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.

2017.05.18

Social media buzz today is all about the Pope meeting with HD families. He told us that we are “not alone”.

Wrong. But thanks for trying, buddy.

***

The problem with social media is watching the videos. Seeing how everybody with the disease starts to act, sound, even look, the same. The same gait; the same arm movements. The same slurred, drunken speech. And worse, their faces. They all get that lopsided, twitching appearance. Wait for it and you’ll see the Sardonicus grin. Rictus, really. After that comes the deep frown: the furrowed brow over sunken eyes; revealing a terrible mixture of confusion and fear.

One roll; 30,000 actors. Each slightly different, but all of them commanded to act out the same characterizations. The part they’re playing? Slow death.

***

But I admit, watching the Pope interact with HD victims had an effect. It made me sad, but in a good way. No, trust me; I’m an expert on sadness and it is possible to be good-sad.

I was raised Catholic. He is the Pope. How can I not react to him acknowledging our struggle? Oh, I know it is meaningless and won’t change a thing. My options are still intolerable. Nevertheless… he is the Pope. And he went out and hugged people like MW.

Thanks, buddy.

***

Today, for the first time, I got proof that my sympathetic HD actions are working. MW called me at work to worry over a possible symptom she’d experienced last night. She explained it as having “heard a noise” while on the computer.

At first I didn’t understand; but that’s not uncommon. So I asked if the computer’s speakers were turned on?

She went on to explain that the noise came from her arm twitching uncontrollably.

Ah.

But then, as I was running through all the reasons why sudden, unexplained movements are definitely not symptoms of Huntington’s disease, she preempted me by stating; “I’ve seen your arms like that sometimes.”

Indeed she has. And not by accident. I will make random, twitching motions when I’m around her just to plant those seeds. Lo and behold – fruit!

So that strategy paid off. Good. Any little victory…. The downside, however (everything comes with a downside these days) is the anxiety and roiling guts I experience when I call the house and she doesn’t answer (accident? fire?) or if I hear sirens when she’s out alone (crash?)

2017.05.08

The conversation about "why does my arm/leg/head move like that?" has progressed from a once-in-a-while occurrence to a daily event.

I still answer it is normal behavior, everybody experiences it, happens to me all the time. We're growing older. And so far that's worked.

So far.

I'm going on my fourth year of this... madness. Four years of lying to MW while taking ridiculous, almost comical steps to ensure she doesn't discover the truth of her condition.

Four years ago I was certain the end was in sight. I knew it couldn't last. 1,400+ days later and here we are: Still dancing on the edge of the cliff.

But now....

MW can't sleep for the twitching. She wakes up every morning asking me why her body moves like that. I lie.

She spills food and drops things so frequently these days; it isn't even remarked upon anymore. I hear the crash and shout out "Got it!" before she calls for help. I've done a remarkable job keeping her away from family and friends, but the few she does speak to, I know, are confused by her behavior. I feel physically ill when I hear the phone ring because I'm worried about what will be said.

And she's maybe a week away from losing her job. They say it is a schedule change, but there is no way she can work full time and I think they know that. They're trying to get rid of MW without actually firing her. I can't blame them; but not having a place to go, even for just a few hours, will be very difficult for MW.

More time to sit around and feel her body twitch.

***

The warrior heart that beats for the struggle; lives for the fight. Will never surrender or submit. Finds strength in adversity; comfort in God.

That's not MW. She would rather die than even admit she has a problem.

Which leads to the question: where does this end? What will I be asked to do; what am I prepared to do?

***

Hopelessness. I've a newfound appreciation for the word and I think it may be overused. "This is hopeless", usually means the outcome will be less than ideal.

And that is not hopelessness.

I read the HD social media posts. Misery; company, etc. Recently someone posted an angry rant about the disease, one of the lines read "only God has the cure!" Naturally the comments were voluminous and almost uniformly offered "prayers".

Nope. Maybe, but nope. "Only God has the cure!" means the only cure is God taking you away. Translation: death. There's your cure. The only cure.

Now we're edging closer to the true meaning of hopelessness. Not that the outcome will be less than ideal, but there is no outcome at all. Just an end. The ultimate end. That's where this is going. And the journey towards that end is long and painful and intractable.

I spend every waking hour of every day feeding and cleaning up after MW, listening to her irrational and often hateful speech, and, most important, lying to her face; her once stunningly beautiful face that has started to contort and reform into the HD rictus. My reward for this will be to do the same tomorrow, but a little worse. Then a little worse the next day. Again and again.

Until one of us dies.

Hopelessness.