move because there are no suitable houses. What, then, is a suitable house? Let's see: one story only; not anywhere near any kind of water (including drainage ditches, ravines, retention ponds.... basically anything wet.), not near a school (kids are horrid), can't have big trees (they'll fall and kill you!), no Asian prior owners (seriously), can't be situated off a busy street - or even a slightly busy street - hell, any street where cars can achieve speeds of 30+ miles per is dangerous. On and on . Really, every house she's looked at has had something wrong with it. And brother, believe me, if she doesn't immediately find something, all I need do is make a weak, mushmouthed comment about something and it'll stick in her mind like a catchy pop song. "Oh, look. This street has a bike lane." I noticed at one place.

Ha! There's another for the list: can't be next to a bike lane.

***

I may have had an honest to God alcohol induced hallucination. Not a pink elephant, but close: green fireworks. One quick starburst in the sky. I was with MW and I made a comment about it - I can't remember what - but her response was non-committal. Then I started wondering - why would somebody shoot off one star-burst fire cracker in early May in a suburb? Also, I know MW, if she had seen it too, she would have gone off: "that's illegal; nobody should do that; fire hazard; blah blah blah." So she must not have seen it - even though it filled the sky.

And I hadn't heard an accompanying "boom". Just the flowering then fading green lights against the black night.

Had I really seen it? Even now, I'm not sure.

So I stopped drinking; but I'm doing it smart this time: I'm not making any long term sobriety plans; this is only a July 4th lent. 40-someodd days of self-denial until the nation's birthday. Then I'll start drinking again until around September when I'll go on a Halloween lent. You see how this works. After Halloween; back in the bottle until Easter for real lent.

This I can live with. I think I can live with this.

***

If only it wasn't for these headaches. Don't worry about my liver going soft on me during the dry times - I'm popping Advil like M&Ms.

2018.04.27

MW fell last week and twisted her ankle. Wasn't bad, swoll up some; able to put weight on it and was walking around within minutes.

Physiologically, however, she's busted up pretty awful.

"Why did I fall?" she's asking, over and over again. Waking me up at one in the morning: "Why did I fall?"

Everybody falls. Nothing to worry about.

Then, again, yesterday she twists the same foot - just a hitch - but oh boy! "Why do I keep falling? Why do I lose my balance all the time?" ad nauseam.

Everybody... loses their balance. Nothing to worry about.

Even drunk, I stagger some, but I don't really fall down. So yesterday I gave serious consideration to staging a fall of my own, thus proving my point. Ah, but I'm not young anymore. I don't bounce back up. And though I'm walking-wounded, I'm still walking, and we need that.

I can't go down. Not all the way. We'll sink.

***

MW has been trying to decide on moving or renovating and this weekend she finally made a decision: we'll do both! So we're looking at houses while shopping for contractors. Oh, she's also buying new furniture which we can't use. Last week we purchased an office desk, put it in a room MW wanted to convert to a study; and then had to deconstruct it almost immediately. It's complicated, but we have a two story house and the atrium is open so you can look out a large window from the second floor. MW is obsessed with the comings and goings of our neighbor, so she spends a lot of time looking out windows. Anyway, the 2nd floor room she chose to be the study opens to the hall from which she can look out the large window.

And that's hazardous because if she's looking out the window, she's not paying attention, and could trip and fall down the stairs.

So we can't use that room for a study; therefore, we can't use that desk.

$2,000 down the drain. That's on top of the, oh, say, $1000 worth of estimates and designs she's paid for but won't use. My favorite money spent to those efforts was $100 to a handyman who provided estimates for replacing box lighting in the kitchen. As soon as he left our house, MW proclaimed she would never use him because he's an Indian. Nice.

***

Maybe I'm hypersensitive, but we met a real estate agent to view a house and I got vibes from her that she knew something was wrong with MW. It was a two story house, but the master bedroom was upstairs. This, of course, did not set well with MW. Stairs, as you know, are on the enemies list.

MW tried explaining to the agent why she couldn't have the upstairs master - phrases like "I'm careless" and "I lose my balance a lot" and "I'm always chasing the dog around".... weird stuff. And that's when I felt a subtle change in the agent's approach to MW. Or maybe I'm too sensitive; but it seemed to me like she backed off from trying to make a sale and moved more towards an "okay, no sudden movements." demeanor. There was one point, when MW was relating all the recent times she's tripped and fell, where I caught the agent looking at MW with confusion and concern; like she noticed the odd movements of her body even when standing still.

***

Most weekends are hard, but this one seemed exceptionally rough. I like to think I've become an expert at navigating dementia, but I couldn't do anything right. MW snapped and yelled and insulted and cussed me for 48 hours straight.

I'm so grateful to be back at work. Unfortunately, MW is making me take another day off this week because we have to go see my niece's senior recital, which, if we didn't live in an HD house, I could easily just go to after work, but nothing is ever easy for us. I have to take the whole day off to help MW prepare. We're not doing anything but showing up, sitting for a couple hours, then leaving, but it is a social event and those are always stressful.

So another short work week.

I hate it. I hate the weekends. I dread Fridays.

***

When you can't hear the rhyme and you can't see the reason.
Why should the hope remain?
For a man will be tired and his soul will grow weary.
Living his life in vain.

I've been ruminating on hopelessness lately, thank you very much Alan Parsons.

Spring is a hateful time; all green and blossoming and full of burgeoning life. Brutal to those of us who live with relentless death. And yet, as I'm putting the dog out at night, the full moon and chill breeze makes me marvel and I think unbidden - If I live through this, I'll cherish every day. I'll never squander another moment of precious time.

And then my head snaps to the back door where MW will soon appear, a scowl on her face, hissing at me to hurry up and bring the dog in. We've wasted too much time already.

I feel sick, now. Live through this? A joke! That can't happen and I know it. MW and I are entwined, for better or worse, and we will be dead soon.

It is hopeless. No amount of moonlight or crisp air can change that. I'm for the darkness and stagnation of the grave and everything else is just mockery.

I'm disgusted with myself. I drink. I make it through another day, but I don't know why.

2018.04.16

Birthdays are the enemy. Every reminder of passing time is a cruel and remorseless assault. I recently turned 46 years old; in two months, MW will be 50. She'll be dead before 65. That's fact. It's likely to happen sooner, but it definitely won't be later.

Fifteen years, max.

Happy Fucking Birthday to me!

***

How did I celebrate? Same ol'. MW woke me up in the middle of the night to ask if my body ever moves when I'm trying to go to sleep.

Of course it does. Happens to everybody.

Then we spent the day spinning our wheels about the home renovations. Close to one thousand dollars gone so far just getting estimates, etc., but MW will not commit to any design, contractor or schedule. This will go on for a very long time.

Maybe until the money runs out.

***

Although, today we may be back to the "have to move" idea. A neighbor parked in front of our mailbox today and, when MW went out to confront him, it turned into a bit of an ordeal. Conversations with MW tend to spiral. I wasn't there; but MW has been calling me at work to let me know that we're probably going to have to move instead of renovate.

Okay. Good. That will simplify things, I guess. Until one of our new neighbors parks in front of our mailbox....

***

Here again, in tallying up my sins, I can add that, by shielding MW to the extent I do, I'm setting her up to take a hard fall. If I'm not around to steer her right; she'll swerve. Talking with her is strange at best; usually offensive, and frequently incoherent. As an example, during one of her protracted rants about what was wrong with the world, she started rallying against her Indian community and how they exclude everyone who isn't "perfect"; the point being, when her mother got sick, nobody wanted to have anything to do with them. True enough. Then she went on to explain that, had her mother not gotten sick, MW could have married an Indian boy, had kids, and been a part of that community. But because of the illness, she had to marry a white guy so she got cut out completely.

And that wasn't fair.

Well, okay. No offense taken. But you see where this kind of.... tone-deaf honesty? could be considered impolite. When we're out together, I often have to gently nudge her away from racist, sexists, and sometimes just weird topics of conversation.

But when I'm not around, she's getting into trouble.

***

Drinking hasn't worked out so well. Depression over my birthday piled on top of everything else (and it's a substantial heap!) had me sucking down the vodka with a desperate sickness.

I drank to hurt myself. And, surprise! I hurt myself.

So whereas MW has a hard-stop at fifteen years; I'm chopping up the asphalt on my own personal highway to hell with broken bottles.

She may outlast me. She very well might.

And that would be terrible for her, because she has no-one else. Literally there is not a single soul on this planet that will take care of her if (once) I'm gone.

I suppose, if I love her, I should stop drinking. I suppose I should.

2018.04.06

Lent is over and I'm drinking again. Rough start. Sick a lot; headaches a lot, but I'm moving in the right direction. Soon I'll find that level of blissful intoxication and stick there. And then, hopefully, another year will pass without anything too terrifying happening.

I'll drink to that!

***

MW is planning to spend upwards of $50,000 on home renovations. This will deplete our savings and may even put us in the red. Seems like something I should push back at; but how? I tried in my mushy-mouthed, weaselly way to scare MW away from this - suggesting that we might need the money for *ahem* medical expenses, but without being able to offer specifics, I didn't get much traction.

So contractors have been engaged and money is going out the door.

In a year, MW will have a brand new kitchen and bathrooms which she'll be able to enjoy for the rest of her life. And that's, what, five maybe ten more years? Assuming she doesn't have to be moved into a nursing home before then. And, because we're $50,000 poorer now, it'll likely be a cheap-ass nursing home.

***

Five years. Ten. Fifteen or twenty. Where are we?

MW turns 50 in a few months. 2013 was the year I decided, based entirely upon her behavior, that she had Huntington's Disease. The chorea didn't become noticeable until later; and indeed, even today it can be ignored. Explained away as clumsiness or fatigue: certainly not a precursor to death.

Except it is.

I'm sick and tired of waiting for it. I just want this to be over. What's five years? Or even twenty? Not like we're making the most of life while we have it; the opposite is true. Every day is a futile struggle filled with anger, depression and confusion. 

2018.03.23

Sleep has been an on-going issue, but it's getting near critical. MW just cannot stay in bed when the moon is high. Right around midnight is when she'll start getting antsy about things, and tear about the house like the Tasmanian devil - demanding all sorts of adjustments: the bed-sheets must be changed, the nightlights turned off (then on again; then off, etc.), and dozens of sheets of paper taped upon the wall or on the car to remind us of things to be done in the morning.

And what's worse than getting by on meager rest, is the fact that if only I were a little bit clever or brave, I could stop - or at least mitigate - this behavior.

See for some odd reason, Huntington's Disease lowers the body's melatonin, a hormone responsible for setting our sleep cycles. So when I'm ready to crash after an exhausting 20 hour day, MW is hearing the rooster crow in her head. And away we go!

Now then: melatonin supplements are cheap and easily accessible. If only I could find a way to convince MW to take them without bringing up HD...? Seems like a simple solution - casually mention that doctors say melatonin is really, really good for you - she should start taking some. Ah, but MW would never go for that. She doesn't trust ANY pharmaceuticals. Yes, I hear you. Melatonin supplements are not drugs - I know, I know - but that wouldn't matter to MW. She still wouldn't take them based on my recommendation alone. I'm the one who tried to poison her water, remember?

I keep hoping one of the talk show hosts she follows will do a commercial for it. Hell, that's why she takes calcium magnesium - thank you, Dr. Oz!

Or there's this: I could sneak some into her food. OOOORRRR - replace those Cal Mag capsules with Melatonin? Worth a try.

So deceitful. For her own good, but Goddamn.... So wrong.

***

Depression's won. Mentally, I don't even fight it anymore. I've been spinning, looking for an exit from this crazy place for so long now, my legs have gone out. I am flat on my ass.

If I want an exit; I have to make it myself. I know this.

It seems now, however, body has joined mind and they both want me to start drawing up a blueprint for the exit door.

I've read where people described their nervous breakdowns, but it always seemed like bad fiction. Words like "crushing" and "crippling" being bandied about. Stop being so dramatic; it ain't a car-crash; it's just depression.

Well then; twice within the past week I've been left immobile - slack-jawed with tears of pain brimming over - just because of depression.

Quite literally, it felt like a giant fist had clenched around my body and squeezed. My spine contracted; my ribs pulled together. I could only draw in weak breaths.

I was being crushed; too crippled to move.

Such a fucking drama queen!

The prompts for these events aren't worth revisiting; but they were both based on MW's behavior. HDDQ! And I had no endurance left. None. The next hate-filled, rage-fueled, profane and destructive word spat at me from MW's snarled mouth would be the last. I was done. Mentally, done.

And my body tried very, very hard to make that happen physically as well.

I need an exit.

2018.03.05

Huntington's Disease: The reason God invented murder/suicide.

Superimposed over the image of a CAG repeat chart.... I bet that'll sell some T-shirts!

Yeah, I guess you could say it's been a rough few weeks. MW has started insisting I stay home from work to "help" her while she treats the fungal infection on her feet - which has, apparently, now spread to her hands(?).

So I get to stay home and be a full-time honest to goodness caregiver. Visiting angel; that's me. Just ignore the horns.

Mary Mary quite contrary
What makes your horns grow?

First and foremost, I gain Satanic stature by propagating and maintaining the lie. MW does not have Huntington's Disease. Uh huh. And how exactly does this work?

I help her apply for dozens - hundreds - of jobs, but every time she fails a face to face interview? Well, that's because MW is over-qualified, or they already know who they're going to hire but have to go through the steps for legality sake, or (and this is rapidly becoming my favorite) everybody is racists.

Also, MW loves to make big plans. Travel plans. Home improvement plans. Even just diner with friends plans. Great, I say.

You plan it, I say, and I'll show up.

Ha!

The plans inevitably spiral away into the realm of the attainability bizarre and nothing gets done.

But that's not my problem. I absolve myself from any responsibility. "Whatever you want to do; just let me know, and we'll do it."

I say that twenty times a day and nothing ever gets done.

Fine by me.

What a fucking asshole, right? Yup. But check it: the only way to actually get things done would be to override MW's nascent dementia. And the only possible (not certain, only possible) way to do that would be to address the issue.

Tell her she's sick.

End her, basically. Drop her in that hole.

Or, maybe, if she were more aware of her circumstances, she would allow me to make those plans; see those friends; do the important things.

Before it's too late.

Rolls reversed; that's what I'd want.

Of course, rolls reversed, I'd've killed myself three years ago. Maybe five.

And let us not forget the last, but certainly not least, reason why my demonic horns have grown so huge and intractable: MW routinely berates, curses, belittles, yells-at, accuses, and insults me.

Whatever. I take it.

But, goddamn, it makes me feel like a monster.

***

The other day MW knocked me down. I guess she was trying to be playful (?), but when she pushed me, I went sprawling. This speaks to the freakish strength the chorea has bestowed. I'm a big guy. MW isn't all that much. But when she "accidentally" bumps into me, I'm scooping myself up from the floor.

More fun and games with HD.