2014.04.17

The grenade is still there, ticking, but I’ve re-learned to ignore the goddamned thing. MW is, for all intents and purposed, functioning well. She’s back at work; socializing, living…. Sure, there’s still more than enough batshit – but that’s mostly confined to the casa. Me? I’m drinking again so it’s all good. Drunk right now, thanks for asking. Oh, yes. I’ll be good and ripe when that pineapple finally blows.

I don’t want to embarrass myself, but I feel a compulsion to make an entry in this journal. Forgive the flaws; but here’s a brief rundown of recent (possible) HD behavior:

MW still won’t go see her father – still makes me go in her stead. Used to be she’d let me go alone; now, however, she wants to come with and sit in the car in the driveway. This, she said, makes her feel closer. Anyway, last weekend her father walked me out of the house. MW had to duck down under the dashboard to hide. I was reminded of the award-winning flash fiction story about the young girl hiding from her lover’s wife. Then I felt like crying.

MW still has problems sleeping – talking all night about imagined illnesses, but last night she fell stone-asleep by, like, 9:30 at night. I’m not sure what’s up with that? Was she just so exhausted or is it something else? Something HD related? Seriously, it doesn’t happen often, but occasionally these sleeping fits come upon her and it’s like a switch gets flipped off. Her Aunt used to display the same symptom (and is now HD+). This may require research.

2014.05.06

Twice within the last two weeks I’ve found myself hugging the toilette bowl, cramming a toothbrush down my throat, trying to induce vomiting. Bulimia? No, nothing quite so glam. Rather, I’d realized I’d imbibed too much booze and was attempting to preemptively strike the resulting sickness through injudicious purging.

It didn’t work. Either time.

Yesterday, while taking a walk, I was staggered by a powerful recollection of a place I’d never been; an event that never happened. Hard to describe, but I stumbled over my own feet as I saw in my mind’s eye a familiar hiking trail – complete with trees, gently running creek, dappled sunlight – but knew that the trail did not exist. It was a figment of my imagination. There was a break in the path – I remembered – where you either had to use rock-climbing skills to traverse a steep bluff, or cross the water to the other side where there was no trail, only thick underbrush and weeds.

Also, there was a girl somewhere on the trial. I couldn’t recall if she was ahead of me and I had to catch her, or if she was behind me and I had to wait, but I knew she was there.

I could smell the wild scallops and feel the dirt under my hands from traversing the bluff.

Only this never happened. This place doesn’t exist. It was like a decades old dream suddenly exploded into my consciousness. I’ve always discounted claims of déjà vu and the like, but this was such an overwhelming feeling of place and time, I got rattled and had to sit on a park bench for a while.

And finally last night I experienced such a perfect “Lost Weekend” moment, I had to laugh. See, I totally forgot where I’d hidden a bottle of Canadian Mist whiskey. It wasn’t in any of the usual spots, so I frantically started tearing up my room. Wait. Pause. Take a breath. The guest room closet, yes, because nobody ever goes in there.

Crises averted.

Still, all these events combined make me think my brain is breaking, if not broken already. And it isn’t the alcohol. Well, maybe say it isn’t JUST the alcohol. Maintaining status quo with MW as she continues to descend into Huntington’s disease is like a constant mental hammer. The booze keeps this throb from becoming a full-on Ginger Baker drum solo.

Problem is: with both our brains breaking, what’s going to happen to us?

2014.03.27

Nights are becoming extremely difficult. A pattern has emerged: at least every third night, MW will not sleep due to some anxiety. Naturally, when MW is not sleeping; I’m not sleeping.

And right now I am so goddamned exhausted.

Work is still very busy, and then I’m cooking/cleaning for MW every night until 8 or 9, then she demands I sit with her while she watches TV for a couple of hours. This is our “together” time. And then if it is one of her bad nights, I’m constantly on the move fetching things or wide awake listening to her cry. So come Thursday, I’m pretty much walking dead.

How long can this go on?

Juxtaposed against my fatigue, MW has done well with the temporary full time hours at her new job. She likes being around people, and she loves the fact that she’s working again. I truly thought she’d have found a reason to quit by now, but she’s still going. Tomorrow will mark two full weeks.

Good for her.

And, if she can maintain, good for me too. I desperately need some time alone, if for no other reason than just to sleep. My luck: she’ll make it through the training but when it comes time to start working weekends; MW will quit.

2014.03.28

MW asks me to hold her hand at night as she falls asleep. Last night the twitching, spasms and clutching became so pronounced, I almost asked if she was doing it on purpose.

That would have initiated a grand conversation.

Still, for all my worry and concern, MW is basically functioning at the same level she was when I started this journal. In some ways, even better, in that she’s kept a job for two weeks – two whole weeks! – now. But it is these little terrors – the twitching, the slurred speech, the carelessness and strange conversations – which makes every single one of my days a suspenseful nightmare. What is going to happen today? Will it be too big to ignore or equivocate (“Of course you’re not sick. Everybody occasionally misses their mouth with the spoon.”)?

Last night also saw a return of the obsessive paranoia over health. She has a chipped tooth and is certain that the remainder of said tooth will break off while she sleeps and choke her to death. So she kept asking me over and over again if that will happen. How many times can you say “No, dear. You can’t choke to death on a chipped tooth” before you start going a little crazy yourself? I do my best, but I need a crutch. 

Oh, and also, today my brother sent me an email with a link to an article about a possible cure for HD. Odd in that this was the first time he’d brought the issue up, even though I had expressed my concern over the matter with him a very long time ago. Perhaps he has noticed a change in MW? I would be interested to know why he sent it, but instead I made a joke of my reply. I appreciate my brother and know he means well, but all he can offer is sympathy. That’s all anyone can offer.

I don’t need sympathy. I need a solution to a problem that has none.

2014.03.20

You look for one day – just one – where no symptoms of the disease are manifest. Of course you can’t help but notice the speech, the spastic movements, and the bizarre conversations, but you look for that one day where the disease doesn’t make things “bad”.

Yesterday was close. The only “bad” thing that happened was MW got a speeding ticket coming home from work (day three and counting!). You certainly can’t blame a speeding ticket on HD, so I was willing to call the day a success, but the fallout from the ticket – the confusion and paranoia expressed by MW – dulled the shine.

Plus, it raises the issue of how much longer will it be safe for MW to drive?

On a related topic, my foot – the one I fucked up when I got drunk and fell down? – it still aches pretty bad. The swelling and discoloration have gone, but it gets stiff as a brick when I sit for a while. Perhaps I did break a bone in there somewhere. Oh well. The bottle givith, the bottle taketh away.

2014.03.21

Another sleepless night. This time it was acne, of all things. MW started obsessing about a pimple on her forehead. Two in the morning, waking me up, asking me how she can fall asleep when all she can think about is the pimple?

Shit, I don’t know. Pop the fucker?

Funny now, not so much when it is happening. It isn’t like a gentle whisper wake-up from MW, rather she cries loudly and then wants to change the sleeping arrangements. Last night I was able to talk her out of sleeping in the closet, but it wasn’t easy. She compromised by moving bedzilla around so our heads were where our feet used to be and vice versa. I’m not sure why, but this seemed to work and MW eventually did doze off – that would have been around 4 in the morning. She slept; I stayed awake waiting for 6 a.m. so I can go to work and get some peace.

Speaking of work, if MW makes it through today, it will mark one week of full time employment for her. If she makes it through two more full time weeks of training, then she can start her part-time hours. And I’ll have my weekends back. I shouldn’t hold out hope but… I have so little left to look forward too.

2014.03.24

It was a weekend of mostly little terrors. When we got home Friday night, the dog had taken a shit in its kennel and that soaked up most of MW’s dementia – everything within a five mile radius of the shit had to be thrown away as ‘unclean’ and what couldn’t be thrown away had to be disinfected with extreme prejudice. This took all night, but wasn’t too bad.

Saturday I had to work (thank God!) so was able to get away for about five or six hours in the morning. Afterwards, came home; cooked, cleaned, ran some errands, and that was the day. A little terror happened in the afternoon when MW went to take her vitamins. One of the pills got away from her, as they often will, and she commented, “I sure do drop a lot of vitamins, don’t I?”

…

I waited for this to spark some sort of realization in MW, but, no, nothing. Crises averted.

That night, however, MW couldn’t sleep so I was in and out of bedzilla all night; fetching water, fixing blankets, moving this, getting that…. Another notch in the ‘sleepless’ column, but since it was the weekend, manageable.

And Sunday was uneventful.

Today starts week two of the three week full time training. So far so good.   

2014.02.14

A lot has happened since last I wrote. MW got her old job back and I think I broke a bone in my foot. Here’s how it all went down:

MW’s ex-boss called and told her there were some openings available were she still interested. Remember, when MW left work last September, it was because…. Well, I’m not exactly sure. Her head just wasn’t right. So the parting was amicable on both sides; they were sorry to see her go, and she wasn’t all “take this job and shove it”. So they agreed to keep in touch and, surprisingly, they did. Anyway, staying at home hasn’t put MW’s head “right” so she thinks going back to work may help get her mind off all the negative thoughts and worries. Who knows? She may be right. It seemed to work briefly when she started taking classes again. Of course it didn’t last long, nor do I expect it to last long if she does go back to work. Degenerative disease, yo.

I am of two minds about this situation: 1) MW working means I get my weekends back. This would be exceptional. 2) MW’s condition has, to my perception, deteriorated to the point where people could/might notice. So how long will she be able to function in a work environment before being confronted by someone who doesn’t have my flair for lying and equivocating?

Not that I have much choice. I tried in my oh-so-subtle way to suggest she might not want to go back to work, but was rebuked in that I wasn’t being supportive. Now I’m supportive. There’s a good chance it’ll mean MW is going to find out she has HD sooner, but I’m supportive.

And here’s what happened with my foot: I got drunk Saturday night and fell off bed-zilla. Recall that bed-zilla is two queen mattresses shoved together in our sitting room where we sleep to ensure MW doesn’t bonk her head against the wall. Plenty of room on bed-zilla to avoid most perils, except when trying to transverse her on foot. And, as I said, I was well in my cups at the time. I know I’m supposed to be off the booze, but the plan was to start on Monday, and I had one bottle of wine left, so I decided to empty that cupboard. Turns out the wine was absolutely awful, almost undrinkable, one of those $3 Merlots they sell at Whole Foods, so to make it palatable, I mixed it with a bottle of seltzer water and ice. Viola! Wine spritzer. Also awful, but easier to drink.

And drink I did. Then I tried to walk across bed-zilla. I wound up writhing in agony on the floor, my ankle swollen twice its size.

But I’m a caregiver. I can’t go down. I walked on the goddamned thing all day Sunday, all day Monday, came home, took my sock off and not only was it swollen, it had a streak of purple-black that runs from one side of my heel to the other. What could cause that? I’m thinking a broken bone somewhere in there. Oh well. I can hobble on it good enough. And there’s no way I’m going to a doctor, so hopefully it’ll just set itself.

And now another fun filled weekend looms. Worse still – on Sunday I have to tell MW about the trial in Austin and how I’ll be away a couple of nights. All in all, not going to be a good Valentine’s weekend..

2014.02.06

Quite a few self-indulgent, pitiable posts recently. This plateau we’ve descended to isn’t working out very well – between MW’s incessant complaints and indecisions, I’m averaging maybe four hours sleep a night. And I haven’t implemented my mental escape plan yet – I’m waiting for warmer weather which is not cooperating, so I’m feeling more frayed around the edges than usual.

Still, looking at it objectively with no exaggeration of scale, I can honestly say that I have cause to complain because my situation is far worse than anything else anybody has ever gone through in the history of the world. Ever.

Maybe not, but in terms of shear shittyness, my situation has to be in the top 5%. First of all, HD is an exotic disease. From a 2005 study: only 30,000 people nationwide have it; 200,000 are at risk. That’s fucking rare. Then come at me with cancer, Parkinson’s, Alzheimer’s, or any other prosaic ailment and I’ll slap you right down with how much worse HD is. There is no cure, not even any hope for a cure, and its symptoms are absolutely execrable in comparison with the duration and infirmity of those diseases. I suppose one could make the argument that the individual suffering from HD doesn’t necessarily feel pain, like cancer; however, their goddamn brain is literally rusting away over many years, even decades. It is possible to survive cancer, but if you don’t, well, at least it runs its course pretty quick. I call trump.

So I’m in rare company by rights, couple that with my forced isolation and I’m basically a Man Apart. All of the pieces I’ve read concerning HD victims or their caretakers have a common thread: companionship. Mostly family, sometimes friends, all their stories center on the importance of having the support of knowing, helpful companions.

We have a sick old dog. And that’s it.

As I’ve mentioned, MW’s family is useless. Shockingly so. They have no patience or tolerance and cannot be trusted to handle this situation with anything close to compassion. True story: early on when it became apparent MW and I weren’t planning on having children, my father-in-law took me aside and told me that if the reason we weren’t reproducing was because the fear of HD (it was), we had nothing to worry about. See, he’d read somewhere that you could test the fetus for the disease. If the test came back positive, just abort. Well now. What can you say about a motherfucker like that?

What about my family? I suppose I could confide in them, but this isn’t their burden. And to be perfectly honest they wouldn’t be much help anyway. Except my brother. I could confide in my brother and he – and his family – would be compassionate and caring. I know this. But as I said, I don’t want to weigh him down with my problems. He’s already done enough – too much – for me anyway. Then there’s my sister. She’s been alienated by MW’s behavior, righteously so, but I’m sure if I called her up and explained things she’d come around. However, there wouldn’t be much point to it. She lives far away and is super busy with her own life. Plus she recently became involved in some charismatic church so I’m sure I’d get a lot of “we’ll pray for you”s out of the deal. Yeah. You do that.

I can’t trust my mother. She’d confront MW about getting treatment. Probably start arguing with her again. Do not need that. Finally my dad would be like my sister to the n^th power. He lives far away with his own busy life.

Family is out, then, which leaves friends. Alas, the nature of the beast is irrational, indecisive behavior so the only friends we have left are the most casual of casual. How would they react to the following: “MW has HD so could you call her up to hang out sometime; you know, just to sit and be with her for a while because she really likes talking to people? Be aware that she’ll probably cancel the event because she has a hard time leaving the house, but just making the offer would mean a lot. And if she does show up, please don’t talk about anything significant. Keep the conversation casual because she gets anxious when people discuss problems and stuff.” Who knows? Maybe some would, most would not, however, and those that did certainly wouldn’t do it more than a few times.

At the end of the day it is just me. And the dog. And neither of us are doing all that great right now.

2014.02.05

Yesterday there was a hostage situation in my neighborhood. Armed SWAT cops swarming our streets, hiding in our backyard. Even a tank cruising around.

MW was in heaven! She ran to all the neighbors, sat and talked with everyone, got out of the house to gossip and chit chat with strangers. She really loves and lives for that sort of thing. In the end, it was nothing. Some teenager hoax. But the activity must have been good for MW because she slept well last night. We should have these hostage hoaxes more often.

Reviewing yesterday’s blog entry, however, and I feel stupid. Ashamed, really. Railing against God is so demeaning. Makes one seem childish and naïve. It just goes to show how abysmal my situation is and how desperately I need help. 

Well. There is none coming. So I had better start getting my head right (wrong) so I can deal with this reality through avoidance. Liquor, yes. Soon. It's just that I’m still unnerved by the functional oblivion I experienced last time I drank.

I’m grinding my teeth as I write. For fuck’s sake I never wanted this! I had dreams, plans, maybe even talent. Now the most likely outcome for my life is alcoholism coupled with health problems. How often have I judged alcoholics as pathetic? You drink because you don’t like your job? Fucking quit, you sod! You’re soused because of relationship problems? Well there’s plenty more fish in the sea, babe. Maybe you just booze because you’ve had a rough childhood and can’t handle life. Oh, grow the fuck up.

Your wife’s brain is slowing killing her in the most insidious and grotesque way conceivable and the process will likely take decades but you can’t do anything about it because that would force your wife to accept the fact that her life is basically over and, statistically speaking, many in her situation just off themselves? Yup. Next round’s on me.

2014.02.04

I’m a problem solver. That’s my job. I’m the one they call upon at the office when things need to get done quickly and correctly. I take pride in the fact that I can find, effect, or fake a solution to just about any problem thrown my way.

Which is why this situation with MW and HD is so goddamned agonizing. I’ve done the research, I’ve approached it from every angle, I’ve gone over all possible outcomes in my mind, and I keep coming up fucked. It’s pretty bad when “murder/suicide” finds a place on the short list of feasible solutions.

I’ve been reading blogs by and about other people suffering from HD. Pathetic, I know. Misery loves company and all that. I blanch at the ones where thy fall back on religion as both an explanation and a comfort.

How do they do that?

I would like to know because the specter of alcoholism looms in my immediate future and if there was a way to subvert it I would. With God?

One of MW’s cousins – one whose own mother is now showing signs of the disease – grew up in a fabulously religious house. Church, praise-and-worship, the whole shebang. You know the type; always praying those bullshit logorrhea prayers where every other word is “father”.

E.G.: “Thank you our father for all you’ve given us father and bless everybody father all our family father and friends and even our pets father whom you’ve given us as comfort father in our lives father and our family overseas lord bless them father even though they aren’t in our zip code father and for those who couldn’t be here father because they have the flu father….”

Okay, I was raised Catholic: “Bless us Lord” and get on with business.

Anyway, this cousin has fallen from the church. A big surprise given how important the church was throughout his childhood. When asked why, he replied that he couldn’t believe in a God that would allow for something like HD.

Right. Except as a Catholic, I can believe in such a God. A fucking cunt God who judges and condemns. Baptists with their “but he gave his only son for us” jive. Yeah, okay. But don’t you think it pisses him off he had to in the first place?

Hey, there you go. At least I’m not an atheist.