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.