2014.01.21

Bad stretch of time. MLK day - another long weekend with MW and she was in rare form. Saturday morning was brutal. MW is clearly experiencing the chorea now, early stages, but still unavoidable. Saturday she recognized this and spent the morning grilling me on why she doesn’t have HD. Once again, I explained that none of the symptoms she described are indications of the disease (yeah, right) but this time she wasn’t buying it. She asked - if I did suspect it was HD, surely I would do something? Surely I wouldn’t just lie about it? Well. Fuck. Of course it is HD and what choice do I have but to lie? Once again, as she was going about the business of devastating me, she stated that she would never take medication for the disease. So what can I do? What the fuck can I do?

Turns out I can drink. It is becoming a problem. This past weekend MW made us drive up to Austin for a couple of days. That’s two days I wasn’t able to sneak drinks. I was feeling terrible and, upon reaching home, the first thing I did was drink.

I stay late at work now just to drink. I’ve developed that alcoholic’s savant where I can judge how much booze I’ll need to get me through the day and plan accordingly. I’ve added Altoids to the list of must-haves for my pocket gear.

I’m a little drunk right now.

Jesus. I never wanted to be this.

But the drinking levels the playing field. Sometimes I wonder if HD is really just like feeling drunk all the time. If so, MW is a sad, sad drunk. Could be worse. She could be an angry drunk.

You think I’m a coward for not confronting MW with what I know? Yes, yes, again yes. But I know it will have to happen anyway. So what’s the problem with waiting? Giving her as many days as I can before even she has to face the facts? Look, you ask if the rolls were reverse, if I had the disease, what would I do?

With a snootful, I can say 100% certain positive I would kill myself. Immediately. No question. Come back when I’m sober-ish and I’ll say the same. I’ve seen what this disease does. I would never allow it to happen to me. Or, rather, because I have no idea what it actually feels like (there doesn’t appear to be any pain) I would never ever allow myself to become such a burden on others.

But if MW asked me for help committing suicide? What would I do?

Oh God Jesus. I need another drink.

2014.01.09

Another cancer scare last night. MW said when she squatted down she felt as if she was “bumping into something” so she kept doing deep-knee bends and asking “Huh? huh?”

I didn’t know how to respond. I wasn’t even sure she thought it was cancer until she said, “Do you think it is ‘C’?” Apparently the act of squatting made her feel as if there was a lump somewhere in her stomach.

This kept her awake and worrying until around midnight. She tried to sleep in the closet, but the blankets were in disarray so she returned to Bed-zilla.

Is the gallows humor out of place?

I married at 20, and knew at the time that MW was at risk for HD. Of course being young and in love = fucking stupid and I was confident that 1) she wouldn’t get it and 2) if she did, we could manage. After all, Woody Guthrie could play the guitar.

We weren’t lucky enough to roll a 1, so that leaves 2. But, goddamnit, MW will not do anything to acknowledge the possibility of having, nor managing the recognizable mental and physical symptoms of the disease. So where does that leave me?

In the gallows.

And there is a lot to laugh at around here, if you’re of the right mind. For example, MW is gorgeous. Strikingly attractive. But her irrational concerns over cleanliness and disease have made her untouchable this past decade or so. And even before that, intimacy was a rare occasion - once every couple of years kind of thing. Not that I tried much to persuade her otherwise. Rather disgusting behavior, pressuring an HD victim for sex. So I live with a beautiful woman I cannot touch. And I listen to a lot of surf music.

Funny, no?

2014.01.07

Finishing where I left off: I had offered to buy tickets that would get us to NY just in time - and I mean just - but, again, she wouldn’t make the commitment. So we drove to Dallas instead. This is Friday, the 3rd. We get to Dallas, drop the dog off, and check into a Hotel where MW eats the food she’d prepared in Houston.

MW has created a very strict, very inconvenient diet that she wholeheartedly believes helps her sleep. It is a lot of food and it has to be eaten on schedule every day. She cannot vary these meals. Travel is, therefore, difficult. Nevertheless, we made it to Dallas and ate appropriately.

Surprisingly, she sleeps very well that night. I get very little sleep - hotel noise and lights plus her movement/snoring keep me up.

The next morning she arranged to visit friends. These friends are casual acquaintances, but MW is head-over-heels in love with the husband. Not sexual, but she places the burden of brotherhood on the poor guy and he - being a decent chap - does not refute.

The plan is to have breakfast with them, then drive back to Houston in time so she can eat her lunch. After breakfast, they ask what plans we have - MW lies and says she’s visiting another friend that evening. They invite us to spend the night at their house.

We go to Whole Foods, buy MW’s lunch (Fish, Eggs, Chicken, Spinach plus some frozen meals) and she goes to their house to cook.

They display remarkable patience as she cooks both lunch and dinner at their house. This takes pretty much all day.

I leave with the husband to get our food. When we return, MW has told them that we are going to spend the night with the other friend we are supposed to be visiting. A lie and a confusing one. My suggestion had been to leave for a couple hours, pretend to visit the other friend, then return to spend the night with these lovely people. She changed that plan. Reason? The guest bedroom was at the top of a winding staircase and she was afraid she would become disoriented and tumble down the stairs.

After diner we have to leave. MW hedges and tells them she may want to come back and spend the night at their house.

Back-and-forth.

We spend a few hours debating over the best course of action (no debate, really, just me telling her “whatever you want”)

She cannot decide. Eventually it becomes too late and we check into another hotel for the night.

Note the trend: MW has lost the ability to make decisions. Classic HD behavior and, because of the unfortunate history of our relationship (she has always made all decisions and any of my suggestions are immediately discounted because… well. Because I’m me.) crippling our lives. We can make no plans.

She does sleep well that night (Saturday). We drive home in the morning.

The next night (Sunday) our sleeping arrangement is once again revised. Now both queen sized mattresses have been moved to the sitting room turning the small space into one huge bed. She sleeps fairly well on bed-zilla.

Monday I desperately want to go back to work (I haven’t had a moment to myself in five days!) but she looks like she’ll have a breakdown if I force the issue so I agree to take one more day off.

Driving around in the morning, she notices one of her toenails has turned blue. She panics. I have no idea what she thinks would cause a blue toenail nor, when she forces me to look at it, can I tell it is “blue”. It may be a slightly lighter shade of pink than the other toenails - but it isn’t blue. Of course my reassurances don’t mean anything so we drive to one of her friend’s house for him to look at it. He used to be a nurse. He can’t tell her anything but to go see a doctor.

Shortly after this visit, the toenail returns to a normal shade. Crisis averted. Only now she is wondering if her behavior is indicative of HD.

No, I say.

I’m reminded of a Twilight Zone episode - or maybe it was a comic in an old horror magazine - where a wife is convinced her husband is a vampire because of his odd behavior. As it turns out, she is the vampire and the husband is killing victims to keep her fed while convincing her she is drinking juice, not blood. He loves her so much, you see, he can’t bring himself to let her know she’s the one who is undead.

I feel you, man.

The remainder of the day is uneventful. I’m relieved to find that enrolling her for typing and another BS class at the community college is only $400. Money, now, is not a problem, but she is not working and if she keeps incurring these expenses, it may soon become one.

She sleeps well Monday night too.

Which brings us up to date. I’m at work - finally! - and very happy to be so.

2013.12.30

Another long weekend.

Friday the dog got sick - blood in the urine - so MW couldn’t sleep for worrying about that. Moved from bed to closet back to bed then wound up in the closet for most of the night. All total, maybe three hours sleep.

Saturday morning the vet. saw the dog, figured it was a UTI and gave medicine which calmed things somewhat. Went for lunch with my family, ran some errands. Normal enough day. Slept pretty good that night, too - only woke up once. Call it seven hours of sleep.

Sunday was the winner. Started in the morning worried about a tender spot on her ribs (“It hurts when I press here.” “Then don’t press there.”) That, MW thought, was a sure sign of cancer. The whole day was spent worrying she had cancer. I mean the whole day. She starts by asking me if I think it is cancer. I say no. She then asks why not? Over and over again. All day long. (“Why isn’t it cancer?” “Well, I just read an article about how HD victims have a lower cancer rate than the general population. Does that help?”)

MW doesn’t like sitting around the house when she’s depressed, so we spent the day at the park. This may sound pleasant, but really what it means is she sits in a parked car for hours, worrying about cancer. She lets me walk, however, so I had a grand time. Lovely weather, beautiful park. Must have walked close to three hours. When I would check in to see if she was ready to go, I’d get the question “Is it C?” (she won’t actually use the word “cancer”. She abbreviates it with the letter “C”). “No.” Then she would let me go walk some more.

That evening she did settle into the closet and stayed there all night. Woke up around midnight and then 5 a.m. asking if she’d slept, so not bad. Five or six hours of decent sleep.

NOTES: Last month I grew desperate enough to call an HD helpline. Talked to a nice lady, but, as expected, absolutely no help. The only advice she had was for me to get MW to a doctor. Yeah. Thanks for that.

I hung up the phone feeling pathetic and sick. Pathetic because I knew there was nothing anybody could do to help and the only reason I’d called was to talk to someone. Sick because I came to the realization that the only way out of this situation is, quite literally, death - hers or mine - and I would gladly welcome either one.

Yup, poor pitiful me - but check it: I am certain that I’m doing the wrong thing. The right thing would be to somehow get her to a doctor and get her the care she needs. But I’m just not smart enough, strong enough, or courageous enough to make that happen. I should be able to figure out some approach, or issue some sort of ultimatum to get MW treatment. And I have tried in the past; tried and failed so fucking miserably - full scale atomic meltdowns that last for months type failures - that I’ve given up hope entirely.

The third leading cause of death among HD victims is suicide. As I write this now, I am absolutely certain that MW will not commit suicide. She never brings it up, never talks about it, would not even consider it an option. And, oh trust me, it isn’t as if she could be thinking about it and not telling me. There is nothing she doesn’t tell me. I’m all she has.

That’s good, right?

Indeed. Except everyday I’m made aware by some action or speech that HD is corrupting MW’s brain. So today I’m sure she’s safe. Tomorrow? The next day? When will I know this has changed if it changes?

I am putting her life in danger by not forcing her to get treatment.

Let’s approach it from the other side - say tomorrow I get run over by a train. MW would be forced to go for treatment. She would have no choice - she cannot take care of herself. Right now she is incapable, but in no way suicidal. If I were to be removed, her life could be saved or at least better managed.

It isn’t like I’m being a martyr. I have no life outside of work and being a caregiver at home. Work is just a job - a paycheck - not what you would call fulfilling or satisfying. Then there’s care-giving. Nobel enough, I suppose. The Catholic part of me likes all the self-sacrifice and suffering. But if my care-giving is ultimately doing more harm than good?

What use am I?

All this to say I’ve starting drinking in secret. Hiding bottles around the house. It helps a little - the Catholic part of me giving a big thumbs up - but it can’t last.

***

Here’s an example of the useless tits on MW’s family. My wife has a cousin who is a big-shot doctor. He owns a hospital - owns one! - has a highly successful practice, board-member of the state university, and he is on the matriarch’s side of the family so he know HD is something he himself dodged like the No Country For Old Men coin toss. To his credit, he did try once - a long time ago - to talk with MW and I about the disease. As I expected, she had a breakdown right there in the restaurant - fled crying. Fast forward to the present and, once he’d heard through the grapevine that MW was having problems - he calls me. Okay, he did at least do that, but the call was even less meaningful than my conversation with the HD helpline. “Take her to a doctor,” he says. Fuck you very much, sir. You were there at the restaurant. You know I can’t talk to her about this. What else? What else have you got? You own a hospital - can you send the white-coats over in the paddy wagon? Then shut the fuck up. Useless tit.

Bitter? Yes. Because he did the bare minimum by calling me, fed me tired bullshit, then abdicated from the situation. He must know better. He’s a professional psychiatrist. A doctor. I’m just an asshole who’s read some internet sites and even I know enough that, if I were serious about helping somebody in this situation, I wouldn’t leave it at “see a doctor”.

We need help. Real help. Boot-on-the-ground help.

All I hear is crickets.

***

Earlier this month - around the time I placed the call to the HD helpline - I was this close to talking to one of the lawyers where I work about the situation. My thought was to ask about getting power-of-attorney and using that to force MW into a clinic or assisted living facility. Fortunately I stopped myself in time. First, that’s fantasy. It would never happen. Second - my God what was I thinking!? Tell somebody where I work that my wife has HD? Holy shit. Holy shit. See? This is how desperate I’ve become.

***

Lots of downtime today, obviously, so this entry is extensive. A preview of what’s to come: New Year’s Day. Another day away from work, alone with MW - and then I also have the rest of that week and the next week off as well. I had taken this as vacation time to attend an out-of-state wedding, but now MW doesn’t want to go. The terrible thing, however, is that she won’t let me return to work. She wants me to stay home those days. So we can talk about all the cancer she doesn’t have, I suppose. It makes me physically ill to think about spending this time away from work. My only hope is to convince her that we can’t afford to waste my vacation days. I’ve been successful with this in the past - the argument that if either of us gets sick, I’ll need those days - has a lot of power over someone who is always getting cancer, but if I can’t return to work….

2013.12.26

Christmas eve we went shopping. My wife tried on a lotion at T.J. Maxx and - lo! - her knuckles were all swollen! She ran from the store in a state of near panic. We rushed home and she spent the day looking at her swollen knuckles.

For the record, I couldn’t tell they were swollen. Not at all. Certainly, they weren’t the exact same size - I showed her my hands and explained that we are, none of us, perfectly symmetrical - and that seemed to calm her somewhat, however the majority of the day was spent agonizing over her “swollen” knuckles.

Same drill at night. She stayed up worrying about her knuckles until around midnight then dozed off until around six.

Christmas day, morning, she stood up fast and experienced vertigo. Also note we have both been dealing with head-colds and she had just complained her ears were “closed”. Anyway, Christmas was all about the vertigo. I explained that vertigo is common (I experience it often because I am tall) and having a head-cold would certainly account for it, but she still obsessed over it all day. We did go over to my brother’s for diner, and she did okay there, but she couldn’t sleep until around 1/1:30. Again, crying and wailing in the middle of the night for Jesus to save her from the vertigo. She did eventually sleep, but woke up at around 5/5:30.

NOTES: Holidays are hard. If it weren’t for my brother, they would be impossible. Mostly because we live lies upon lies. MW hasn’t had a full time job in decades. She has worked part time at various call centers from time to time, but she doesn’t have anything you could call a career. The story, however, is that she works full time in Human Resources. The story changes slightly over the years and I have to keep up the lie or else she’ll have a breakdown. This is another one of those areas - like taking medication - that is not open to conversation or debate. She lies about working and I tow that line.

She lies about her family relationships. Her immediate family can’t stand her. They don’t talk. Because of this, her father’s family also hates her. They don’t talk either. Her mother’s family is slightly more accepting - one cousin in particular does try to keep in touch - but on the whole they don’t express much interest. However, MW talks up her family as if they are a big part of her life (they are not). Because of this, my family thinks we spend all our vacation time with her family (we don’t).

The result is that most of our Thanksgivings, Christmases and New Years are spent alone, just the two of us, with me waiting desperately to get back to work so I can leave the house. This Thanksgiving my dinner was cold cereal and milk. Again, fortunately my brother does have us over for Christmas. Thank God for that. At least I have one connection I can rely on outside the office.

Slow days at work, the holidays, so I’m being somewhat indulgent with background information. I realize much of it sounds bitter and pathetic. And, well, yeah…. I am forty one years old and I am the sole caregiver of someone with Huntington’s disease. We haven’t been husband and wife for years now - it has been over a decade since we’ve had marital relations. We don’t even have conversations - I just react (hopefully positively) to her myriad complaints. Try to steer her away from “crazy” as best I can. The relationship between us is platonic and barren. She is not a wife, she is a responsibility. Were I to leave, she would not be able to survive on her own and she has no other family to help.

There is no cure for this. There is only management. And I’m all alone with that burden.

I’ve been through this before - with my mother-in-law - so I know how it goes. Ten or fifteen (maybe even twenty) years of isolation and sadness. In fact, we are worse off than my mother-in-law because she had children. Certainly they weren’t very useful, but they could at least be there. We have no-one. No one will visit MW once she becomes house-bound. I will be all she has. And I’ll have to keep a job as we don’t have enough money to support a house without my paycheck. So it’ll be down to either putting her in an assisted living facility or hiring in-home help. Either way it’s going to be a long road with my life compressed to work and hospice and nothing else. Indeed, I’m already there, except we can’t call it hospice yet. Right now it is all just work and the lies.

2013.12.23

Saturday I run errands. When I return home, MW informs me that she slipped and fell. She had been cleaning the floor at the time and it was wet and slippery. Falling wasn’t Huntington’s, was it?

No, of course not. The floor was wet and slippery, duh.

The night time trend that has been going on for months now is MW will start obsessing over some non-existent ailment and have a difficult - almost impossible - time trying to figure out how she’ll be able to sleep. Most of the time this involves her moving from the mattress we’ve placed on the floor to the pile of comforters we’ve crammed in the closet. Then back again. She’ll do this back and forth until around midnight then she’ll fall asleep (usually in the closet). She snores loudly so I’ll hear her sleep until around four or five when she’ll wake up and ask how many hours she slept.

Then she’ll sleep again until seven or eight. Snoring.

What all this means for me is that, on average, I’ve been getting around three, maybe four hours of sleep a night. It is exhausting.

Before she started all this, before she quit her job in September, we slept apart. Bliss! I slept on the floor in the living room, she had the king bed in the master. It was grand. I would wake up at five, spend an hour or so getting everything ready for the day, and then wake her at six.

I had the morning. I had sleep.

Now I have deprivation and a feeling of being displaced.

I’m also getting ahead of myself. The point behind all this is to create a chronicle of MW’s behavior. Perhaps this will help when the problem grows too large to ignore or shroud. 

Anyway, to say it started in September would be disingenuous as one is born with Huntington’s disease so it is not as if I can pin-point a date where the dementia started; no, indeed over the course of our 20+ years of marriage, I can think of thousands of incidents I would consider “demented” starting at day one. But then I’m sure most husbands would say that about their wives, so I’m choosing the day MW quit her job - September 2013 - as “The Day”.

Here’s what led up to it and the fall out:

She had a few nights where she wasn’t sleeping well due to a non-existent but perceived illness. I do not remember the details, nor are they important, because it is always something - some ache, some bump, some discoloration, some cough, some sneeze, some something that makes her think she has cancer. This doesn’t actually worry her as much as the thought of worrying about cancer does. Confused? Welcome to my world. Basically she is so terrified of not-sleeping that she worries that her worries will keep her away.

Nice, right?

So she’ll spend the first part of the day asking me if that bump on her foot is cancer, then the last hours of the day worrying that she won’t get sleep.

Around September she was so worried about sleep, that she didn’t want to risk having to wake up in the morning to go to work. So she quit.

The next thing she did around that time was to go to a relative - an aunt - whom she hadn’t seen or talked to in years and ask for medical advice (“Is this bump cancer?”) She unloaded a lot of stuff on this aunt, even mentioned that she was concerned about Huntington’s disease, so the aunt called MW’s father and he called the rest of his family, and then one of them called MW to yell at her about it.

I forgot to mention - MW’s family is a pack of useless tits.

Not to go into too many details, but the fact that my mother-in-law died of fucking Huntington’s disease is, like, a goddamned nightmare. To them, however, it is a nuisance. I cannot fathom how they have no interest in what the disease does or how to cope with it. But they don’t. Never did. They just yell and criticize.

My approach may not be the best; but early on I decided that, because MW has a good chance of having Huntington’s disease, I would allow her to basically run her life and mine in the way that made her the most comfortable and happy. Sure, that was HUGE sacrifice on my part, but then again at least I wasn’t on the hook for dying an early, grotesque death.

Her family, however, thinks she’s just a selfish spoiled little brat that needs to be reminded of how terrible she is then told what to do. Often and loudly.

Okay, so now MW refuses to talk to any of her family because she is afraid they’ll yell at her for having Huntington’s disease (she’s probably right about that). Also, she has alienated most of my family - except my brother - but I can’t talk to him about it because what’s he going to do? They are already patient beyond reason and if I tell them that they need to be even more so because MW is ill, all that does is bring about pity.

Bah. We’ll be full of that soon enough.

So for now it is just us.

2013.12.20

My mother-in-law died of complications from Huntington’s disease. She was mid-to-late sixties at the time.

My wife is in her mid to late 40s.

She is descending into Huntington’s disease.

Everyday I lie and tell her that is not the case. I tell her she shows no signs of having the disease. I tell her even if she does have HD, she won’t show symptoms until much later in life.

She quit her job because she lost a couple nights’ sleep. I told her that was a fine decision.

She has tacked up notes all over the house: “Don’t be sad” “Always turn off the stove” “Park the car in the garage”. I ignore these notes.

She sleeps in a closet where I’ve nailed mattresses and pillows to the walls so she won’t hit her head anymore. I pretend this is normal.

She frequently bumps things, spills things, breaks things, stumbles, and you have to be very careful when handing her anything. I assure her that everybody is clumsy. It’s no big deal.

None of these things, I tell her, are signs of Huntington’s Disease.

I don’t know what else to do.

My wife has made it very clear that she is not now nor will she ever be willing to take medication to address any “mental” illness she may be suffering. Those pills, she is sure, have side effects much worse than the diseases they are supposed to treat. Also, she wouldn’t want her personality to change.

I have tried explaining that Huntington ’s disease in not a “mental” illness - it is physical, like diabetes. She would take insulin if she were diabetic, yes?

No.

She will not treat the disease so the only thing I can do is manage her behavior to the best of my ability. I’ve been doing alright for a number of years so far, but I’m afraid we’re now approaching end-game.