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. 

2016.06.23

Caring for someone with Huntington's Disease requires a committed team of doctors, therapists, friends and family. 

Right. MW has me. That's it. And I'm kind of a fuck-up.

However, last week I brought on board a new teammate - Amazon Echo Alexa, a glowing cylinder which listens and talks and reminds you about calendar appointments and to-do lists. 

I've never really put much faith in technology - in my experience the "garbage in, garbage out" axiom proves true more often than not - but I must say I've been pleased with Alexa so far. All MW has to do is say her name then follow with a task: "Alexa, to do list, clean the bedroom" then, later, ask; "Alexa, what's on my to do list" and she'll get a run down of everything on the list.

So now, instead of the dozens of sheets of paper taped up all over the house, there is just one note taped up in the most frequented rooms that reads; "Ask Alexa"

Nice. 

And, not only is this good for eliminating the HD wallpaper, it also serves as a sort of speech therapist. Alexa is pretty sharp, but you still have to talk clear and concise when giving instructions. Huntington's victims often slur and stammer when speaking, so MW has to concentrate and work a little to get the words out right when dealing with Alexa. I feel this is good practice for MW.

And later I can log into the computer, access the list, and clean it up so it makes sense.

Finally, a little help.

***

Unfortunately Alexa is no help whatsoever with pest control. Yesterday morning MW saw a tree roach in the bathroom and we are all still dealing with the ramifications. Last night we didn't get much sleep because MW kept changing beds, terrified that there might be another roach somewhere in the house. Recall that the only place she feels comfortable sleeping is the sitting room where we've lined the walls with sofas and blankets tacked up to filter out lights. Well that room is adjacent to the bathroom so it was a no-go last night. Instead, she tried to sleep upstairs. 

When that didn't work (too much light; also, afraid of waking up groggy and falling down the stairs) she came back downstairs. 

However, visions of roaches soon chased her upstairs again. 

Eventually she wound up sleeping in her usual place, but by then it was one in the morning. I was exhausted. Note that every time she moved beds, I not only had to move all her pillows/blankets, I also had to move the TV and cable box. MW needs TV to fall asleep. I probably made around 20 or 30 trips up and down the stairs carrying heavy loads each time. I imagine it would have hurt my hernia more had I not been pretty drunk last night; so there's the silver lining I guess. 

This morning MW was still complaining about the roach, which means we'll probably be doing the same thing tonight. Alexa, to do list, buy more wine. 

2016.06.13

Oddly, MW's mental functions seem to be... not improving, not necessarily, but she is functioning rationally at a slightly more elevated level than usual. Meaning, she's getting shit done around the house; hiring people to clean, starting home improvement projects, even making plans to meet with friends. This part is encouraging, however, as if to mitigate any feelings of hopefulness, I've noticed an increase in the severity of chorea. She constantly drops things, it's impossible to hand her stuff and when she tried to give me something I have to grab it like I'm snatching my lunchbox from a teasing bully. 

Also, I'm certain she'll quit her part time job soon. They are transitioning her to a new department and she's nervous about the work. And in subtle ways, I'm encouraging her to quit because I'm afraid somebody at the job will say something about her behavior or appearance that'll set her off. Just another of those HD "no win" situations: if MW doesn't have a workplace to go to, co-workers to socialize with, that's more time for her to sit around the house going crazy; but if she does go to work she's exposed to external factors I can't control. What's the right thing for me to do? 

Drink.

And that's another problem - now that MW is moving to a new department, even if she stays at the job, she won't be working weekends. I will never be able to drive to the liquor store again. So now I'm pretty much a the mercy of the CVS next to my office; wine only - and I've reached a level of sophistication where wine, yeah, doesn't really cut it anymore.