2014.12.31

Two nights ago the garage started smelling like someone spilled nail polish all over the place, probably originating from old paint cans or something. Oddly, this did not panic MW as much as I thought it would. She did suggest we check into a hotel that night, but it was a half-hearted attempt at paranoid dementia and it wasn't too difficult to talk her down. I recommended a trip to the hardware store for a carbon monoxide detector, applying the logic that as long as we were clear of a gas leak, we were safe.

Just between you and I, I did not put a battery in the detector. Hell, I wasn't sure the paint fumes or whatever wouldn't set it off, and that would have been a disaster. Besides, I figured even though the garage is connected to the house, the fumes probably couldn't seep through the walls and if they did, well, dying in our sleep from carbon monoxide poisoning wouldn't be the worse thing that could happen, you know, looking at it long run.

And, yes, I was drunk when making that decision. Ho! I wouldn't wish the vodka dreams I had that night on anybody.

Anyway, we lived to see another day. Now you might be wondering why I didn't just clean out the garage myself to get rid of the offending smell? Tch. You haven't been paying attention. MW would not let me clean out the garage. Not even if I wore gloves and a mask. She insisted on calling a junk service to come and haul everything - every blessed thing - out of the garage as scrap.

Fine.

Tools, lawn equipment, bikes, shelves, anything you would expect to find in a garage: trash it all. Don't bother selling it or giving it to charity, just chuck it.

Good. Great.

That's what I learned over the course of 2014: how to let it all go. Last December I probably would have tried to reason with MW, spent a lot of time and energy arguing with her, but not now. Not anymore. Whatever MW wants, she gets - any decision she makes is the right one and will not be questioned, only encouraged.

Who knows? Maybe this attitude will get us through yet another year.

***

Clearly I'm not one to make resolutions, but there are a few things I'm hopeful to accomplish in 2015.

First and foremost - I would like to walk around the campus of the University of Houston one more time. This doesn't sound like much, but it has been gnawing at me since I had that fit of near crippling nostalgia last Summer. Recall how desperately I wanted to revisit my hometown in Kansas? Well that will never happen, so I had the second-best idea to foot-cruise my alma mater and walk those hallowed halls where, for a very brief time, I was in love and ridiculous.

UH is maybe twenty minutes away from my house, so I'd planned on making this trip during the Fall on a weekend when MW was working. Unfortunately I got wrapped up in a trial and most my Sept./Oct. weekends were spent at the office, so I never got the chance. Then Winter came with the short, dreary days and this is the type of event that requires warmth and sunshine.

Now I'm thinking sometime in the Spring. Around my birthday, perhaps. Can't you just picture it? Flowers in bloom, sun-fed steam rising from the footpath between the Quad and the Towers? At risk of being tagged a creepy old man, I could visit the OB beach and maybe spot a sunbathing beauty. Ha! I remember spending time there with a stunning young girl, talking about blues music - Bobby Blue Bland and BB King - under a midnight moon. She never wore shoes. The bottom of her feet were disgusting. Or I could try to sneak into Taub Hall - hell, creepy old man is as creepy old man does - and see who is living in my old dorm room now. Tell whomever it is some tales of love and loss.

Of course this all depends on if MW can continue to work weekends for a few more months. If not, then I'll never get the chance.

It is New Year's Eve. I'm at work drinking vodka and seltzer because nothing else is going on. It's getting to the point now where I can tell it's time to stop writing. Goodbye, 2014. You fucking cunt.

2014.12.30

I'm this close to closing the door on one of my most vexing problems. I've finally convinced MW that she needs a sippy-cup. See, after one of her many, many spills I used the cowardly I'm-joking-but-not-really approach to suggest she needs a sippy-cup. She laughed then, surprisingly, agreed that it would make sense. After all, she's spilled enough water around the house to fill a swimming pool. The problem is finding one that
a) isn't made in China (everything made in China is poison) and
b) is the right size.
Most sippy-cups, as you can imagine, are quite small because they're for babies. *Sigh*
You may wonder why MW doesn't just use a sports bottle. Nozzle. Nozzle's too difficult to drink from.
Anyway, this gives me something proactive to do - a treasure hunt for a grown up sippy-cup made in the good ol' USA. Or Canada. Anyplace but China.

***

Happy New Year's Eve Eve! I never expected to close out 2014 in basically the exact same place it started. For one thing, the goddamn disease is degenerative so it has to be getting worse, right? Right. What's at issue, I suppose, is how slo-ooo-oow it's degenerating. I went back and re-read the older posts and the other reason I thought things would have to change before 2015 was the fact that I couldn't see myself living long the way things were going back in late 2013/early 2014.

But it's funny how you get used to bad situations. Kind of like that saying "used to worry about rich and skinny 'til I wound up poor and fat." I guess I used to worry about sane and sober 'til I wound up fucked and drunk.

I've adapted. I don't need to sleep much anymore. Outside of work, my only thought is taking care of and protecting MW from the reality of Huntington's Disease. I can barely even remember a time when I wanted anything more out of life except to just not have MW go off the rails crazy with worry.

So I raise my glass to 2015. Come on, motherfucker. Come on.

2014.12.29

Whenever I start to think I'm being overly sensitive about MW's HD symptoms, something like this happens: last night MW couldn't sleep because she was worried that the frozen meal she normally eats for diner contained too much sauce. The sugar from this extra sauce, she complained, would keep her awake.

Can't sleep when you're worried about sugar keeping you awake.

Well, just more of the same, right? Yeah, I suppose. Except normally I can at least try to defuse MW's nonsensical worries by offering practical arguments against whatever boogie is keeping her awake. I couldn't do anything with the extra sauce conundrum. A gentle suggestion that she was mistaken about there being more sauce than usual almost created a bigger problem ("I'm not LYING about this - there was more sauce!") and the proposition that condensation from the lid dropped back into the sauce thinning it out so it appeared to be more didn't gain as much traction as I'd hoped ("But you cook it the same way, in the same pan every night. So that doesn't make sense.")

Another long night, but I'm used to that.

To catch everything up: Christmas at my bro's went well. We stayed a couple hours, talked, watched some TV, and when it was all over MW had nothing to complain/worry about. Love you, bro, and your family!

Maybe I am hypersensitive - maybe they didn't notice anything at all - but there were a few times during our Christmas visit where MW got confused during the conversations or didn't understand something on the television and I had to explain it and, well, I'm sure they all noticed. But they didn't say anything. Love.

Something that really scared me: the day after Christmas I'm at work and my mom calls the house and, holy shit, MW answers the phone! Last time those two talked it was an all out fight. This time, apparently, things went well. MW told me about the conversation and nothing bad was said. Hunh. Still, I'm seriously thinking about sending my mom an email telling her not to call the house anymore - it is too risky. Mom can't be trusted not to say something that might send MW into a tailspin. In fact, even though MW told me the conversation went well, she didn't sleep at all that night. She didn't blame it on the phone call, but there you are.

Finally, the night before Christmas Eve (Christmas Eve Eve) I experienced the return of the glorious fucked up vodka nightmares! I won't even try to describe them, but holy shit it was a rough night. See, a vendor gave me a bottle and I drank half of it at work before getting on the bus and I guess it stuck with me until bedtime. Nasty business.

2014.12.18

MW runs the household finances. She's insistent that I am not capable of paying bills on time so this has become her responsibility. Alas, possibly due to the encroaching dementia, her concern over paying these bills has become quite pronounced to the point of being irrational. So yesterday we spent the majority of the evening planning ways to remind her when and how to pay bills.

I already had a calendar entry on my cell scheduled to go off every month on the 15th, but that never really worked. In actuality, I start reminding MW to make payments on the 10th and continued to remind her up to the 30th. Yes, pretty much every day of the entire month I remind MW to pay bills.

And last night she argued with me that I wasn't doing enough help her, see, because I even though I was telling her about these chores at least once a day, I wasn't telling her ALL THE TIME, ALL DAY LONG. Also, instead of just telling her to pay bills, I should instruct her to go sit at her desk because that's the only way she'll remember which bills need to be paid.

It took awhile, but eventually we got that settled. She had me add another reminder on my cell to tell her to go sit at her desk every night at around 9:00. I asked for an earlier time, because paying bills can be upsetting and having her upset that late at night is just begging for trouble, but that request was shot down.

You may wonder why I don't just ask to take over the finances. Well, I have. In the past. And that caused a pretty substantial breakdown - the upshot of it being that I wasn't trustworthy enough; after all, if I can't even remind her to pay the bills correctly, how can I be trusted to actually pay them myself?

HD logic at its finest.

***

I'm aware that sometimes these entries just seem trivial. I'm sure there are many people out there dealing with much worse behavior from their spouses or family members. The problem is, even though this starts off as petty bullshit, I know it will only get worse. The only thing I have to look forward to is someday, someway, somehow MW will have to start taking some-sort of medication. To help her sleep, to chill her out. The meds made her mother manageable - just lay in bed all day watching TV, sleep the sleep of the drugged out all night. For years. Maybe even decades.

Pretty fucking bleak, but that's the best case scenario I've got. And so I'm documenting the small things, waiting for them to become big things.

There is no hope here, and, yes, it is life and death. Wasted life, ugly death.

2014.12.16

I hate this time of year.

Unrelated to that statement; last night MW swerved the car into a curb. Hard. Only cosmetic damage, fortunately, but how it came about was unsettling.

MW is very concerned about the lives of our cross-the-street neighbor. She's never once talked to them, but believes the man of the house dumped his girlfriend (maybe wife) for a younger girlfriend (maybe wife) and is now putting himself at financial risk trying to make the young girl happy by buying her new cars and renovating their house. MW may be right about this, but I really don't care and try very hard to steer her away from watching them through the window then talking about what she sees. In fact, when the younger girl moved in, I spent a whole lot of time trying to convince MW that the man of the house probably didn't actually kill his old girlfriend (maybe wife) to get rid of her. I'm not sure I was 100% successful, but at least if MW still thinks he's a drug-dealing murderer, she keeps it to herself.

This sounds like a joke or a quirky little sit-com scenario, but it's not. MW actually lost sleep worrying our cross-the-street neighbor killed his girlfriend (maybe wife) to replace her with younger tail. Well, maybe it is funny. I'm just too tired to know the difference anymore.

Anyway, last night the younger girlfriend (maybe wife) was driving up while MW was pulling out and they wound up with their cars at awkward positions on the street. Eventually the situation righted itself and MW was able to drive away, but the encounter unnerved her so much that, when talking about it, she got flustered and ran the car into a curb.

Hard.

What if it wasn't a curb? What if it had been another car? How much longer can I let this go on?

Somebody? Anything? Help?

Right.

So, back to why I hate this time of year: they locked up the park behind the Houston Historical Society to prepare for some stupid holiday party and I can't walk under Jane Ellen's tree anymore. This is fucking brutal. First, understand that Jane Ellen's tree has been called the most beautiful tree in Houston and I wouldn't disagree. A grand, sprawling oak with heavy branches that crawl across the ground as well as clusters of limbs and leaves that cast ever-changing patterns of shadows. The word for it is magnificent. I used to eat my lunch on a bench there, but since we've moved offices, I only have time enough to walk over for a quick visit. Still, it is invariably the high point of my day.

Also, I've decided that's where I want my ashes spread when I die; under Jane Ellen's tree. I'm sure this is against some law - so many bullshit laws these days - and it may not happen, but it makes me feel good, walking under that amazing tree, feeling the peace and calm of that swath of dappled ground.

Someday....

But now, because of these goddamned holidays, even that little sliver of serenity has been locked away. Brutal.

***

Update: Just got off the phone with MW. As soon as I picked up she asked if I ever lost my balance.

Oh, I know the answer to this one: Yes, I loose my balance all the time. Lots of things can cause that. It is nothing to worry about.

Then she asks if loosing your balance is a sign of age.

?

Well, I say, sure. It can be easier to loose your balance as you get older.

No, she corrects me, not "age", but "H". You know. "H".

She means Huntington's - she just won't say the word.

No. Of course not. Loosing your balance can be so many other things than "H". It isn't even a recognized symptom of "H". It's nothing to worry about.

On and on and on.

And I'm sure I'll be talking about this tonight when I get home.

Something to look forward to.

2014.12.14

What was it last night, Wayne? What little bit of nothing kept MW up all night worrying? Hemorrhoids? Pimples? Mouthwash? Tell us, please. It is sooooo interesting.

Right. This has become repetitive. But here's what keeps me in the game: a few night ago, just after lights-out, MW started coughing/choking. Lights-on now and she's worried.

The coughing had been caused by what she felt was food in her throat. Why? She ate hours ago? Should there still be food in her throat?

Of course, I tell her. Happens to me all the time. I'll cough/choke on food anytime, anywhere. Perfectly normal behavior.

This abates the worry and, eventually, MW sleeps.

Me? I stay awake thinking, wondering - God, I'm such a good liar. Maybe even good enough to let HD kill MW before she even figures out what's really going on? And wouldn't that be a coupe.

What the fuck am I doing? Helping MW or the disease? And is there even a difference anymore?

***

Home from work, hit the door, head to the sink and start washing dishes to cook diner. MW stops me, pushes me aside saying she'll clean and cook for herself tonight. I know nothing good will come from that, but what choice do I have? I try to sound cheerful and suggest she let me take care of it while she relaxes in front of the television. No soap. She'd been sitting in front of the TV all day and got annoyed, maybe thinking I was making fun of her laziness.

So I backed off and let her have the kitchen.

When she'd finished, I went in to cook my diner. The dishes were covered with soap bubbles and many had chunks of food still stuck to them. So I had to wash them again, being very careful not to let MW see me doing so or else, I knew, she'd get pissed. Complain about how useless I am when it comes to taking care of the house and how she's the only one who really knows how to clean and I should just let her take care of everything.

I've received that rant before, lots of times, and it really kills an evening.

So I was sneaking around the sink, washing on the fly, when she complains about there being chicken in her food. Turns out she'd prepared the wrong frozen meal and had already eaten half of it before noticing.

Now this is real trouble. She is certain she won't be able to sleep because the frozen meal she'd just ate had too much sugar.

Quickly I dumped what was left in the trash and assured he she really hadn't eaten much, not enough to make a difference, and started cooking the correct meal.

She seamed dubious, but after around a dozen more reassurances that she would be able to sleep, she calmed down.

Part one. Part two came when, close to bed-time, she asked for one of her floss picks to wedge some food from between her teeth. Oh no! The floss is coated with a mint flavor - a mint flavor that certainly contains sugar!

She grabs a roll of toilette tissue, wads up a fistful and crams it in her mouth to blot out the mint flavor.

Oh now. Now for sure she won't be able to sleep what with all the sugar in her body.

This time the story has a happy ending. It was another one of those odd, but welcome! nights where MW fell asleep almost as soon as her head hit the pillow. I honestly don't understand it - she seemed so riled up just before I turned off the light, but within moments I hear snoring. No complaints, it's just kind of weird. Anyway, she did wake up a few times during the night to ask how long she'd slept, but these interruptions were short and, overall, she got a good nights' sleep.

2014.12.09

Yesterday MW got criticized at work for taking sloppy notes and her manager suggested she speak with more enthusiasm when talking to customers on the phone.

Disaster.

She spent the evening in a near panic state; worrying she'd be fired, wondering if the boss hates her, trying out voices that sound more enthusiastic.... Fortunately she did calm down enough to get a full night's sleep, but it brought to light the fact that, though I can shield her from the disease while around the casa, at work she's on her own. I can't prevent her coworkers from addressing the fact that she's slowly loosing her mind. Entering sloppy notes in the computer, for example, won't improve. That'll just get worse. And talking to customers on the phone - which is the biggest part of her job - will also get worse as the stuttering, slurring, and dementia take hold.

I watched MW as she railed against the evaluation last night. When excited, her face contorts into a frightening grimace and her body movements - arms and hands especially - are disjointed and erratic. She looks like a girl from one of those stop-motion Japanese horror films. Chor-Ring-ah.

"Thank you for calling! How can I help you!" she wails, a grotesque smile on her face, her voice a parody of eagerness. Then she asks if that sounded enthusiastic enough. That's how, she says, she'll have to answer the phone from now on. Especially when talking to people with Spanish names because her boss is a Mexican and those people look out for each other.

She's not joking.

***

Fifteen years ago my brother-in-law wrote a book. He's been editing it ever since. Now, once again, he's started emailing me asking for comments and critiques. I've already read the damned thing, many times, so I skimmed the revision and spouted off some lame, rehashed advice. Truth is I've lost all interest in writing and literature. Oh, I still read, but only old science fiction and mysteries. That's about all I can handle these days. Makes me wonder how much damage I did staying so drunk for so long?

Besides, my bro-in-law hasn't seen his sister in over a year. None of her family has seen her, or even spoken with her, in over a year. You would think he'd ask about that instead of his stupid book. Hell, I might have killed her and buried the body in our backyard for all they know. Useless tits.

2014.12.08

I was premature thinking I'd quelled the great burp panic. That night MW and I lost sleep worrying about burps. At one point she asked if anyone had ever died from excessive burping. I assured her she would be the first.

Other HD behaviors of note: Last night MW informed me that she'd bumped her head. She took me to the place where it happened, showed me how it happened, and asked if it was anything she needed to worry about. The skull is very hard, I said, and lightly bumping it against a wall is common and harmless.

Saturday MW dropped her lunch at work. Recall that her diet is incredibly complex and regulated. Here; I might as well take the opportunity to document what and how she eats. Also note that, except for the three days she doesn't work - Tu-Thu - I'm responsible for cooking and cleaning. And even on those days I still have to clean as the dishes will be piled up when I come home, and cook diner as well. Anyway, without further ado, MW's diet:

Breakfast (before 8:00am):
Two pieces of bread with peanut butter
Eggs (two with yoke, three no yoke)
One banana
One spoon of yogurt
One spoon of sour cream

Morning snack (between 10:00am and noon):
Half piece of bread with one slice of cheese

Lunch (between noon and 3:00pm)
Frozen meal (the same kind every day)
Fish (either Salmon or Mahi Mahi)
Beans (Garbanzo, Black Eyed Peas, and Black Beans; each ground in the blender to make a sort of paste)

Afternoon snack (between 3:00 and 6:00)
Half cup of cashews, rinsed to remove the salt

Diner (after 6:00, before 8:00)
Eggs (two with yoke, three no yoke)
Rice (one cup)
Frozen meal (the same kind every day)
Chicken (ground up in the blender)
Spinach

Evening snack (around 8:00):
One spoon of sour cream

This has been going on for about half a year now - no variation whatsoever. If anything changes, MW becomes excessively worried that she won't be able to sleep. Can you imaging eating the exact same thing every day for six months? Man, she won't even drink anything but water! On the one hand, that discipline is incredible; on the other, having to deal with this on a daily basis is maddening not to mention ridiculously inconvenient.

For example, dropping her lunch on Saturday created a crises. MW couldn't make a substitution so she had to wait until she came home to eat. Then, almost as soon as she finished lunch, she had to start eating diner. Would that much food eaten so late in the day cause her to loose sleep?

Maddening.

Also, as I've mentioned before, the only way we can go anywhere is to make short trips so we're back in time for whatever meals needs to be eaten, or to pack the food and take it along. And, no mistake, it is a lot of food to prepare and pack.

Inconvenient.

Sunday she bumped her head; Saturday was the dropped food; Friday we were still worried about burping.... Still, through all this, the sleep pattern has been fairly consistent. MW will go down around ten at night, wake up at midnight to ask how long she'd slept, then stay down until seven or so in the morning. The only addition to this routine is she's started talking in her sleep now, usually around 3 in the morning. Boring, work related stuff; but spoken loud enough to wake me up.

I'm tired. All the time.

And, of course, she continuously drops things, spills things.... and frequently chokes on foods and liquids. Not good.

It's more difficult to gauge the dementia. After watching the trailer for the Exodus movie, MW asked if Jesus was a real person.

Um. Yes.

And she had a follow up question: So the bible is true?

How... how do you even answer that?

I explained that Jesus was real, but only Christians believe he was born of virgin, son of god, resurrected, all that.

Oh, MW said, I believe he was resurrected.

Like, 60 seconds ago you didn't even know if he was a real person, I said. How can you believe in the resurrection?

Well, she explained, I know god is about faith. I thought Jesus was the same thing. Faith based. I've always had faith that he was resurrected.

You tell me: dementia or transcendent insight?

If this seems glib to the point of cruelty - making fun of the handicapped, Wayne? Big man - well maybe so. I guess I have a problem separating the disease from the person. I've been the disease's caretaker so long now, I have a hard time seeing the person that was MW in there at all anymore. And I don't have much respect for that fucking disease.

***

I've stopped drinking. Yeah, again. Blame it on October this time, and the worse Halloween ever. I was part of an intense trial during that month and couldn't drink because I was working too much. Then, when it was over, I tried to start drinking again but it made me very sick. So sick, the next day I couldn't even face the bottles. I poured it all down the drain.

Don't applaud. Throwing it away was weakness; not strength. I should have manned up and taken the medicine. Now, without my alcohol crutch, I'm a pathetic, hobbling mess. The long hours at work have left my back stiff and my legs wobbly. My shoulders ache and I walk hunched over. I'm morbidly depressed and can't sleep at night. I've put on weight....

I miss the elation and confidence I got from the bottle. Walking around drunk, man, I was bulletproof. There was a swagger with my stagger. Delusional? Hell, yes. I'm sure I was just as much an ass-clown then as I am now. Probably more so. Still, I ache for the escape drinking provided. Oh, to have those weird vodka nightmares back again! At least that would mean I'd be sleeping.

2014.12.04

You play to the level of your competition; up or down. In this case, the opposing team is MW's nascent Huntington's Disease behavior. So my game is pretty much just functioning right now - hiding at work, cooking and cleaning around the house, and hopefully getting a little sleep at night - and if I can do that much without breaking a plate or spilling my drink, then hell. I win. No use trying to improve things or in making any plans - that would be setting myself up for defeat. Just get through each day with some semblance of normalcy in my actions. That's all I need to do.

For the record, here's the recent playlist of my opponents offensive:

MW called me at work today worried that she's been burping too much. She asked if burping a lot was normal and  I assured her that I have also burped too much on many occasions. This calmed her down, but Jesus Christ.

Holidays are hard, but this year Thanksgiving was exceedingly cruel. Partly because the day of was so good: we went to my brother's house, saw all the family, left before diner, and at no time did anybody inadvertently say or do something to upset MW - a very rare blessing indeed because just about anything can set her off. The next day, however, MW reached back into the past to find old injuries to drag forth and mull over. This managed to kill the rest of the vacation with bitterness and tears.

On the chorea side, her exaggerated movements are making it difficult to have her in the kitchen now and she'll spill her drink or drop her food more often than not on a daily basis.

And, of course, sleeping is still my opponent's number one weapon of choice. Every night MW asks "Do you think I'll sleep?". I always answer, "Of course you will." But it doesn't always work out that way. Most nights she'll wake up at least once, usually around midnight, to ask how long she's slept and then makes me run some errands (fetch water, adjust thermostat, etc.). She may sleep after this, then again, she may not. Those are the bad nights.

Also, she's started setting the AC down to 60 degrees at night. Freezing! The reason for this is because it is winter, but MW still wants to feel a cool breeze in the house. So she has to set the AC low enough to run all night, no matter how cold it is already.  

Finally, her hand. Every night she asks me to hold her hand as she falls asleep. And oh how the blessed thing twitches and jerks and spasms. Its like she's playing an imaginary piano - a song with absolutely no rhyme or reason.

There I am. In the dark, holding MW's hand. Feeling the disease. I may have won the day, but it will take the night because it never gets tired and it doesn't need rest. And time is on it's side.

2014.11.26

MW works part-time weekend hours and getting her prepared is always hectic. I wake up early and spend an hour or so in the kitchen cooking and packaging her food, but she usually doesn't start getting ready until about ten minutes before she has to leave and then it becomes a mad rush of can'tfindits and whereisits? Last Saturday, well past the time MW should have already left for work, I called out after her as she went into the garage, "Wait! You're not wearing pants!"

She came back in laughing. "Did you really think," she asked, "that I was going to leave without putting on pants?"

Well. Yes.

And that pretty much sums out how things have been going recently: I'm super-alert and guarded against coming disasters while MW continues to function fairly normally.

Certainly her regimented diet and hyper-sensitivity towards sleep are a hindrance - for example, tomorrow - Thanksgiving day - we won't be able to eat with our family or friends because she's worried that taking different food will keep her awake, and she has to be home exactly on time for both lunch and diner so we can't make plans with people which might interfere with that schedule.

But it has been over a year now since I started this journal and MW is still able to hide from HD and live a modestly productive life.

Still, the holidays are hard. I'm always scared someone will say or do something to upset MW - maybe even say something about her behavior or clumsiness - and that'll topple this house of cards right over.

Tomorrow is the first test. Then Christmas. And if we make it through that, who knows? Maybe we can keep chucking peanuts at the elephant in the room for another year.