2016.04.29

Three days ago, MW went for a walk. Her knee buckled and she twisted her ankle. She calls me while I'm at work, desperate panic in her voice: "Is it HT? Is it HT?"

Three days now I've been hemming, equivocating, obfuscating - well, hell- just flat out lying. 

"No, of course not. Not HT. No way."

(recall HT is what she calls HD)

And I'm back in the box, being sweated by Pembleton and Bayliss. The questions come fast, they are demanding, they circle back on themselves:

"Is it HT?"

"No."

"Why not?"

"It's just not."

"What is?"

"Well. You can't self diagnose it. The only real diagnosis would be to get tested."

"So there is no way to tell if you have HT?"

"Right. Without testing."

"My mother couldn't walk a straight line. That's how they tested her. If I can't walk a straight line, does that mean I have HT?"

"No."

"Why not?"

"Because there are many other reasons you might not walk a straight line. Not paying attention, you know. Whatever. Lots of people don't walk straight all the time. I don't walk straight all the time."

"But you don't fall either. Your knees don't buckle."

"My knees buckle all the time. I'm old. It happens."

"It never happened to me."

"Well, you're older too."

"So having your knee buckle isn't a sign of HT?"

"Of course not."

"You're saying there are no signs of HT?"

"Right. Not without, you know, testing. Everybody stumbles some times. Not everybody has HT."

"So what would be a sign of HT?"

"I.... nothing. There are no signs of HT. It can't be self-diagnosed."

On and on and on. Three days straight. And while I'm being grilled like a murderer, I have a flash of sickening insight: I could stop this. I could end all of this confusion and chaos. Just a few words from me and it would all be over.

And MW would be absolutely destroyed. Irredeemably, irreparably destroyed. 

One person should not have that power over another. Certainly not I.

***

Here's one for the drunks - a little slapstick the alcys will appreciated.

Set up: I drink a lot, but on the sly. Also, because of MW's - call them peculiarities - about cleanliness, I'm only allowed to drink out of one cup - a tall, grey plastic tumbler. At night it is usually full with some gutter booze concoction of my own creation, but during the day it will be water (the only thing MW allows in the house to drink). What happens is, when I come home from work, I guzzle whatever water is left in the cup to make room for the booze that I'm going to sneak from the upstairs closet. 

Yesterday I came home, found my cup nearly full of water, gulped it down with two, maybe three breathless swallows and run upstairs for the good stuff. 

Then MW hollered for me to come down. A bunch of chores to do before I can even change: wash dishes, put dog out, get food ready, talk some more about why a knee would just buckle like that.... By the time I make it back to the closet, I notice my cup is near full of (I think) water. Two fast gulps and - 

Ho Shit! I'd actually already poured vodka in there before getting called away. 

Damn near blew the top of my head off.

It was a fun night.

2016.04.03

I made it! I lasted the full 40 without drink. My "spite lent" a success!

Of course that was a couple weeks ago and I've been, yeah, fairly drunk ever since.

Remember when I said I was putting off dealing with buying a new house (this one is dirty) because I thought, assumed, hoped I would be dead before my credit came through? Well, fuck it all, that didn't happen. MW applied for credit last week and, hey hey, I was approved! $350,000 to buy a new home! Hell, yeah, let's go! Let's mess up some place fresh - this dump has too much peanut butter smeared on the walls, too many sections of paint ripped away from so many "reminder" notes taped just everywhere. Too many vitamin pills, popcorn, and clumps of boric acid gathered in the corners.

Whoo Hoo! A shit load of debt on my back! I'm maybe two, three,.... five? One? years away from having to place my wife on disability and finding out some way of managing full time care. But, sure.... The counter tops really are dirty. We should move.

Oh God. What the hell am I doing?

Another drink. That's what.

Do I still need to explain? After all this? Okay, the peanut butter is from MW sloppily smearing it on her toast every morning then setting the plates wherever her erratic hands find to land. Kind of like people who keep chickens wondering how chicken shit gets everywhere - I find a big blob of peanut butter stuck to the wall and foolishly ask "how...?" MW laughs it off. She doesn't know, but hey, shit happens. When I ask if I can clean it - no, of course not. She'll take care of it. I can't clean anything because I'm incompetent. That was weeks ago. The peanut butter is still there.

The bathroom wall looks like modern art. MW writes copious "reminder" notes and sticks them there - where she's sure to see them - on a daily basis. Some of the notes: "Don't turn on the car until the garage door is open." "Park safe". "Renew PO Box" (okay, that one gets a pass). Anyway, these notes are taped/tacked up by whatever is available. I made a few rolls of masking tape available so it isn't as bad as it could be, but still... There's a lot of wear on the paint. Finally, MW has a real tough time navigating the "from hand to mouth" journey. Daily vitamins and her recent addiction to popcorn have caused the floors around here to look like we're living in one of those "pop-stick" toys.

Oh, and the boric acid is an ever-present condition of living in the dirty, cockroach south.

And, again... I'm not allowed to clean anything. I'm not even allowed to pick up the errant vitamin pills because they've touched the floor. If I touch them after they've touched the floor, well, the transitive properties of dirt means I've just as well touched the floor with my bare hand. That would be cause for amputation.

You can see why the easiest solution is a new house. Of course you can.

So every free moment is spent driving around, taking down phone numbers, talking to real estate agents. My only drunken hope is, given MW's inability to make decisions, we'll just keep spinning our wheels like this until.... Until.....

The drinker's hour. Four in the morning. I see it every day now. I push myself off the mattress, mentally tell myself - "steady on, Norway. Steady...." and sit on the toilette until the world stops spinning enough for me to navigate back to the pillow. On those rare nights I'm not sweating the sheets waiting for the alarm clock's warning, I hit a wall of nausea and palpation at around six or seven. Heart attack? Stroke? Worse? So far, no. So far, it passes.

So far.

2016.02.21

Last week MW visited some friends who came in from out-of-town. It was a pretty exceptional event, actually, considering there were half a dozen young - some very young - children at the gathering and they were coming from up North. MW has been steadfastly avoided young children and northerners for nigh on three years now (afraid of catching a cold), but she found the courage this time.

Good. She should be spending as much time as possible with friends.

So that was a positive; and to balance it with a neg., MW has become obsessed with moving (our house is dirty and, at this point, it'll be easier to move than clean it). Yes, I still have three months grace while I build my credit by using a Visa card, but after that? My back's to the wall. I'll have to make a very bad financial mistake. Unless I don't last the three months.

That's become my thing: if it's not going to happen within the next few days; fuck it. Ignore it. Hell, something might happen and I won't need to deal with it at all anyway.

That hasn't panned out yet; but it will. It has to.

The only future event I am anxiously waiting for is Palm Sunday. I just looked at the calendar and, Christ, four more weeks? Can that be right? Seems like a long time.

I was a fucking idiot to give up drinking for Lent. And I'm even more a lamebrain for sticking with it. What am I thinking? At this point my religion is based entirely on hate. I can't remember the last time I've thought or said the word "God" without immediately suffixing it with "Damnit". Yes, I told myself it was all about the nostalgia - a return to my Catholic childhood - but there were other alarm bells ringing around the bottles, too. I had been making mistakes at work and at home. Still, deciding to do 40 dry days and nights? Man. Man oh man. What a mistake!

A few days ago I had a dream where I was drinking vodka. It was so vivid, in the morning I felt terrible about breaking my Lenten fast. It turned into one of those mental breakdown situations where, even in the light of day, I couldn't remember if I had or hadn't drank vodka. It wasn't until the afternoon, when the fog finally lifted, that I realized I couldn't have possibly had anything to drink as there is no alcohol in the house.

I have enough troubles without this bullshit. I haven't been to Church in decades. Why did I commit to a stupid fast? And why am I still holding it?

Goddamn it.

2016.02.14

In his autobiography, Carrying the Fire, Michael Collins observes that while piloting the command module across the dark side of the moon, he is abruptly cut off from all human contact. He is separated from all humanity - indeed, every living thing - his is the only known life on that side of the moon. The isolation doesn't last very long, but it is something that clearly gave him pause.

I feel you, son.

And here's another wry observation from the dark side of HD:

Having crazy friends can be a comfort when you're dealing with early onset dementia.

One of MW's friends is a real mess. Nothing exceptional; just the typical noise about bad relationships, "hormonal" issues, and prescription drugs. Anyway, talking with this friend always puts MW in a good mood. After hanging up the phone, she will smile and say, "Well, at least I'm not as bad as J.!"

Indeed.

In other news, I've taken my obsession with nostalgia to the next level. Yes, in my continuing efforts to live the past, I've decided to participate in the Lenten season. See, as a child I used to give up candy for 40. And the whole fish on Friday thing too. It was a pain in the ass, but Catholic is as Catholic does, and I spent many a Spring season rolling Cadbury eggs around the table, waiting for Easter.

Not much point in giving up candy now; and there is no way I could get away with changing my diet, so the only thing left for me to even try and recapture those bittersweet memories is to shitcan the booze for a month and change.

And so I have. Today marks the fifth day without a drink. 35 more to go.

It was time to dry out a little, anyway. I was taking the curves with only two wheels on the rails for a while there.

2016.02.07

I get a few hours away from the grind. I drink. I blog.
I'm listing to "Church of the Holy Spook" cranked to 11 and feeling like shit.
I have to cap the bottle soon. That is depressing as all hell.
I'm not a good man. I'm not holy. I've never once even tried to walk in Jesus' footprints.
But I've never done anything evil. Not truly evil. Careless? Reckless, even? Thoughtless? Sure! Yes. I've been bad. Many times I've acted without regard for the health of my soul (whatever that is) and I'm still constantly fucking up everything... just, everything.
I'm not good.
But. Godamnit. I'm not bad either.
I've never once deliberately gone out and harmed anybody or anything. Oh sure, I've notched plenty of sins of omission and fits of passionate rage in my belt. Still, I've never made a decision - or at least I cannot remember (drunk as I am) ever made a conscious effort to fuck anybody. I've never acted with hostility or malice.
Nor, I must say, have I ever done anything to help anybody that would cause me undue discomfort.
I'm middle of the road right down the line.
Except, of course, MW.
I've given my life to MW. Everything to her. Hoping against hope that it would pay off in the end.
It hasn't. It won't. It's just getting worse. And it will not, can not, get better.
I'm exhausted. I've sacrificed damned near everything I have except the blood from my veins. And every day I get to look into the abyss and see that it is still hungry.
Demanding to be fed.

2016.02.06

Yet another from the files of "...an HD thing; you wouldn't understand."
It takes MW fifteen minutes to brush her teeth. What it is, you see, is an abiding fear of sugar. And chemicals. And chemicals that effect sugar. Anyway, she can't use toothpaste because of the sweetener, so she buys an organic mouthwash; pours a dash in a cap, dips in her toothbrush and goes to town. However, even though it is organic, it is still somewhat sweet to taste, so after every brush she crams a fistful of toilette paper in her mouth and rubs it around to absorb the "sweet". And she rinses and spits a lot as well. A time consuming endeavor.
Yesterday morning she spat and - lo! - mixed in with the mucus and saliva was a tinge of red. Blood? BLOOD! MW fell into an absolute panic.
"I'm going to die. That's it," she kept saying. "I'm going to die."
Let's take a break in this narration and travel back in time; twenty years ago when MW's mother was first diagnosed with HD. One of my mother-in-law's constant complaints was a fear of cancer. She wouldn't go five minutes without slurring out the word "Cancer! Cancer, mully. Cancer!"
You can only reassure someone so often before patience departs and you're left with hostility. As an example, MW used to tell her mother - after spending the better part of a day explaining to the lady that she did NOT have cancer - that she would, in fact, be "lucky" to have cancer. That cancer would be a lot better than what she has.
Cruel, yes. But it was a cruel household into which I married. Although one suffers to stand by and be silently complacent in such base inhumanity, tales told of the abuse and neglect under MW's father's roof kept my tongue still. I may have told MW to calm down - I recall I was frequently trying to calm her down in those days - but I never forbade her from telling her mother how much better off she'd be with the big C.
Fast forward a couple decades and here we are again. MW has cancer. She has cancer. Cancer! Cancer, mully. Cancer! Over and over again.
And, God help me, in my mind.... In my mind. In my mind I say, "Yeah, you should be so lucky."
Of course I don't. No, I use my usual trick - Oh, I always cough up blood. Happens to me all the time. Look, if you want, I could cough up blood right now. See, what happens is, when the weather changes your nasal passages dry out and, well, there can be blood in your mucus. Did you want me to cough blood now? I can, you know. I cough blood all the time.
Had she asked me to, I'd've bit my inner cheek and spat blood. Easy.
Eh, not so easy. You remember that show Homicide? Where they would get a suspect in the box and trip up his testimony with an endless barrage of contradictory questions? Well Andre Brougher's got nothing on MW. I get a phone call from her while I'm at work and for thirty minutes I'm sweating under the hot lights:
When was the last time you spat blood?
Pretty much every day when I sneeze there's some blood there.
But that's when you sneeze.
Right.
What about when you spit?
Well, it's all connected.
When was the last time you spat blood?
Oh, I don't know.
Five years ago? Last year?
I can't.... I can't. I don't normally spit. I normally sneeze.
So how can you say you always spit blood?
I.... It's all connected, you see. The nasal cavity....
So you don't always spit blood?

It's an HD thing.

2016.02.03

So our dog died. Specifically, we had the vet put her to sleep. She was thirteen years old, diabetic, blind, had cancer tumors all over her belly, bladder stones, a UTI, had turned her back on God, and couldn't eat any more because of ketosis - or so the vet said after having spent three days and close to $4,000 keeping the poor thing alive on two IVs stuck in her little paws. At that point, the vet also said euthanization would be a "reasonable" decision.

What a clear-eyed assessment of the situation.

Of course, as the dog had been MW's only constant companion for these last thirteen years, it was a ridiculously hard decision for her to make. Understandable. Now let's run those emotions through the filter of early onset dementia caused by HD and you're set up for some good times. At the vets office, it was almost a comedy routine with MW handing the dog over, then snatching it back; handing it over, snatching it back.... Eventually I gently, but firmly, dragged MW from the room - sobbing uncontrollably.

Right, I know, that's not abnormal behavior. Losing a beloved pet is hard. This happened at an emergency pet hospital (hence the high, high price tag) so we saw lots of weeping people biding their four-legged companions a bitter last farewell. I don't fault MW at all for that.

It's what happened next that is costing a heavy toll.

We gave our dog peace on Saturday morning. MW immediately got on the Internet, found a breeder in Dallas, and arraigned to go pick up another dog. I advised against it; explaining that we needed grieving time, but really just trying to buy more time to get the house back in order after having lost those three days of maintenance to the doggie death watch. No joy. She had to get a dog. We had to drive to Dallas. Four hours there; four hours back.

MW spent those 8 hours on the road fluctuating between wailing tears and talking about the mysteries of death. She talked a lot about her mom - her father having had made a similar decision to pull the plug and euthanize mummy after she contracted HD's favorite killer, pneumonia - and how unfair death was. She started in on how much her mother had wanted to live and how she would never have done what her father did. She informed me that I should do everything in my power to keep her alive no matter what. Oh, and also? I should never put her in a nursing home. She would hate that.

She asked me what I thought about it and I side stepped the issue. What she doesn't know is that I've already drawn up a Medical Power of Attorney, give that responsibility to my brother; then sister (not MW) and explicitly specified NO RESUSCITATION! WITHHOLD ALL LIFESAVING MEASURES! I'm looking for death with dignity even it it's just a goddamned hang nail.

Or a hernia. Driving four hours straight, no breaks, played holy hell on my hernia. Gave me a righteous headache too. MW drove some of the way back, but I insisted on taking over when she started bursting into tears going 80 down I-45. All in all, a very painful experience.

And at the end of all this? We now have a new puppy! Yay!

Except not so much yay. Puppies are a lot of work under the best conditions. Now put a puppy in an HD house where the dementia is making itself known primarily through hypochondria and germaphobia. Since Saturday I've lost five pounds and haven't had anything to drink. I suppose the not drinking might be a good thing, but the weight loss is pure stress and sleeplessness.


The puppy is a teacup MalteePoo. Smaller than my foot. But I'm not allowed to pick it up from under it's belly because I might get pee on my hand. The puppy can never be left unattended on the floor because it might pee somewhere. Also, it might eat something bad that MW has dropped on the floor. (MW is always dropping things on the floor. She knows this; hence the rule about the dog's paws never touching our floor. You might ask why she doesn't just pick whatever it is up when she dropped it.... It would be a good question.) When we're not directly supervising the puppy, he must always be either in its kennel or playpen. The puppy, naturally, doesn't like this so it whines constantly. CONSTANTLY! Not one moment of peace in the house since Saturday night.

Puppies have accidents. Every time our puppy has an accident, something expensive get thrown away - a carrying case; a blanket, a towel. Whatever got pee on it. Pee can't be cleaned, you know. It has to be destroyed! You may ask why we don't use those pee pads? Well I suggested it; but those are no good. They just allow for the pee filth and germs to have a home. No. We have to use blankets and towels and they have to be thrown away with prejudice once contaminated.

And this is just a sample of the germaphobia. Let's briefly touch on the hypochondria, shall we? Since the puppy has been in our house, MW has been anxious about catching ringworm, tapeworms, and that one disease dogs can get that they pass on to humans (I have no idea what this could be, but MW knows what it is; she just doesn't know the name of it).

Here's a sample of how it has been around Casa Muncie these last five days:

I'm sitting outside with the dog. This, I admit, is good. Weather is fine this time of year and it is always fun watching a puppy romp - catch leaves, tugging flip-flops twice his size around the yard, getting in fights with pill bugs and losing because he's so small.... Then MW calls for me to do something in the house. I pick up the dog and go in. NO! I can't hold the dog! Now I have pee on my hands! So I try to put the dog in his playpen. NO! The playpen is wet because the dog spilled water! So I try to use my free hand clean up the water. NO! If the dog stepped on pee earlier, the water in the playpen is full of pee, too! I'll have to use a glove. But I can't put on gloves while holding the dog; and I can't set the dog down, so I'm stuck. Then, angry, MW comes over to clean the playpen. Finally I can set the dog down. Once down, the dog immediately starts whining, loud. So loud, I can't hear MW as she continues to ask me to do things as she's storming around the house. I follow, asking questions, which just pisses her off more. She's yelling, the dog's whining, the house is in shambles because I haven't been able to clean anything. On and on.

I'm exhausted; even more so than usual. The only thing I can do is constantly remind myself that this will, most likely, be MW's last dog. Have to make the best of it.