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.