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.