2017.09.14

As we travel deeper into the dark depths of the HD swamp, I'm frequently pulled towards the pointless and ultimately crippling practice of nostalgic thinking. Fall, Halloween in particular, has a way of casting me back to a time when I could enjoy and participate in life. Crisp air; blue skies. Colorful landscapes and festivals with costumes and laughter. Cider and candy. Tricks and treats.

Unbearable to remember now, knowing what's to come.

However, there has been a sequence of odd experiences I've had with MW during this journey which Autumn thoughts have stirred up and brought to the forefront.

The impetus is a seasonal book called Halloween Dreams wherein a handful of horror writers relate their favorite holiday memory - usually some scary or unexplained childhood event which forever twisted their minds towards the macabre.

And I, sadly, realize that I've never been touched by the supernatural. Or have I?

So much for the preamble. Here's the point:

Since MW started showing symptoms of HD, going on four years now, there have been a handful of occurrences where she's exhibited uncanny awareness.

The first time was actually quite terrifying. It happened back when I was drinking a lot of vodka, which I had to hide from MW because she doesn't allow alcohol in the house. Again, this is something that anybody who doesn't live in an HD house would understand or believe, but it wasn't really difficult to be a full-on alcoholic without the person living under the same roof even knowing.

I would pour vodka in empty seltzer bottles and store them in the freezer. When it came time to drink, I'd mix the frozen vodka with regular seltzer in another empty bottle and bobs-yer-uncle. MW sees me drinking seltzer with no idea that I'm floating down river V.

Then, once when she was complaining about me being alive, she made the comment; "and why do you have all these stupid empty water bottles all over the place? Are you pouring booze in them?"

I froze like a deer in the headlights. Where the hell did that come from?

Anyway, she immediately moved on to other complaints and nothing came of it but still.... Such an odd thing to say.

Again, anybody who doesn't live in an HD house would dismiss this out-of-hand because they would assume she really knew and was playing games or something; but no. MW had no idea I was drinking. She believes I agree with her low opinion of drinkers. Also, she is incapable of deceit. There would be no reason for her to suspect I was drinking; and if she did, she wouldn't bandy about. She would attack full force.

Yet, somehow, she had the thought that I was sneaking booze in empty seltzer bottles. It didn't stick and she immediately moved on - but where did that unlikely - impossible, really - idea come from? Spooky.

That would have been about two years ago. The other times were less significant in that they were purely "mind-reading" events which didn't have a physical (water bottle) component.

Next example: My grandfather committed suicide and, no surprise, there are times when I dwell upon it - was he a coward or a hero? Once, while pondering this question, for no reason MW started talking about him; asking questions. Seeking details. Note that he died when I was quit young and MW never met the man. Also, as a family, we don't talk about him much. Not many good memories there.

So why would MW start talking about him then? When he was on my mind?

Anyway, as per our usual course of conversation, I feigned no knowledge, made vague comments, and hemmed and hawed a lot. And, as usual, MW plowed ahead anyway - her point was that she respected people who only killed themselves but didn't commit murder; not like all those who take psychiatric drugs and go on shooting rampages (the point, of course, is that psychiatric drugs inevitably cause shooting rampages. Which is why she'll never take them. Yay.). Then, unbidden and for no reason, she made the comment; "if you ever want to kill yourself, you can leave."

Wha...? Where the fuck did that come from? How could she possibly... make that connection?

The other two examples happened fairly recently. A month or so ago, in one of these journal entries, I made the observation that, if there were suddenly a miracle cure for Huntington's, it would be too late for us anyway because MW wouldn't like the person I've become. Shortly after writing that down, my wife actually told me, "....I don't think I'd fall in love with you if we met today. You've become a bitter old man."

Weird for her to say. Not because of its hurtful and insulting nature - compared to other things she calls me, it's practically a valentine - but why then? When that's exactly what I'd been thinking?

And, finally, just yesterday, MW started talking about how her mother, after having been diagnosed with Huntington's, succumbed very fast to the ravages of the disease. This is relevant because lately I've been seeking information about how long "1st stage" lasts - we can't continue like this and I'm worried about leaving MW home alone when I go to work.

But these are my thoughts. MW had never talked about how fast the disease overtook her mother before. Why bring it up now, when I'm considering the exact same thing?

Okay, not exactly Stephen King territory, but still....

2017.09.11

I started drinking again. Last night I polished off a four pack of that faux-Champagne shit. To borrow from Was Not Was "she made Champagne out of Sprite and cheap wine, like a chemist". Two sips in and I already felt the headache building behind my eyes. No worries. Pop some Advil, chase it down with the fizzy, and keep going.

Four cans of gutter wine and six tabs of ibuprofen later and here I am - not feeling too bad either in body or spirit. My liver might be whining, but fuck 'im. The brain, man. The brain is more important. And my poor brain needed a break.

What brought this on, after a full year of sobriety? Well, first, check the facts: to be clear, I did not get drunk. Not off those glorified wine-coolers. That's why I bought them - I wanted to ease back into it. Yes, I have a bottle of V hidden behind my desk - it's been there since last year - but I'm saving that until I prove to myself I can handle it. The next thing to try is some real, honest to God wine. Only then will I crack the paper on the hard stuff.

Anyway, what brought this on?

Blame Hurricane Harvey, that bastard. Blew me right off the wagon.

MW quit her job on the Friday Harvey came knocking. My office then closed for an entire week during the floods. For ten days we were basically housebound together.

Ten days; nowhere to go, nothing to do but allow MW's HD dementia to fill the house like flood water.

Since this is for the record, I don't want to overstate things. MW did spend a lot of that time glued to the TV watching the drama. She became obsessed with the story of a lady who died in the elevator of a hotel. Anyway, that focused much of her energy. Also, on the third day, we were able to get out and drive around some and go walking. So it wasn't like we were snowbound 24/7 without comfort. Nevertheless, after the news coverage died down and things returned to normal and I was able to return to work; without a job, MW had nothing to do but stay home and go mad.

The primary target of MWs anger was the ex-supervisor who had taken away her part-time hours. He is just as bad Hitler. And, because he also happens to be gay, she no longer likes homosexuals - even refusing to do business at a store where the proprietor was obviously homosexual. "I don't like gays right now," she explained to me later as we were driving away.

It was - and continues to be - a relentless and classic persecution complex. Everybody there yelled at her all the time, they hated her and wanted her gone. They are all evil. Evil as Hitler.

And as irrational and unpleasant as these tirades are, I encourage them because the alternative is usually white-hot rage directed towards me. Terrifying, bare-toothed fury followed by an insistence that we sit together because she's lonely.

This behavior builds and builds and then two nights ago MW storms into the front room where I sleep on a mattress on the floor at one in the morning and yells at me because the nightlight in the hallway isn't lit.

And that's when I knew I had to start drinking again.

Oh sure, I've been scolded worse for less, but by then I'd reached my saturation point. Indeed, the nightlight hadn't been turned on, but the other nightlight in the bathroom was. As was the one in the living room, etc.. So, as MW is accusing me of trying to harm her by making her walk around in the dark (even though, as she's standing in the hall to make her point, there is abundant light coming from the bathroom/living room/entryway/etc.), I nod my head, apologize profusely over and over again, and resign myself to drink.

I have to. I can't do it anymore; at least, not sober.

2017.08.21

MW fell twice over the weekend: once when going down the stairs; then again when putting on underwear. And that adds up to a shit load of cowardly lying on my part. Fortunately the ol' "your mom never fell" riff still has legs. If falling were a symptom of HD, her mom would have fallen all the time. Since her mom never did fall, it can't be a symptom, right?

Abso-fucking-lutely correct.

Even better, it dawned on MW that her mother always sat down to put on pants. Perfect! Don't step into them; slide them on, and you'll never fall again.

Solid.

Also, she didn't hurt herself any. The falls weren't drastic; more like controlled tumbles, so that's good.

Nevertheless, these two events caused us to rearrange the entire house again. No more going upstairs, beds and televisions moved accordingly, and chairs and sofas are now strategically places wherever she may need to put on pants. 

Exhausting work with very little sleep all on top of an aching hernia.

Eh. Could be worse.

***

Like when MW will be forced to quit. Her full time hours start this week but she's using PTO to effect part time employment. Once that's played out, she's housebound. Without a job, she'll have no purpose. Nothing to do, nowhere to go. She will, I'm sure, be overwhelmed by depression. And that will go hand and hand with anger and sleeplessness. 

Bad days coming. I wish I was better equipped to deal.  

***

My margin of error has dipped below zero. I'm in the negative zone. Even if I do everything right, on time, and with a smile, I'm still going to get cussed out. Stand and take it, of course, but lately that seems to make things worse. And MW's growing favorite response is to command, "just divorce me!" 

I gently push back; calming explaining that I'm not upset, I haven't been upset, I'm very sorry for whatever it is I did (or didn't do), but if she wants the divorce...?

Usually it ends there and we'll move on to other ways I've failed or reasons why I'm a total dumb-ass, but it makes me wonder; how much sense of self-preservation does MW still have? At some level, she must know she needs me; yet everything I do infuriates her and she never lets the words "I hate you!" go unsaid.

The concern is, would she/could she really divorce me? It raises many complicated issues. She hasn't been tested so nobody knows for sure she has HD. There is no paper saying she is not "of sound mind". If she wanted to, she absolutely could....

And I'd be a free man. How about that?

But talk about complicated! She's my wife and I'm honor-bound to take care of her "in sickness", but the only way to fight a divorce would be to proclaim her condition. I've spent the last four years of my goddamned life avoiding just that. I've isolated us from everybody - missing seeing my father on his deathbed; missed his funeral - did all this to keep her from that reality.

So. Would I fight the divorce if it meant exposing MW to the truth?

2017.07.25

I'd been floating along in a tolerably smooth slipstream for so long, this recent patch of turbulence has me unsettled and sour. We're back to the terrible sleeping issues. MW cannot stay in rooms where she's seen a tree roach; nor can she sleep on beds that are too high (risk of falling off). However, if the bed isn't high enough off the ground, well, the tree roaches can get at her.

So there isn't a bed in the house upon which she's comfortable. And for the past few nights, in vain efforts to accommodate her dementia, we've spent hours hauling blankets, pillow, cushions, setting lights; removing lights, hanging shades; removing shades.... It doesn't end.

MW is also a few weeks away from losing her job when they force her to go full time. She's been trying to find another part-time job but, surprise, she hasn't been able to get past the interview process.

And she fell again the other night; hurt her back. Her foot still aches. She also has a mysterious pain behind one ear she's sure is cancer.

MW is tired, worried, and angry. I'm exhausted.

And I have a project at work that demands a lot of time these next few weeks. It never ends.

Four years. I've been holding onto this secret for four years.

I cannot see the end. That terrifies me because I can't continue like this.

It has to end.

***

I come home to a disaster and clean and clean and clean some more; all while attending to MW who inevitably needs  help with the computer or television, whatever. Eventually, things settle and I'm able to prepare food for myself.

And while I'm spooning sauce on a tortilla, the salsa accidentally plops on the counter.

Another mess; made by my own hand this time.

Such a small thing. Only one swipe of the sponge....

But it turns me inside out. My eyes catch fire, threaten to spill over. It is the last, the very last, straw. I see myself ending this; I can picture my limbs moving; legs taking me to the bathroom, hands turning on the water. I see myself in the mirror. What have I become?

I could end it there and then. I want to end it.

But I turn and get the sponge.

Maybe tomorrow.

***

Here's something from a Huntington's website:

Access to care early on is critical to managing Huntington’s disease

Yeah, okay. What about it?

As patients with HD become symptomatic, it is key that those individuals have access to comprehensive care with doctors who are knowledgeable in HD. 

Uh huh.

HD patients in early to middle stages of the disease need coordinated multidisciplinary healthcare services, including assessment of cognitive function and counselling by (neuro) psychologists, rehabilitation programmes, active physiotherapeutic interventions, speech therapist training and occupational therapy. 

Jesus, look at that list!

Lack of access to care for families with HD means unmanaged or poorly managed symptoms, higher rates of caregiver burnout, potential unnecessary hospitalisations and early entry into long-term care facilities.

Caregiver burnout. Too fooking right! And all the rest.

So, monster then. I'm back to being a monster.

2017.07.13

But it isn't always intolerable cruelty. In fairness, MW's flurries of rage only take up around 15-20% of our time together. Understand, however, that would be significantly more if I wasn't completely servile and voiceless. It is a tenuous balance. Many times MW's anger will be sparked by my silence being perceived as neglect, whereas I'm actually holding my tongue out of fear. I've learned that any fire started by recalcitrance burns shorter and cooler than the furnace-blast generated by misspoken or misunderstood words. To that end, I communicate mostly through grunts and non-committal stammering. It works most of the time; MW just keeps on talking.

I credit this for keeping the peace. Mostly keeping the peace.

What about the other 80%?

Half and half: 40% complaining about things; 40% worrying about cancer.

So, really, the bulk of my time isn't cowering in fear, but nodding along with whatever perceived injustice MW is suffering or repeating the mantra - "I'm sure it's not... I'm sure it's not... I'm sure it's not cancer."

Tolerable, I suppose. Sad, but manageable.

However, every so often there's a small moment of grief that is almost impossible to overcome. Not like the ear-drum piercing shouts or narrowly avoided acts of violence; but something so subtle, it quietly breaks you.

The other day, MW was rambling on - I can't remember about what - but she was talking, talking, talking. In the middle of it, she realizes she has to go take a shower, so, still talking, goes to the bathroom, undresses, and turns on the water. Then immediately comes back out to continue the "conversation" - nude, with the water running.

She talks and talks and talks. Minutes pass. Ten, fifteen....

For me, this is one of those hard-learned judgement calls. I could politely interrupt and tell her to go turn off the water, or I could rise out of the chair and turn it off myself. Either of these two actions, however, could start a tirade. I might be accused of not paying attention to her and get screamed at. So I do nothing but sit and nod and mutter "uh huh".

Fifteen, twenty...

Eventually MW stops, looks around confused, and says "What am I doing? Why am I standing here naked?" And shuffles off to the shower which by now, I'm sure, is cold.

Just that expression....

Confusion. It's worse than when the hideous contortions of rage twist her pretty face.

***

From the misery/company corner: a FB post about how HD is like a body snatcher. It takes a person away and leaves behind something else.

Yeah. That's pretty good. Expand it to the caregivers, too. HD has stripped me to nothing and tacked up a thin, paper mask as a replacement.

Indeed, many people are changed through hardships - some forged into stronger mettle; other's collapsed into waste. But my experience with HD is different. Hardship, sure; but so relentlessly hopeless and isolated.... Take the social media postings: I check them to connect, but I can never post anything. Inside my house, I canonize myself a saint, but I'm not so far gone to realize that I would be seen as a monster to anyone else. Especially in the HD community. They would recognize my behavior as negligent, dangerous, maybe even mocking.

I'm alone here. No family; no friends; just a bogus account on social media platforms crammed with suffering. Not stronger; no weaker. Just gone.

There's nothing left of who I used to be. My job is mostly done on computers - very little human interaction. I don't talk at home. Sometimes, when I do open my mouth to speak, what comes out is raspy and broken. A stranger's voice. I have to clear my throat multiple times just to form words.

The "person" I talk to most is my dog. He's cool, but....

I've been removed from family; society.... humanity. I've been removed from myself.

Goddamn this disease.

***

Which brings up another, interesting thought.

A cure. What if they did find a cure?

Well, it depends, doesn't it? Could the cure reverse the damage done? Not only halt the onset, but restore the brain to healthy?

If not; if the cure only prevented further degeneration; it would leave us stuck in this... living hell where MW can't really function without help and is prone to anger, depression and confusion.

But if a cure could restore the victim?

I wonder if MW, once cured, would even recognize me anymore. I can't image her caring for the person I've become. I certainly don't like him much.

So if MW were to become healthy again, could I recover too? Or would is it just too late for us anyway?

2017.07.07

I joined a support group today. Yup, I've become one of those people. Enfeebled.

To be fair, it isn't a real group - "HDSA Caregiver Support Group". Just an on-line thing. And, oddly, they only allow so many accounts to sign into their sessions and all the spots are currently full, so I won't be able to attend any meetings. 

Still. I have a support group. 

What a joke.

***

Recently, MW has suffixed her bouts of enraged aggression with timid niceties. She'll attack me with all the fervor of a Templar, turn around, and then start some banal chit-chat without even acknowledging that'd she'd just called for my head on a pike. 

I wonder how much of this is early on-set and how much is self-preservation. I've timed it: if MW is not otherwise occupied with something like a TV show or a phone call; two minutes will not pass without her calling upon me for some service or with a question - usually about her health ("Cancer? Is this cancer?"). 

If I'm in the house, she is incapable of being by herself. She needs me around her constantly.

And yet, everything I do infuriates her beyond reason. Or everything I don't do. It doesn't really matter. In the past week she's reamed me for stopping at yellow stoplights; driving too fast to make it through a yellow light: putting too much water in her bottle; not putting enough water in her bottle: waking her up when she'd asked to be woken up; not waking her... You get it. Oh, and the things I have no control over; like when the computer doesn't work or the TV goes out - that's my ass right there. 

I take it - I have to - but these recent turnarounds rile me. Is this next level shit? Is she sliding into the next phase of dementia where she can no longer conceptualize her own behavior? I'm used to her getting and keeping a mad on for hours if not days - that, at lease, seems natural once you get past the point that it isn't justified - but these sudden reversals are confusing.

Unless it is self-preservation; where she realizes she can't both destroy and use me at the same time.

Well, this is something I can ask my support group about.

***

Saint or Monster?

Based on MW's comments last month - when she said she never wanted to know - I have been strutting around the place with my halo cocked at a jaunty angle. Only room upon this cross for the chosen, you know. A few days ago, however, something happened that gave me pause.

A small thing.

After MW had finished writing down her daily reminder notes, sticking them all over the walls with masking tape, she spent a few awkward moments trying to fit the cap back on the Sharpie - getting her thumb good and inked in the process.

I went to take the pen and cap from her, but then stopped and thought; "No, let her do this herself."

Followed immediately by another thought; "Why? Degenerative means this won't get better. So what if MW gets the cap on today? What about tomorrow? Next week? Next month? Holy shit, next year? What difference will it make if I take it away from her now?"

By then it was moot - she'd managed the cap.

And just like that, I'm back to being a monster.

2017.06.16

Temporary though it may be, I've been walking on air these past few days. It started when MW, during one of her protracted, rambling ruminations on life, expressed the desire to "never know" that she has HD. "I would be really depressed.... if I knew I had a terminal disease," she said; then, "All I hope is, if I do have it, God makes it so I never know."

There you go. I'm not a monster after all. In fact, I'm doing God's work.

And that motherfucker owes me big time for this.

***

Anyway, for now, I'm Saint Wayne - snugly tucked in my hair-shirt, lying to and deceiving MW for His great glory. Hallelujah! 

It can't last, of course, but then I've been saying that for years. But if it is going to end soon, one of these will likely be the reason:

1. Unemployment
2. Insomnia
3. Foot pain caused by walking "wrong"
4. Diet
5. Cockroaches

Not necessarily in that order. In terms of actual severity; cockroaches would probably be #1. 

MW absolutely looses her shit when she sees a tree roach. Even a dead one; if it's in the house, she's terrified. She won't enter the room until I've gone ahead to make sure it's clear. She can't sleep worried they'll come for her in the night. She had me go around and duct-tape every seal around the light fixtures and doors we don't use. She'll talk for hours, recalling every roach she'd ever seen it the house; where it was, what it was doing.... 

She's one tree-roach away from institutionalization.

***

Foot pain. MW likes to run around the house, chasing after the little dog. Whenever I hear them playing, it sounds like our floor is being stampede by a football team. It's just a matter of time before she falls or knocks into something with disastrous results. 

***

Unemployment, diet and insomnia are on-going concerns. Any of them could put her over. She's also been getting these pimples on her face - she blames them on her diet - and they upset her beyond reason.

***

Let's not forget erratic movements, in-coordination, and carelessness. She'll leave the stove top on more often than she turns it off these days and I cannot just hand her anything anymore. I have to grab her hand, place the item there, and make sure her fingers have closed around it before I let go. Oddly, she doesn't recognize these behaviors as "wrong". When I remind her that she left the stove on, or when she drops things, she just laughs it off. 

Everything else causes extreme anxiety, but the actual, undeniable symptoms don't even register.

Mysterious ways, I guess. Now that I'm a saint, I'd better get used to them.