What am I missing?
I've been scrapping myself raw down here at the bottom of the barrel; throwing myself against the brick walls, collapsing hard upon the concrete floor. I've not an inch of smooth skin left and everything is tinted the color of my blood.
For what? Why do I keep going? The joy of hearing death laugh at me?
No. I'm missing something.
I have to be.
But what?
***
Just because I can't see the solution doesn't mean there isn't one.
But see? That right there has become a huge problem: I'm getting worse. Stupider. I never used to write sentences so awkward and poorly structured. I've forgotten how to be myself; how to think like I should think, act like I should act.
So if there is an answer, I fear it's beyond my ken of understanding and outside my capabilities.
Funny. MW has Huntington's Disease, but I'm the one thinking about walking into the sea. She's doing fine, at least as far as she knows, she's doing great! Just the other day she was bragging about how she's the best she's ever been, mentally, because of her high protein diet.
I guess it doesn't register that she hasn't been able to work for a year, and she must not see the dozens of sheets of typing paper containing "reminders" which she's taped up all over the walls. Of course the car's been in the shop for three weeks since she smashed it into a pole, and she still has crap piled up all around the garage door to prevent her from going over the threshold too fast.
But she's eating four fillets of salmon a week. She's ready to take on the world! As long as it doesn't contain a sidewalk with too many sections. You can trip over those section breaks, which is why we don't walk at the park anymore.
***
The house rules set forth by MW are extensive and exhausting. Every moment of my time at home is set to tasks. It's been this way for years.
But lately I've let things slide. Simple things like plugging all the drains in the house to prevent tree-roaches from crawling out of the pipes, or leaving the kitchen sponge in the sink instead of the drying rack. Seems like every day I forget one or more of these rules.
And when I do? Apocalypse. Sleeplessness. MW will wake me at 1,2,3 in the morning to yell at me that I've left a sink un-plugged.
Stupid stupid stupid me.
***
The other day, I tried walking with my head up; shoulders back. You know, on a lark.
Didn't last. Within five steps my back hunched and eyes down-turned. Everything hurt. I shuffled along hurriedly to my office where I could pop some Advil.
I'm broke down.
***
But am I missing something?
Monday, August 27, 2018
Monday, August 20, 2018
2018.08.20
Head-check time:
Suicide. I tend to beat around the bush about it, but there it is.
The solution.
The only solution?
What this head-check is all about.
***
First, the weekend. As always, hellish. The high point was a refreshing blast of self-awareness as to the numbness that allows me to continue walking upright instead of curling into a ball, ripping out my guts.
It can't hurt me anymore. I'm beyond pain.
Jesus. Did I just write that? *sigh*
Details, if you need them, though they're not much different from any (every) other weekend:
I get one chance at the grocery store. MW drives, because she doesn't trust me, but she won't go into the store because she doesn't want people looking at her. Ergo, I shop; she waits.
Ah, but this is summer time in Houston. She won't wait long. I'd better hurry my ass up! And if I forget or don't buy enough of something? Capitol T trouble.
So before I leave the car, I ask MW a few times if she needs anything special. She'll say no; then I'll start listing off the stuff she has wanted in the past, and might want again. Occasionally I'll hit on a winner, but when she's in a mood, this type of OCD grates her nerves and she'll snap at me to "go and hurry!"
Just so this weekend. I'd asked about some things, she crossly said she didn't want them, and I skedaddled.
That was Saturday. Sunday she wanted the items I'd asked about; but I hadn't bought them.
Yup. An apocalypse. By the time she'd finished flaying all the flesh from my body, hours had passed and the air around my head had turned India-ink black.
And all I could think about was the comfort of the grave.
***
Nothing new, though, this is how I spend most of my time at home. Wishing I were dead.
It has gotten to the point where I feel, well, dead already. MW screaming at me, berating me, lashing out at me - do I flinch when her clawed hand rakes the air at my cheek? No. Do I imagine that same hand closed around a pair of scissors or a knife?
Sure. Be better. Bet a LOT better.
And I wouldn't flinch.
***
What's holding me back? Why haven't I killed myself yet? Where's my head at?
***
When I became certain MW had Huntington's Disease, I foolishly assumed there would be some sort of help for us. Friends, family, doctors, medicine; something to make it manageable.
Nope.
We're alone and there is nothing we can do to manage this. It won't get better until one of us dies.
That's it. Carved in stone. One of us has to die for things to improve.
And every day I chose not to kill myself is another day where, in the back of my mind, I know I'm counting on MW dying first.
Five years of this, and I loathe myself. Obviously it's been too late for MW for a long time now. Since she was born, actually. Recently, though, I've come to realize it's too late for me as well.
If MW does die before me, I would not be able to rebuild a normal life. I don't know how to be around people anymore. There are days where I go without speaking more than perfunctory greetings to co-workers. My voice, when I use it, is thin and strange to me. So many years of being torn down for every utterance have left me uncertain and afraid.
I don't trust myself. I don't trust anybody. Words are grenades; even facial expressions can invite shrapnel. I can sit at a computer and work, but that's all. If MW dies, that will be what's left of me. A mouse and a keyboard and a paycheck.
Why bother?
***
Here's where it gets maybe a little complicated:
1) MW can't take care of herself.
2) I'm the only one around.
So. I need to be around to take care of her, yes?
Yes.
EXCEPT! What if I'm doing a terrible job? What if, in fact, I'm putting her at great risk by shielding her from reality.
Case in point: Should she be driving? Probably not. I've tried my best to keep her from behind the wheel, but I've fucked it all up and she wants to drive exclusively.
That's the big one; but there are myriad little things I do that, out of context, seem downright cruel. Or, hell, maybe even in context. I've no idea. Take for example her job-hunt. I fill out all her applications and take all her assessment tests so she gets interviews which she bombs (no help for it - she sounds crazy over the phone and in person? Best case they think she's drunk).
I tell her it's okay. I tell her to keep trying. I tell her they're the one's who are crazy.
I keep her going.
Just the other day she got in her mind to ask some former supervisors for references. She composed an email and sent it to a vice president of Chase Bank.
When I got home, she showed me the email.
It was nuts. Indecipherable. So confusing, in fact, I could imagine the recipient being slightly frightened.
I hedged and said it could've been clearer, then wrote another version for her and sent it off; but I did tell her that he probably already moved it to spam so she shouldn't expect a reply.
She's humiliating herself and I let it happen. I enable it. Hell, I encourage it. If she's busy harassing some company's HR department, that's less time she's spending tearing me down.
I'm not at all certain this is the best way to handle somebody with Huntington's Disease. Even if they've been adamant about not wanting to know; and they're not likely to take any medications - even still.
I'm probably balling this all up.
***
So where am I at? Do I start making definitive plans today or do I wait?
How many more days can I look at myself in the shaving mirror and think, "Maybe MW will die today. Wouldn't that be something?"
That's no way to live.
Suicide. I tend to beat around the bush about it, but there it is.
The solution.
The only solution?
What this head-check is all about.
***
First, the weekend. As always, hellish. The high point was a refreshing blast of self-awareness as to the numbness that allows me to continue walking upright instead of curling into a ball, ripping out my guts.
It can't hurt me anymore. I'm beyond pain.
Jesus. Did I just write that? *sigh*
Details, if you need them, though they're not much different from any (every) other weekend:
I get one chance at the grocery store. MW drives, because she doesn't trust me, but she won't go into the store because she doesn't want people looking at her. Ergo, I shop; she waits.
Ah, but this is summer time in Houston. She won't wait long. I'd better hurry my ass up! And if I forget or don't buy enough of something? Capitol T trouble.
So before I leave the car, I ask MW a few times if she needs anything special. She'll say no; then I'll start listing off the stuff she has wanted in the past, and might want again. Occasionally I'll hit on a winner, but when she's in a mood, this type of OCD grates her nerves and she'll snap at me to "go and hurry!"
Just so this weekend. I'd asked about some things, she crossly said she didn't want them, and I skedaddled.
That was Saturday. Sunday she wanted the items I'd asked about; but I hadn't bought them.
Yup. An apocalypse. By the time she'd finished flaying all the flesh from my body, hours had passed and the air around my head had turned India-ink black.
And all I could think about was the comfort of the grave.
***
Nothing new, though, this is how I spend most of my time at home. Wishing I were dead.
It has gotten to the point where I feel, well, dead already. MW screaming at me, berating me, lashing out at me - do I flinch when her clawed hand rakes the air at my cheek? No. Do I imagine that same hand closed around a pair of scissors or a knife?
Sure. Be better. Bet a LOT better.
And I wouldn't flinch.
***
What's holding me back? Why haven't I killed myself yet? Where's my head at?
***
When I became certain MW had Huntington's Disease, I foolishly assumed there would be some sort of help for us. Friends, family, doctors, medicine; something to make it manageable.
Nope.
We're alone and there is nothing we can do to manage this. It won't get better until one of us dies.
That's it. Carved in stone. One of us has to die for things to improve.
And every day I chose not to kill myself is another day where, in the back of my mind, I know I'm counting on MW dying first.
Five years of this, and I loathe myself. Obviously it's been too late for MW for a long time now. Since she was born, actually. Recently, though, I've come to realize it's too late for me as well.
If MW does die before me, I would not be able to rebuild a normal life. I don't know how to be around people anymore. There are days where I go without speaking more than perfunctory greetings to co-workers. My voice, when I use it, is thin and strange to me. So many years of being torn down for every utterance have left me uncertain and afraid.
I don't trust myself. I don't trust anybody. Words are grenades; even facial expressions can invite shrapnel. I can sit at a computer and work, but that's all. If MW dies, that will be what's left of me. A mouse and a keyboard and a paycheck.
Why bother?
***
Here's where it gets maybe a little complicated:
1) MW can't take care of herself.
2) I'm the only one around.
So. I need to be around to take care of her, yes?
Yes.
EXCEPT! What if I'm doing a terrible job? What if, in fact, I'm putting her at great risk by shielding her from reality.
Case in point: Should she be driving? Probably not. I've tried my best to keep her from behind the wheel, but I've fucked it all up and she wants to drive exclusively.
That's the big one; but there are myriad little things I do that, out of context, seem downright cruel. Or, hell, maybe even in context. I've no idea. Take for example her job-hunt. I fill out all her applications and take all her assessment tests so she gets interviews which she bombs (no help for it - she sounds crazy over the phone and in person? Best case they think she's drunk).
I tell her it's okay. I tell her to keep trying. I tell her they're the one's who are crazy.
I keep her going.
Just the other day she got in her mind to ask some former supervisors for references. She composed an email and sent it to a vice president of Chase Bank.
When I got home, she showed me the email.
It was nuts. Indecipherable. So confusing, in fact, I could imagine the recipient being slightly frightened.
I hedged and said it could've been clearer, then wrote another version for her and sent it off; but I did tell her that he probably already moved it to spam so she shouldn't expect a reply.
She's humiliating herself and I let it happen. I enable it. Hell, I encourage it. If she's busy harassing some company's HR department, that's less time she's spending tearing me down.
I'm not at all certain this is the best way to handle somebody with Huntington's Disease. Even if they've been adamant about not wanting to know; and they're not likely to take any medications - even still.
I'm probably balling this all up.
***
So where am I at? Do I start making definitive plans today or do I wait?
How many more days can I look at myself in the shaving mirror and think, "Maybe MW will die today. Wouldn't that be something?"
That's no way to live.
Friday, August 17, 2018
2018.08.17
One step forward, two steps back.
Two gigantic, leaping steps. Flying, cartwheeling steps. Heels-over-the-cliff steps.
I should have known. When the miraculous occurs and something that is actually helpful happens, it won't last or will backfire.
Just so the event that led MW to agree to let me drive from now on. That's over and I'm once again relegated to riding white-knuckled in the passenger seat, but it's my own fault. It makes me ill when I think about it; just how fucking pointless and cruel and miserable and hopeless and sad and dangerous and pathetic and and and.
Here's what happened:
I'm driving now! And doing a great job of it, if I may say so. There's a reason for my perfect driving record - I'm obsessively careful and defensive on the road. Always wear my seat-belt and stop at every sign even if there are no other cars on the road. Yeah, I'm that person. But heck, behind the wheel of a car is the only place where I have certain control over our safety. We may be fucked, but we're not dying in a car. Not when I'm driving.
You see what's coming, right? I'm cruising the speed-limit on a 55mph freeway when lady in a BMW, who had been stopped off the side of the road, decides she's waited long enough and pulls right into my lane and I have to stand on the brakes to avoid having a BAD collision. Tires screaming, smoke billowing, everything loose in the car flying forward, smacking against the dash and the windshield.
And I transform into a creature made of pure rage.
Five years of being Huntington's Disease's simpering bitch. Five years of no peace, no rest, constant humiliation and horror. Five years of sleep-deprivation and sickness. Five years of crushing depression.
And this CUNT tries to wreck us in her fucking BMW?
Oh. Oh no. No, I couldn't....
And when I had finished verbally unloading all my hatred and frustration on the silly twat who had long since puttered away (badly cutting of other motorists, I noticed, as she continued blissfully towards the far end of a five lane highway to turn into a fast-food joint) MW was sobbing, begging me to calm down.
For you see, I had well and truly lost my shit.
Welp. That's the end of that. I am no longer allowed to drive. We have to do the shuffle where I'll pull out of our driveway to avoid hitting cars, then stop at a strip-mall to let her take the wheel. She'll drive until we get close to our destination where she'll pull into an easy lot to let me do the parking if it's a garage.
Stupid and dangerous. And I'm to blame. If only I'd been able to control myself.
***
More? MW saw an internet article about an ex-school teacher who now earns $100,000+ delivering groceries.
Again, you see what's coming.
But I don't want her driving around that much, so I have to think fast:
"You can't do that," I say. "They'll make you deliver everywhere. Even rape houses."
"?"
"You know, some bad neighborhood or trailer park or something."
"Those people don't have their groceries delivered! They can't afford it."
"Sure they can. They get subsidized for it. And the grocery stores don't charge, so it's free, except if they want to tip. Which they don't have to. That $100,000 a year ex-teacher probably works a really expensive, high end neighborhood. Not like it is around here."
So far that argument has won the day. Last thing MW wants is to have any part of a rape-house.
Two gigantic, leaping steps. Flying, cartwheeling steps. Heels-over-the-cliff steps.
I should have known. When the miraculous occurs and something that is actually helpful happens, it won't last or will backfire.
Just so the event that led MW to agree to let me drive from now on. That's over and I'm once again relegated to riding white-knuckled in the passenger seat, but it's my own fault. It makes me ill when I think about it; just how fucking pointless and cruel and miserable and hopeless and sad and dangerous and pathetic and and and.
Here's what happened:
I'm driving now! And doing a great job of it, if I may say so. There's a reason for my perfect driving record - I'm obsessively careful and defensive on the road. Always wear my seat-belt and stop at every sign even if there are no other cars on the road. Yeah, I'm that person. But heck, behind the wheel of a car is the only place where I have certain control over our safety. We may be fucked, but we're not dying in a car. Not when I'm driving.
You see what's coming, right? I'm cruising the speed-limit on a 55mph freeway when lady in a BMW, who had been stopped off the side of the road, decides she's waited long enough and pulls right into my lane and I have to stand on the brakes to avoid having a BAD collision. Tires screaming, smoke billowing, everything loose in the car flying forward, smacking against the dash and the windshield.
And I transform into a creature made of pure rage.
Five years of being Huntington's Disease's simpering bitch. Five years of no peace, no rest, constant humiliation and horror. Five years of sleep-deprivation and sickness. Five years of crushing depression.
And this CUNT tries to wreck us in her fucking BMW?
Oh. Oh no. No, I couldn't....
And when I had finished verbally unloading all my hatred and frustration on the silly twat who had long since puttered away (badly cutting of other motorists, I noticed, as she continued blissfully towards the far end of a five lane highway to turn into a fast-food joint) MW was sobbing, begging me to calm down.
For you see, I had well and truly lost my shit.
Welp. That's the end of that. I am no longer allowed to drive. We have to do the shuffle where I'll pull out of our driveway to avoid hitting cars, then stop at a strip-mall to let her take the wheel. She'll drive until we get close to our destination where she'll pull into an easy lot to let me do the parking if it's a garage.
Stupid and dangerous. And I'm to blame. If only I'd been able to control myself.
***
More? MW saw an internet article about an ex-school teacher who now earns $100,000+ delivering groceries.
Again, you see what's coming.
But I don't want her driving around that much, so I have to think fast:
"You can't do that," I say. "They'll make you deliver everywhere. Even rape houses."
"?"
"You know, some bad neighborhood or trailer park or something."
"Those people don't have their groceries delivered! They can't afford it."
"Sure they can. They get subsidized for it. And the grocery stores don't charge, so it's free, except if they want to tip. Which they don't have to. That $100,000 a year ex-teacher probably works a really expensive, high end neighborhood. Not like it is around here."
So far that argument has won the day. Last thing MW wants is to have any part of a rape-house.
Tuesday, August 7, 2018
2018.08.07
Sunday, August 5th MW scrapped the right side of the car all to hell against a concrete post in the Galleria's parking garage. She misjudged the spacing and just kept going.
$5,000+ worth of damage.
Even before then, MW was all over the road - cruising the shoulders; never between the lines. I'm riding shotgun, knuckles white from gripping the armrests, afraid to mention her erratic behavior because past experience dictates that'll get me screamed at.
On the bright side, nobody got hurt and she kinda agreed to let me drive from now on. She readily understood that she shouldn't go into any more parking garages, but her plan was to drive to empty lots close to our destination and then let me take the driver's seat for parking in a garage when necessary.
Not very efficient, but better than 1) letting fear take over and 2) letting me drive because I'm a terrible driver. Either too fast or too slow. Never just right. Don't even talk about how I've never had an accident or any kind of speeding ticket or moving violation - not since I was a teenager - because that doesn't mean anything. I'm still a horrible driver.
Here's how I countered those arguments:
1) (Borrowed from Nero Wolfe) We can avoid folly without backing into fear. MW shouldn't be afraid to drive, but when she has a passenger (me) she becomes distracted by conversation. In reality, she talks incessantly and likes to look at the person she's addressing. This is problematic when behind the wheel as her eyes are rarely on the road.
2) Give me a chance to prove I'm such a bad driver. After all, within the last three years, MW has had one terrible accident and countless bumps and scrapes. Both cars look like demolition derby rejects. So, yeah, maybe I'm always too fast or too slow or too stupid to drive; so why not prove it? Let me get into some accidents for a change.
Finally! Logic MW can get behind.
So now I'm driving. At least on the weekends. During the week when I'm not at home is another story; one which will likely not have a happy ending.
***
Last month MW had two doors replaced. The thresholds of the replacements are higher than what had been there. Thus, MW lost all semblance of control over tripping concerns. We drove to Wal-Mart at midnight to buy reflective tape to stick around the door as a warning. The entire door and surroundings are covered by signs; buckets and broom-pans are set around the entry to prevent anyone from moving too fast over the terrifying thresholds.
Typical behavior. Well, maybe a tick or two above typical. MW just could not reconcile having a half-inch threshold to navigate - she wailed and cried as if she had become a prisoner in her own home because there was no safe way to step through the new doors.
What was notable, however, was the power of deniability MW displayed when confronted by reality.
She'd been going on for hours about how dangerous the doors were and trying to figure out a way to make them safe. Then, after rejecting all my suggestions (she almost agreed to having handicap ramps installed, but balked because you could fall off the ramps' edges), in a pique of frustration, I said it was something we might just have to learn to live with. After all, outside the house, there are plenty of thresholds; many even taller than ours. Uneven sidewalks, curbs, cracks; nothing is 100% safe. The only way to guarantee you won't trip and fall over something is to ride around in a wheelchair, I said. Did you want to buy a wheelchair? I asked.
MW looked at me for a moment. Her brow furrowed briefly, as if recognizing an unpleasant truth about her future, then she went on rallying against thresholds; totally ignoring everything I'd said.
Denial. Such a powerful thing.
***
Comic relief time:
The pendulum had swung back to "drink!" and I'd decided to buy wine during lunch at work. Eager to get to the grocery store, I decided to hurry across the street NOT at the crosswalk. A diabolically hidden sprinkler connector in the scrub-land between sidewalk and street caught my foot as expertly as a Viet Cong tripwire.
I went down. Hard. Right on the street. Had a car been coming, it would have crushed my torso.
My shin, knee and palms were wrecked - flayed flesh, bleeding, pants ruined.
Perfect. And it gets better.
I took myself to CVS for hydrogen peroxide, Neosporin and bandadges. On the way out, a bird shits on my shoulder.
But that's not all.
I know I have to hide the wounds from MW. She doesn't handle these things very well. So I start wearing long pants around the house with a flesh colored bandage on my hand. Fortunately, MW isn't very aware of her environment these days, so she doesn't notice that I'm wearing long flannel PJ bottoms when it's 100 degrees outside or that my palm is almost completely covered by a bandage.
And then MW steps on a piece of glass in the kitchen. Just a sliver; probably from something she broke, but it's enough to send her over.
I'm responsible for the glass being there. I must have carried it in from outside on the cuff of my long pants. She demands I take them off and put on shorts.
Oh goddamnit.
At least the leg had had some time to heal by then, so MW didn't completely lose her mind about it. Still, it all goes to show how wonderful life really is.
$5,000+ worth of damage.
Even before then, MW was all over the road - cruising the shoulders; never between the lines. I'm riding shotgun, knuckles white from gripping the armrests, afraid to mention her erratic behavior because past experience dictates that'll get me screamed at.
On the bright side, nobody got hurt and she kinda agreed to let me drive from now on. She readily understood that she shouldn't go into any more parking garages, but her plan was to drive to empty lots close to our destination and then let me take the driver's seat for parking in a garage when necessary.
Not very efficient, but better than 1) letting fear take over and 2) letting me drive because I'm a terrible driver. Either too fast or too slow. Never just right. Don't even talk about how I've never had an accident or any kind of speeding ticket or moving violation - not since I was a teenager - because that doesn't mean anything. I'm still a horrible driver.
Here's how I countered those arguments:
1) (Borrowed from Nero Wolfe) We can avoid folly without backing into fear. MW shouldn't be afraid to drive, but when she has a passenger (me) she becomes distracted by conversation. In reality, she talks incessantly and likes to look at the person she's addressing. This is problematic when behind the wheel as her eyes are rarely on the road.
2) Give me a chance to prove I'm such a bad driver. After all, within the last three years, MW has had one terrible accident and countless bumps and scrapes. Both cars look like demolition derby rejects. So, yeah, maybe I'm always too fast or too slow or too stupid to drive; so why not prove it? Let me get into some accidents for a change.
Finally! Logic MW can get behind.
So now I'm driving. At least on the weekends. During the week when I'm not at home is another story; one which will likely not have a happy ending.
***
Last month MW had two doors replaced. The thresholds of the replacements are higher than what had been there. Thus, MW lost all semblance of control over tripping concerns. We drove to Wal-Mart at midnight to buy reflective tape to stick around the door as a warning. The entire door and surroundings are covered by signs; buckets and broom-pans are set around the entry to prevent anyone from moving too fast over the terrifying thresholds.
Typical behavior. Well, maybe a tick or two above typical. MW just could not reconcile having a half-inch threshold to navigate - she wailed and cried as if she had become a prisoner in her own home because there was no safe way to step through the new doors.
What was notable, however, was the power of deniability MW displayed when confronted by reality.
She'd been going on for hours about how dangerous the doors were and trying to figure out a way to make them safe. Then, after rejecting all my suggestions (she almost agreed to having handicap ramps installed, but balked because you could fall off the ramps' edges), in a pique of frustration, I said it was something we might just have to learn to live with. After all, outside the house, there are plenty of thresholds; many even taller than ours. Uneven sidewalks, curbs, cracks; nothing is 100% safe. The only way to guarantee you won't trip and fall over something is to ride around in a wheelchair, I said. Did you want to buy a wheelchair? I asked.
MW looked at me for a moment. Her brow furrowed briefly, as if recognizing an unpleasant truth about her future, then she went on rallying against thresholds; totally ignoring everything I'd said.
Denial. Such a powerful thing.
***
Comic relief time:
The pendulum had swung back to "drink!" and I'd decided to buy wine during lunch at work. Eager to get to the grocery store, I decided to hurry across the street NOT at the crosswalk. A diabolically hidden sprinkler connector in the scrub-land between sidewalk and street caught my foot as expertly as a Viet Cong tripwire.
I went down. Hard. Right on the street. Had a car been coming, it would have crushed my torso.
My shin, knee and palms were wrecked - flayed flesh, bleeding, pants ruined.
Perfect. And it gets better.
I took myself to CVS for hydrogen peroxide, Neosporin and bandadges. On the way out, a bird shits on my shoulder.
But that's not all.
I know I have to hide the wounds from MW. She doesn't handle these things very well. So I start wearing long pants around the house with a flesh colored bandage on my hand. Fortunately, MW isn't very aware of her environment these days, so she doesn't notice that I'm wearing long flannel PJ bottoms when it's 100 degrees outside or that my palm is almost completely covered by a bandage.
And then MW steps on a piece of glass in the kitchen. Just a sliver; probably from something she broke, but it's enough to send her over.
I'm responsible for the glass being there. I must have carried it in from outside on the cuff of my long pants. She demands I take them off and put on shorts.
Oh goddamnit.
At least the leg had had some time to heal by then, so MW didn't completely lose her mind about it. Still, it all goes to show how wonderful life really is.
Wednesday, July 18, 2018
2018.07.18
Once again suffering under a panicked compulsion to write something, anything; no matter how awful. Indeed I am drunk. And forewarned - it will be awful.
Two things:
1) In the shower Saturday morning dreading the day to come. I can't escape to work, so it'll be 48 hours under the scrutiny of MW. She will say ugly things and complain the entire time; but we will get nothing done.
I'm sick thinking about it. Another two days, destroyed. Precious time squandered. MW has started falling down. A lot. An absurd amount of tripping over, basically, nothing. Her own feet. This makes her furious. And confused. The entire house needs to be rearranged in a way that makes it impossible to fall. Make-shift railings made from dog-gates have turned the kitchen into a maze. Sofas, chairs and beds all shanty-town now.
I'm to blame for a lot of it. Still not sure why, but I am.
MW is constantly pissed at me.
Hot water from the shower rolls down my back, but my stomach grows cold.
The way out. The ultimate end.
It is no longer abstract. Concrete plans form in my mind. The ledger tilts too far and I have no counterbalance argument.
I see it. I want it. Part of me aches for it.
A release.
Why don't I?
No response but the background static that has existed since the universe began.
2) Part of the ongoing charade of normalcy is MW searching for employment. She can work another twenty years, you know. Sure. Her Aunt worked until 60 (never mind that MW is now fifty. 60-50=20?)
Since quitting her job last September, she's applied for over 1,000 jobs. And when I say she's applied, I mean to say I've applied for her. And taken all those bullshit employment test you have to take in today's job market.
I pass the tests, she gets the face-to-face interview, and they don't hire her.
I wonder why?
So I'm doing another one of the pre-employment screening tests for MW and it's a dozy: all sorts of complicated word problems, math, and an intricate computerized VR environment simulating a call center. As I'm plowing through, I think about deliberately fucking it up so MW doesn't get the interview. Wouldn't that be for the better?
An interesting moral question.
Which led to another dilemma: all the test require the candidate to "do their own work". Yeah, right. It's gotten to the point where I wouldn't trust MW to enter her own phone number correctly. So by doing the applications for her, I'm lying and cheating the system.
But I'm doing it for loooooove.
Right?
***
More of the same. No solutions, just fuck-ups.
Depression. Booze.
And in the background, static. Like old television at three in the morning: white and black dots buzzing on the screen.
Suicide.
Two things:
1) In the shower Saturday morning dreading the day to come. I can't escape to work, so it'll be 48 hours under the scrutiny of MW. She will say ugly things and complain the entire time; but we will get nothing done.
I'm sick thinking about it. Another two days, destroyed. Precious time squandered. MW has started falling down. A lot. An absurd amount of tripping over, basically, nothing. Her own feet. This makes her furious. And confused. The entire house needs to be rearranged in a way that makes it impossible to fall. Make-shift railings made from dog-gates have turned the kitchen into a maze. Sofas, chairs and beds all shanty-town now.
I'm to blame for a lot of it. Still not sure why, but I am.
MW is constantly pissed at me.
Hot water from the shower rolls down my back, but my stomach grows cold.
The way out. The ultimate end.
It is no longer abstract. Concrete plans form in my mind. The ledger tilts too far and I have no counterbalance argument.
I see it. I want it. Part of me aches for it.
A release.
Why don't I?
No response but the background static that has existed since the universe began.
2) Part of the ongoing charade of normalcy is MW searching for employment. She can work another twenty years, you know. Sure. Her Aunt worked until 60 (never mind that MW is now fifty. 60-50=20?)
Since quitting her job last September, she's applied for over 1,000 jobs. And when I say she's applied, I mean to say I've applied for her. And taken all those bullshit employment test you have to take in today's job market.
I pass the tests, she gets the face-to-face interview, and they don't hire her.
I wonder why?
So I'm doing another one of the pre-employment screening tests for MW and it's a dozy: all sorts of complicated word problems, math, and an intricate computerized VR environment simulating a call center. As I'm plowing through, I think about deliberately fucking it up so MW doesn't get the interview. Wouldn't that be for the better?
An interesting moral question.
Which led to another dilemma: all the test require the candidate to "do their own work". Yeah, right. It's gotten to the point where I wouldn't trust MW to enter her own phone number correctly. So by doing the applications for her, I'm lying and cheating the system.
But I'm doing it for loooooove.
Right?
***
More of the same. No solutions, just fuck-ups.
Depression. Booze.
And in the background, static. Like old television at three in the morning: white and black dots buzzing on the screen.
Suicide.
Friday, July 13, 2018
2018.07.13
There I was, congratulating myself on making - once again - a commitment to sobriety. I'd fallen hard off the wagon and was teetering on the abyss, when I realized - "Hey! It's already July! October is just around the corner. Don't you want to be around for one more Halloween?"
Sure.
So I put the bottles down with the promise that I would return to them on November 1st. After that, we could consider our escape plan.
Then MW called me at work.
Crying. Wailing. Making inhuman sounds. Babbling incoherently.
Eventually I pieced enough information together: she'd fallen. In the kitchen. And was worried that it was a symptom of Huntington's Disease.
Ah. Fuck.
So I'm drunk now. At work. I don't want to go home; I can't go home. It's so easy lying to her over the phone: of course not; you don't have HD, no, of course not, everybody falls. I fall all the time. Why, just the other day somebody here at work fell. Seriously. Had to go to the hospital and everything. Shoo. Falling? Shoo.
But at home? With her twisted, contorted face looking hurt and confused?
Oh Christ. I can't do it.
But I have to. What choice do I have, besides the ultimate. Here, let me take another drink and think about it some more....
What are my choices?
***
When MW was on the phone just.... just breaking apart. Oh God, the sounds she was making! Like she was in hell. In hell.
And I lie to her and tell her it's okay and I'll be home as soon as possible (point for me: Since MW doesn't let me drive anywhere, I have to take the bus, but it doesn't start running until late afternoon as it's one of those Park 'n Ride deals. Bonus for me! I have a couple hours to drink at the office!)
Anyway, as I'm on the phone, just lying my ass off, I start to think: who would do this for me? Who would protect me from myself were I going crazy?
Not a single, solitary person. Oh, certainly not MW. Not that I blame her at all; but she wouldn't/couldn't deal with it. Even if she were healthy, I know, 100%, she wouldn't put up with it. She has (had) too many friends, too much family. They wouldn't let her lose everything to take care of somebody who was so... hopeless.
They would tell her to put me in a home or something.
And they would be right to do so.
It's all academic anyway. I'd've killed myself. For certain.
Hell, I'm barely hanging on now; and only because....
Because....
Little help?
***
Not a single person. My mother couldn't - she can barely take care of herself. My father's dead. My brother and sister would also put me in a home (again, right to do so) as they have families.
I have no friends.
None.
Because Huntington's Disease has driven them all away.
***
I'm drunk, but I don't have much time.
Soon I'll have to leave the office and go home to face MW. She'll spend the evening - likely well into the next morning - making plans to safeguard the house that won't amount to anything.
And I'll lie and tell her everything is okay and we'll do whatever she says. It'll all work out.
Tomorrow I'll try to sneak some cheap wine.
Sunday is dry because Texas doesn't fucking allow spirits sold before noon and MW doesn't like to leave the house when it's hot.
Monday I'm back at work and I think I'll go to Spec's for lunch and buy the hard stuff.
And we'll see where that takes us.
Sure.
So I put the bottles down with the promise that I would return to them on November 1st. After that, we could consider our escape plan.
Then MW called me at work.
Crying. Wailing. Making inhuman sounds. Babbling incoherently.
Eventually I pieced enough information together: she'd fallen. In the kitchen. And was worried that it was a symptom of Huntington's Disease.
Ah. Fuck.
So I'm drunk now. At work. I don't want to go home; I can't go home. It's so easy lying to her over the phone: of course not; you don't have HD, no, of course not, everybody falls. I fall all the time. Why, just the other day somebody here at work fell. Seriously. Had to go to the hospital and everything. Shoo. Falling? Shoo.
But at home? With her twisted, contorted face looking hurt and confused?
Oh Christ. I can't do it.
But I have to. What choice do I have, besides the ultimate. Here, let me take another drink and think about it some more....
What are my choices?
***
When MW was on the phone just.... just breaking apart. Oh God, the sounds she was making! Like she was in hell. In hell.
And I lie to her and tell her it's okay and I'll be home as soon as possible (point for me: Since MW doesn't let me drive anywhere, I have to take the bus, but it doesn't start running until late afternoon as it's one of those Park 'n Ride deals. Bonus for me! I have a couple hours to drink at the office!)
Anyway, as I'm on the phone, just lying my ass off, I start to think: who would do this for me? Who would protect me from myself were I going crazy?
Not a single, solitary person. Oh, certainly not MW. Not that I blame her at all; but she wouldn't/couldn't deal with it. Even if she were healthy, I know, 100%, she wouldn't put up with it. She has (had) too many friends, too much family. They wouldn't let her lose everything to take care of somebody who was so... hopeless.
They would tell her to put me in a home or something.
And they would be right to do so.
It's all academic anyway. I'd've killed myself. For certain.
Hell, I'm barely hanging on now; and only because....
Because....
Little help?
***
Not a single person. My mother couldn't - she can barely take care of herself. My father's dead. My brother and sister would also put me in a home (again, right to do so) as they have families.
I have no friends.
None.
Because Huntington's Disease has driven them all away.
***
I'm drunk, but I don't have much time.
Soon I'll have to leave the office and go home to face MW. She'll spend the evening - likely well into the next morning - making plans to safeguard the house that won't amount to anything.
And I'll lie and tell her everything is okay and we'll do whatever she says. It'll all work out.
Tomorrow I'll try to sneak some cheap wine.
Sunday is dry because Texas doesn't fucking allow spirits sold before noon and MW doesn't like to leave the house when it's hot.
Monday I'm back at work and I think I'll go to Spec's for lunch and buy the hard stuff.
And we'll see where that takes us.
Friday, June 29, 2018
2018.06.29
That last post was muchos pathos, and this may not be any better; but I'm compelled to expand, if not clarify, some of those points.
Things are bad with MW. Very bad. Picture this: last night I'm in mud boots, chemical gloves, industrial strength face mask and liquid Clorox swamping out the guest bathroom because one of the worker's she'd hired to repair the fence had asked to come in and use the bathroom. Foolishly, I allowed it. Now she's yelling at me and demanding I use Clorox to disinfect everything - and I mean everything, even the doorknobs - that he might have touched.
And that wasn't even the worst. It only cost around $100 worth of cleaning supplies/safety equipment and a couple hours. We won't go into all the time and money spent "fixing" up the house under the loopy-eye of dementia.
Also, my new favorite past-time is to take a quiet moment and look at MW. Just watch her as she sits in front of the TV. Observe her hands spasm; her legs jerk. Her fingers twitch and her mouth contort.
And yet she has no awareness. None. Everyday is spent making "house" plans then applying for jobs - which she'll never get.
She bought a wig to look younger when she goes on interviews; certain that it's her age what's causing her to lose jobs. Jesus wept.
I go along with - no, in fact, I encourage this behavior. It sometimes keeps her from screaming hateful words at me.
I am such an ass.
***
However, what if....
If I sat her down and told her that she needs to stop, take a breath, and face facts: she has Huntington's Disease.
Shining light from God and glory on high - she realizes time is short and we'd better start making the most of it.
Or
Flames from hell rising to engulf us both - depression. Suicidal depression.
But
The reality? Reality....
I think she would block me out - I've seen her do it. Just ignore me. Walk away from it and carry on the way we're going. Then accuse me of trying to get her to take meds just to make my own life easier. Hate on me even more than she does now. If that's at all possible.
***
If I weren't around, would things be worse or better for MW?
Is the reason she can still, somewhat, get out of bed and face every day because I'm there to keep her between the ditches - even though she resents the hell out of me? I take the abuse because I'm doing good. Yes?
If I were gone, what would MW do? What could she do?
Live with her family? That would be hell. No hyperbole. I've seen it; it is hell. Constant screaming, hitting, and black, black hate.
Still.... That's her family. It's where she comes from; where she may belong. It's what she reverts to when nothing else seems familiar.
She's obviously not happy with me. Just because I can't fathom happiness in her family environment, doesn't mean she....
***
Interlude:
I'm drunk. At work. Again. Yes, I know I was supposed to be observing my 4th of July lent - but events conspired against me. Oddest thing - I was picking up a togo order for MW and the twerp of a millennial bartender (sorry, he wasn't a twerp. Actually seemed like a nice guy. Anyway) asked me to "try something". A shot glass of a Mojito blend he was working on. Well. Yeah.
Couldn't really taste the booze. It was all syrup and mint. Nevertheless, I'm drinking again.
***
Not much time left, and I want to make sure these points come across:
I'm an asshole unless I'm not.
Either way - asshole or not - it is likely that I'm better off dead.
So. What am I going to do about it?
Post script.
This low feeling.... how much of it is alcohol? Curious question. I was very miserable without the drink; but recall, looking forward to my next one was all that kept me going.
Now that I've had the "next one" and many ones after, what's the point?
The bottle takith away; the bottle givith. Or do I have that backwards?
I have to go home now. Goddamnit.
Things are bad with MW. Very bad. Picture this: last night I'm in mud boots, chemical gloves, industrial strength face mask and liquid Clorox swamping out the guest bathroom because one of the worker's she'd hired to repair the fence had asked to come in and use the bathroom. Foolishly, I allowed it. Now she's yelling at me and demanding I use Clorox to disinfect everything - and I mean everything, even the doorknobs - that he might have touched.
And that wasn't even the worst. It only cost around $100 worth of cleaning supplies/safety equipment and a couple hours. We won't go into all the time and money spent "fixing" up the house under the loopy-eye of dementia.
Also, my new favorite past-time is to take a quiet moment and look at MW. Just watch her as she sits in front of the TV. Observe her hands spasm; her legs jerk. Her fingers twitch and her mouth contort.
And yet she has no awareness. None. Everyday is spent making "house" plans then applying for jobs - which she'll never get.
She bought a wig to look younger when she goes on interviews; certain that it's her age what's causing her to lose jobs. Jesus wept.
I go along with - no, in fact, I encourage this behavior. It sometimes keeps her from screaming hateful words at me.
I am such an ass.
***
However, what if....
If I sat her down and told her that she needs to stop, take a breath, and face facts: she has Huntington's Disease.
Shining light from God and glory on high - she realizes time is short and we'd better start making the most of it.
Or
Flames from hell rising to engulf us both - depression. Suicidal depression.
But
The reality? Reality....
I think she would block me out - I've seen her do it. Just ignore me. Walk away from it and carry on the way we're going. Then accuse me of trying to get her to take meds just to make my own life easier. Hate on me even more than she does now. If that's at all possible.
***
If I weren't around, would things be worse or better for MW?
Is the reason she can still, somewhat, get out of bed and face every day because I'm there to keep her between the ditches - even though she resents the hell out of me? I take the abuse because I'm doing good. Yes?
If I were gone, what would MW do? What could she do?
Live with her family? That would be hell. No hyperbole. I've seen it; it is hell. Constant screaming, hitting, and black, black hate.
Still.... That's her family. It's where she comes from; where she may belong. It's what she reverts to when nothing else seems familiar.
She's obviously not happy with me. Just because I can't fathom happiness in her family environment, doesn't mean she....
***
Interlude:
I'm drunk. At work. Again. Yes, I know I was supposed to be observing my 4th of July lent - but events conspired against me. Oddest thing - I was picking up a togo order for MW and the twerp of a millennial bartender (sorry, he wasn't a twerp. Actually seemed like a nice guy. Anyway) asked me to "try something". A shot glass of a Mojito blend he was working on. Well. Yeah.
Couldn't really taste the booze. It was all syrup and mint. Nevertheless, I'm drinking again.
***
Not much time left, and I want to make sure these points come across:
I'm an asshole unless I'm not.
Either way - asshole or not - it is likely that I'm better off dead.
So. What am I going to do about it?
Post script.
This low feeling.... how much of it is alcohol? Curious question. I was very miserable without the drink; but recall, looking forward to my next one was all that kept me going.
Now that I've had the "next one" and many ones after, what's the point?
The bottle takith away; the bottle givith. Or do I have that backwards?
I have to go home now. Goddamnit.
Wednesday, June 27, 2018
2018.06.25
It's MW's birthday today. The big five-oh.
How many more? Ten. Unless my research is way off; ten max.
How many more until she finds out? Now this is an interesting question. Here we're in territory where research is no help. In fact, "research" has probably skewed my perception of reality on this one.
Research has it that once the symptoms become noticeable, the decline is typically swift.
As it was with my mother in law.
MW, on the other hand, is still charging full-speed ahead! Or, rather, charging full-speed in circles. Five years and counting of nothing getting done.
How many more?
***
And, as if we needed more proof of they cyclical nature of this disease - I've another cracked tooth. Again, not much pain yet, just a nuisance. The pain will come later.
Recall last time this happened was at the very onset of MW's Huntington's disease symptoms. She wouldn't have been able to deal with me going to the dentist, so I did it behind her back. I would have gotten away with it too, except that extracting two wisdom teeth left the side of my face black, blue and swollen. Hard to hide and any lie would come across worse than the truth.
This time I think I could probably ask her for permission to go to the dentist, and she would likely give it; because she has gotten better about some things.
***
More buzz about suicide. Yes, they're still on about Bourdain and Spade. Wankers. MW sat through an entire program about suicide prevention and then came to me with the following wisdom; "I think if someone wants to kill themselves, you should just let them."
She revised it somewhat: "I guess if they're an adult. Kids you should try to stop."
Further: "I suppose they have to give out the hotline number, though I can't see what good it does."
Indeed.
For my part; listening to the sagacity of the doctors, therapists, and "survivors"; I'm struck with how fucking wrong they all are.
None of them could face me or back me down. With Huntington's Disease, suicide is a solution. All their talk is bullshit here.
I could never kill anybody; but if I told MW she has the disease, well, that's a death sentence.
If, however, I killed myself, MW would have to get help. Real help. It wouldn't save her life, but it might make her final days happier. She couldn't possibly be more miserable then she is with me now. Probably, anyway. Very hard to tell with dementia.
Either way, I would be out of it. Released.
All those idiots talking about how "suicide isn't the answer"? They obviously haven't been asked the right question.
How many more? Ten. Unless my research is way off; ten max.
How many more until she finds out? Now this is an interesting question. Here we're in territory where research is no help. In fact, "research" has probably skewed my perception of reality on this one.
Research has it that once the symptoms become noticeable, the decline is typically swift.
As it was with my mother in law.
MW, on the other hand, is still charging full-speed ahead! Or, rather, charging full-speed in circles. Five years and counting of nothing getting done.
How many more?
***
And, as if we needed more proof of they cyclical nature of this disease - I've another cracked tooth. Again, not much pain yet, just a nuisance. The pain will come later.
Recall last time this happened was at the very onset of MW's Huntington's disease symptoms. She wouldn't have been able to deal with me going to the dentist, so I did it behind her back. I would have gotten away with it too, except that extracting two wisdom teeth left the side of my face black, blue and swollen. Hard to hide and any lie would come across worse than the truth.
This time I think I could probably ask her for permission to go to the dentist, and she would likely give it; because she has gotten better about some things.
***
More buzz about suicide. Yes, they're still on about Bourdain and Spade. Wankers. MW sat through an entire program about suicide prevention and then came to me with the following wisdom; "I think if someone wants to kill themselves, you should just let them."
She revised it somewhat: "I guess if they're an adult. Kids you should try to stop."
Further: "I suppose they have to give out the hotline number, though I can't see what good it does."
Indeed.
For my part; listening to the sagacity of the doctors, therapists, and "survivors"; I'm struck with how fucking wrong they all are.
None of them could face me or back me down. With Huntington's Disease, suicide is a solution. All their talk is bullshit here.
I could never kill anybody; but if I told MW she has the disease, well, that's a death sentence.
If, however, I killed myself, MW would have to get help. Real help. It wouldn't save her life, but it might make her final days happier. She couldn't possibly be more miserable then she is with me now. Probably, anyway. Very hard to tell with dementia.
Either way, I would be out of it. Released.
All those idiots talking about how "suicide isn't the answer"? They obviously haven't been asked the right question.
Wednesday, June 13, 2018
2018.06.13
I'm rethinking the whole "this will be the year" thing. MW has shown, like, zero self-awareness. Interviewing for employment invariably leaves her a shattered, weeping mess; moving has become well-nigh impossible; and she makes doing the simplest tasks around the house seem monumental.
Her "clumsiness" has become alarming. She's constantly banging into things; knocking stuff down. The other day, while trying to re-cap a pen, she stabbed herself - hard - in the leg. She inadvertently punched me in the eye; like a comic book character, I saw stars. The dog refuses to eat dog-food. He knows that if he just follows MW around, sits close when she's snacking, he'll get a much better meal. As soon as she moves from the couch, he's right there to Hoover up the leavings - of which there will be plenty.
And yet - through all this - she never once entertains the possibility that she may have HD. Well, okay, that's not strictly true. She has, on occasion, mentioned it as a remote, distant event that might take place somewhere around 2040/2045. Something she can deal with AFTER her life's been lived.
She frequently talks about how she wants to work until she's seventy years old. Even 75, she says. She never wants to retire.
Oh, darling. 75? Oh my dear.
So whereas I started 2018 certain that she could not continue to delude herself; here we are: half way through and still no signs of discernment on her part.
The power of denial is awesome. Truly, it is amazing. MW will slam right into a table; knock everything off, then laugh - "why am I so clumsy?" - and go about as if nothing happened.
***
"Why won't they hire me?" is another constant question - but this is fraught with danger. My pat answers have lost effectiveness from overuse and she grows angrier every time I trot one out:
"You're overqualified."
"They have to advertise the position even if they already know who they want to hire. It's the law."
"That job isn't right for you anyway."
Once acceptable, any of these answers today will land me in a boiling pot of white-hot rage. See, these responses mean I'm not taking her seriously.
Fortunately, there are two I can still get away with:
"They're probably looking for someone younger."
And the one that makes me hate myself even more than I already do:
"They're racist."
Yes, the racism card. Guaranteed to send MW into an ugly, hateful rant on race and ethnicity. They only hire blacks. And Mexicans. This isn't even America anymore. Why can't we make English the national language?
And on and on.
It's depressing. And exhausting - she never lets up! I'm staggered by how much vitriol and nastiness MW can muster when on a tear. And I despise myself for going there, but it beats the alternative.
***
The alternative being me. MW verbally abusing me. Yeah, yeah. Poor baby. But it can get sketchy. When MW turns it on...? So I know when we're in the kitchen and MW has a knife in her hand and she gets mad at me - and really starts unloading; yelling, screaming, calling me every name in the book - hell, I know she's not going to plunge that knife in my heart.
Right?
Of course not.
Still, it gets sketchy.
And before you suggest that I just not do anything to set her off, allow me to relate what happened last night. We're going for a walk at the park and there's a big branch - I mean a very large chunk of a tree -picture cord-wood and you're not far off - sitting just off the side of the walkway. Part of it, in fact, jutting onto the walk.
I move over to allow MW plenty of room to avoid the wood. As we pass it, she comments on how dangerous that is. How someone could easily trip over it. How somebody should be responsible for making sure that doesn't happen.
Then, after we've passed it, MW turns on me: "Why didn't you warn me? You must have seen it? Did you want me to fall?"
And she is furious. Genuinely, not even joking, seething with anger towards me.
I cannot not piss her off.
***
Previously I wrote about how MW has said she made a mistake by marrying me. Recently she's expanded on that. Not only should she have not married me; she shouldn't have married any white guy. It's only because her mother got sick that she even tried dating outside her race.
Understand, this is actually one of our more pleasant conversations. She'll say this when she's not mad at all. No, she talks like this with me; as if I'll sympathize.
And I do. I'm sure she's right. I have to be a tremendous disappointment.
Still, she relies on me for everything - I mean, everything. Cooking, cleaning, making her bed, listening to her rant about how terrible I am.
I'm a caregiver for someone who hates me.
***
Which brings us to the topic of suicide. Rather on point, as the world comes to grips with two recent celeb suicides; Spade and Bourdain. Couldn't care less about either of them - except I actually actively disliked Bourdain. Understand I eschew all television - that's MW's domain. She has it going all day, all night, to whatever bullshit station she wants. Mostly Fox news, but she also liked Bourdain's show. And the Real Housewives. So he never had much of a chance with me anyway.
However, even without being lumped in with such reprehensible company, he struck me as being an egotistical, self-impressed blow-hard who made every meal about himself. Whatever. And to his credit, in the glut of info that was bandied about after his death, I learned that he had, in fact, self-diagnosed himself as being a narcissist. Too fookin' right, mate!
But now everyone is reporting on mental health issues and promoting suicide prevention. My favorite being, "Suicide is a permanent solution to a temporary problem."
Nice, right? Because we all know Huntington's Disease is a temporary problem.
And of course all the noise about counseling or "just talking with someone".
I've can't imagine there is anything anybody could say that would help me through this illness; except maybe "close your eyes, this won't hurt a bit." Conversely, who could I possibly talk to that would understand what I'm going through? Only another HD caregiver; more, only one who is trying to hide the truth of the condition. And why would I trust someone like that?
***
I'm good for awhile anyway. I really do have something to live for: my next drink. See, the 4th of July lent is working - I want to live so I can have a fucking beer. Then some vodka. Maybe that fruity wine too.
I ache for it. I think about it all the time- it keeps me going.Whenever I feel too, too down, I imagine the first sip.
I want to live to drink again!
Which worries me. Hopping on the wagon was rough this time. The worst of it being a very nasty dream about, you got it, suicide.
In the dream, I was at the top of a tall building, explaining to somebody why it was safe to be there; all the while knowing I could die just by moving my feet from the ledge.
And I was compelled to move my feet. I felt myself moving them. Even while talking about safety, I was inching towards the abyss.
I woke up feeling disoriented and sick. Sure, withdrawal, but even more: I regretted.... Not falling.
I'm not doing it justice, but it was bad. See, there's HD logic behind suicide: dead I wouldn't have to face the horrors of the disease stealing my wife away from me. I wouldn't have to suffer through the hatred and anger anymore. No more fear of her getting hurt or hurting others. And, really, if I were gone, she'd have to get the help she needs because she can't handle life by herself anymore.
The lies would stop. As would the odd and various physical pains that wrack and wreck me.
This all makes sense, and I can bandy it about in my head, then consider that I can go another, maybe year? Maybe day? Anyway, I don't have to do it now. I can put it on the shelf and take it down later.
But the dream? That brought me low. It felt more real than making a logical, clear headed decision about ending my life.
The compulsion to go off the building was visceral. It was in my guts.
It was hard to wake up.
The question is: what will happen when I start drinking again? I'm not sure I can handle another such dream.
Friday, May 25, 2018
2018.05.25
Last night I duct taped washcloths around the doorknobs in MW's bathroom so she doesn't hit her head when using the toilet. "Don't they make safe doorknobs?" she asks.
"Most people don't have problems with doorknobs," I answer.
Later, around midnight, she wakes me up in a terrified panic. She's trying to floss but can't wedge the string between her teeth; too much plaque.
The night before she woke me up at the same time to move a heavy blanket. So heavy, this blanket, that she was afraid it might strane her arm were she to try and adjust it.
Before that, it was 3:00am when MW had a crying fit over a pain in her hip. Arthritis, she was sure, and we stayed up the rest of the night worrying.
I am exhausted.
The ebb and flow nature of my job is flowing now and I've been working 12+ hour days - that's straight up work: no breaks, lunch at my desk, no walking around. Tack on a two hour a day commute, then home for cleaning and cooking and care-giving.
This is what a zombie must feel like. Except, of course, they're already dead. Lucky.
***
MW was hired last week. She filled out all the paperwork, even went to take the drug test. Then the night before she was supposed to start, she sent an email saying she couldn't take the position. Another, better job came along, she lied.
Dodged that bullet. MW needs to be kept as far away from people as possible so nobody accidentally sends her over. So far her own dementia has taken care of this - she really can't commit or make up her mind about anything. But it does cause distress. "What am I going to do with my life?" she cried after turning down the job.
Nothing much. Die, mostly. Spend a lot of time dying.
***
Having walked away from employment, MW is now determined to travel and see friends. Eh, we'll see. This is another one of those deals where I get to be a totally useless asshole and will still likely get my way. Of course we can't travel - MW can barely survive in her own house. No way she'll adapt to strange buildings/strange rooms, therefore, I'm terrified she'll actually commit to going.
So how do I prevent it?
By doing nothing. I tell her to plan the trip and I'll show up. Whenever she asks for my advice, help, or opinion on anything, I just reply "Whatever you think is best." and let her spin around uselessly until the decision doesn't get made.
This almost always works; and I'm trusting it'll pull us through again.
***
As it has with the house situation. We can't renovate because MW wants to move instead; but we can't move because there are no suitable houses. What, then, is a suitable house? Let's see: one story only; not anywhere near any kind of water (including drainage ditches, ravines, retention ponds.... basically anything wet.), not near a school (kids are horrid), can't have big trees (they'll fall and kill you!), no Asian prior owners (seriously), can't be situated off a busy street - or even a slightly busy street - hell, any street where cars can achieve speeds of 30+ miles per is dangerous. On and on . Really, every house she's looked at has had something wrong with it. And brother, believe me, if she doesn't immediately find something, all I need do is make a weak, mushmouthed comment about something and it'll stick in her mind like a catchy pop song. "Oh, look. This street has a bike lane." I noticed at one place.
Ha! There's another for the list: can't be next to a bike lane.
***
I may have had an honest to God alcohol induced hallucination. Not a pink elephant, but close: green fireworks. One quick starburst in the sky. I was with MW and I made a comment about it - I can't remember what - but her response was non-committal. Then I started wondering - why would somebody shoot off one star-burst fire cracker in early May in a suburb? Also, I know MW, if she had seen it too, she would have gone off: "that's illegal; nobody should do that; fire hazard; blah blah blah." So she must not have seen it - even though it filled the sky.
And I hadn't heard an accompanying "boom". Just the flowering then fading green lights against the black night.
Had I really seen it? Even now, I'm not sure.
So I stopped drinking; but I'm doing it smart this time: I'm not making any long term sobriety plans; this is only a July 4th lent. 40-someodd days of self-denial until the nation's birthday. Then I'll start drinking again until around September when I'll go on a Halloween lent. You see how this works. After Halloween; back in the bottle until Easter for real lent.
This I can live with. I think I can live with this.
***
If only it wasn't for these headaches. Don't worry about my liver going soft on me during the dry times - I'm popping Advil like M&Ms.
"Most people don't have problems with doorknobs," I answer.
Later, around midnight, she wakes me up in a terrified panic. She's trying to floss but can't wedge the string between her teeth; too much plaque.
The night before she woke me up at the same time to move a heavy blanket. So heavy, this blanket, that she was afraid it might strane her arm were she to try and adjust it.
Before that, it was 3:00am when MW had a crying fit over a pain in her hip. Arthritis, she was sure, and we stayed up the rest of the night worrying.
I am exhausted.
The ebb and flow nature of my job is flowing now and I've been working 12+ hour days - that's straight up work: no breaks, lunch at my desk, no walking around. Tack on a two hour a day commute, then home for cleaning and cooking and care-giving.
This is what a zombie must feel like. Except, of course, they're already dead. Lucky.
***
MW was hired last week. She filled out all the paperwork, even went to take the drug test. Then the night before she was supposed to start, she sent an email saying she couldn't take the position. Another, better job came along, she lied.
Dodged that bullet. MW needs to be kept as far away from people as possible so nobody accidentally sends her over. So far her own dementia has taken care of this - she really can't commit or make up her mind about anything. But it does cause distress. "What am I going to do with my life?" she cried after turning down the job.
Nothing much. Die, mostly. Spend a lot of time dying.
***
Having walked away from employment, MW is now determined to travel and see friends. Eh, we'll see. This is another one of those deals where I get to be a totally useless asshole and will still likely get my way. Of course we can't travel - MW can barely survive in her own house. No way she'll adapt to strange buildings/strange rooms, therefore, I'm terrified she'll actually commit to going.
So how do I prevent it?
By doing nothing. I tell her to plan the trip and I'll show up. Whenever she asks for my advice, help, or opinion on anything, I just reply "Whatever you think is best." and let her spin around uselessly until the decision doesn't get made.
This almost always works; and I'm trusting it'll pull us through again.
***
As it has with the house situation. We can't renovate because MW wants to move instead; but we can't move because there are no suitable houses. What, then, is a suitable house? Let's see: one story only; not anywhere near any kind of water (including drainage ditches, ravines, retention ponds.... basically anything wet.), not near a school (kids are horrid), can't have big trees (they'll fall and kill you!), no Asian prior owners (seriously), can't be situated off a busy street - or even a slightly busy street - hell, any street where cars can achieve speeds of 30+ miles per is dangerous. On and on . Really, every house she's looked at has had something wrong with it. And brother, believe me, if she doesn't immediately find something, all I need do is make a weak, mushmouthed comment about something and it'll stick in her mind like a catchy pop song. "Oh, look. This street has a bike lane." I noticed at one place.
Ha! There's another for the list: can't be next to a bike lane.
***
I may have had an honest to God alcohol induced hallucination. Not a pink elephant, but close: green fireworks. One quick starburst in the sky. I was with MW and I made a comment about it - I can't remember what - but her response was non-committal. Then I started wondering - why would somebody shoot off one star-burst fire cracker in early May in a suburb? Also, I know MW, if she had seen it too, she would have gone off: "that's illegal; nobody should do that; fire hazard; blah blah blah." So she must not have seen it - even though it filled the sky.
And I hadn't heard an accompanying "boom". Just the flowering then fading green lights against the black night.
Had I really seen it? Even now, I'm not sure.
So I stopped drinking; but I'm doing it smart this time: I'm not making any long term sobriety plans; this is only a July 4th lent. 40-someodd days of self-denial until the nation's birthday. Then I'll start drinking again until around September when I'll go on a Halloween lent. You see how this works. After Halloween; back in the bottle until Easter for real lent.
This I can live with. I think I can live with this.
***
If only it wasn't for these headaches. Don't worry about my liver going soft on me during the dry times - I'm popping Advil like M&Ms.
Monday, April 30, 2018
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.
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.
Monday, April 16, 2018
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.
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.
Friday, April 6, 2018
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.
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.
Friday, March 23, 2018
2018.03.23
Sleep has been an on-going issue, but it's getting near critical. MW just cannot stay in bed when the moon is high. Right around midnight is when she'll start getting antsy about things, and tear about the house like the Tasmanian devil - demanding all sorts of adjustments: the bed-sheets must be changed, the nightlights turned off (then on again; then off, etc.), and dozens of sheets of paper taped upon the wall or on the car to remind us of things to be done in the morning.
And what's worse than getting by on meager rest, is the fact that if only I were a little bit clever or brave, I could stop - or at least mitigate - this behavior.
See for some odd reason, Huntington's Disease lowers the body's melatonin, a hormone responsible for setting our sleep cycles. So when I'm ready to crash after an exhausting 20 hour day, MW is hearing the rooster crow in her head. And away we go!
Now then: melatonin supplements are cheap and easily accessible. If only I could find a way to convince MW to take them without bringing up HD...? Seems like a simple solution - casually mention that doctors say melatonin is really, really good for you - she should start taking some. Ah, but MW would never go for that. She doesn't trust ANY pharmaceuticals. Yes, I hear you. Melatonin supplements are not drugs - I know, I know - but that wouldn't matter to MW. She still wouldn't take them based on my recommendation alone. I'm the one who tried to poison her water, remember?
I keep hoping one of the talk show hosts she follows will do a commercial for it. Hell, that's why she takes calcium magnesium - thank you, Dr. Oz!
Or there's this: I could sneak some into her food. OOOORRRR - replace those Cal Mag capsules with Melatonin? Worth a try.
So deceitful. For her own good, but Goddamn.... So wrong.
***
Depression's won. Mentally, I don't even fight it anymore. I've been spinning, looking for an exit from this crazy place for so long now, my legs have gone out. I am flat on my ass.
If I want an exit; I have to make it myself. I know this.
It seems now, however, body has joined mind and they both want me to start drawing up a blueprint for the exit door.
I've read where people described their nervous breakdowns, but it always seemed like bad fiction. Words like "crushing" and "crippling" being bandied about. Stop being so dramatic; it ain't a car-crash; it's just depression.
Well then; twice within the past week I've been left immobile - slack-jawed with tears of pain brimming over - just because of depression.
Quite literally, it felt like a giant fist had clenched around my body and squeezed. My spine contracted; my ribs pulled together. I could only draw in weak breaths.
I was being crushed; too crippled to move.
Such a fucking drama queen!
The prompts for these events aren't worth revisiting; but they were both based on MW's behavior. HDDQ! And I had no endurance left. None. The next hate-filled, rage-fueled, profane and destructive word spat at me from MW's snarled mouth would be the last. I was done. Mentally, done.
And my body tried very, very hard to make that happen physically as well.
I need an exit.
And what's worse than getting by on meager rest, is the fact that if only I were a little bit clever or brave, I could stop - or at least mitigate - this behavior.
See for some odd reason, Huntington's Disease lowers the body's melatonin, a hormone responsible for setting our sleep cycles. So when I'm ready to crash after an exhausting 20 hour day, MW is hearing the rooster crow in her head. And away we go!
Now then: melatonin supplements are cheap and easily accessible. If only I could find a way to convince MW to take them without bringing up HD...? Seems like a simple solution - casually mention that doctors say melatonin is really, really good for you - she should start taking some. Ah, but MW would never go for that. She doesn't trust ANY pharmaceuticals. Yes, I hear you. Melatonin supplements are not drugs - I know, I know - but that wouldn't matter to MW. She still wouldn't take them based on my recommendation alone. I'm the one who tried to poison her water, remember?
I keep hoping one of the talk show hosts she follows will do a commercial for it. Hell, that's why she takes calcium magnesium - thank you, Dr. Oz!
Or there's this: I could sneak some into her food. OOOORRRR - replace those Cal Mag capsules with Melatonin? Worth a try.
So deceitful. For her own good, but Goddamn.... So wrong.
***
Depression's won. Mentally, I don't even fight it anymore. I've been spinning, looking for an exit from this crazy place for so long now, my legs have gone out. I am flat on my ass.
If I want an exit; I have to make it myself. I know this.
It seems now, however, body has joined mind and they both want me to start drawing up a blueprint for the exit door.
I've read where people described their nervous breakdowns, but it always seemed like bad fiction. Words like "crushing" and "crippling" being bandied about. Stop being so dramatic; it ain't a car-crash; it's just depression.
Well then; twice within the past week I've been left immobile - slack-jawed with tears of pain brimming over - just because of depression.
Quite literally, it felt like a giant fist had clenched around my body and squeezed. My spine contracted; my ribs pulled together. I could only draw in weak breaths.
I was being crushed; too crippled to move.
Such a fucking drama queen!
The prompts for these events aren't worth revisiting; but they were both based on MW's behavior. HDDQ! And I had no endurance left. None. The next hate-filled, rage-fueled, profane and destructive word spat at me from MW's snarled mouth would be the last. I was done. Mentally, done.
And my body tried very, very hard to make that happen physically as well.
I need an exit.
Tuesday, March 13, 2018
2018.03.05
Huntington's Disease: The reason God invented murder/suicide.
Superimposed over the image of a CAG repeat chart.... I bet that'll sell some T-shirts!
Yeah, I guess you could say it's been a rough few weeks. MW has started insisting I stay home from work to "help" her while she treats the fungal infection on her feet - which has, apparently, now spread to her hands(?).
So I get to stay home and be a full-time honest to goodness caregiver. Visiting angel; that's me. Just ignore the horns.
Mary Mary quite contrary
What makes your horns grow?
First and foremost, I gain Satanic stature by propagating and maintaining the lie. MW does not have Huntington's Disease. Uh huh. And how exactly does this work?
I help her apply for dozens - hundreds - of jobs, but every time she fails a face to face interview? Well, that's because MW is over-qualified, or they already know who they're going to hire but have to go through the steps for legality sake, or (and this is rapidly becoming my favorite) everybody is racists.
Also, MW loves to make big plans. Travel plans. Home improvement plans. Even just diner with friends plans. Great, I say.
You plan it, I say, and I'll show up.
Ha!
The plans inevitably spiral away into the realm of the attainability bizarre and nothing gets done.
But that's not my problem. I absolve myself from any responsibility. "Whatever you want to do; just let me know, and we'll do it."
I say that twenty times a day and nothing ever gets done.
Fine by me.
What a fucking asshole, right? Yup. But check it: the only way to actually get things done would be to override MW's nascent dementia. And the only possible (not certain, only possible) way to do that would be to address the issue.
Tell her she's sick.
End her, basically. Drop her in that hole.
Or, maybe, if she were more aware of her circumstances, she would allow me to make those plans; see those friends; do the important things.
Before it's too late.
Rolls reversed; that's what I'd want.
Of course, rolls reversed, I'd've killed myself three years ago. Maybe five.
And let us not forget the last, but certainly not least, reason why my demonic horns have grown so huge and intractable: MW routinely berates, curses, belittles, yells-at, accuses, and insults me.
Whatever. I take it.
But, goddamn, it makes me feel like a monster.
***
The other day MW knocked me down. I guess she was trying to be playful (?), but when she pushed me, I went sprawling. This speaks to the freakish strength the chorea has bestowed. I'm a big guy. MW isn't all that much. But when she "accidentally" bumps into me, I'm scooping myself up from the floor.
More fun and games with HD.
Superimposed over the image of a CAG repeat chart.... I bet that'll sell some T-shirts!
Yeah, I guess you could say it's been a rough few weeks. MW has started insisting I stay home from work to "help" her while she treats the fungal infection on her feet - which has, apparently, now spread to her hands(?).
So I get to stay home and be a full-time honest to goodness caregiver. Visiting angel; that's me. Just ignore the horns.
Mary Mary quite contrary
What makes your horns grow?
First and foremost, I gain Satanic stature by propagating and maintaining the lie. MW does not have Huntington's Disease. Uh huh. And how exactly does this work?
I help her apply for dozens - hundreds - of jobs, but every time she fails a face to face interview? Well, that's because MW is over-qualified, or they already know who they're going to hire but have to go through the steps for legality sake, or (and this is rapidly becoming my favorite) everybody is racists.
Also, MW loves to make big plans. Travel plans. Home improvement plans. Even just diner with friends plans. Great, I say.
You plan it, I say, and I'll show up.
Ha!
The plans inevitably spiral away into the realm of the attainability bizarre and nothing gets done.
But that's not my problem. I absolve myself from any responsibility. "Whatever you want to do; just let me know, and we'll do it."
I say that twenty times a day and nothing ever gets done.
Fine by me.
What a fucking asshole, right? Yup. But check it: the only way to actually get things done would be to override MW's nascent dementia. And the only possible (not certain, only possible) way to do that would be to address the issue.
Tell her she's sick.
End her, basically. Drop her in that hole.
Or, maybe, if she were more aware of her circumstances, she would allow me to make those plans; see those friends; do the important things.
Before it's too late.
Rolls reversed; that's what I'd want.
Of course, rolls reversed, I'd've killed myself three years ago. Maybe five.
And let us not forget the last, but certainly not least, reason why my demonic horns have grown so huge and intractable: MW routinely berates, curses, belittles, yells-at, accuses, and insults me.
Whatever. I take it.
But, goddamn, it makes me feel like a monster.
***
The other day MW knocked me down. I guess she was trying to be playful (?), but when she pushed me, I went sprawling. This speaks to the freakish strength the chorea has bestowed. I'm a big guy. MW isn't all that much. But when she "accidentally" bumps into me, I'm scooping myself up from the floor.
More fun and games with HD.
Thursday, February 22, 2018
2018.02.22
Another death. This time a friend's mother. Point of clarification - I have no friends. Really, she's an old school-mate of mine whom I reconnected with via email a long time ago. We trade bouts of emails every so often, but haven't spoken in fifteen years; haven't seen each other in almost twice that.
Anyway, last year she'd informed me about her mother having a stroke and being in a nursing home. Sad. Just today I get the note that she's passed on. Well.
Again, unbidden and inappropriate, I marvel how wonderful it is that her mother's problems are over. Of course I don't mention this in my reply; "You're mom died? Wow. Good for her."
But that's it. That's where I go with death. Can you blame me? The fucker lives in my house and never sleeps. He's always there, filling every room; every corner with madness, sickness and despair. And he won't leave without taking one of us along.
And he's so powerful. Absolutely in control. All I can do is wait helplessly for him to act. So when I hear about death taking somebody else...? Lucky. They're lucky.
***
Returning to the documentation I downloaded regarding the cognitive effects of Huntington's disease, there was a pamphlet on driving cessation in HD. Again, I was struck by the eerie exactitude of symptoms. Specifically, spacial perception. I'm forever cautioning MW that she is too close to the curb/other car/median, etc., and she rarely makes a clean turn these days. Whenever she parks a car in the garage, there will not be enough room to open the door on one side or the other.
What manner of disease is this? How can it be so precise in the ways it fucks you over?
More: one document cautioned caregivers that the HD patient may employ racial slurs. Oh, come on, now, that can't be part of the disease! Surely such discrimination must be learned behavior; not a symptom.
I don't know.... I don't recall MW being as intolerant as she is now; not when we first met. These days, however, she sees the world almost exclusively in terms of racial profiles; generally unfavorable, mostly downright hateful, profiles. I've long since stopped trying to steer her away from racism - it's a lost cause and almost always comes back to bite me when attempted ("The reason America is going down the drain is because wimpy white people like you don't fight anymore!"). Plus, because she herself is an immigrant - born in Bombay - her tirades against foreigners comes off somewhat comical. Or they did at first. Now, it's just depressing and exhausting.
But, apparently, this too is a symptom of HD. I guess. Seems impossible, but according to the documentation, racism is common enough that it ranks being mentioned as one of the disease's many cognitive disorders.
Truly uncanny.
***
While I'm at it; I might as well take a moment to explore the documented caregiver "symptoms of overworking and chronic stress". First two: irritability and depression. Fucking duh. I put on a brave face, but these days my silent thoughts are almost exclusively "fuck off" and "I wish I was...".
Vague physical pain: I do have a self-diagnosed hernia. That provides plenty of vague physical pain. Conveniently, I use it to explain everything from twisted guts to spiking headaches.
Insomnia and occasional dizziness: Yes, but I can put these on the feet of alcoholism and, recently, abstinence from alcohol. Fucking lent. 31 more days.
Fears: Interesting that they mention fears, for indeed I have passing waves of unaccountable dread. Initially, I chalked this up to worry over MW having a bad accident; but after so many years, I can't say that's forefront anymore. I'm resigned to it. Whenever I don't hear from MW, she doesn't answer the phone, or is late picking me up, I feel no anxiety; only sad resignation. When she does eventually show up, there's no relief, just the thought, "Oh well. Next time."
So why the fear?
I can't say I care much about my own health or vitality. I still end every night with a silent prayer that morning won't come. When those "vague physical pains" ratchet up, I gulp two Advils and ignore them. As a counter to MW's incessant worry over cancer, I could care less about the odd stabs of pain or skin discolorations blooming over my sagging body.
No, I don't fear my own mortality.
What, then? The best I can do is the impression that I'm out of time. A few days ago, when experiencing a moment of inexplicable fear, I had a fleeting thought that I'd better do something fast. It was a feeling of directionless, anxious, nervous energy.
It panicked me.
Tiredness: Again, duh. The tragedy here is that I'm too exhausted these days to even read. I used to read a lot. It was an escape. I really miss that.
Tuesday, February 20, 2018
2018.02.20
I'm so glad we never had children. Not necessarily because of the disease, but just.... Life. How miserable, hopeless and stupid it's all become.
Okay, maybe that philosophy -or the statement of such - is flavored by the disease, nevertheless: look around. Value has been removed from everything; replaced by accessibility. The quality of the aggregate of things that gave life (as I knew it) meaning has been replaced by quantity. Friends, art, literature, intellectual curiosity, debate and introspection. None of these are elevated anymore; all of them are buried in a glut of casual acquisition.
Well. Boo hoo. MW and I would still be dying SSQQ, even if the internet had never been born.
***
Yesterday somebody added a bag of garbage to our collection for trash pick-up. I'd finished another round of purging junk from the casa, so there were around seven large black bags of debris waiting for removal. To this, somebody added a small, white bag of mostly food-stuff (fast food wrappers, drink bottles, etc.) set on top of the pile.
This very nearly destroyed MW. She was certain one of our neighbors did it as a way to insult or intimidate us.
Here's how I tried to walk her back: it makes no sense for anyone to do that with the intention of causing us dismay because most of the time the garbage men pick up early. The only reason MW had even seen that bag was because she didn't go walking in the morning so she got home before it had been removed. It could not have been meant as a "statement" if, under normal circumstances, nobody would have noticed. I explained that the most logical explanation was some service provider - a lawn mower, renovator, cable repair truck, etc. - saw the big pile of garbage and decided to chuck their refuse along with. Simply a matter of convenience for some lazy, inconsiderate person.
MW would have none of it. She blamed the neighbor across the street because they have a teenage daughter. Teenagers do things like that. They're terrible these days. Probably on drugs.
I couldn't persuade her otherwise. The neighbors are trying to drive us away by putting their garbage with ours.
So now we have to move. She's busy looking for houses today.
Whatever. MW can't maintain any significant course of action these days. The chance of us actually buying a new house are almost nil. In fact, she just now called to ask, "Could I afford the taxes on a $350,000 house if you die?"
Nice. The truth, of course, is "Hell, no." Actually, it would be "If I die before you? Game over, man."
What I said was, "Idon'tknowmaybe." That's always good enough.
***
One of the Huntington's Disease sites changed it's layout the other day so I went surfing and downloaded some pamphlets on behavioral and cognitive changes. It is spooky how EXACT the information is. Every single one of the bullet points for major characteristic behavior changes in an HD victim describes MW to the T. "Loss of drive or initiative" Check. "Mental Inflexibility" Check Check. "Lack of concern for one's appearance" MW routinely leaves the house with her clothes on inside out/backwards/unwashed. "Decreased ability to empathize in the feelings and needs of others." Too right!
Side note: under the Tips for carers, they suggest you "Recognize the symptoms of overworking and chronic stress: Irritability; depression; vague physical pain; insomnia; occasional dizziness; fears; tiredness."
Good lord. I'm batting 1000.
I'm sure I've laid eyes on all this information before, but there a cold comfort in recognizing new symptoms. Awhile ago I'd mentioned how MW had started lagging in her responses to events or questions. How five, ten, or even more minutes would go by before she'd react. Well, that's there too: "Speed of cognitive processing is slower."
If only I could use this information to somehow gauge where MW is at in the progression.
Wednesday, February 14, 2018
2018.02.13
Passed another mile-marker yesterday. Pulled up to the teller's window, gave MW the deposit slip, and she could not remember our bank number. This is a number she has had committed to memory for years. Something she uses at least once a week - often more - as she obsessively checks the balance over the automated phone system.
But yesterday it would not come to her when she needed it.
And worse than Huntington's Disease march to this higher ground was watching MW react to the new normal. The expressions on her face quickly running from curious to bewilderment until they settled upon furious. After the teller looked up our account through my driver's license and handed me the receipt, MW snatched it out of my hand and said, "Goddamnit, I knew it! I knew that number!" then violently crushed the paper and threw it aside.
***
Speaking of; "settling upon furious" has become the default around Casa Muncie. MW flies into a rage over everything, anything, nothing. She usually turns it around pretty quickly, apologizes, blames it on not being able to find work, but it leaves scars.
The other day, while helping her fill out applications, she came upon a very, very foolish employer who posed the question: What is unique about you? Impress us!
MW demanded I provide her with something impressive. I gave a safe platitude; something along the lines of "I'm great with customers and a loyal employee".
This infuriated MW. I wasn't even trying, she claimed. Then she went on an extended rant about how she's unique because all the hardships she'd been through and on and on. When I tried - gently - to bring her back to the reality that the employer wasn't really looking for all that, she exploded. She said she hated me. Called me evil. Regretted every day we'd spent married. Then asked if I wanted a divorce.
To my shame, I said; sure, why not? After all, if I'm evil and you hate me...?
She eventually walked it back - sort of - but damage done.
***
Another example: last night after getting off work, MW wanted to go walking around the mall. I asked her if I could use the bathroom at one of the department stores. She stormed away, furious that I hadn't thought to use the bathroom before leaving the office. It isn't safe, using public restrooms, and I'd ruined the whole night just by asking.
Quite literally, it's gotten to the point where I can't even take a piss without pissing MW off.
***
As I said before; this will be the year when MW can no longer hide from the reality. Her movements have gotten very rough. Even when she's just trying to touch me, it's like getting slapped. When she grabs my arm, it's like a wrestling move. And, as always, she can't eat without the food going all over the place.
Add to that forgetting every-day information like the account number and the fact that nobody - and I mean nobody: she's even lowered herself to applying at retail stores - will hire her once they've seen her.... I have to believe this is it.
***
I gave up drinking for lent. Again. Yesterday I pushed the whole Fat Tuesday a little far, so I'm fuzzy and achy right now. Going to be a long 40.
Wednesday, January 31, 2018
2018.01.31
His problems are over.
God help me, that's the first thought came to mind when I heard a co-worker, and friend of sixteen years, had died in a car crash.
He wasn't even forty years old; two young kids, beautiful wife.
And now his problems are over.
The Huntington's Wars have harden me.
My friend wasn't withering away from disease; he wasn't in any pain - mental or physical. He and his family were young, healthy, and vibrant with big, big dreams. But my first reaction - unbidden and, fortunately unspoken - when I was told he'd died suddenly was Good for him.
His problems are over.
I loath myself and what I've become.
***
In keeping with the theme of self-hatred; I came very close to deliberately crashing the car the other day. It was in the fever pitch of another white-hot HD battle. MW was in the passenger's seat screaming at me. Screaming like a banshee. Screaming incoherently; painfully, a sound so full of hate and rage, it warps reality. How can this be real? The sounds coming from MW right now aren't human.
My foot went down on the accelerator; my hands twisted on the steering wheel. What's the harm? This can't be real anyway.
Still, I kept it between the ditches.
I'm a long-time veteran of these wars. I've been back and forth over the minefields countless times. This explosion was close, but, I guess, not close enough. Not yet.
***
The screaming started when I made the wrong turn off the freeway. Kind of. We were driving to an unfamiliar town so MW could see where she was going to be interviewing for a job the next day. Yes, she's still trying to find work - no, nobody will hire her. Anyway, the directions were suspect so she told me to pull over and check them. I decided to make a left turn exit as that would make retracing our steps easier, plus, I'd spotted a convenience store where I could easily stop and look at the printed instructions.
MW, however, wanted me to turn right, and said so very angrily.
In my haste to obey, I had to swerve and brake hard to make the turn.You don't disobey MW. Even when she doesn't make sense.
MW deemed the sharp swerve and heavy brake a rebuke upon her command; and thus the screaming commenced.
***
I'm drinking too much, again. Last time I hopped on the wagon, it came on the heels of an unsettling reality break. I should probably try to get ahead of that.
Friday, January 26, 2018
2018.01.26
I drink to keep it on a level. When MW takes flight on a particularly erratic HD wind, and I need to stay with her, I drink. What else can I do?
It has become impossible to maintain status while sober.
There is a toll, however, and I'm paying it in full.
Yesterday MW had a rough go of it. There's been an on-going issue with our phone service - basically MW got spooked because one of her former work acquaintances called too many times so she changed our number, paid to have all calls marked "private", and removed us from the internet "phone book".
She then decided to change everything back. Unfortunately, that turned out to be a whole deal, so she spent much of the day yelling at people on the telephone.
Also, she got a call from a potential employer who asked if he could interview her at a Starbucks. An insurance agent, he said his office hadn't been set up yet.
This really spooked MW. No way would she ever meet a stranger at Starbucks; also, once rejected, she was sure the guy would track her down. Even though the home address she posts on the job sites is a PO Box, it still had the zip code, so he knows what city she lives in.
Terrifying!
Finally, MW spilled popcorn all over the living room and yogurt all over the kitchen.
These problems and more were waiting for me when I got home.
***
Sober - no fucking way. Drunk - yes way.
Drunk, I'm able to listen for hours to the paranoid rantings, and keep my wings level in the face of those gale force winds. Never easy, because if you try to lessen the intensity of MW's fears, she'll turn on you quick - citing that you don't care or you don't take her seriously - so you have to agree with much of it, while gently riding her back to solid ground.
A time consuming process.
The phone. No real solution there. We're without home service, but we both have cells, so fuck it. Yes, MW commonly loses her phone and, yes, she never keeps it charged, so there will be problems, but this is one of those things I'm just letting go. Fuck it.
Which brings us to the messes. Popcorn everywhere; yogurt everywhere. And the kitchen looks like a bad comedy - food and dirty dishes in leaning tower of Pisa piles.
My job to clean, ah, but only under MW's watchful eyes. It must be cleaned, but nobody is allowed to touch cleaning supplies or walk on the floor?
How is this accomplished? Magic. Drunk magic.
***
Did I mention MW is having beaucoup trouble sleeping these days? Those in the know know melatonin levels in Huntington's Disease victims are wack. No surprise, then, that MW doesn't really get going until midnight - that's when she decides we have to move furniture around or do more job hunting on the internet.
Not only drunk; but tired as well. I'm staggering around, slurring and missing words. On a level.
Monday, January 22, 2018
2018.01.22
Another lost weekend. Nothing gets accomplished when the household is locked down by HD. MW's inability to make decisions is crippling; especially because she runs the show. I can't go anywhere without her and she's incapable of completing simple errands on her own. Oh, she'll try - going to the grocery store or Target by herself - but inevitably she won't buy everything or the right things.
The weekends, then, are a time for me to get things sorted for the next five days. Except this is becoming more and more difficult as the disease progresses. Groceries, for example. First thing Saturday morning, I suggest we go and get that shopping done. MW agrees. Unfortunately, by the time she's eaten breakfast and gotten herself put together, it's already noon. Now we have to do the shopping she wants to do. When that's finished, I nudge her on the groceries again. She agrees and we drive to the store. Uh oh, it looks too crowded. Plus it's kind of warm. Nope. No shopping now. We'll come back later. After dark. When it's cool.
Understandable. She never actually comes into the store with me; only waits in the car. So, okay, we'll come back later.
Doesn't happen.
Doesn't happen Sunday morning either. Or Sunday afternoon. By Sunday evening, I kinda have to put my foot down and tell her that if we don't go, she don't eat.
And so forth and so on.
***
Three noteworthy behavioral event's happened over the weekend. The least pleasant of which was a particularly nasty bout of anger from MW. These fits aren't new, but this was oddly timed. The dog doesn't like to eat out of his bowl; he prefers it scattered on the tray. No big deal. Both MW and I sometimes give him food and treats on his tray; not in his bowl. As I did Saturday morning.
No problem
Until, about an hour after the dog had eaten, MW blows up; yelling at me, absolutely enraged. And, initially, I have no idea why. Finally, between all the cussing, I figure it out: she's angry that I put the dog's food on his tray.
The abuse is plenty bad and it continues throughout the weekend - with MW suddenly and aggressively yelling at me for everything - and nothing - I do. Again, that's common enough, it was just the delayed reaction to the event itself that struck me peculiar.
Also, MW had a rare moment of self-reflection when, while railing against pharmaceuticals, she ran that topic around to the point where she admitted she would have to take drugs if it turned out she had Huntington's Disease. But, she added the caveat that this probably wouldn't happen until she's in her 70s.
Good and bad to this: good - for the first time ever she opened herself up to the possibility of taking drugs. Bad - ho shit, 70s? She really things she's got 20+ years left? A lot of agony there. For a brief moment, I actually considered interjecting with an "it's later than you think" comment, but held my tongue. Monster wills out.
Finally, as Sunday comes to a close, and I'm busy cooking and cleaning well into the night, MW gets annoyed because I'm not sitting with her in front of the television. She demands to know why we didn't accomplish anything over the weekend.
So I gave her an account of all the time we'd spent spinning our wheels due to her indecisiveness (of course, I phrase it much more politely). She looked confused, and I had to go over it all a few times before she could place the events.
She lost the weekend. It simply slipped away from her. And, though I know better than to read too much into these things, she really did look like it bothered her. Like she knew it wasn't right; the way she'd behaved.
The weekends, then, are a time for me to get things sorted for the next five days. Except this is becoming more and more difficult as the disease progresses. Groceries, for example. First thing Saturday morning, I suggest we go and get that shopping done. MW agrees. Unfortunately, by the time she's eaten breakfast and gotten herself put together, it's already noon. Now we have to do the shopping she wants to do. When that's finished, I nudge her on the groceries again. She agrees and we drive to the store. Uh oh, it looks too crowded. Plus it's kind of warm. Nope. No shopping now. We'll come back later. After dark. When it's cool.
Understandable. She never actually comes into the store with me; only waits in the car. So, okay, we'll come back later.
Doesn't happen.
Doesn't happen Sunday morning either. Or Sunday afternoon. By Sunday evening, I kinda have to put my foot down and tell her that if we don't go, she don't eat.
And so forth and so on.
***
Three noteworthy behavioral event's happened over the weekend. The least pleasant of which was a particularly nasty bout of anger from MW. These fits aren't new, but this was oddly timed. The dog doesn't like to eat out of his bowl; he prefers it scattered on the tray. No big deal. Both MW and I sometimes give him food and treats on his tray; not in his bowl. As I did Saturday morning.
No problem
Until, about an hour after the dog had eaten, MW blows up; yelling at me, absolutely enraged. And, initially, I have no idea why. Finally, between all the cussing, I figure it out: she's angry that I put the dog's food on his tray.
The abuse is plenty bad and it continues throughout the weekend - with MW suddenly and aggressively yelling at me for everything - and nothing - I do. Again, that's common enough, it was just the delayed reaction to the event itself that struck me peculiar.
Also, MW had a rare moment of self-reflection when, while railing against pharmaceuticals, she ran that topic around to the point where she admitted she would have to take drugs if it turned out she had Huntington's Disease. But, she added the caveat that this probably wouldn't happen until she's in her 70s.
Good and bad to this: good - for the first time ever she opened herself up to the possibility of taking drugs. Bad - ho shit, 70s? She really things she's got 20+ years left? A lot of agony there. For a brief moment, I actually considered interjecting with an "it's later than you think" comment, but held my tongue. Monster wills out.
Finally, as Sunday comes to a close, and I'm busy cooking and cleaning well into the night, MW gets annoyed because I'm not sitting with her in front of the television. She demands to know why we didn't accomplish anything over the weekend.
So I gave her an account of all the time we'd spent spinning our wheels due to her indecisiveness (of course, I phrase it much more politely). She looked confused, and I had to go over it all a few times before she could place the events.
She lost the weekend. It simply slipped away from her. And, though I know better than to read too much into these things, she really did look like it bothered her. Like she knew it wasn't right; the way she'd behaved.
Thursday, January 18, 2018
2018.01.18
Seems like I'm only able to write these entries when drunk at work. Appropriate, I suppose. The elucidation of the inebriated coupled with the paranoia of the drunk. Rather fine definition of Huntington's Disease, no?
Whatever I write now is going to be riddled with errors and in-coherency - because of the booze - also, at any moment someone could stop by my office and call me out for drinking on the job. Not a safe place. I loathe the though of revisiting this post, yet I'm compelled to write it because the disease is progressing sharply now. The lead domino is quivering and one ragged breathe can send it a tumble. My lips are sealed against this inevitability, but my fingers can still type....
Oh Jesus. Raymond Chandler, Dashiell Hammett, Stephen King all wrote their best while in the bag. Me, I'm just going to fuck this up again. Shamefully. MW deserves better. Better all around.
***
Circumstances have been remarkably shitty these past few weeks. Holidays, winter storms, cooped up at home - it has been a slice of hell. First NYD and the subsequent Casa Muncie Flood. The following week I had to take more time off to help clean the house - a futile effort. Which brings us to MLK day - more time off and away from work; the only place I have left to recoup and relax away from the constant dementia. And I'm no racist, but on that loathsome Monday, while I was stuck at home, being subjected to the inexorable hatred and punishment coming from MW's tongue, I silently cursed the man. Fuck you, MLK! Why why why? Isn't my life hard enough - now I gotta put up with another 24 hours of bullshit just because you're some kind of great man. I've got your great man hanging low, Bitch.
Then check this out: right on the heels of that wretched "holiday" comes Winter Storm Irma. Oh my fucking God. Two more days trapped in the house with cold madness seeping in every crack. Note that I'd only squirrelled away enough secret booze to last through the originally planned long weekend. Tuesday and Wednesday were dry as the desert. Painful. Sober. Tired and depressed.
Finally, back at work today. Drunk - as I should be. But also able to breath. And relax. Find a little bit of peace for a moment. Yes, the weekend is coming too soon. I feel ill thinking on it. At least I'll be able to replenish my vodka stash. That'll help.
***
Enough pissing and moaning - here's the real story:
I'm a miserable bastard, a worthless husband, I mock those who depend on me and hate myself with one pitiable qualifier: Maybe MAYBE I'm doing the right thing. But if I am, it still feels so fucking wrong. I rather suspect I'm just not man enough to actually do what needs to be done.
Most of the time I've had off during these past few weeks has been spent "helping" MW look for a job. What this means is that she'll scour the internet for leads, then make me apply for her because she has a hard time filling out forms. So okay. I apply. The she'll get phone or internet - or rarely in person - interviews which never go well. And she'll get rejection notices which I down-play. "It's not you - it's them."
Absolutely ridiculous and really, really cruel. I allow MW to go out and humiliate herself - Oh, I know the people who interview her think she's drunk or drugged out or something. When I hear her on the phone with potential employers, she's all over the map; mispronouncing or misusing words and not making a lick of sense. Then, after they pass her over, she'll ask me what she'd done wrong and I'll say "Nothing. They probably already had someone in mind for the job - they just have to interview other people for legality"
Pathetic. Heartless. What am I doing? How can I condone this behavior? I feel sick and evil; enabling MW to continue on this way. She's always been prideful - she would hate me if she knew I was lying.
Well. She hates me anyway. What's the difference?
I guess it's a question of how much I hate myself. Sure, she's said she "never wants to know" if she has the disease; so that's why I don't fuss about spending every waking hour serving the disease at home. It owns us; so what? Around the house, that's fine - but now I'm sending her out into the world, giving her hope that she can regain employment. Right. On the off chance she could make it through an interview, there is no way she could be trained for the actual work. They would let her go within the week. Probably not even that long.
Look, she can't even fill out a simple form on the internet. How could she possibly handle taking instructions from an employer?
***
As if that wasn't bad enough; MW is also taking two more classes from our local community college. Last semester I did all of the work in her on-line class - I got an A! but she did have to go to a typing class. Again, I did all of the take home homework, but, credit where due, she went to class. And got an A.
That was just a typing class, however, and this semester she's enrolled in a computer basics class. I don't see that going well.
She's also taking an on-line business math class. I'm sure I'll get an A in that, but how does this help?
It doesn't.
Whatever I write now is going to be riddled with errors and in-coherency - because of the booze - also, at any moment someone could stop by my office and call me out for drinking on the job. Not a safe place. I loathe the though of revisiting this post, yet I'm compelled to write it because the disease is progressing sharply now. The lead domino is quivering and one ragged breathe can send it a tumble. My lips are sealed against this inevitability, but my fingers can still type....
Oh Jesus. Raymond Chandler, Dashiell Hammett, Stephen King all wrote their best while in the bag. Me, I'm just going to fuck this up again. Shamefully. MW deserves better. Better all around.
***
Circumstances have been remarkably shitty these past few weeks. Holidays, winter storms, cooped up at home - it has been a slice of hell. First NYD and the subsequent Casa Muncie Flood. The following week I had to take more time off to help clean the house - a futile effort. Which brings us to MLK day - more time off and away from work; the only place I have left to recoup and relax away from the constant dementia. And I'm no racist, but on that loathsome Monday, while I was stuck at home, being subjected to the inexorable hatred and punishment coming from MW's tongue, I silently cursed the man. Fuck you, MLK! Why why why? Isn't my life hard enough - now I gotta put up with another 24 hours of bullshit just because you're some kind of great man. I've got your great man hanging low, Bitch.
Then check this out: right on the heels of that wretched "holiday" comes Winter Storm Irma. Oh my fucking God. Two more days trapped in the house with cold madness seeping in every crack. Note that I'd only squirrelled away enough secret booze to last through the originally planned long weekend. Tuesday and Wednesday were dry as the desert. Painful. Sober. Tired and depressed.
Finally, back at work today. Drunk - as I should be. But also able to breath. And relax. Find a little bit of peace for a moment. Yes, the weekend is coming too soon. I feel ill thinking on it. At least I'll be able to replenish my vodka stash. That'll help.
***
Enough pissing and moaning - here's the real story:
I'm a miserable bastard, a worthless husband, I mock those who depend on me and hate myself with one pitiable qualifier: Maybe MAYBE I'm doing the right thing. But if I am, it still feels so fucking wrong. I rather suspect I'm just not man enough to actually do what needs to be done.
Most of the time I've had off during these past few weeks has been spent "helping" MW look for a job. What this means is that she'll scour the internet for leads, then make me apply for her because she has a hard time filling out forms. So okay. I apply. The she'll get phone or internet - or rarely in person - interviews which never go well. And she'll get rejection notices which I down-play. "It's not you - it's them."
Absolutely ridiculous and really, really cruel. I allow MW to go out and humiliate herself - Oh, I know the people who interview her think she's drunk or drugged out or something. When I hear her on the phone with potential employers, she's all over the map; mispronouncing or misusing words and not making a lick of sense. Then, after they pass her over, she'll ask me what she'd done wrong and I'll say "Nothing. They probably already had someone in mind for the job - they just have to interview other people for legality"
Pathetic. Heartless. What am I doing? How can I condone this behavior? I feel sick and evil; enabling MW to continue on this way. She's always been prideful - she would hate me if she knew I was lying.
Well. She hates me anyway. What's the difference?
I guess it's a question of how much I hate myself. Sure, she's said she "never wants to know" if she has the disease; so that's why I don't fuss about spending every waking hour serving the disease at home. It owns us; so what? Around the house, that's fine - but now I'm sending her out into the world, giving her hope that she can regain employment. Right. On the off chance she could make it through an interview, there is no way she could be trained for the actual work. They would let her go within the week. Probably not even that long.
Look, she can't even fill out a simple form on the internet. How could she possibly handle taking instructions from an employer?
***
As if that wasn't bad enough; MW is also taking two more classes from our local community college. Last semester I did all of the work in her on-line class - I got an A! but she did have to go to a typing class. Again, I did all of the take home homework, but, credit where due, she went to class. And got an A.
That was just a typing class, however, and this semester she's enrolled in a computer basics class. I don't see that going well.
She's also taking an on-line business math class. I'm sure I'll get an A in that, but how does this help?
It doesn't.
Thursday, January 4, 2018
2018.01.04
Happy New Year!!!
Raise your glass to end of a year that, by all rights, should have been worse; and your middle finger to the coming year that most definitely WILL be worse. Probably tragic.
Because Huntington's Disease is relentless in its ravaging, and the calendar is its weapon of choice. In an HD house, nothing gets better - only worse. Everywhere I look I see decay. The thrum of a heavy-footed death march is constant in my head. Sleep is rare, but so what? The waking hours are nightmare enough.
Four days in and here's what 2018 has given us so far:
December 30th: some of MW's friends who were visiting from out-of-town changed their plans to meet up with her - pushing the event back and hour.
This egregious inconsideration sent MW into a cycle of anger/depression; alternately cussing everybody out, then weeping inconsolably. She refused to meet with them and spent the next two days - New Year's Eve and Day - sad, alone and miserable. We both did.
January 2nd: MW calls me around 11:00 at the office. She is confused because she just took a shower in the upstairs bathroom but still hears the water running. Is that normal? I take a guess and say it's the heater refilling itself.
Two hours later she calls again, this time upset to the point where I can't understand a word. I calm her down enough to get the story: she'd left the water running in the tub and it leaked into the kitchen's box light, causing a panel to collapse. The entire kitchen was flooded!
She needed me to leave work. She'd come pick me up. And I'd have to take tomorrow off as well.
And now I'm depressed. Work is my escape from the madness. And just like that, the pain of these brutal holidays is being extended indefinitely.
MW picks me up, but she has to get food first, so we don't get home for another two hours. Upon entering the kitchen, I see one of the box-light's panels has indeed fallen, but it didn't break and there is no standing water on the floor. Just some damp spots.
It must have all evaporated, MW explains.
Also, the tub itself didn't overflow. It must have been something with the pipes. Two hours of water flowing through them caused or exacerbated a crack or leak. Good news/bad. Good is the damage really isn't too bad - some water stains on the ceiling is all; bad, a plumber needs to be called.
The immediate mess, however, is something I could clean up in thirty minutes. Ha! Right. It took two days and over $1,000 to recover. See, the water must have been toxic so anything that it might have touched needed to be thrown away. Basically every dish, pan and utensil exposed in the kitchen - even if they were nowhere near the box-light and showed no sign of being wet. Then the floor needed to be mopped with bleach to kill the poison. Then again with laundry detergent to wipe away the bleach. One last time - scrubbed down with baby wipes because if baby wipes can clean poop....
Anyway. After all the shopping and cleaning, we were $1000+ poorer and well past midnight. The next day was more cleaning and moving things around for the plumber - who, of course, can't be trusted. Everything must be hidden and locked away. MW even wanted to hide the TV; but I was able to convince her that TVs are so cheap these days - nobody is going to kill us both just to rob a 55 inch.
Alas, when the plumbers did show up, we couldn't use them because they were black foreigners. MW doesn't trust black foreigners.
That's it for me. I'm out. I explain firmly but gently that I can't quit my job to stay at home and wait for a white (or Hispanic - because they work hard. But definitely no Asian!) plumber to show up. She want's the upstairs show fixed, she's going to have to handle it herself.
Done.
Bring it, 2018. Let's see just how low we can go!
Raise your glass to end of a year that, by all rights, should have been worse; and your middle finger to the coming year that most definitely WILL be worse. Probably tragic.
Because Huntington's Disease is relentless in its ravaging, and the calendar is its weapon of choice. In an HD house, nothing gets better - only worse. Everywhere I look I see decay. The thrum of a heavy-footed death march is constant in my head. Sleep is rare, but so what? The waking hours are nightmare enough.
Four days in and here's what 2018 has given us so far:
December 30th: some of MW's friends who were visiting from out-of-town changed their plans to meet up with her - pushing the event back and hour.
This egregious inconsideration sent MW into a cycle of anger/depression; alternately cussing everybody out, then weeping inconsolably. She refused to meet with them and spent the next two days - New Year's Eve and Day - sad, alone and miserable. We both did.
January 2nd: MW calls me around 11:00 at the office. She is confused because she just took a shower in the upstairs bathroom but still hears the water running. Is that normal? I take a guess and say it's the heater refilling itself.
Two hours later she calls again, this time upset to the point where I can't understand a word. I calm her down enough to get the story: she'd left the water running in the tub and it leaked into the kitchen's box light, causing a panel to collapse. The entire kitchen was flooded!
She needed me to leave work. She'd come pick me up. And I'd have to take tomorrow off as well.
And now I'm depressed. Work is my escape from the madness. And just like that, the pain of these brutal holidays is being extended indefinitely.
MW picks me up, but she has to get food first, so we don't get home for another two hours. Upon entering the kitchen, I see one of the box-light's panels has indeed fallen, but it didn't break and there is no standing water on the floor. Just some damp spots.
It must have all evaporated, MW explains.
Also, the tub itself didn't overflow. It must have been something with the pipes. Two hours of water flowing through them caused or exacerbated a crack or leak. Good news/bad. Good is the damage really isn't too bad - some water stains on the ceiling is all; bad, a plumber needs to be called.
The immediate mess, however, is something I could clean up in thirty minutes. Ha! Right. It took two days and over $1,000 to recover. See, the water must have been toxic so anything that it might have touched needed to be thrown away. Basically every dish, pan and utensil exposed in the kitchen - even if they were nowhere near the box-light and showed no sign of being wet. Then the floor needed to be mopped with bleach to kill the poison. Then again with laundry detergent to wipe away the bleach. One last time - scrubbed down with baby wipes because if baby wipes can clean poop....
Anyway. After all the shopping and cleaning, we were $1000+ poorer and well past midnight. The next day was more cleaning and moving things around for the plumber - who, of course, can't be trusted. Everything must be hidden and locked away. MW even wanted to hide the TV; but I was able to convince her that TVs are so cheap these days - nobody is going to kill us both just to rob a 55 inch.
Alas, when the plumbers did show up, we couldn't use them because they were black foreigners. MW doesn't trust black foreigners.
That's it for me. I'm out. I explain firmly but gently that I can't quit my job to stay at home and wait for a white (or Hispanic - because they work hard. But definitely no Asian!) plumber to show up. She want's the upstairs show fixed, she's going to have to handle it herself.
Done.
Bring it, 2018. Let's see just how low we can go!
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