Thursday, June 23, 2016

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. 

Monday, June 13, 2016

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.