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.