Friday, July 29, 2016

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.

Friday, July 8, 2016

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.