2016.07.29

When taking care of someone with HD, life becomes skewed. Even away from home, I have to check my behavior towards coworkers. Regular conversation and interactions have become tricky for me. I've grown used to my role as a caretaker and it permeates throughout.

It isn't necessarily a bad thing - in fact, at work I'm often praised for my patience - but sometimes I earn a "what the fuck?" expression for being too attentive or servile. Also, since a significant part of dealing with early onset dementia is trying to calm the chaos, I can be overly Pollyannaish when break-room talk turns to personal hardships. "Well, at least you're not dead," are words I've had to stop myself from saying on numerous occasions.   

And then there are those wonderfully bizarre occasions when real life becomes as absurd as HD life. These are the times when I don't feel quite so bad for all the dubious behavior and lies I've used to shield MW from the truth.

Recall earlier in the year when MW was looking to buy a new house because our current house is dirty? Anyway, around that time they were building out an area in our subdivision, about two blocks away from where we live. MW visited the builder frequently, even got approved for a loan, but in the end decided she couldn't buy one of those houses because they were located off a through street. She said it would be too easy for a car driving down that street to lose control and crash into any of those houses. Not worth the risk.

What should I have said? "That's nothing to worry about, dear. The street itself is less than two miles long, the speed limit is 30 mph, and there is a stop-sign at the middle intersection. Even if a car did lose control, it wouldn't be going fast enough to break down the fence and cross the sizable back yards of those houses. If you're interested in moving into a house there, you shouldn't let this unreasonable fear stop you."

Of course I didn't. I agreed with her. I said that was a wise and smart decision as cars are always losing control and plowing into houses. Happens all the time.

And by doing so, I helped prevent her from buying the new house she wanted. And I felt like a total asshole, too.

But this morning? A car lost control and rammed into one of those houses. No, seriously. Just like MW said it would. A mini-van banged down the fence, tore up the back yard, and smashed right through the wall of the master bedroom.

News helicopters parked over head broadcasting the drama; an ambulance for the people living in that house who were cut by flying glass and life-flight came and whirled away the severely injured driver. Interviews with police worried that moving the car might cause the whole house to collapse because of structural damage. It was quite an event in our sleepy little subdivision. 

Well now. Maybe I'm not such an asshole after all.

2016.07.08

Last week MW cut her toe, nobody is quit sure how, but when I was helping her remove the Band-aid, I had a thought that I might keep it, send it to a lab, and have them analyze the blood for HD; not to confirm the condition - that ship has sailed - but to find out her repeat number.

Yeah, I know it doesn't really matter, but I'm intensely curious. I understand the mutation tends to be worse on subsequent generations, and I remember during the early stages of my mother-in-law's HD journey it seemed like somebody tossed her off a cliff. From walking, to wheelchair, to bedridden in three blinks of an eye. 

Of course time was different back then. We were young. Life moved fast. Nevertheless, I've been writing this journal for almost three years now - three - waiting for MW to go over that same cliff, but no. There she is on the ridge, still pacing back and forth.

In keeping with the analogy, when I'm around, I can walk with her, try to steer her away from the edge; sometimes it seems more like dragging than steering, but we're functioning. Its when I'm not at home....

A few days ago I called MW to pick me up from the bus stop. This is our normal routine as she will not let me drive a car. She insists on dropping me off/picking me up. Anyway, she didn't answer. Half an hour, an hour; no answer. You can imagine the dire thoughts crowding my mind. There are no friends or family I can call for help; so should I call the cops? Is it really 911 if your wife hasn't picked up the phone for an hour?

Eventually, MW calls my cell. Turns out she just fell asleep and didn't hear the ringing.

What a relief!

Then, when we get home, there's a terrible burnt smell all through the house and she admits that she fell asleep with something cooking on the stove.

...

Okay, no big deal. Mistakes happen. Let's just keep strolling along the edge. 

2016.06.23

Caring for someone with Huntington's Disease requires a committed team of doctors, therapists, friends and family. 

Right. MW has me. That's it. And I'm kind of a fuck-up.

However, last week I brought on board a new teammate - Amazon Echo Alexa, a glowing cylinder which listens and talks and reminds you about calendar appointments and to-do lists. 

I've never really put much faith in technology - in my experience the "garbage in, garbage out" axiom proves true more often than not - but I must say I've been pleased with Alexa so far. All MW has to do is say her name then follow with a task: "Alexa, to do list, clean the bedroom" then, later, ask; "Alexa, what's on my to do list" and she'll get a run down of everything on the list.

So now, instead of the dozens of sheets of paper taped up all over the house, there is just one note taped up in the most frequented rooms that reads; "Ask Alexa"

Nice. 

And, not only is this good for eliminating the HD wallpaper, it also serves as a sort of speech therapist. Alexa is pretty sharp, but you still have to talk clear and concise when giving instructions. Huntington's victims often slur and stammer when speaking, so MW has to concentrate and work a little to get the words out right when dealing with Alexa. I feel this is good practice for MW.

And later I can log into the computer, access the list, and clean it up so it makes sense.

Finally, a little help.

***

Unfortunately Alexa is no help whatsoever with pest control. Yesterday morning MW saw a tree roach in the bathroom and we are all still dealing with the ramifications. Last night we didn't get much sleep because MW kept changing beds, terrified that there might be another roach somewhere in the house. Recall that the only place she feels comfortable sleeping is the sitting room where we've lined the walls with sofas and blankets tacked up to filter out lights. Well that room is adjacent to the bathroom so it was a no-go last night. Instead, she tried to sleep upstairs. 

When that didn't work (too much light; also, afraid of waking up groggy and falling down the stairs) she came back downstairs. 

However, visions of roaches soon chased her upstairs again. 

Eventually she wound up sleeping in her usual place, but by then it was one in the morning. I was exhausted. Note that every time she moved beds, I not only had to move all her pillows/blankets, I also had to move the TV and cable box. MW needs TV to fall asleep. I probably made around 20 or 30 trips up and down the stairs carrying heavy loads each time. I imagine it would have hurt my hernia more had I not been pretty drunk last night; so there's the silver lining I guess. 

This morning MW was still complaining about the roach, which means we'll probably be doing the same thing tonight. Alexa, to do list, buy more wine. 

2016.06.13

Oddly, MW's mental functions seem to be... not improving, not necessarily, but she is functioning rationally at a slightly more elevated level than usual. Meaning, she's getting shit done around the house; hiring people to clean, starting home improvement projects, even making plans to meet with friends. This part is encouraging, however, as if to mitigate any feelings of hopefulness, I've noticed an increase in the severity of chorea. She constantly drops things, it's impossible to hand her stuff and when she tried to give me something I have to grab it like I'm snatching my lunchbox from a teasing bully. 

Also, I'm certain she'll quit her part time job soon. They are transitioning her to a new department and she's nervous about the work. And in subtle ways, I'm encouraging her to quit because I'm afraid somebody at the job will say something about her behavior or appearance that'll set her off. Just another of those HD "no win" situations: if MW doesn't have a workplace to go to, co-workers to socialize with, that's more time for her to sit around the house going crazy; but if she does go to work she's exposed to external factors I can't control. What's the right thing for me to do? 

Drink.

And that's another problem - now that MW is moving to a new department, even if she stays at the job, she won't be working weekends. I will never be able to drive to the liquor store again. So now I'm pretty much a the mercy of the CVS next to my office; wine only - and I've reached a level of sophistication where wine, yeah, doesn't really cut it anymore.

2016.05.16

Is it possible I am dealing (or trying to deal) with "survivor's guilt"? Because unless something untoward (or incredibly lucky) happens, I know MW, my partner, will die within the next ten, maaaaybe twenty years. Where will that leave me? A survivor. With guilt.

Survivor's Guilt. The term connotes war. So does it apply here or is it an overstatement? Interesting question.

Anyway, that latest weapon in the enemy's arsenal is uniquely wicked: last night MW accused me of trying to kill her. Poison her, to be exact, by putting Clorox in her drinking water.

She came to this conclusion after sniffing her bottle and deciding it smelled like Clorox. Of course, I'm the one who washes the dishes; also, I'm the one who always fills her bottles, ergo, I'm the one who poured bleach in there.

It was odd in that she really was worried about it, asking me numerous times why the bottle smelled like Clorox. Since I was driving, I couldn't stop to smell it, but I just shrugged and said "dunno". After awhile, she asked if I was trying to poison her. I laughed, thinking it was a joke.

It wasn't.

When we got home, I sniffed the bottle: not anything close to Clorox - possibly a little soapy because it hadn't been rinsed thoroughly (mea culpa) - then I drank it all to show it wasn't poison, but the damage had been done.

She seriously thought I was trying to poison her by mixing a little bleach in with her water.

It didn't turn into one of those disastrous, protracted situations, but it was worrisome. At one point she tried to back out of it, telling me that she had only been joking, but then she went on about how she thinks those kinds of thoughts because she watches a lot of TV and husbands are always killing their wives on TV.

I told her not to worry about it; I hadn't taken her seriously. Also, I understood where she was coming from - TV is pretty terrible - and, most importantly, I hadn't been - nor would I ever - try to kill her.

It blew over fairly quickly, but that was some next level shit. It isn't easy taking care of MW under the best conditions. If she starts thinking of me as "the enemy"...?

2016.05.09

Today's lesson: How to succeed by fucking up.

Since the knee buckling incident, talk at Casa Muncie had been whirl-pooling around HD like a sink that won't drain. MW would not/could not stop obsessing over the possibility of her having the condition. My job, then, was total reassurance that she does NOT have it. It is, after all, impossible to self diagnose the condition. You have to be tested for it, otherwise you'll never know for sure. So, if you won't get tested, the best thing is to just live like you don't have it. Yes?

Over and over and over again. Constant reassurance. But the interrogation... the never ending questions. Hey, if you need to know just how great a liar I've become, here's a few samples:

MW: "You've studied HD. Knee buckling is not a symptom?"

Me: "Right. Knees buckle on everybody, all the time. My knees buckle all the time. I don't have HD, so...."

MW: "Then what are symptoms of HD"

(We'd spent 15 years watching her mother go through the process. She knows good and goddamned well.... never-mind)

Me: "There are no symptoms. You'll never self identify symptoms. You can't self diagnose the disease. You just have to live your life like you don't have it."

MW: "My mother couldn't walk a straight line. Should I try...?"

Me: (blocking her path) "Wouldn't prove anything. Lots of people can't walk a straight line; when they've been sitting or as they get older and their legs get tired. Whenever I stand up, I stagger all the time. 

That last part's no lie. I'm drunk all the time; so, yeah, I stagger. Want more? Here's another:

MW: You would tell me, right? If you thought I had it?

Me: Of course.

MW: Because if you thought so, we'd have to sit down and talk about how we would manage it.

(Crash! Boom! Bam! Is this the opening I've been waiting for? Should I tell her, yes, oh my yes, she does show symptoms and we desperately do need help? No.... no.... hold on a moment. Let's see where she takes this first....)

Me: Right

MW: But my mother didn't show signs until she was in her late sixties. So I have another twenty years left, even if I do have it. I wouldn't want you to tell me if you thought I had it. 

Me: You don't show any symptoms. You don't have it.

That last one? That last lie? Breaks my fucking heart. MW brings up the fact that her mother wasn't diagnosed with the disease until she was in her late sixties like it is a touchstone; like it's a talisman. Protecting her for at least twenty more years.

But I have studied the disease. Huntington's is called an "anticipatory" gene. That means subsequent generations experience its effects earlier than their predecessors. MW doesn't have twenty years. At this rate, she might not even have two.

That's a lot of slag for one man to carry. Hence the drinking.

Which brings us to the point of today's lesson: The fuck up and the triumph.

Last weekend I was down to just beer so Saturday, as soon as MW went to spend six hours at her part time job, I tore ass to the liquor store. $100 lighter, but heavy with bottles, I raced home and popped a cork. I told myself only one bottle, as MW would be home in the afternoon and I had plenty of chores to do around the house before that happened. See, some of these chores (laundry, changing light bulbs, washing dishes, cooking, etc.) I'm not able to do when she's around, so I have to be sneaky about it. Anyway, one bottle didn't last long so I figured two couldn't hurt. Hell, my tolerance? I could handle two in six hours. Easy.

5:00 p.m. MW comes in and finds me passed out on the computer chair with Dio blasting from the speakers.

There's the fuck up.

Give me credit, though, I had finished the chores, including hiding all the booze and disposing the two empty bottles, so all she saw was me dozing.

Explain that without using the words "drank, drunk, drink."

Turns out my clothes were in the drier, but that's no excuse for zonking off while sitting in a chair listening to heavy metal music.  

Now comes the triumph.

MW was so upset by this incongruous behavior, she has totally forgotten about her knee buckling and HD. Now she's sure I suffered a small heart attack or stroke or something and is obsessed with the thought of me passing out and burning down the house because I left the stove or the drier on.

Small triumph. And there is a downside in that MW no longer trusts me to be at home by myself so she didn't go to work on Sunday and will probably quit her job before next weekend. 

Also, I felt compelled to throw all the liquor I'd just bought away because clearly it is time to step back for a while. 

And here's some more comedy for the alcoholics: ever try to toss $100 worth of booze away on the sly? Not easy, right? It's pretty heavy. And As soon as I lift the garbage bag from the trash barrel, I notice one of the bottle necks has poked through. Goddamnit.

Quickly try a double bag. Nope. Same bottle neck sticking out. Double Goddamnit.

Whatever. Just haul out the barrel and let the garbage men deal. Ah, but it is windy and rainy and as soon as MW sees the barrel on the yard, she tells me not to leave it there. It'll blow away or fill up with water.

No, I assure her, no, the rain and wind will stop soon. I saw the weather report.

Lie, lie, lie.

And, of course, after diligently purging the house of all booze, last night I discover a bottle I'd missed in one of my old hiding places. Sheeee-it.

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.