2016.09.22

A milestone: this marks the hundredth entry, encapsulating just about three years of our Huntington's Disease journey. Surprisingly, some things have improved since I started this journal. MW manages to sleep most nights now and has kept a part-time job for two years. She started socializing again and last week she ate out at a restaurant for the first time since I don't know when - close to five years at least.

On the other hand, the chorea and speech issues have become more noticeable. Volume control, in particular. I'm still getting used to the way MW will start shouting for no apparent reason. And the house.... It has become like a bad situation comedy. When I get home from work I ask myself how much worse today's mess will be from yesterday's mess; and I'm always surprised by the level of chaos and disorder.

Last week, after the visit from her ghoulish relatives, MW confessed that she still thinks she might have the disease, but quickly countered by saying she won't actually get it for another twenty years because her mother was in her 60s when she got it. That's not so bad - twenty more years of health and productivity. She can live with that.

Boy, I could too. Twenty years? Hell, she might outlive me at that.

When I take a step back to assess my own physical and emotional pain, I grant myself a certain amount of indulgence. I'm old. Things are falling apart. I haven't had a drink in three weeks and my chest hurts at times. I have a hernia which causes near constant discomfort and, occasionally, even immobility. I'm frequently short-of-breath and a few days ago I felt as if I might pass-out at my desk. I have an odd, quarter-sized scabrous growth under the hair just above my ear and another raised, discolored patch of skin at my temple. When my brother asked about it, I lied and told him my doctor said it was nothing - just a mole.

I haven't seen a doctor in fifteen years.

Now for the emotional pains: my life has become a ceaseless lie. I spend every second of every day either at work or taking care of MW while assuring her she doesn't need to be taken care of. Keeping it going is hard and constant work. Aside from lunches at the office, I haven't sat down to eat a meal in years. Around the house I'm always on my feet cleaning or providing. I get four hours on a Saturday while MW is at her part time job to do those chores she won't let me do when she's at home; such as laundry, ironing, and scrubbing the bathrooms, etc..

To my credit, I have been and am strong enough to push through the hardships. My rule around the house is: whatever MW wants; MW gets. Whatever. All she needs to do is tell me and I'll make it happen; no matter how irrational or burdensome the task. Midnight and we have to move the mattresses again because it's too dark in this room? Not a problem. I'll do whatever she asks, whenever she wants.

Because I'm not dying of Huntington's Disease. It truly is the least I can do.

But how do I reconcile this philosophy with my own failing health? Shouldn't I take care of myself so I can continue to take care of MW?

And there's the disconnect. See, I have no idea if I'm doing the right thing for MW. I know for a fact that if I were not alive, she would have to seek professional help. She cannot function on her own

Professional help. Not just me, running around on aching legs, waiting for things to get worse.

Every day I exhaust myself for the sole pleasure of watching MW succumb, little by agonizing little, to a fatal disease. Granted, there is no cure, but there are treatments. Support. By protecting her from herself, I'm keeping her from those treatments. From that support.

I don't know if what I'm doing is right; but I know I can keep doing it until I collapse. I've proven my resiliency. Still, whenever I catch a calm moment, an unbidden phrase enters my head. It speaks to the end of this toil. I hear it at least once a day. Yes, I immediately push it aside and carry on, but the words are such a part of me now, it has become like Salinger's famous Ohm prayer. Whenever there is nothing else, there is always that wish.

And so when I wake up feeling as if a metal band is being tied around my chest, I do nothing but lay and wait. If it passes, it passes. If it doesn't. It doesn't.

2016.09.07

I look back on this long Labor Day weekend and shake my head in amazement. 

We made it. For the first time in over three years, MW had family at our house and somehow we made it through. We're still going - still living the lie with no outside interference. 

Incredible.

But then, maybe not so much. Her family are terrible; just awful people. I truly believe they get a charge out of knowing she is sick. A real perverse Schadenfreude is going on with those slags.

Here's why I think so:

There were two sets of cousins in town this weekend: one from her mother's side (they are also at risk); one from her father's. For the most part, MW gets along with her maternal side relatives. Don't misunderstand that to mean they keep in touch or offer support or help of any kind, but she can talk to them without getting yelled at. Her paternal side is a different story. Three years ago when MW expressed concern that she might have HD, her father's sister called MW up and yelled at her about it. She said it wasn't an excuse for disobeying her dad.

True. 

Anyway, the maternal cousins were staying at our house; but when the paternal ones tried to contact us for a visit, I didn't respond to nor did I tell MW they were in town. I'd hoped they would just go away.

Of course, they didn't. They came over unannounced and with no invitation.

This is Texas. If I owned a gun.... Sadly, I wasn't even in the house when they rang the bell. I was out back with the dog. When I came in, MW had already opened the front door.

You can imagine the shock, fear and rage I felt when I found them standing in my living room. Maybe they saw it on my face, or maybe not; but for some reason they were unexpectedly polite and civil. The situation made MW nervous - I could tell by the hyper way she spoke and her exaggerated movements - but she did not get upset. She just went on one of her protracted rants about the evils of pharmaceutical drugs which ate up an hour of conversation. By the end of that, they'd had enough and left peaceably.

After they'd gone, MW summed it up perfectly: "They came by to see if I have Huntington's," she said.

And she was right, I'm sure. To MW's mind, however, she believes they were either still uncertain or convinced otherwise. 

But I'm pretty sure MW's conversation was odd enough; her movements disjointed enough, that they left knowing she was sick.

And God help me (and them. More them.) I honestly believe they left happy.

What can you do about people like that? I've long since given up any hope for help or even sympathy from that side of MW's family, but at least they could be decent enough to leave us alone to die in peace. It's like they can't wait to dance on our graves so they come by to wiggle their hips just to give us an early taste. I don't have the time or energy to expend much emotion on hate these days, but whatever I have goes to those fucking assholes.

The maternal cousins were much better. They were just using our casa as a landing place while they attended a wedding, so they weren't around very often. That made it easy. Also, the boy's mother is currently in the final stages of HD, so he himself is waiting for the "No Country For Old Men" coin to drop. Therefor, he is more empathetic and patient with MW. Him and his wife were good company. MW enjoyed herself around them and so the weekend was a success despite the ghouls showing up.

My gripe with the maternal side of MW's family is how they, too, try to run and hide from the disease even though it's already latched to their backs, screaming in their ears. Not that I blame them - I'm doing the same thing in extreme - but I imagine how much better things could be if everybody was open and honest; proactive and supportive instead of hushed and furtive. Maybe then MW wouldn't be so intractable against seeking medical help.

Maybe, but probably not. Nice to think about anyway.

2016.08.26

We're back to taping notes on the wall. Alexa, you bitch, you've failed me!

A forgotten candle caused this regression. MW left it burning all day then spent the night fretting about safety. Getting me out of bed at midnight to check and make sure every candle in the house was "out". Fingers to wick; "Yup, this one's safe...." Now the HD wallpaper is back with instructions to always check the candles, never sleep during the day, don't walk up the stairs wearing a skirt, always hold the handrails, etc. etc.

And once again the promise of a better life through technology has fallen short in its delivery. Oh well, I can still say "Alexa, play Cheap Trick" and get some use from the slag.

The cousins will be here in a week. I've had to take three days off from work so far just to prepare; with more to come, I'm sure. Moving, cleaning... getting the house in order. This summer has been difficult enough with the changes in MW's job and diet - I really don't need to be dealing with this shit too. I wish there was a way to talk with these people, clue them in on the situation, ask them to run all communication with MW through me first so I can plan and manage, but I know that would just make everything worse. They can't be trusted.

The grenades keep getting lobbed in our direction and I'm trying to bat them all away, but I've been whiffing too many these days. I'm exhausted.

I'm also in pain. I haven't had a drink since Sunday night. I suppose it's withdrawal symptoms, but Goddamn. Still? It's been four days. Should I still be waking up at 4 in the morning with the sweats and shakes? How much longer will my hands continue to tremble? I feel my resolve failing. I'm pretty sure I'll be crawling back into the bottle, but hopefully I can get through the family visit first. I'll need a clear head for that.

The basis for this attempt at sobriety was an especially troublesome dream. Not a nightmare, it was actually fairly prosaic - I was in a house that was being renovated so there were lots of workers around, and it was messy, and people were annoyed and busy, but the trouble was I had a hard time snapping out of it. I couldn't distinguish the dream from reality. It was a struggle to come awake. And even after waking up, it took time to sort everything out. Had I been there? Had I done those things? No, impossible. But it unnerved me to the point where I decided to try the cure again.

I went as far as checking Alcoholics Anonymous' website for meetings. Alas, my only availability to attend would be a brief lunch hour and it would have to be within walking distance of the office. No such time/place. Also, the site specified that most alcoholics need the support of their family when going through the cure. Welp. That lets me out.  

2016.08.19

Everybody at the office where MW works is crazy. They're all mentally unstable and don't know how to act around people. MW relates stories to me on a daily basis about how they talk and behave themselves - they're all on drugs! she's sure.

Tweak the following quote:

"If you run into an asshole in the morning, you ran into an asshole. If you run into assholes all day, you're the asshole."

Substitute out "asshole"; replace with....

Yesterday MW had an especially troublesome encounter. By her own admission, she was engaged in a "passionate" conversation with her boss about getting some training. And as we all know, MW talks with her hands. Anyway, during this impassioned discourse, the trainer snapped at MW: "Don't you point your finger at me!"

MW was stunned and saddened. She apologized then went off to cry.

In my mind's eye, I can see the situation very clearly. It is the chorea coming out, as it will, during moments of high emotion.

What I told MW, however, was that the trainer must have some personal problems. Probably is on drugs - most everybody is these days. She shouldn't worry about it. Still, no point working at a place like that. They sound like very unprofessional people. MW should turn in her resignation and take some time off. Maybe go back to school; or just relax. Life has been stressful lately. Time to take a break.

Yes, I want MW to quit her job. I lose control when she goes off to work - even if it is only part time hours doing fairly simple and repetitive tasks. I've long feared someone would say something to MW that would push her over - this is why I encourage her to stay away from her family - and "Don't point your finger at me!" when MW is only exhibiting typical HD behavior is too goddamned close for comfort.

But, of course, I understand that without a job, MW would have more time to sit around and think. This could also lead to trouble.

Yet another in the endless parade of lose/lose situations.

Yesterday, when MW hung up the phone, she said she was going to resign. Yay! When I got home, however, she said she couldn't do it. She doesn't want to feel like a failure.

Okay then. Moving on....

2016.08.09

MW's cousin and his wife are coming into town for a wedding. During the past three years, whenever a friend or relative has contacted MW about visiting, she's always made some excuse not to see them - we'd be out-of-town or we have the flu or somesuch.

This time, however, she asked them to stay at our house for the weekend. And they said yes.

Great. So now what the fuck do I do?

My first thought was to contact them behind MW's back and ask them, please, don't come; but I couldn't trust them not to turn around and call MW back to bitch at her about it. 

Also, MW seems excited about seeing these family members as they aren't part of the branch that she's totally cut off. So it would be pretty awful of me to keep them apart.

Still. What the fuck am I going to do? Already MW is worried about how she's going to sleep and eat when they're here. Right now she's sleeping on a mattress on the floor of the sitting room surrounded by sofas so she can't bump her head, but she can't let them see that. It will all have to be moved. But she can't take it upstairs because she might trip going up and down; plus it's too dark in those closed off rooms. Currently the thought is we just won't sleep the two days they're here. I guess that might work. 

And then there's the food situation to consider. This summer has been terrible for MW's diet. Already two of her staples - a frozen meal and a particular type of fish - have been discontinued from the grocery store. Finding replacements has not been easy. It is a lot of trial and error and, literally, visiting every grocery store in our area looking for that one, specific meal. Yeah, I did go on-line to check, but MW doesn't always trust the internet, so.... What if, when her cousins are here, she can't find the food she needs? They can't know that her diet is so rigid, so how will she eat? We won't be able to spend the entire day driving from one store to the next searching for food if they're with us.

Also, let's not forget the messy house. MW can't let them see how we live, and that's going to be extremely difficult to deal with. She did call a plumber to replace the dirty toilette, so that'll be okay; but what about the rest of it? We can't replace the entire house.

But above all this, my biggest fear is that something dangerous will be said during their visit. It might be well-intended - "have you lost weight?" - which, even though said to be kind, would still send MW into a spiral of fear and doubt. Worse, however, would be if they ask MW about her other family relationships; "Why haven't you seen your dad in three years? Why aren't you talking to your brother?"

This could lead to a conversation with disastrous consequences. No overstatement. If I'm not around or unable to redirect these types of inquiry, it could end.... everything.

I do not trust any of MW's family members. They are willfully and cruelly ignorant of the symptoms of Huntington's Disease. In the past, when MW first expressed her concerns to them, they responded flippantly, then turned to belligerence when she wasn't placated by their platitudes. 

Fuck 'em.

Now the cousin coming to our house is younger and, I hope, more tactful. Indeed, he is the child of MW's aunt who also has the disease. He, apparently, made some waves when he married outside his religion (a Hindu girl!) and rumor has it he's given up faith in God. Something about what kind of God would allow this! I've got an answer for him, but he probably wouldn't like it.

Anyway, he's also smart as a whip; an Emergency Room doctor, and, as I said, much younger. So I doubt he would go off on MW about her behavior, at least not deliberately, but the fact that they have a shared family history is causing me great anxiety. And it's not just a one-way street. MW has a tendency to take conversations to strange places. She may push him into a corner where he has no choice but to talk about things best left unsaid. 

I can't control what he'll say. And that scares me to death.

2016.07.29

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

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

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

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

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

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

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

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

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

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

2016.07.08

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

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

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

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

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

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

What a relief!

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

...

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