Em's Mess&Clutter

limericks, maybe?

2012-02-11T22:14:00.005-05:00

Tetralogy is a new word for me. But trilogy wasn’t going to work since the book I’ve just finished making is the fourth, not the third.

Still, as cool a word as tetralogy is, it might be more accurate to group book 4 with books 2 and 3, as a trilogy which was preceded by book 1. Book 1 is longer and more complex, but in no capacity less stupid. So, it depends on how you like to categorize, and I like to categorize in a way that lets me use the word tetralogy.

By not going the lazy route and snagging a legit publisher, I get to do my own patchy editing and build my own book covers. This way I can say I’m a bookmaker, and confuse people.

I don’t know what I’ll do next. For now at least, definitely not fiction for middle grade readers. I should have stopped writing fiction for middle grade readers 2½ years ago, after wrapping up the packaging for what was then the trilogy. But once I started #4, I unleashed an inescapable sense of obligation to some fictional people who had only just started to exist. They like their stories to resolve. So, in a carefully blended recipe involving one part implausible and two parts trite, I resolved it.

Well, I will have to do something next. The world can live without more bad fiction from me, but years have proven, repeatedly enough, that I have an essential rda of writing project. Furthermore, there are no more iterations of Portal for PS3, and Epic Mickey 2 won’t be released until the end of 2012. I cannot stand Half Life 2, as one is constantly beset by monsters, or security thugs firing guns, so there—I’m out of options. Bored babysitters go insane, and that won’t do anyone any good. So...something. Just not middle grade fiction.

Pentalogy is just not quite such a fun word.

Paging Uncle Charley (again.)

2012-01-28T17:48:00.003-05:00

For a while there I really had myself going. I was actually thinking that Jeff could be happier living in the nicest of places, equipped for his needs, where he could socialize with others like him. I, meanwhile, would devote major portions of my days to hanging out with him so that he would continue to feel the continuity of my presence, but I would go home and have nights, plus portions of each day, to call “normal.”

There is such a haven near Annapolis, that might actually offer what I’d require for Jeff. I’m on the verge of visiting, but now just for informational purposes. I didn’t even freak about the annual cost at first...not sure why. But sitting down today with the square-in-the-face reality that the cost (which we’ll call x + .15x) exceeds my household budget (aka x) by 15% has really put the notion on a ledge called extraordinary and improbable. Not to mention irresponsible. I’m not complaining really. I have what I need. I just don’t have what Mitt Romney needs.

In some ways it’s better to wrassle these alligators, realize you’re bound to lose, and take it from there. Toying with the thought, as if it were realistic, threw me into a state of such non-equanimity that I could neither sleep nor not-sleep without psychosomatic pain and a sense of impending crisis. Shaking hands with it and recognizing it as not-an-option gives me the liberty to face what I’ve got to deal with and make the best of it...which is something I was doing pretty well up until opening the door a crack for that other thought.

Anyway, I think I will still visit. Maybe seeing it in person will reassure me that it wasn’t a good thought from the get-go. Now I’m back to needing Uncle Charley. Suitable applicants may inquire.

and today...

2012-01-22T14:12:00.002-05:00

...Jeff asked me if I thought he'd be any good at accounting.

drinking to that...

2012-01-19T18:44:00.000-05:00

Tonight Jeff was feeling a little celebratory. This was later, after he threw the Princeton Review LSAT book on the floor. I asked him if he also wanted to stomp on it, and he almost did.

These events were precipitated by Jeff's frustration that he could make no sense of the book. I knew this, and I suppose I was trying to, sort of, force the issue to a closing point by buying that book. As of today, it seems to have worked, relatively painlessly (except from the pov of the almost-stomped book.)

I tried to help, which was part of the plan. We sat down and tried a practice test. If a veterinarian must transport animals, using 4 cages, each of which has an upper and lower berth, and there will be 3 male animal (none of which can share a cage with another male,) and upper berths #1 and #2 will be occupied by females, then which of the following statements (A through E) cannot be true?

The correct answer was F: How does this apply to real life? This is stupid. I'm going celebrate. (Why?, I ask.) Because I don't have to take the LSAT.

And then somewhere, either just before or after the last paragraph happened, the Princeton Review LSAT book got thrown on the floor.

I picked it up. I haven't thrown it in the recycling bin yet. Later, maybe, we'll line the upper and lower berths of cages 1 through 4 with its pages.

It's still law...

2012-01-16T14:35:00.002-05:00

Saturday: This is an experiment. Jeff sat down and said, “There’s one more thing we have to talk about. Law school.”

”Ok,” I said. “Go for it.”

”Oh,” he replied, with a note of surprise. “I thought there was going to be a big argument. Ok, so let’s do it.”

”Well, it’s not ‘us,’” I cautioned. “I’m not doing it.”

He nodded. “I know.”

Now I’m wondering if there will be more questions for me to answer, or whether the subject has been satisfied now that I’m officially not standing in the way.

Sunday: This morning Jeff asked if we could “stroll over to the law school.”

”Which law school?” I asked. “Maryland,” he said, meaning University of Maryland which is in Baltimore.

"It’s not exactly strolling distance,” I said. “Maybe you need to do a little research into this.” (I said this fully realizing that Jeff doesn't have the cognitive wherewithal to research the dog's eye color.) So I’m not sure when it will come up again and what to say that is neither discouraging nor pointlessly encouraging. Possibly, if we obtain written information, with forms and whatnot, he can spend time riffling through them for months to come. It’s a thought.

Monday: Substitute new thought. In my internet delvings into how best to deflect or manage this recurring theme, I realized the obvious: There is no road to law school on which you will not encounter the gatekeeper called LSAT. This is easy for Jeff to understand. That is, it is easy for him to understand that the LSAT is a requirement. Understanding the LSAT prep book I will buy for him today at Barnes & Noble, when we make our midday outing, is probably not going to be so easy. Still, it seems a next step is necessary since this notion has lodged itself fiercely in his cranium in a way that things like the route to the bathroom cannot.

It is almost a certainty that whatever questions you might have about my “strategy”(?) in this matter are ones I’ve already asked myself. Should I not nip this in the bud? How? I have already attempted to make the point (as a follow up to “go for it,”) that people who go to law school must be able to accomplish this without their spouse’s involvement. He says “of course,” then, when we’re in the car on the way to lunch and I’m enumerating the errands I have planned, he says “and then, law school.” As if that’s one of my errands or something I’m supposed to do. So today, I bought him The Princeton Review LSAT Prep Guide. Was this $24.37 paid toward something I should have already said “no” to, or have I bought myself a functional distraction?

Just “no” will not work. That means I am the roadblock. The truth (i.e. “your brain has been so damaged that you cannot possibly comprehend law, let alone write a coherent note, let alone find a classroom,”) is depressing. I don’t want to depress. This has to play in a way that I am not the enemy, nor am I the wielder of the harshest truths.

I have some hope that the LSAT book is a good idea. I can hand it to him whenever the subject comes up. He will not be able to read a page of it. But I don’t think that even his damaged brain can construe that as my fault.

Street Art

2012-01-08T18:48:00.002-05:00

I distinctly recall noticing the pipe cleaner in the middle of the road a day or so ago. Roughly in front of our next-door neighbors’ house, it was an odd bit of flotsam to see lying in the street--fluffy and white, with an inch at each of its ends bent at a jaunty 90º angle. Not that I measured. But, I did note it as we walked the dog by, and I’m equally certain that Jeff did not as he was drifting off toward the Dunkers’ house and I was about to re-trajectorize him. (That’s not a word. Don’t look it up.)

Fast forward to this afternoon. I’ve set my iPhone timer for 33 minutes, and I’m trying to take a short nap on the couch while hiding my face and chest under a throw pillow to keep Chessie the cat from settling in that exact location. I hear Jeff ask Becca something about where is Mom, because he thinks I might want this. (whatever this is. I don’t find out until my timer goes off some fraction of 33 minutes later.)

You’ve probably guessed correctly. “This” is the white pipe cleaner, only slightly more squished by traffic, and now lying on the bit of kitchen counter where I routinely fix my muesli in the morning. Becca says “He thought you might want that.” “Thanks,” I say. Then I deposit it in the trash can while wondering, aloud, what other objects Jeff might like to pick up off the street and place on our food preparation surfaces. “A dead squirrel for instance?”

Jeff is pretty easy to amuse these days, and my dead squirrel joke got him chuckling for a good three and a half minutes or so. Later I found about 2½ inches of stick which undoubtedly came in from Jeff’s stick-breaking adventures in the yard and attempted to establish a new home-base on the kitchen floor near the stairs. I said no.

This week it's law.

2012-01-03T21:46:00.001-05:00

I want to know what will happen when. I admit it. I stink at Buddhism. Nevertheless here we go, as always—practicing the ineluctable art of not-knowing-ism.

Jeff is getting worse at seeing things, worse at eating things, worse at even knowing which way is up or where to place himself. Strangely, this has been accompanied (for at least the past couple weeks,) by an increased restlessness and determination that he should be doing something.

Maybe different areas of the brain have re-flashes of activity over the course of a decline, like a changing pattern of flickering lights as the power is drained from the system.

Now he thinks he should go to law school. Management of this kind of thinking remains the same. DON'T shoot the idea like a clay pigeon...just listen, understand, and respond non-commitally. Of course there is always me and the urge for truthfulness. I resist it. There is little point in saying "You can't read, drive, or find your way out of the bathroom. Just how are you going to go to law school?"

I had to shove that little urge under the couch cushion and sit on it this morning. It might actually be more sensible to just say "Ok, cool idea. Go to law school." Then bop the ball back into his court every time the thought resurfaces. Maybe that wouldn't be so bad. Sometimes Jeff can put his shoes and socks on. I bet most lawyers can do that too. It's a perfect fit.

having words with friends.

2012-01-01T22:16:00.001-05:00

Words with Friends is a Scrabble™ knock-off, in case you haven’t encountered this manner of trounce-or-be-trounced interactivity, available to ipod/pad and smartphone users.

Flashback to school days...I’m wrapping up 6th grade. Oak Hill Elementary—such a colorful exemplification of all that was wrong with 70s notion of education. A place where I could crawl around under “study carrels,” or swing on stall doors in the girls bathroom when I was meant to be self-pacing myself through a series of math cards. Let’s say 4th grade math concepts were more or less covered by the blue set, and 5th grade by the orange set. As I was too busy practicing math-avoidance to complete more than 30% of the blues, they’d just promote me to orange when I moved ahead a grade. I scored well on standardized tests after all...why insist I actually learn the concepts?

I tend to fare pretty well, on average, in Scrabble type games. I win a lot. You (anyone, actually) would beat me at whack-a-mole. I’d invariably lose a math-off. If the devil went down to Georgia I would NOT step up to the plate with my fiddle, and you’re going to get a book seriously published before I do. But I might beat you at Scrabble or Words with Friends. But I might not.

Junior High was a rude awakening. Unlike Elementary School where you mingled with the same-age kids who just happened to live in your neighborhood, Junior High drew from a larger region and they started grouping us by whatever the prevailing measures of academic aptitude were. Suddenly, I ceased to be smart (relatively speaking) without exerting effort. I was in the midst of academically-competitive kids, and the realization took me down a peg or two.

I know a hot game of Words with Friends when I’m in it. There are better-than-average players, against whom word placement becomes a thrust, or a parry or a “take that!” But it’s okay, because I’ve been softened up like an old punching bag. My expectations of victory have had practice being put in their place. The apple, you see, truly does not fall far from the tree. Daughter Becca has bested me two out of three so far. I can deal. But if you challenge me to whack-a-mole I’m going to say no.

talk is yasui, as long as we keep it light.

2011-12-28T13:59:00.001-05:00

I’m balancing on a tricky tightrope between providing a useful service towards Gabe’s academic success and being an annoying mother.

”Chokoretto no hou ga cohi yori suki desu ka?” I articulate carefully in his direction.

He frowns and, preceded by a sigh of sufficient length to allow what I said to sink in, replies, ”Hai, I like hot chocolate more than coffee.”

If it were up to me, I’d Skype him several times a week over the upcoming semester just to drill him on Japanese. Not because me tutoring Gabe is something that is particularly compatible with either of our temperaments, but because a) I DO want him to have a successful semester and recover from academic probation status, and b) it is mentally invigorating for me to review Japanese. Unless he proposed it though as the coolest notion he’s had all week, I think this will not come to pass. Instead, I will have to take a very Buddhist approach to the non-existent control I have over how his Spring shapes up, and allow it to be his process (with, I hope, significant helpful input from the faculty mentor he’s selected, and with whom he’s supposed to be consulting weekly.)

Because if academics do not pan out as a means of extending his maturing season I will almost certainly have to obtain a car for him to drive to the full-time job he will certainly have to find, and I’m not ready for that. The car thing. Scary. Also he’s messy, and I’m not in the mood to generalissimo anyone into maintaining adequate house-mate habits. Even though I guess it’s my job, seeing as how I birthed him and all. If this happens I will consider adoption offers, if anyone needs an almost-20 year old. Let’s root for Plan A.

Jeff, meanwhile, would like a car. This comes up every so often. This morning, as is typical, he wandered into the kitchen and said ”You know what I want? I want a used car.” Last time it was a truck. He also wanted to know how much a used Subaru would cost ($14K, I supposed,) and posited that it was worth it to him at that cost if we could swing it. I never know what to say in response to these exchanges. The impulse to get real is great. I would tell him that he is visually impaired (essentially true, and easier to swallow than cognitively impaired,) and remind him that he has no license and is uninsurable. I try not to do that though, truthful impulse notwithstanding. Today I just put it off, as usual, with ”Ok, let’s think about that one.” That has sufficed for several hours now, with no revisiting of the question.

Last night when I went to bed, Jeff was snoozing at some level considerably deeper than REMs, and I had the brand new and very strange experience of not recognizing his face. I scrutinized for quite a few minutes then came back and stared some more, wondering what kind of game was being played here...was my software glitching or was there something truly missing? You have undoubtedly seen a wax figure of a person which—no matter how morphically close it comes—does not really convey a knowable version of that person. It was like that. I pretty much had to accept the strangeness of the situation and go to bed anyway. By morning he resumed the familiar appearance of his AD-addled self.

Next up on the vocabulary list: takai and yasui, Japanese for expensive and cheap.

no, I don't go out in my bathrobe.

2011-12-20T22:36:00.000-05:00

It’s no mystery to me, really, why the trips I’ve taken with Jeff in the past couple of years have gone well. It’s that I have no third parties to think about. Free from the daily obligations of home, and minus the split attention dynamic created when anyone else requires my consideration, traveling turns out to be as relaxing as it ought to be.

This morning, on the other hand, didn’t go quite according to plan. Jeff has acquired a new tendency to let Freddi the dog out the front door. Freddi is not a well trained dog. I have to take responsibility for this problem, since all the training that happened 11 or 12 years ago was pretty much up to me. Anyway, she is not such a good dog that she won’t take advantage of a situation. Jeff tends to lose sight of just which side of the door he’s on these days, and he’s apt, lately, to let a fellow critter in or out if it seems to want to go either way. So, when I heard the tell-tale open/close door sound, with too much space in between, I hurried to see Freddi standing by the lamp-post giving me that look. The look that says “ha. I know I’m naughty, but heck...it’s fun.” But I couldn’t do anything because I was still in my fluffy pink bathrobe.

By the time I’d tossed on my clothes from two days ago Jeff had taken off down the street which was bad on two counts: Jeff doesn’t know how to get back from down the street, and he was effectively chasing the dog toward busy Evergreen Road. All I really had to do was wave Freddi’s leash at her and she turned herself in, but I had by then exuded enough of my roiling sense of frustration that Jeff felt grumpy for the rest of the morning, including the hour and a half we spent in the oral surgeon’s waiting room while Gabe got his bone graft.

Freddi and I had a talk a little later, and she knew exactly what I was telling her even though she wasn’t willing to make any promises about improved behavior in the face of temptation.

But in the midst of naughty dogs, impaired spouses, and recuperating young adults, I was having one of those sandwich spread squeezed moments (which other people have in much greater abundance than I,) but still, it reminded me of why—even with a rather mentally crippled travel partner—I like trips.

Fort Knox? It’s not in Johnstown Betty.

2011-12-08T13:42:00.004-05:00

Yesterday I had this dogged notion that Jeff and I would manage to remain at Disney Hollywood Studios (the movie-themed theme park) until they turned on the multi-wattage dancing lights holiday extravaganza that is the seasonal highlight of the “Streets of America” section.

To that end, I took us back to the good old Animal Kingdom Lodge for a mid-day nap. It’s what you do with small children to recharge their cooperative spirits, but the results were guaranteed to be dubious at best with Jeff.
Still, I will say this about our subsequent evening in the park: We managed. We poked around a bit (best defined as freezing in place every so often to let the throngs filter around us,) then had a very satisfactory early dinner at a facsimile of The Hollywood Brown Derby restaurant, where they chop the Cobb salad so finely it resembles tabbouleh. Not once though, did I encounter any reference to Fort Knox.
Fort Knox? Yes, I was wondering about that myself. In the inimitable way of an Alzheimer brain, Jeff awoke from his nap with the idea of Fort Knox somehow teetering on the edge of his frontal lobe.
”Yeah, Fort Knox,” he said as he got up, without further explanation. We went outside to our rented vehicle (a Nissan Cube, which I turned out to like very much.) “What did that sign say about Fort Knox?” asked Jeff, pointing out the window.
”I didn’t see it,” I said. “I just saw something about 'cast members only.'”
But Jeff saw it again a mile or so down the road, on a grassy, hazy highway median. “Right there,” he said, “It says something about Fort Knox.”
”It does?” I replied. “I’m just missing it.”
He saw it again as we entered the vast and sprawling parking lot. Small billboards line the lanes where the trams pick up and discharge human cargo. I saw an ad for the television show “PanAm.” Jeff saw something about Fort Knox.
As usual, I clued in the turnstile-manning cast member that Jeff would struggle with the insert ticket and fingerprint entry procedure, and she managed his ticket herself then invited us through the wheelchair gate. Jeff squinted at her name badge. “This is Betty,” I said, “from Johnstown, Pennsylvania.”
Jeff said “Oh yeah, near Fort Knox.” Betty forced an uncomfortable smile, already realizing that not both our decks were full.
”Thanks Betty,” I said.
For reasons that are unclear, that was the end of Fort Knox for the day. And the delicious but highly overpriced Viogniers at the Brown Derby made it better, fortunately, not worse.

Standing on our own four feet...for now.

2011-12-06T21:07:00.001-05:00

Tomorrow’s goal: Visit Disney’s Hollywood Studios park in such a way as to maximize our chances that Jeff will still be semi-functioning at 6:00pm. This is because at 6 they turn the lights on for some sort of epic holiday kilowatt spectacular. Thing is, I’m here in the season, which will probably never happen again. Hence, I want to see it, despite my confidence that I can continue to live happily without it.

To this end, I have booked a very early dinner (3:55pm, to be precise,) at the Disney version of the Hollywood Brown Derby, on the theory that dinner will be enjoyable regardless, and surely we can find a bench to sit quietly on for an hour (give or take) afterward.

It will not work to use the plan with which I approached both today and yesterday. That is, enter the park at rope-drop, do the one “thrilling” thing I’ve selected as appropriate, and try to just relax, walk, and look at things after that. I know this will not work because, despite my efforts to keep the pace relaxed and allow for snacks and sitting, Jeff turns into a lurching zombie by mid-afternoon, and must be returned to our hotel where he basically does not recover except in that I can lead him around and point to food I place in front of him.

So...that plan: out. Possibly we will go early, walk around a bit, come back and attempt a nap. Naps don’t work with neurodegenerated people quite the same way they work with toddlers, is the problem. The most effective strategy would be to impose a sudden and drastic version of Daylight Savings Time on Florida, advancing the clock approximately 5 hours. That probably won’t get enough votes from everyone else currently occupying the state though.

Which means, I guess, that it’s Plan A. Mid-day rest. Effectiveness: iffy. Something funny happened just before I obtained our boarding passes at BWI airport on Sunday. A member of the luggage lugging crew asked me, in a thick Central American accent which took me two tries to comprehend, whether I wanted a wheelchair. I guess that’s not actually funny, but it was novel because it’s the first time I’m aware of that someone perceived Jeff as wheelchair-worthy. For tomorrow’s agenda, that might just work. Too bad he’d never go for it.

(Interestingly, I'm having all kinds of people notice his condition and strive to help this trip. From airline attendants, to people manning the ticket turnstiles at Disney Parks. You stick your pass into a slot, THEN place your finger on a print-reading device, then retrieve your ticket from the other side. They pick up on Jeff right away and say "I'll take care of it," then just move him through without the rigmarole. Also, a lady held the tram door open this afternoon when it was obvious I couldn't help Jeff step and hold it myself. Nice people.)

But it is pretty...

2011-12-05T19:41:00.003-05:00

Here’s the thing I failed to take into account when I decided to bring Jeff to Disney World with me, and stay in the Animal Kingdom Lodge: The AKL is really dark. Dim, I mean. It’s an ambience thing, and I love the theme here, but it sure poses a challenge for Jeff.

Apart from a general tendency for his brain battery (and energy level) to run out of juice quickly, vision has been the striking winner in the race for most challenging deficit of the trip. Much of the wooden floor of the main lobby is polished to a high gleam. And while the lighting is low, it appears in abundant forms...Christmas tree lights, an impressive assortment of lamps, and highlighted African art in every nook. What this means is that Jeff cannot perceive the floor as a normal floor at all. It sparkles with so much reflected light (without the benefit of overall lighting,) that he steps onto that floor as if he’s either going to fall in a hole or trip over a tangled string of holiday twinkle-lights.

The stairwells, meanwhile, are carpeted in giraffe-spots WITHOUT that helpful strip of bright yellow paint we use to coat the front edge of the wooden treads at the Nags Head beach cottage. Hence, we traverse the hallways with me giving verbal directions such as: “The surface we’re on is completely flat. I will tell you when we get to steps.” And then I do. “One, two, three, four,” I say as we climb a flight. Then, at the landing: “Now it’s flat...u-turn!...Now more steps, one, two, three four...”

But I just thought of something. Even if we’d stayed at the brightly-lit Contemporary Resort we’d have had a problem. I know because we explored it today as part of my tour of holiday decorations. In the Contemp, the carpeting is a patchwork of primary colors, in blocks and patterns of assorted complexity. Jeff thought he was about to fall over objects strewn about the floor until I said “No, it’s flat. Just walk normally.”

Other visually-based problems are old friends. I’m used to him walking into doors if I don’t steer him through, or not knowing what on his plate is a finger food. (I try to make it all one or the other--forkable or not.) But difficulties perceiving the floor below him is a new gift, highlighted by the Disney interior design team.

It's a Small World.

2011-12-04T19:42:00.000-05:00

Here I am at Disney World, perfectly happy with the fact that—at 7:15pm—what I’m going to do next is watch Once Upon a Time on tv, and sneak upstairs to the Kilimanjaro Lounge and bring down a “zebra dome” for a mini dessert.

I’ll tell you what, airplanes and suchlike conveyances are tiring. The funny thing that happened this time and the last time we flew (which was in April) was that Jeff doesn’t know how to disembark. Even with me leading the way. He’s completely perplexed by the idea of ‘pick up your roll-aboard and follow Emily down the aisle.’

Another interesting, perplexing aspect to traveling that is new this trip has to do with those same suitcases and unloading them from the rear hatch of the car. We stop, we get out, we walk to the back of the car, I open the rear gate, I pull out both suitcases. Jeff says “ooookay,” and immediately swings the one I hand him back into the trunk of the car. “No,” I say. “We’re getting out now.”

Nevertheless, I think that—living in the moment as he must—he is having a pleasant time. And I am having a delightful change of scenery.

I was struggling a little bit with the indulgence inherent in this trip, and the idea of a place such as Disney World in general. Especially after a Facebook friend posted a link to an excellent series of photographs with the theme “Where Children Sleep.” Beautiful photos, beautiful children, often appalling living conditions. It’s very hard to look at the series and not come away remorseful about your plenty and almost sick about the excess so often depicted in stories about the luxurious lives of the 1st World very-rich. But then again, you can’t get mad at the 1st World very-rich for the fact that they hire an interior designer to decorate their home to maximum holiday excess while they’re away on Thanksgiving vacay without noting that it’s all a matter of degree and relativity. Here I am in a lovely resort. I am having fun.

Well, I guess it’s best to try to live life experientially, and be where you are, absorb what there is to absorb, and try not to get hung up on the fact that you can’t—at that moment—right all wrongs. Or probably ever. You can just try to fulfill the role in life you bumbled into, and hope you make a tiny difference toward the better.

People at home

2011-11-26T20:14:00.002-05:00

I would say people are crawling out of the woodwork this weekend, but I don’t like the expression. Especially given the fascination Otis the cat has with a particular corner of the kitchen, under the cabinetry. I’m hopeful nothing is crawling out there, or at least that Otis has the situation under control.

In a remarkable and rare confluence of humans, all four offspring have been (more or less) in residence for the long Thanksgiving weekend. This will revert to normal tomorrow when Rachel and Olivia return, respectively, to teaching and scholarship, and Gabe is likewise shipped by Amtrak to North Carolina after we grab a dinner bite at Union Station in D.C.

More remarkably, all woke up in time for a casual brunch we had this morning with their much younger Clement cousins. Becca hauled the ol’ Lego bin out of the basement, as is the custom, and the little Clem cousins adhered to their tradition of wanting to take our JarJar Binks Lego dude and several Lego pizzas home with them. Mindful of the fact that these same children have enough Legos at their home to sink the Titanic, I demurred. We will hunt down JarJar Binks and pizzas on Amazon for Christmas tokens, but retain what’s left of our supply for future Legomaniacs. While Olivia suspects that JarJar Binks might be shanghaied in someone’s pocket someday, we haven’t taken to pat-downs at the front door yet.

Now, Jeff has been nestled all snug in his bed, and I’m eating spaghetti. The girls, you see, have all decamped with gentlemen friends. If I were Mrs. Bennet, this would probably please me very much. Luckily there’s no entail here, so I get to keep the house, regardless. Don’t worry, ownership of this house does not convey any special title of upper-crustiness, unless it’s something like Earl of Esoteric HVAC Systems. No rich people will marry me for that title, I’m fairly certain.

I lost my albatross

2011-11-14T17:39:00.002-05:00

I guess a person can only live under a cloud of bereavement for so long. Not speaking for others of course, but I would never choose such a cloud. Still, I had one which started forming about when ’03 segued to ’04 and the person I loved began to morph from partner to guy-in-need-of-care.

You can’t help it is the thing. When you’ve spent 20 years in life-meld with an other who buttressed, buffered and ballasted you it’s not going to feel good when those features of his personality fade into oblivion. So, while I always got-r-done, it is also true that I continuously carried a small but potent albatross of grief in my left jacket pocket.

What happened is, sometime this year, as Summer turned to Fall, (can’t pin it to a day,) the albatross disappeared from my pocket. I’m not worried about the albatross. I think he will reappear in a slightly different guise somewhere down the road when PCA proves that it is, in fact, terminal. But for now I’m not going looking for him. Somehow, finally, a self of me emerged (or re-emerged,) and it’s one that is happy enough unpartnered.

Another interesting feature that was revealed as the skin of bereavement sloughed off is that I don’t mind being a caregiver as main occupation. Not because I think it’s cool or anything...it’s decidedly not-cool, but heck, I don’t care. Life can be fun. You just have to gear your activities appropriately.

There’s movie called Death Becomes Her in which the character played by Bruce Willis finally throws off the burden of being doormat to a domineering spouse and declares that “life begins at 50.” Luckily I have no nasty people to dispense with, but I’m pretty sure my 50s are looking like a nice change from my 40s.

and today...

2011-11-07T15:02:00.002-05:00

...it's William J. O'Neil, (founder of Investors' Business Daily and author of many of Jeff's favorite books,) who keeps "sending us this stuff. (what's the angle?)"

Do these books need to disappear? I don't know. So far, distraction works.
Jeff: "Why does he keep sending this stuff?"
Me: (shrug.) "I know, let's walk the dog."

some things can't be accounted for.

2011-11-03T09:57:00.003-04:00

Jeff picks up his favorite book, Accounting for Dummies, and asks me: “Why do they keep sending this to us?”

”Your book?” I ask to clarify. “I think we bought it at Barnes & Noble a few years ago. Nobody sent it to us.”

”Yeah,” he says, gesturing with the book in question for emphasis, “but it seems like they send it every day. Why is that?”

I’m not sure why Accounting for Dummies has remained, for quite a few years, a book that Jeff is most likely to pick up, but it has. A few years ago, probably about six years ago, Jeff decided he would take courses in the accounting track at Anne Arundel Community College. He got a few sessions into course 101 (whatever it was called,) before deciding that he’d “fallen behind” and would re-enroll next semester. Falling behind, translated into my viewpoint, meant that he’d lost his car in the vast parking lot options at AACC at least twice (requiring my rescue,) and he’d rarely arrived for class on time (as one had to locate the classroom each and every session.) He “studied” by looking at his class materials and inscribing a phrase, such as “Assets = Liability + Capital” twenty or so times, at assorted oblique angles, on a piece of notebook paper, but little else. We were clearly beyond the point of no return.

Nevertheless, he has retained the notion that he’d like to study accounting, and—to that end—stares diligently at the table of contents in Accounting for Dummies, almost daily. So whatever it is he’s asking me about this morning represents a new kink in the hose.

”They keep sending us this,” he insists, patting his book. “I don’t get it.”

I realize that trying to make sense of the “reality” from which he’s speaking is going to be a fruitless endeavor. “Do you like this book?” I ask.

”Do you move this around?” he asks, a little more on a page that corresponds to one I recognize. “Sometimes it’s here, sometimes it’s over there...”

I say “I think you just read it a lot, and sometimes carry it around without even noticing. Everyone does that.” His face still shows utter perplexity, but he’s willing to buy that story, for now.

Later he wonders, aloud, whether he’d be any good at stock market investing. I show him his books on that very subject. “Oh yeah, those,” he says.

Betta' Beta.

2011-10-27T09:58:00.001-04:00

Clarence my cross-eyed muse and I, and the other I, were having a conversation. See, I’m kind of more or less done with the drafting of the manuscript heretofore known (to me anyway) as “Bea and the Smart Kids.”

Drafting, yes...editing, no. That’s being difficult. I’ve been working on the thing for so little and for so long that not a one of the three of us (Clarence, I or I) can even comprehend it as more than an overly-familiar pablum of uninspired blah-ness. I probably need to work on something else. But, you know, there’s this problem I have with not completing something. I’ve not-completed something in the past and it doesn’t feel right. The not-completed thing wanders the deserted highways of my imaginary world like a waif in the night (ok, it’s not really that pathetic...it’s more like that broken window screen you never fixed, in the garage.

Anyway, Clarence says it’s my fault for not showing up for work often enough, and I blame me, and then it’s this whole merry-go-round of buck-passing. That kind of merry-go-round they used to have at children’s play parks with four different colored textured metal quadrants, and galvanized hand-rails. You’d spin the other kids until somebody either fell off and bonked her head or barfed, and no parents thought of municipal liability.

Normally, at this point, I’d edit to a fare-thee-well while still managing to overlook a handful of blatant typos and some really awkward constructions, then I’d sketch some fifth-rate cover art and try to disguise its dorkiness with watercolor paint, and then I’d send the whole assemblage to Lulu, which would happily provide me with another box of books to store in the closet. Trimmed in turquoise, or maybe yellow.

Trouble is, neither I nor I nor Clarence can summon enough love for the manuscript to jump into that solid book creation phase. But we’ve also agreed that we’re not sending it to live with the waifly window screen. So I think we’re going to (for now) settle for beta testing. (“Beta testing?” says Clarence. “You mean that cloud-o-sphere called emilygillespieclement.com?” “Yes,” says I. “It’s very much like The Island of Misfit Toys, only the residents aren’t as cute as the doll in the gingham dress who had no apparent flaw. And we give them marshmallows for their campfire. Don’t look at me that way.” Clarence suggests that perhaps betta testing--where we drop it into a tank of small pugnacious fish would be better. I ignore that.)

Anyway, I think I’ve got Clarence on my page now because until he gets his eyes fixed you can’t expect anything more brilliant to roll out of our fiction mill. So, yes. Pretty soon I’ll be mounting the chapters under the heading “new but stale" or something.

But first I have to at least try to edit. A little. I will leave some terrible prose though. Don’t worry.

going

2011-10-26T14:22:00.000-04:00

I remember exactly how I felt this time last year when I was in a flurry of travels. End of summer beach week, two trips to Connecticut, and a cross-country Southwest Amtrak adventure. I believed the end of opportunity was impending and I wanted to make hay while the sun shone. Shined. (I don’t like “shone” there, but I think it should be. Is this breaking the third wall? This is not a play, so no.)

Then, in April, we managed the Northwest Amtrak trip with Mom...so my sense of impending closure was a little premature, maybe. Or maybe not. Things are and were closing in. Yet here I am, a year + later, planning more comings and goings. But I’m nervous in a way that I wasn’t last year because Jeff’s world is shrinking and we can almost see it day to day. Shrinking, in this case, means...maybe...the breadth of meaningful ways in which he can interface with the world. Well, that’s vague and fraught with jargon-babble. That’s because this is really hard to describe. You sense it more than you quantify it.

Let’s try another way. There is a balance between the pleasure you get from visual stimuli (because of its meaning to you, because of the way the things you see pluck the strings of your intellect and emotions,) and the bothersomeness of the visual cacophony which is too much for you to sort in a pleasant way. As more data defects from the pleasure to the bother side of the scale, less is attempted. More is shut out. A new experience may have very limited worth, if it is even tolerable. (Yet, ironically, susceptibility to boredom still exists.)

Boredom, speaking of boredom, is a condition to which I am supremely susceptible, even though I was talking about Jeff. But now I’m talking about me. Yes, caregiving can get pretty boring. Honestly, I don’t know that it makes an owl’s hoot of difference to Jeff whether I create adventures. But for me it does. I have to try to squeeze what remains out of his capacity to go, see, experience, and I’m not sure how I’ll deal when the door closes to a pinpoint.

For now, I have ways to offset the disorientation. I hold onto him. The worse he gets, the closer I pull him. It seems like being close, held, and guided, with verbal commentary to distract him from the visuals which may be too fast to process, make any experience manageable for Jeff. At a park, at a pace that average folk might find tedious, we can stop, occupy a bench, and let the visuals pass by without multiplying the relative velocities by moving ourselves. Until we’re ready.

I don’t mind that every trip is experimental. That an aspect of each adventure we attempt is the gauging of whether or not we can keep managing such things. I don’t want to be stuck without even the option of half-baked adventures. So I’ll keep pushing this cart, until all 4 wheels fall off.

splash.

2011-10-20T20:45:00.001-04:00

I’ve made a plan. I’m tucking Jeff into a duffel and heading to Florida for a four night 50th birthday present to myself. This will occur just after my birthday, in the first week of December.

Now I’m aware that Disney is not everyone’s idea of “real” travel —and without a doubt, I like reality-based adventures very much—but this is what I whimsically want to do, so I’m not going to try hard to explain myself. We’ll stay at the Animal Kingdom Lodge and see...animals. And eat stuff. And take what slow-paced, low-key pleasure we can in a few short days at the parks, (uncrowded in early December,) enjoying mostly things like The Jammitors. To be followed by sitting on the veranda at the AKL watching ostriches.

I’m a little worried today though. Jeff’s had a foggier than usual 48 or so hours, and you just wonder...are we encountering a new set-point, or is it just a passing low pressure system? So we’ll see how things play out. I have trip insurance for the cost of lodging and whatnot and won’t lose out too much if I must cancel.

The thing about AD is that it’s like Splash Mountain. (Disney reference...to an attraction we will not visit this trip.) You know that while you might be on a manageable horizontal boat ride with just an occasional swoop to port or starboard, you’re going to hit the 45º downward flume, and you’re going to be at a lower elevation at the end.

And then I’m going to be looking around like...what am I supposed to do with this? Where’s Uncle Charley? (You know...William Demerest from My Three Sons.) Or some other avuncular type who wants nothing more than to move in to the room currently housing Hazel the crazy kitty, and Be There for Jeff. Because Jeff would love him and be comfortable with him and vice versa. And I wouldn’t have to imagine that I’ll be doing everything and housebound if there’s something scary like that at the bottom of Splash Mountain.

And of course there is. It’s Alzheimer’s.

Maybe an arrow would help?

2011-10-13T10:06:00.000-04:00

Yesterday morning I stepped into the bathroom onto a damp bath mat. This was curious, since I’d last taken a shower 2 days earlier. A sniff suggested the cause. Actually, it was a little more forceful than a suggestion, nasally speaking.

There is a scene in the Swedish movie “A Song for Martin” in which Martin, the symphony conductor now suffering from Alzheimer’s, excuses himself from a restaurant table and takes a pee in a potted plant. Things like this come to mind. Especially after this morning. I was doing sink business at the sink and Jeff came into the bathroom. He stood on the (clean) bath mat and faced the shower. “What are you looking for?” I asked. “I’m waiting for a turn,” he said. “A turn for what?” I asked. “A turn to pee,” he said. I showed him a better target.

This is a reminder of the fact that much of what we humans do is not really in our nature. We train ourselves and our children. Cats are more natural than humans at getting with the bathroom hygiene program. (Well, not my cats in particular depending on which of them you’re asking about, but cats in general.) Anyway, I recall that Jeff is not the only person I can think of with a declining mind who has selected a bath mat as a likely patch for business. And why not a potted plant, if you stop and think about it. I used to have a cat who thought likewise.

Wow, I've fussed about my brain...

2011-10-11T10:11:00.002-04:00

...for two blog posts in a row. Sorry about that!

Who's on First? Don't know...but I'm picking clovers in left field.

2011-10-11T10:08:00.000-04:00

There’s a bit of a disconnect between the portion of my brain known (in neuropsychiatry) as “Executive Function” and the part known (in common parlance) as “Slacker.” Or perhaps it’s more that Executive Function never took Slacker to puppy training school at Petsmart, and now Slacker, when asked to perform, falumps onto the floor belly up and says “no, not fetch, belly rub.”

Anyway, Slacker is evidently asserting passive-aggressive control of the situation this morning, as I sit at an outdoor table at the Baltimore Tea & Coffee Company with my working notebook (from which I am intended to derive where my story is meant to go next) open at my right elbow.

Slacker, though hopeless at home, is easily distracted by the parade of humans coming in and out of BT&C. Ruddy business suit guys who don’t quite have their shirttails all the way tucked, or the pristinely makeupped Asian girls coming and going from Bella—Lifestyle Nail Salon & Spa next door.

Slacker, now that I stop and think about it, has more or less helmed the ship as a lifelong habit. And this explains WHY I didn’t, to my present-day chagrin, learn Latin, geography, and the Encyclopedia Britannica as a kid like my brother.

What I have done, despite Slacker’s insouciant but unquestionable grip on the control-stick, is squeeze out 3.823 books. It’s that last 17.7% of my current effort that Executive Function and Slacker are presently tussling over.

Now, you would think (well, in fact you probably would not think, but you would hope,) that almost-four works of fiction, wrassled from the playful but resolutely ornery jaws of a bad puppy would deserve (if real-life were stories) to turn out to be sparkling with the sort of free-spirited wit that is coveted by the reading and editing world. Actually, what happens is that you get chewy gooey remnants with their squeakers ripped out. Because real-life is not stories, and this outcome is what makes the most real-life logical sense. Still, we carry on...Slacker, Executive Function, Clarence my cross-eyed muse, and I. Because that’s all we can think of to be.

Goal: By the end of today’s work period, only 17% will remain to be written. That’s a few hundred words, that 0.7%. And this blog-post doesn’t contain a one of them.

flicker...pop...oops.

2011-10-04T09:57:00.000-04:00

The Whole Foods Market internet connection is not working. It usually does, so perhaps I will bundle my flotsam and decamp for a more central work area. This one, though, has a window with a view of a) traffic coming and going from the shopping center and b) Giolitti Italian Food & Wine (Homemade, Local and Extraordinary.) The alternative would have a view of the “Thank You For Shopping With Us” sign.

I did not leave the house with much of a plan this morning when Kimberly arrived. Not much of one. Although, as I have reached the climax-through-denouement stretch of my “Smart Kids” book (whatever it intends to be called,) that’s the obvious choice of activity. But my brain is working with a scattershot functionality which suggests that oatmeal for breakfast is not as good a choice as nuts and seeds. Nor does this Allegro tea...”Engage Your Brain” (or something) is the name of it...seem to be living up to its promise.

I have to wonder about this theory of humans, and the idea that one member of the species can be wholly responsible for another one whose circuitry has failed. Some of us (though as “intact” as we’ve ever been) still operate like a Kliegl light board with about 30% finicky switches. So you’d think there would have been some kind of quality control applied when they handed out life stories, but you know there’s not.

Whereas I would heretofore have a headache...

2011-09-29T10:26:00.000-04:00

There has, of course, been some legal rigmarole and financial configuring to do with regards to Jeff having retired from the hardware business several years ago. Among the interesting discoveries we stumbled upon following the tricky moves of the so-called “Great” Recession has been the one that nearly tanked the insurance policy that was contrived to enable my brother-in-law to retire his obligations to us.

The problem with insurance policies (and thank goodness I’m not in THAT business,) is that they might have been designed to float on the buoyancy of a good economy, as ours was. Sometimes, if your raft springs a leak, it doesn’t quite totally sink, but you know if you jump on it all bets are off. That’s where we were. We (as in said b-i-l and myself) refigured, cooked up a way to make higher payments (Jeff, after all, is not someone any right-minded life-insurer is going to take into consideration again,) and now have a somewhat smaller raft that floats.

Part of what this means is more stuff to sign, at the bottom of papers with words like “whereas” and “heretofore.” Usually if I squint and cock my head so that my left ear is higher I can come away from reading these documents with something akin to comprehension. If I were a lawyer though, I would get permanently stuck that way which would seem, eventually, to be an unfortunate condition.

Does Braco have a gazing ball in his garden?

2011-09-22T09:53:00.000-04:00

Am I procrastinating? Oh yes, I am. It is Thursday, writing time, and I am in Whole Foods having a cup of Allegro Breakfast Blend. I have picked up a copy of Pathways, a large (twice the size of a typical journal—I know there’s a name for that...tabloid?) publication which promotes such things as “mind, body, spirit and environmental resources” in the Washington D.C. area.

I usually like minds, bodies, spirits and the environment, so I picked it up to see what I might find. Leading off is “The Herb Corner,” in which an herbalist names his ten most incredible herbal products. I am sold. I definitely need to get myself some triphala to ease digestion, and while I’m here I might look for a product called “I Sleep Soundly” which could be useful in the area of releasing tension before bed.

Now I am scanning the rear of the magazine, hoping to find an ad for “Grannies Who Love to Come to Your House and Stay With Your Husband While You Go To a Movie.” I don’t find it. Instead, I find a full-page advertisement for an appearance at a D.C. hotel by Braco. Who is Braco?

At first glance, Braco is a kindly looking 50-something with a really weird mullet. He is from Croatia. From what I can glean, one shows up and, for $8, experiences a “gazing session” with a ballroom of other gazees. Braco does not speak in public. Apparently, his gaze is sufficient. Actually, if you follow the fine print, his gaze is more than sufficient and is not recommended for visitors under 18 as “the energy could overburden children.” And pregnant women. But it is recommended that you bring their photo. I guess that if Braco gazes at a photo of your loved one, the photo assimilates his power, a la Harry Potter, and forwards it to the proper address.

Yoga is smart, and so is dog-walking.

2011-09-21T17:19:00.001-04:00

What I did at 6 a.m. this morning, 30 minutes before my alarm went off, was stand up and do some chest-opening stretches. And I talked to myself a good bit. I’m probably better at channeling the wisdom of the cosmos at pre-dawn than I am at sunset, for sure.

I think what woke me up was a combination of inferior digestion, new-forming-scar pain, and the usual sort of stressy, nondescript ouchiness that hovers in my upper torso and is best released by doing something. Like stretches.

I would posit that a good percentage of even avowed atheists are not materialists, to the extent that they would never bother tapping into the under/over/through-current of intelligence that seems to pulse through the quantum soup. (If you’ve ever effed it...I mean, it is ineffable after all.)

I am not placing myself among atheists by so positing, but I do find that by default I am somewhat of an a-theist. That is, assuming you take theism to require a discrete other, usually at least partially definable by the guidelines offered in a particular religion. So, it is possible that by not being able to identify a discrete presence as opposed to a generalized connectivity, one is a-theistic.

I sort of agree with the theory that one of the reasons we humans got so heavily invested in religion is that, as critters go, we got a little more intelligent than is good for a fragile psyche. While cats indubitably cast themselves as the point-of-view character in their experience of life, they probably don’t wonder what happens when the story ends.

I’m not sure the concept of mortality is a healthy thing to meta-analyze. By which I mean this: While most of us objectively recognize that we will, in fact, die, it’s comforting to hold oneself as the sort of person [that]* doesn’t happen to, until the time it actually happens. *[neurodegeneration, skin cancer, any cancer, traumatic bone-crushing injuries, etc.]

I do know for certain, and can vouch for this by dint of much personal experience, that doing something (stretches, bricklaying, walking, composing readerless books,) is a vastly more therapeutic coping strategy than lying in bed at 6 a.m. noticing how it can be painful to somaticize your existential uncertainty.

Scars...nothing wrong with looking badazzz.

2011-09-21T09:09:00.001-04:00

As of Monday afternoon’s visit with the dermatological surgeon, I appear to have had a three inch piece of clothesline whip-stitched to my bicep. Only it’s not rope, it’s my skin. This, I am told, is to ensure a better long-term cosmetic result when the scar contracts.

This morning, pre-shower, I removed the original bandage, (which was giving me roughly the arm configuration of Pop-eye,) for the first time. Two extra-wide band-aids seem to provide adequate coverage I discovered, as the ditty “I am stuck on Band-Aids, ‘cause Band-Aid’s stuck on me!” jangled merrily in that part of my brain that just likes to behave that way. The jury’s still out on whether Band-Aid is, in this case, actually stuck on me.

Well, with that patch of traitorous epidermis gone to what is probably a redundant degree, we’ll see whether we carry on with a “chop early and often” approach at my regularly scheduled appointments.

Here, Otis and I are comparing arms. His is, at this point, unscathed.

Should find a fritter shop, really...

2011-09-13T11:36:00.001-04:00

The Baltimore Tea & Coffee Company is not actually in Baltimore. It’s in Annapolis. Right across from the Annapolis Mall (whose real name, which nobody uses, is “Westfield Shopping Towne.” Nobody uses it because Westfield, in this case, isn’t even a place. It’s a Corporation.)

So, if you’re sitting at the counter facing the front window at BT&CC, you enjoy a stunning view of (in this order) parked cars, small trees trying gamely but unsuccessfully to evoke a parklike setting, moderate traffic on Bestgate Road, and the stick-up atrium of the mall parking garage outside Nordstrom. Plus the corner of a red dumpster. Oh wait. Please insert the old guys at a patio table club at the beginning of the list.

BT&CC is #2 in the series of places I’m auditioning for the part of “good place to write.” The first place was the public library. It performed well, except in that you cannot buy a veggie wrap and tea there. It is also possibly true that one is ever so slightly more alluring writing in a coffee shop than in a library. But probably not in my case since the moment the idea of allure even occurs to me I usually spill something.

Jeff is home with Kimberly, who was an hour late this morning due, ostensibly, to an accident and/or gas spill a few miles down the road in Crofton. This morning she wanted to talk about how we might get Jeff to focus. “Focus on what?” I wondered. But it’s something to do with the way he wanders aimlessly around the house moving from his books, to his hand weights, to the bathroom, to nothing in particular. She’s worried that he’ll go outside and take off. (I put some jingle bells on the door to make it more evident if it’s being opened.)

”He doesn’t really focus on anything,” I submitted, not quite clear what sort of response Kimberly was hoping to evoke. “That’s just what he does, and you check with him every so often to see if he’s lost the bathroom or something.” I don’t think that’s what she had in mind, but it occurs to me now she could always show him her shiny black motorcycle, which is parked in the driveway. He’d just like to stare at it for a while, I think. I’m still kind of wishing we were doing daycare instead of home care, but we’ll try this for now. This is the second day of this experiment, and the second day I’ve left the house half-inclined to turn around and say “Nevermind, I’ve got this.”

Guess I won’t do that, for now. Requiring myself to indulge in 12 hours a week of alone time is not harsh treatment, for anyone, and I’ll either a)get used to it with an eventual eye to expanding the time, or b)never get used to it but possibly accomplish a minor thing or two.

And now, it is probably time for me to crack open my well-traveled but too-neglected, page-crumpled notebook which is supposed to remind me of where I left off in writing that book I’m supposed to (by my own supposing, and no one else’s) be writing.

on stuff.

2011-08-30T17:46:00.001-04:00

I’m feeling a sense of calm today that is not fully explainable by the fact that the deprivations of the aftermath of hurricane Irene (living electricity, television, telephone, and internet-free,) seem to have officially ended this afternoon. I think it has more to do with the fact that I’ve once again tackled the basement.

About two years ago I took on the basement in its scarier form—the state it was in as Jeff’s continued collecting of building materials overlapped with his loss of awareness and organizational ability. That was big. This time it’s just about items on which I equivocated at the time, plus two years of entropy.

Even so, it fell into that category of chores you hesitate to take on because they seem daunting. Like most things in that category, once you start it’s not so bad. It’s not so bad. I’ve got a good foothold on the whole of the task, and it will be completed.

Meanwhile, our two downstairs bedrooms are spare and orderly. One is Jeff’s new room. He hasn’t technically moved in yet, but we are using it for changing and showers. The other is the “office,” (formerly the computer room, but now housing only my laptop plus an assortment of business related necessities.) It will also serve as a bed-chamber for sleepover caregivers, as the need arises. I am almost giddy about the relative emptiness of those two rooms, combined with the fact that our lawn mowers, just this afternoon, blew away all of Irene’s leaves and debris, and removed the stack of branches I’d piled up by the silver maple.

I am wondering why this pleases me so very much. Why is a not-so-inherently-tidy person like myself so comforted by the removal of stuff?

Wherever you fall on the clutter-tolerance scale, I am convinced that our habits derive from comfort-seeking behavior. My brother-in-law Fred (who is probably reading this—hi Fred,) likes his stuff. And he would like some more stuff, thank you. In fact, I think his Barbie Dream House would have a huge pink barn (maybe 3) out back, for stuff storage. (Fred might prefer if I rethink this fantasy in a Johnny West ranch doll theme.) Fred cannot believe the stuff I’ve gotten rid of with an almost sacrilegious insouciance. Because I presume that for Fred, having a galvanized, etched, 18th C. cotton gin cog handy when or if you need it is a source of comfort.

My mother-in-law was not dissimilar. She could not keep a barnload of objects as she moved into progressively smaller living quarters, but getting her to part with even a shrimp fork took a pry-bar and perhaps some sleight of hand. Or major distraction.

But I am not comforted by stuff. In fact, if they were looking for volunteers to have all their earthly possessions obliterated (house included) in exchange for a couple of free airline tickets, my hand would go up first. I’m not sure I’ve completely worked out why this is. But I can tell you that too much stuff, in my jurisdiction, makes me feel trapped. The more stuff, the more trapped. I don’t exactly know what I’m trapped in either. Trapped in stuff, I guess.

In the hullaballoo of hurricane Irene, I realized I’d make a terrible survivalist, because I don’t want all those emergency provisions. And that is ok, I don’t mind. If apocalyptic survival is for the most stuff-equipped, I will go first. It’s ok.

Pre-Edisonianism

2011-08-29T11:43:00.002-04:00

I spent the first third of last night in the bathroom, on the floor. No digestive complaints, it was just the only way to get a slight bit of shut-eye while Freddi the dog wigged out over the wind, rain, and lightning of Tropical Storm Irene. For some reason, in the small enclosed tile room she feels less compelled to scratch nervously at the floor—a habit which, when performed next to my side of the bed, is impossible to sleep through. It was not the worst. I had a soft sleeping bag and two pillows, and when I became aware, at some impossibly wee hour, that the storm conditions had eased, I went back to real bed.

It occurred to me that I might go and sleep with her downstairs, where the rug does a better job of muffling her scratching, but I could not imagine how Jeff would cope if he woke to pee at 3 a.m., in the dark, disoriented, and there were no me to provide guidance.

Tonight, Sunday, we’re starting the evening electricity-free, but at least the dog should sleep normally. And I, perhaps, will sleep well, having collected a haystack-sized pile of tree droppings this afternoon, in addition to moving Jeff away from the doorway each time Olivia went out with a load of supplies for her campus townhouse. She left for school this afternoon, missing a fine dinner at Ellen and Fred’s. (Thanks sib and sib-in-law-who-have-electricity, for feeding us.)

If Baltimore Gas & Electric have not fixed us by morning, I am at least more prepared, coffee-wise. Declining to wait at Donut Shack, in the line which was snaking into the parking lot by 7:45 this morning, we instead came home where I scrounged for what remained in the coffee grinder, added one Starbucks Via instant which I found on hand, and concocted a semblance of coffee after boiling water on the Coleman stove. I steeped it in tea infusion baskets right in the mugs. Not bad. Then I made pancakes. Also on the Coleman stove, on the porch. By then I had pretty much ruined the chances of anything remaining good in the fridge or freezer, so all uber-perishables have been discarded and the fridge got a light wipe-down, which it needed.

Now, at 8:30 p.m., my small Eddie Bauer brass oil lamp is flickering away on the mantle, and we are sitting in the living room as a means of staving off bedtime. As a means of staving off wake up. As a means of letting me sleep until 6:30 a.m. Whether or not there will be power by morning is an unknown, but I am now prepared for coffee, with a fresh tin of pre-ground, and a bpa-free, but otherwise less breakable, french press. Because I am exactly the sort of person who would whack a glass french press on the edge of the countertop. I hope Donut Shack is prepared too, but I will once again not be in their line.

August is Augusty. It usually is.

2011-08-23T10:17:00.000-04:00

Sometimes cleaning the “Squirrel-Buster®” bird feeder is about the best thing to do toward the end of a month that has steadily pushed you into a murky corner of existential nihilism. 15 minutes ago I could say that better, but then I went off and left my computer and came back to find a string of nonsense characters instead of the well-crafted first two paragraphs of an unsaved document. There was no retrieving it. I did not see a cat nearby. I have no explanation, but that’s the sort of life that, at its worst, feeds the above-referenced existential nihilism.

It is no wonder that the bird feeder needed, for the first time in a year point five, a thorough cleaning. Perky green domed roof or not, it would be a rare feeder which could withstand the monsoon which has pummeled the Mid-Atlantic in the past week and a half. Chickadees could only get to the occasional millet seed which filtered through the gluey glom of fused sunflower hulls. The feeder is drying in the basement. I’m letting my little inner bad philosopher diffuse on the front porch.

Fall, the season when everything dies, might be just the non-contrary counterpoint that will keep my mood and bird feeders unclogged. Because here’s a brief synopsis: I live with dying things. My dog is twelve and has bad legs. My old cat is in remission from a fibrosarcoma which almost promises to return. My other old cat is on palliative treatment wherein she gets as many bad-for-you steroid shots as she needs to keep her crazy itchy self comfortable. My life partner is experiencing some disturbing downsteps in his tango with the long goodbye. And yesterday, instead of the usual postcard stating that the spot the dermatologist sliced off during a recent “body check” was no big deal, I got a voicemail. You just don’t want voicemails when you expected a postcard.

I thought having green skin was my get out of jail (or serious dermatological trouble) free card. Only pink people are supposed to have this stuff. But, wouldn’t you know it, my olive-complected ancestors apparently dropped the ball on this one and it was snagged by my sun-vulnerable Nordic stock. Thanks Eric the Red, I owe you one. The freaky thing is that the melanoma-in-situ just zapped off my right arm did not appear all ugly and alien and dark like the pictures they show you on Google. It was merely one more splotch in the multi-splotch of freckly pigment I am pretty much covered with. It only looked slightly splotchier, and that’s what got my attention. I guess that probably suggests a comforting superficiality, but it also reinforces that the dermatologist will now be one of my best and most regularly visited friends so that any future attempts by my skin to turn against me can likewise be nipped in the easily-removable bud.

So, it turns out mortality is the rule around here, whether you are a mammal or a bird feeder. However, I still have some furniture to move so I’m going inside now. Gabe is giving up his downstairs bedroom to the call of one-level caregiving. I will figure out where to reinstall him later, before he comes home for Fall break.

tired? yes.

2011-08-20T20:39:00.001-04:00

Tonight—5th floor of the O Henry hotel, Greensboro, NC. Different side, different view of office buildings and minor highways from our last stay. Jeff seems to be deriving some enjoyment from gazing out at the twilight panorama, and that’s a pretty good deal for someone who’s required me to reorient him to what, why and where at least three times today.

I am somewhat tickled by the geeky mix of completely un-preppy dweeby types I’ve seen milling around in our return to Greensboro. Of course where I saw the most was near our dinner locale which happens to be a strip of funky dives surrounded by the UNC Greensboro campus, but I trust that the general vibe of oddball kids extends to Guilford, a couple miles or so down the road, as well. Gabe was a fan of any place that offers numerous varieties of tea drinks including chocolate-banana, green apple, and mango bango. (In addition to udon noodle soup.)

Ok, that was Wednesday night. Tonight, as in when I’m typing right now, is Saturday night. We got back from Greensboro on Thursday night, after getting Gabe unloaded into his dorm (Binford Hall, conveniently located a few steps from the IT Building where I hope he can work out how to print his schoolwork, since I did not leave him equipped with a printer to jam all up.) But tonight, Saturday night, I’m about as tired as the old toothbrush I’ve been using to clean sink drains. I guess I should be over the two consecutive days of 6.5 hour drives, but I may not quite be over the caffeine gum I chewed and the strong iced coffee I got at the Charlottesville Whole Foods Market. Nor have I figured out how to process the critical threshold we seem to have crossed which has taken Jeff from being sort of a manageable extra pet to keep an eye on, to being an energy draining appendage. Jeff likes to ask everyone he sees on a college campus where they're from. It's just that now he has absolutely no discernment as to when to use the question and on whom. So he's apt to ask the Public Safety ladies lining the stairway into Binford Hall, as 3 dads and 2 kids are trying to go opposite directions carrying boxes and refrigerators. Or he asks the SunTrust guy who's trying to set up student checking accounts. I know, it's not quite as weird as last night when he told my bedside lamp goodnight, but it's one of many forms of mischief I need to keep him out of. Well, so I’m tired.

So tomorrow, after I finish cutting 600 or so tickets for the Concert Association, I will maybe start transforming Gabe’s room into Jeff’s room. Because here’s what I’m telling myself: I’m telling myself that I will begin the process of arranging for help two days a week after I get at least the downstairs sorted out, bedroom-wise.

plants and ants and trees and seas...

2011-08-09T18:08:00.001-04:00

I am so due to write a Fisher Center blogpost. But too busy to formulate and sustain a thesis. So I’ll just ad lib here instead.

Today, at 1:33pm, when Jeff had just gotten up from a nap, he made a request that went something like this: Can I have a...drink...something to drink? At this point I try to ascertain whether he wanted orange juice, coffee or exactly what. No...not that...this is ridiculous...that stuff...I have it once a day...it’s a drink...Chardonnay!

This, actually, is something of an edited version of the actual conversation which at the time seemed pretty protracted, but I’ve typed enough ellipses. It’s just one of those markable moments. Not brand new really—I’ve been observing an increase the difficulty he has articulating thoughts for a couple months, but this one was marked. And also it highlighted the fact that he often has no clue as to time of day, since he is disinclined to request his glass of wine prior to 5pm.

Well, there you go, that’s what happens. I sometimes view the creep of Alzheimer’s dysfunction like a fog, rolling ever so slowly into new segments of the brain, trackable by external symptoms.

Meanwhile, I’m trying to put in a few months, or perhaps a few years, of being a grown up. Finally, perhaps. This is measurable by the fact that my yard looks groomed, a dead tree is down, and I am fully engaged in the hiring and management of an assortment of contractors. This might mean I can put my house on the market in the interest of switching to a lower-maintenance dwelling, or it might just mean I’m tired of feeling out of control and I’m just taking charge, money be damned. But you really can’t keep damning money, which takes us back to the lower-maintenance dwelling. When? Not sure. Check back. Never is one of the possibilities, but not the one I expect.

Our week at the Outer Banks of North Carolina was a fine one. Several days of gentle, navigable surf, and tolerable heat. Nice family too. It’s annual, and another one of those events that differs enough from the usual day to day life that you can use it to note the changes in a person who’s losing ground.

Last year Jeff went in the waves. Not for long, and I stayed with him, but I was not fearful that he would fall down. Big change in 12 months. Last week, a swoosh of foamy surf around his ankles would cause him to topple forward, and the one time I took him waist deep on a very gentle day he was quite discombobulated. I held him up and led him out. Katherine and I observed the obvious hazard on our last two beach days, when the waves were rolling in at random choppy angles. I could not let go of him in ankle deep water, as it quickly morphed to knee deep water, and we had zero confidence that Jeff would be able to stand up once he toppled.

I resorted to the method of beach-going my grandmother enjoyed in her declining years. I seated Jeff in a low-slung chair, just where the waves rolled ashore, so he could feel them but be in no danger of falling. He was happy.

frascati. It's Italian.

2011-07-19T19:27:00.002-04:00

I really hate losing my mind. I wouldn’t do it if it seemed like I had a choice, but I probably don’t. I almost forgot to give the dog her evening snack for two days in a row, but each time caught a glimpse of her making her pathetic face and remembered, finally. Luckily, someone here has a brain.

Oh, the other thing is I’m getting Parkinson’s.* I might as well, my dad died of it and I’m all gangly like him, but weirder. Usually my clumsiness is worse in the morning when I’ve gone back to the coffeepot a few too many times. Caffeine jitters you say? Ok, maybe. That and the fact that my wiring and physical coordination have never exactly been state of the art could explain a few things, but I might as well have dementia and Parkinson’s because it seems neurological disorders are pretty much destiny around here.

Oh, and one more thing: Why are some people J.K. Rowling, and other people are not?

Something I am forced to wonder about is whether if you released J.K. Rowling into the Anne Arundel Medical Center complex of hospital and clinical buildings, would she be able to find her way from Parking Garage B to the office of the Greater Annapolis Medical Group? I actually did succeed in doing that today: It was down one ramp, through a door, past a barrier that indicated “don’t go this way,” down a stairway, across an outdoor place where people in cute scrubs go to smoke, in another doorway, down a hall, up a staircase, and around the corner. While it is possible that I have the worst sense of direction ever, I did that in both forward and reverse this afternoon, by paying careful attention. And giving Jeff verbal directionals. (“now we turn right,” “U-turn,” “up a curb!”)

I’m probably just mad because I’ve reached the final two stages (#s 21 and 22,) of Legend of Zelda: Twilight Princess, and I’ve realized—I don’t want to hit anything else with a sword, I stink at games like this in general, and I especially stink at this part. I’m inclined to force Gabe to complete the thing while I watch, just to achieve a sense of closure.

I will turn 50 at the end of this year. When I’m done being 50 I’m either going to laugh at myself or laugh at myself. I just hope I do it in a nice way, and laugh with me, not at me.

*not really, as far as I know. coffee, in fact, is thought to help.

They look good on me.

2011-07-19T16:28:00.000-04:00

Today, when we stopped at the library, my sunglasses decided to surprise me by divesting themselves of the screw that holds the right earpiece to the frames. Still, I was able to manage for the next two legs of the drive by balancing them on my nose and one ear. “They look good on you,” said Jeff, who recalls that I recently got a new pair of glasses, and wished to comment in a helpful way. “Thanks,” I said. “They’re old and broken.”

I grabbed my not-so-trusty eyeglass repair kit (the one that comes with a small assortment of screws, none of which fit any known spectacles,) and we trundled off to lunch, me with the notion that I could fiddle with this project while we awaited food.

I don’t know why I thought that. I know I can’t do tiny work without magnifier glasses on, so I stashed the parts in a pocket of my backpack until we got home. Then I organized my tools. 1 tiny screwdriver, 7 worthless screws + the original which fell out, 1 pair of needlenose pliers, and the sunglasses, in two parts. Oh, yes, and my zebra-striped, supermarket +1.50 magnifiers, which I put on. “They look good on you,” said Jeff. “Thanks,” I said. “They’re just the magnifiers I bought at Whole Foods.”

After numerous false starts and a variety of attempts at ways not to drop the screw while finding an available set of opposable digits with which I could begin to screw it into place I did succeed in replacing the original screw. Otherwise it would have been Peeper’s Family Eyecare tomorrow. Where I get all my prescription glasses including my new set of progressives. Which, as it happens, Jeff thinks look good on me.

What will Terry do?

2011-07-14T15:01:00.001-04:00

Last night I stayed up way past my bedtime (until 11:00pm, that is,) because I was watching a film made by Terry Pratchett on assisted suicide. It is called Choosing to Die, and it documents Sir Terry’s visits to a Swiss facility, run by an organization called “Dignitas,” which provides the space, screening, guidance, and medications involved. Also, he interviews two terminally impaired people choosing that exit strategy, and their loved ones.

Terry Pratchett (in case you’ve never read any Discworld, or Wee Free Men books,) is an English fantasy novelist who is contemplating the Dignitas option himself as a way to escape from the otherwise inevitable endgame of his posterior cortical atrophy.

Although I’ve known of Pratchett and his diagnosis for some time, this film was the first time I’d seen him in action, and I was struck by the amount of insight he seems to retain into realizing the scope of his illness-induced limitations. Sir Terry can no longer type, and he knows it. Instead he relies on his assistant to take dictation. Also, that he is able to conceive of and carry out the making of a documentary, and interview the people involved cogently and without seeming to lose the thread is evidence that Jeff has tumbled a good many steps below Terry, off the staggered cliffs of Alzheimer’s. Jeff could not determine the steps necessary to contact Dignitas. He could not understand why he’d even want to contact them. And these very factors bespeak a cognitive condition which would, in and off itself, disqualify him from the program.

I wonder, in a moot point sort of way, what I would think if Jeff were of sound enough mind to choose the Swiss option (which is, as I understand it, also available in Belgium.) I believe that I would be like the wife of the man in the film who is suffering from a degenerative motor neuron disorder and have to be supportive and cooperative. That said, I admit that we almost have to start with a reflexive reaction that says “What? No way! I’m not getting involved with that!” This is partly because you in no way wish to be complicit in someone’s death. Unless it’s yours, and it’s you choosing. Because there are not too many folks who’ve watched a partner fade into Alzheimer’s and not considered that—were it they—they’d want a way out. Short, sweet, quick. This is why I would have to go along. What if you wanted that option and everyone stood in your way, and told you you couldn’t...that you had no choice but to degenerate into fetal, mindless helplessness?

Lately I’ve been thinking about Jeff, and what he would have wanted. What would he have thought, as a hearty active 45 year old, of his life at 63? The existing Jeff does not meta-analyze. He doesn’t think about the fact that he can’t drive, put his pants on, wield a tool, have a conversation. It is one of the dubious “gifts” of Alzheimer’s that it often protects its sufferers from understanding what kind of condition they’re in. I know what he would have said. He would have wanted out. He would’ve said “no way.” It does me no good to know that. I have to deal with who he is now.

Well, this is why it’s “assisted suicide,” not euthanasia. When we euthanize a sick pet, we are choosing. When a human wants an escape route, he/she must be able to carry out the definitive steps him/herself, up to the final action of swallowing the potion. So, like most Alzheimer spouses, I’ll be on the boat ‘til it runs out of gas.

I wonder what Terry Pratchett will do? He acknowledges that, with AD, it’s tricky. He still enjoys life. He wants to keep writing, even by dictation. He feels that when he can no longer dictate a story, that’ll be the time. But will he still then be competent? Like the younger man in the documentary, who chose to go before his multiple sclerosis rendered him unable to take action, Sir Terry recognizes that he will likely have to decide before he’s really ready, and waiting too long is a choice by default.

tired.

2011-07-08T20:05:00.000-04:00

Jeff does not need to be wearing Gabe’s shoes, but he put them on anyway.

Where are you going in Gabe’s shoes? I ask. Because we’re pretty much encamped here in the O.Henry Hotel, Greensboro, NC, for the evening.

Jeff chuckles, sort of. No wonder they didn’t fit right, he says. Then he takes them off and starts rummaging around for his loafers.

Where do you wanna go? I ask.

Jeff asks when we’re going home and I tell him tomorrow, after breakfast. I’m too tired to drive home tonight. And even if we wanted Gabe to drive, he didn’t bring his wallet and license. I told Gabe that he is an adult now and really needs to bring his i.d. with him almost any time he leaves home. He shrugged, ok. Luckily, at a small college like Guilford, where he oriented today, they believed he is who he said he is, and he got his college card i.d. photo taken, and his “quantitative literacy” placement exam completed, all without needing to prove his personhood.

Today was too much for Jeff, there was no doubt. Not that we did much. We had complimentary breakfast buffet, then hied ourselves to the Guilford gymnasium for orientation check in. We sat through some panel talks, walked around the campus a bit (yes, it was steamy...thank goodness for trees,) ate some dining hall lunch, and waited for Gabe to complete his math test. But it was clear, by early afternoon, that Jeff was spinning in circles every time I took his arm as a substitute for a temper tantrum, before faltering into the hunched, glaze-faced shuffle that characterizes Alzheimer victims who are typically more degenerated than he.

I take Jeff on outings almost every day. Usually to Punk’s Backyard Grill or similar for lunch, with a detour for restocking orange juice and bagels. He likes it. I’ve wondered if such simple adventures are enough. Answer: They are.

He will be happier at home the next time I take a road trip. He will be happier at home with me at home, but that’s asking too much. When we got back to the O.Henry this afternoon, I studied the ads for our local “AngelCare Network,” and “Home Instead Senior Care.” I was looking for, and found, the magic words “respite care.” Yes, I hear stories. And yes, I know that you don’t always get just the right fit with home-care helpers, at least not at first. And I honestly swear I don’t know how they make sure the bases are covered if you leave your person home with hired help for 48 or 72 or 96 hours. But I’ll be talking to them. This week, I think. We move Gabe in on August 18. I don’t know whether I’ll take Jeff or not.

coffee not a l'orange.

2011-06-30T07:32:00.002-04:00

Ok. When someone is holding a mini cup of free coffee from Trader Joe’s courtesy counter is not the time to ask him to look at a Gala apple so as to ascertain whether it is this kind of apple which he wants. There is a chance that even when you point out that the coffee is now trickling onto the floor of the produce aisle, he will still be so fixated on the apple that he cannot remember how to right a cup. If this should happen, you will be glad that Trader Joe also keeps a healthy stash of paper napkins near the coffee. That way you don’t have to tell anyone there’s a puddle of coffee on the floor. You can just soak it up.

Trader Joe is a funny place to shop anyway. They have carts—both the older drab looking ones and the newer shiny red ones (you usually try to get a shiny one if you have an easy choice,) but on a typical day you can’t count on being able to push your cart very far without ending up in a bumper car knot with three other cart-pushers. So it’s easier if you park it at an end cap, in front of the mini biscottis, get Jeff to hold the handle as if it’s a very important job, and run down the frozen aisle on foot to grab some fettucini alfredo.

As it is not a large store, soon you will be finished and have everything you need except for the orange juice you came in for, but forgot. There’s a great deal on the sunscreen spray, located in blue canisters in a bucket at the end of each check out line. You will forget to buy one of those too.

It is probable...

2011-06-25T21:32:00.000-04:00

It is probable that I just need to find the guts to hire help, rather than running away.

oh, this makes sense! (∧_∧)

2011-06-25T10:14:00.001-04:00

I’m going to try to explain my itch to move out of the house where I’ve lived for 25 years.

10 years ago I would not have viewed uprootedness as preferable to rootedness. But 10 years ago I was a partnered version of myself, which was a me with a fundamentally different set of comforts and discomforts, assumptions, and wishes. And self-image. Apologies for bringing notions as navel-gazy as self-image into things, but it’s hard to avoid. As a partnered person I was happy to embrace “the old homestead.” As a not-partnered person (terms perhaps best understood by AD spouses...yes, I realize I’m still married,) I am not so happy with the same house forever thing.

There is an effect caused by becoming an AD spouse unusually early which I feel in spades. That is (and I know I’ve mentioned it before,) a sensation that you’ve been fast-forwarded past a part of your life which "should" be rather rich and fulfilling into the life of an 80 year old person. Again, no offense intended toward 80 year olds who should, in my estimate, be striving for rich and fulfilling lives, but I sure expected a different character to my 40s than I got, and staying...now and forever...in the old homestead makes me think this: It makes me feel like all the elderly widowed ladies who have ever lived on our streets, staying as fixtures in their old homes until they disappeared. Not that there’s anything wrong with that, ok? It’s a psychological problem for me though, see. I feel like I’m entering the golden years disappearing act before even turning 50.

Part #2. I don’t like maintenance. It scares me. I don’t like the idea of maintenance. That unsettles me even more. I would like to plant about 4 or 5 shrubs in a little back garden that the cat could sit in. (Ok...how is this different from moldering in place here? Good question. Maybe it’s not. But uprooting myself shows, for a minute, that I’m still alive.)

Part #3. I might, for all we know, be caregiving for decades to come. Well, probably not more than 2, but you cannot make assumptions about these things, and it is not useful to play “when and if” games, so you might as well structure your life in a way that attempts to provide serotonin-stimulation to your brain.

I realize that everything I’m talking about is a “way of looking at things,” and that, in theory, it is sometimes better to change an attitude than to make a physical change. I do not disagree. But physical changes can be fine too.

Oh, wait...I'm not quite done yet. I expect an objection along the lines of how extraordinary my house is, and how much personalization and hand-crafted work it contains. This is true. But, to imply that these features should somehow require me to stay here actually has the effect of making me feel more stuck than I would if there were no such compelling ties. Yes, it's wonderful and lovely. But that doesn't mean I have to keep it forever.

kissing coffeecups.

2011-06-24T21:36:00.003-04:00

I can’t remember what Jeff was trying to tell Olivia’s lemon cake the other day. I do remember that Olivia was working somewhere else, the sink perhaps, and asked Jeff to please not hover over the two fresh out of the oven layers which were cooling on the butcher block. Because at first glance, that’s what you might have thought he was doing—inhaling their lemony aroma. At second glance it was clear that that was not his intent. He was speaking to them because he thought they were Olivia.

The truth, possibly subjective, is that Olivia looks even less like a lemon cake than Becca looks like a cat, and I’ve already mentioned the time that Jeff was asking Becca a question while posing it directly at the cat in the chair beside him. But such, apparently, are some of the quirky dysfunctions of a brain with an atrophied posterior cortex.

Sometimes Jeff likes to give us (as in me or his children) a kiss. A few days ago, as Olivia left for work at the hardware store while toting her morning mug of coffee, Jeff leaned over and gave the coffeecup a goodbye kiss. He frequently aims for my shoulder. I don’t know why. It doesn’t look much like a coffeecup.

Bag it all.

2011-06-20T15:19:00.002-04:00

The thing is, I never really had a concept of myself as a particularly tidy person. And in fact I am probably not particularly tidy. In my nuclear family of origin, I may have ranked 5th out of 5 in terms of neatness, or it may just be that I’m comparing myself in an out-of-proportion way to a sister who had her awards neatly pinned in a line, her bed made daily, and her closet negotiable, whereas my room tended more toward being a victim of entropy.

Still, there existed a critical threshold of disorder at which I’d be distracted enough to mount a thorough cleaning initiative. Then, I’d spend a day or two strolling into my room and thinking how nice before entropy would gain another foothold.

I seem to have spawned at least a couple or so kids who don’t have that built-in threshold tripping their straightening instinct (those who do have such a thing may protest below.) Instead, piles of discarded garments, strewn in random fashion, do NOT cause them any apparent consternation, nor does a bathroom countertop cluttered liberally with empty face-wash tubes, smudges of toothpaste and other goo, and clothing tags which have been cleft from new items only to become decoupaged, by soap and shampoo, to the sink or its environs.

Their stuff tries to grow. As stuff goes, their stuff has a real empire-building inclination and tries, not infrequently, to assert squatters’ rights in the kitchen and entryway. I beat it back, with greater or lesser gusto depending on mood, but hold my turf all in all, leaving their bedrooms to roil like Calcutta on a busy day. Or at least that’s what I presume happens when no one’s looking, given the seemingly random distribution of objects.

I can’t remember where I was going with this. Oh, right...my attempt to help. At present, in the upstairs hallway, (the one with eight or so paint swatches on the wall, waiting—years—for me to hire a painter...we all have our issues,) I’ve taped two signs to the perpendicular walls of a corner. One says “give away,” and the other says “throw away.” Conveniently located nearby sits a box of jumbo sized black garbage bags for filling. So far, at least somebody has taken a little advantage and produced a few bags which I’ve helpfully carted to the Goodwill truck or dumpster.

It is my hope that by encouraging this de-clogging of space, I will be able to re-purpose certain bedrooms at the time it becomes necessary (for reasons such as stair hazard,) and move certain people who now reside upstairs, downstairs.

Pic: Lonely corner says “please feed me.” The picture hides the electrical box, and don’t even mention the paint swatches. Thanks.

NIHing.

2011-06-16T21:56:00.003-04:00

4th Floor, Clinical Center, National Institutes of Health. I am parked in the waiting area, outside conference room 4C304, where Jeff is answering some test questions for Dr. Snow, the neuropsychologist. At least I presume he is answering the questions in some fashion. The last time Jeff participated in this form of testing was in 2007 at Johns Hopkins, and the results served as one of the the bases for our Alzheimer’s diagnosis. (Even though the neuropsych part itself suggested a variant which, we’ve come to realize, was the more accurate track.)

Among the things I’m sure of in life is that Jeff isn’t going to perform swimmingly on this testing today and tomorrow. Another thing I’m sure of is that he’ll be glad to have it over and done with at the end of tomorrow’s session. On the plus side, the results, combined with the two scans we’re scheduled to complete today—one an MRI, the other a PIB PET scan which highlights amyloid plaque deposits—will (I hope) provide us (as in me) with a good working understanding of Jeff’s precise species of difficulty, the relative slope of his progression, and a prognostication derived from those elements. In return, NIH gets another set of data to apply to current and future research. Oh yes, and I get a small helping of caregiver guilt, stemming from the fact (which became obvious once we jumped into this study) that Jeff has had enough of this nonsense. That we’ll be finished tomorrow is what keeps my engine pulling us over this one hill.

To my right, a blondish kid who looks like a linebacker for the peewee football league is playing around with the waiting room computer. Directly in front of me sits a bin for commingled recyclables. (nice going NIH.) To my left, a print on the wall called “Still Life with Otis.” Actually, it’s probably not called that, and Otis does not even appear in the picture, but the tablecloth is pulled so askew that I’m almost certain he’s been there.

Dr. Kreisl just popped by with the room service menu so I can make us a lunch selection. Thing is, I’d rather just skip the hospital food and eat the apples I brought (we had a big breakfast,) but I have a weird neurosis about not telling people “no. I don’t want it.” So I picked a tuna salad sandwich and some chips and orange juice. We will be happy to share.

try not to breathe this...

2011-06-12T15:52:00.000-04:00

I got Jeff to talk a little bit about his days as a furniture refinisher. We were in the car, and sometimes that is the easiest place for insights or trapped memories to emerge from the cognitive nerve tangles.

He couldn’t tell me much—that he and his brother had done work for a dealer when they were in high school or college, that they’d worked on maybe 20 or 30 pieces, and that they’d done so with no precautions and in unventilated conditions. I heard the story in better detail in years past. Then he said “methyl chloride.”

”Methyl chloride?” I repeated. “Is that what the stripper was made of?” Yes. Google methyl chloride and you will find that its more common name these days is chloromethane. It has been used as a refrigerant, a solvent, and an herbicide, but now occurs primarily in industrial chemical processes. It also turns out that it has been deemed sufficiently toxic as to be no longer available in consumer products.

I cannot help but wonder if youthful exposure to a neurotoxin might be just the thing to set a brain up for the decades-long process that results in Alzheimer’s and its variants. Especially in light of my dad’s death from Parkinson’s disease. Dad speculated, after his diagnosis, that perhaps his neurodegeneration was launched in his teen years—when he heaved chemicals out of crop-dusting planes in rural Virginia. Herbicide again. I wonder if it was chloromethane? Not that there aren’t, undoubtedly, dozens of other contenders for things which you shouldn’t spend your youth enveloped in a cloud of.

I’m not trying to be falsely scientific. I can’t know what triggered either of their cases, but my personal hypothesis is that this early chemical buffeting is a strong possibility

Miss Nancy

2011-06-10T18:56:00.002-04:00

Today, I am speaking like Miss Nancy from Romper Room. Actually, I probably speak like Miss Nancy rather often these days. I am going down (pause) stairs. If you want to watch t.v. with me later, you should come downstairs too! (smile)

The truth is though, you want to run Miss Nancy over with a truck, even if she’s the easiest person for you to understand. My human guidance system, meanwhile, is almost totally hands-on these days. Sometimes I take peoples’ hand. Sometimes an elbow or arm. Sometimes this is not a welcome bit of help. Like today, when we got out of the car at the hardware store. Jerked that arm right free. Sometime it is clear when you’re not being given full clearance as “competent human.”

I don’t want to be Miss Nancy or a jerk, so I think I am tiring of taking the class on excursions. Any place. Because verbal directions are about as useful as guiding a missile with chopsticks. This is not safe in parking lots. This isn’t really too safe anywhere that isn’t a wide open field. Anyway, I am bored with being Miss Nancy. I don’t even like her very much.

so rewarding

2011-06-09T22:05:00.000-04:00

Last Spring I agreed to something called BGE “Peak Rewards.” This is something our gas and electric utility company promotes as a means of saving energy and garnering a few credits toward your monthly bill.

A technician fiddled around with our compressors behind the house after I signed up, and now they each have an odd little box riding shotgun, which sometimes shows a green light, but might—during the time we’re “cycled” to save energy—have a red light also.

This afternoon I didn’t have to call a repair company to tell ‘em our ac is broken, because I already tried that during a heat spell last summer, and they suggested I look at my Peak Rewards box. It had its red light on. Still, as the temp in our bedroom climbed into the 80s earlier today, it took me a few seconds to think of the reason. Woohoo. Peak rewards.

I did a little Googling later, to see how much evidence I could track down about how many people love it or hate it. Surprisingly, some think it’s dandy. They seem to be people who spend their days at the office, and come home to find that their cycling time has ended and the air’s kicked back to not-swelter. So it’s probably a combination of our Frank Lloyd Wright (the early years) cathedral ceilings upstairs hanging onto a batch of hotness, then releasing it to envelope the furniture when the ac let’s up a bit, PLUS the fact that we’re not usually out of the house when they cycle us that leads to my conclusion that this isn’t the deal for us.

For some reason I just decided to put up with it last summer. I think I don’t want to anymore. Tomorrow I must call BGE and request that they cease to reward us in such a manner as this, peak or no peak. Will they remove their boxes, or have we been irreversibly assimilated by the Borg?

The Porch

2011-06-07T18:53:00.000-04:00

Outside is usually Jeff’s domain. Not that I’m never there—I must traverse the yard to get to my car, and I am responsible for any exterior maintenance that happens. Mostly, these days, that’s feeding birds and controlling insects. I’m just not big into trying to turn a suburban plot of ⅓ acre into the kind of masterpiece some folks value. And we’ve got too many shade trees to grow veggies, which might strike me as a worthwhile enterprise.

But Jeff, in the state of “can’t really do anything-ness” in which he exists these days, finds wandering about the yard a nice change from wandering about the house, and I can’t blame him on a day like today.

For the moment, I have toted my mini-Mac and my phone (so as to get updates from Olivia, if she’s detained at work) to the front porch, and the temperature (probably about 75℉ right here) and light breeze are the perfect accompaniment to one of those green rocking chairs I spend a summer trying to find and now don’t use nearly often enough.

Now I’m thinking of that first trio of rockers, ordered from L.L. Bean, which came “ready to assemble,” but wouldn’t go together no way, no how. I tried two of the three before requesting to return them. (One in partially glued together condition. That took a special box.) Shortly thereafter, those particular rockers disappeared from the Bean catalog, never to be seen again. Not surprising. I’ve often wondered whether if a passingly handy person like me couldn’t do it, could anyone? Later I ordered these ones (one of which I’m now sitting in) from a furniture company in North Carolina, and put them together with no trouble.

Anyway, the tulip poplar right in front of me is so enormous that it blocks about a quarter of my view to the road, but I can’t complain about its shade. (I can complain about the branch its sister dropped on my car in February though.)

But look—there’s Olivia’s car pulling up

(see? I see it.) Gotta skedaddle. Lunch and groceries to do.

And the Most Likely to Fall off a Cliff Award goes to...

2011-05-30T16:04:00.001-04:00

I don’t know whether this is good for my brain or not.

Having exhausted my tolerance for the tedious portions of Epic Mickey (despite a continued impulsive inclination to be making Mickey jump gaps and pop spores,) I’m trying to move on. Arguably, I don’t have time to play video games. Equally arguably, I don’t care during my present life interlude. Escapism has its place.

So, based on a recommendation from someone named Nick, whom I don’t know, I’m trying The Legend of Zelda: Twilight Princess. We had it anyway. No waste.

With Epic Mickey, I had a little something on Gabe, since I was partway through my third play-through by the time his semester ended and he got home from Connecticut. That he pretty much lapped me from that point notwithstanding, I could still point out a thing or two, such as—where you can find robo-Goofy’s body parts, or whether it’s a bad idea to smash the pipe organ.

Zelda is a different story altogether. I’ve made it through the so-called Prologue on dumb luck and uncoordinated random shaking of the wii-mote and nunchuk, and arrived at a point where which button you push when begins to make a difference in whether you can proceed through the various battles or not.

Gabe likes to watch, if he catches me playing the game. I was stuck, knowing that I needed to retrieve an explosive spider-pod and heave it at a carnivorous plant, but failing utterly to execute the task. Here’s what could be overheard:

Turn around! Where? There! Over the gap! There’s a gap? Yes! That’s a gap! (at this point I make Link fall into the gap and lose health points.) No! Block that with your shield! You mean the Z button? Yes, lock on! Like this? No! That’s “item of interest”...don’t do that, just lock on! Don’t let it bite you!

Etc. You get the idea. By the time he’d coached me through saving the remaining two captive monkeys, he said “this is really strenuous...for me.”

I could see that it was, and pointed out the parallel that popped naturally into my head. “Okay,” I said. “NOW you know what it was like, teaching you to drive.” Because it was. Just like that. He laughed.

Then I was at the part where I had to knock a baboon off a perch and give it a good spanking while snapping, toothy, venus-fly heads lunged periodically. Perhaps I will begin to grasp the various 24 or so different buttons one can deploy on a set of wii controls. Perhaps not. At any rate, I broke the cardinal rule of gaming, handed the remote to Gabe, and said “here, you do it.” He did it. So, I got the boomerang I was supposed to snag next, and will move on from there with a hopelessly inadequate skill set.

I got the hang of Mickey, more or less, but this Link kid I’m operating in Zelda just has a few too many modi operandi for me to suppose that the hand-eye skills of someone who can’t even play whack-a-mole are going to get me through. And I still don’t know whether it’s good for my brain.

Say "cheese," brain.

2011-05-20T17:16:00.001-04:00

We have a bad habit of coming to NIH and having things gum up. A couple weeks ago, on our last visit, an MRI was scheduled. Jeff has had at least four MRIs over the course of being diagnosed and serving as a vaccine study participant. Maybe five. But when I let slip that he got a bit of sterling silver installed in his ear 40 years ago for otosclerosis damage repair, and it turned out that NIH machines exude at least twice the magnetism of Georgetown machines, and after A called B, and B called C, and C called D, before D finally got back to A, our MRI was scratched in favor of a low-magnetism version next month. Instead that day, our major accomplishment was a second round of “convince the social work people we’re willing participants,” and sign some stuff. Which in itself is no small step.

Today, our final two PET scans were on the books. Yay, I was thinking. We’ll get all the scanny stuff, and all the related IV sticks out of the way in just one day, so we can finish up in June, wireless and drip-lineless.

No dice. All set, all stabbed, all peed and ready to go for scan one, it came to pass that the wizards who brew up radioactive injectable #1 had produced an inadequate quantity, thus tanking phase one of today’s 2 phase ordeal. So we are dozing in a chair, awaiting the passage of enough time that we can undergo what was to be scan #2 with a suitably empty stomach. Apparently injectable #2 is ready and waiting, and we’ll have accomplished ½ of what we were scheduled for.

Now the missing MRI and the missing scan are to be caboosed to days #1 and #2 of the neuropsych testing in June, and those, therefore, will be more exhausting days than we’d wished. Still, science ho! I presume our contribution will proceed as rescheduled, and we can officially retire from clinical research.

Because, frankly, I perceive our interest level and understanding of what we’re up to to be flagging like an untrained XC runner on the home stretch, so I’d counted on the easiest of final visits. It’s okay. I can be the Little Engine that Could, and get our circus train over that hill in June. It’s just that I’m starting to feel a little bit like a blue meanie, herding a volunteer who has no volition himself, but simply trusts me.

p.s. Scan #1, which was meant to be scan #2, is happening as I type. I sit here, watch the timer, and hope Jeff remembers to hold still so we don’t add any monkey wrenches to the tool clutter. Next: food.

beds.

2011-05-14T18:17:00.000-04:00

Assembling a bed should not wear me out. I blame my energy-depleted state on the nuisance of disassembling the old bed. Leave old iron brackets and 100 year old wood parts in place for a few years, and they just aren’t interested in budging without the persuasion of a rubber mallet.

But see—I did it. There’s the place where the bed used to be, now looking refreshingly blank, but not too cozy as a bedtime destination.

I’ve got a bit of trim to patch up on the antique full-size bed before it takes up its new home in Becca’s room.

My new queen-size bed is one I’ve admired for maybe 20 years, ever since I saw Bradford Woodworking’s booth at the American Craft Council show in Baltimore. It arrived in 5 hefty boxes, all of which were long and skinny except the one containing the headboard. Here are the first four pieces I put together. They’re joined by some rather hefty bronze bolts and barrel nuts, and I’m pretty comfortable that nothing will budge.

At a certain point in the instruction sheet, a helper is said to be required. I normally skip ferreting out a helper unless I’m truly desperate, finding that objects such as laundry baskets often serve nicely to hold parts in place while you fasten the various connecting hardware.

Still, I did not completely forego conscripting other people. To haul the mattress and box spring out of the hall and onto the frame I dragged Gabe and his friend Matt away from Portal 2 (on PS3) to do some lifting. Here’s the whole thing, all done.

I had already moved the wall sconce over a few inches (as far as I could without getting into things like junction boxes which are out of my comfort zone.) If you are a sharp observer you might notice that I also switched the two bedside tables, to gain a bit of space between the table and the bathroom door. Oh yes...there’s the rubber mallet too. A useful friend on many occasions.

So now I’ve made a report. Mundane? Ok, no argument. But just posting something will, I hope, free my mind to write my next Fisher blog.

sipping with the enemy

2011-04-30T17:59:00.004-04:00

Sigh. An act of simple self-indulgence can be such a complicated thing.

Unlike Dr. Horrible, I never set out to join the Evil League of Evil, it just sort of happened.

Part 1 went like this:

Last week we (me, Jeff, Mom,) spent four nights at the Good Medicine Lodge in Whitefish, Montana. It was charming, comfortable, friendly, and had cookies available at all times. But not just cookies. There, on the sideboard where one could indulge in a variety of teas and raw veggies, was a nifty little thing called a Nespresso, which—using capsules resembling mini versions of Keurig cups, or maybe chocolate covered cherries—would make a quick and delicious cup of espresso or lungo right on demand. And in any of several varieties.

Now I have never coveted a K-cup machine more than a little bit. I’ve enjoyed them at Helen’s house in New York, and appreciate the convenience in a household where morning coffee is not a regularly-brewed feature, but I remained happy to grind my beans and achieve coffee happiness the old-fashioned (or at least older-fashioned) way.

But these Nespresso shots...they were kind of special. Furthermore, it seemed a fun and lovely way to offer Jeff an evening cup of decaf without a major production.

So, Part 2 went like this: After duly researching such units, reading consumer reviews, and exploring alternatives, I concluded that the particular brand—Nespresso—would be the thing. I ordered one. From Williams-Sonoma, along with a frothinator (or whatever those things are called,) then signed up for my first batch of capsules from the Nespresso web-order site, placing special emphasis on fair-trade friendly varieties.

Part 3: Having placed the order yesterday, today I found myself steering Jeff around the Annapolis Towne Center as an after lunch walking opportunity. We detoured into Sur la Table, a too-cute kitchen boutique. Surprise—today they had a Nespresso operative...I mean representative...right on hand in the store, demonstrating the thing’s use, and answering my question about making americano with a Nespresso Pixie model. (This part has nothing to do with me joining the ELE, and would be cut if I were a good editor. But I’m not cutting it, because the encounter had about it that serendipitous sense of synchronicity which I so like.)

Part 4: I started thinking about how the Nestlé corporation was, as long back as the 70s, the subject of much controversy and censure due to the means by which they distributed their baby formulas in third-world country such that a dependence resulted where a dependence on formula couldn’t be afforded. (I don’t think a dependence on formula is ever a wise idea, even when it can be afforded, as I’m a strong advocate of “breast is best,” except in cases where there is no choice. But this is an aside.)

I have never since been a fan of Nestlé, and this old prejudice gave me pause when it came time to consider a Nespresso, but I really assumed—I really did—that the joint pressures of the WHO, public derision, and the money choice of better P.R. would have worked to steer Nestlé away from such deplorable behavior...especially given that the behavior went back, as I said, to the 70s.

But I didn’t Google it all up until after ordering my own Pixie, in electric blue. And here’s what I found out: As recently as ’07, The Guardian was still highlighting Nestlé's aggressive marketing in Bangladesh, re baby formula. There’s a boycott in Brazil pertaining to Nestlé extracting water from a sensitive aquifer. There are suspected labor rights violations by Nestlé in the Philippines. So, despite its dutiful march toward adding fair-trade varieties to its coffee line-up the Nestlé Corporation—though headquartered in neutral Switzerland—would, if it were a character in Dungeons and Dragons, possibly be classified not as neutral, but maybe as lawful evil. They certainly seem to dance mighty close to the line.

Which leads me back to me. I was always a determinedly neutral character when I played D&D, as I didn’t wish to be bound by any particular rules or loyalties unless they meant something to me. Which is also how I tend to play life. But I still suppose that each time I pull a tasty coffee from my soon to arrive gizmo, I am going to relive, in my head, the line from Jellicle Cats which asks “Have you been an alumnus of Heaven and Hell?”

So, yes. I’m getting one, and I hope I’ll enjoy it. But I won’t push the beasties or do any advertising on behalf of Nestlé. (Apart from this one post in which I confess to my conflicted nature.) I am merely presenting the truth about my real, unvarnished, imperfect self. I will also offer a link to this blog, called PhD in Parenting, for anyone who wishes to know more about Nestlé.

PhD in Parenting

Winding down...

2011-04-27T00:06:00.000-04:00

Next time I come to Coeur d’Alene, Idaho, I will stay at the Flamingo Motel.

Frankly, I do not have any immediate plans though. I could easily love the Northwest, I think...(I don’t know...I’d have to try a whole winter before saying for sure...)but I cannot think of any logical reason I’ll be back soon. Still, the Flamingo Motel it would be. I almost booked it for tonight’s pre-flight-home stay. Excellently reviewed, refurbished 50s motor lodge in the heart of downtown, with great walk-to-dinner potential. But I was thinking we’d barely have time to do more than eat and sleep, so I stuck with the known quantity, and we’re here at the Holiday Inn Express. And a very nice HIE it is--the “guest services manager” is a Weimeraner named Dodger, and Jeff and I actually got 20 minutes in on exercise equipment for the only time this trip. But still...you can’t beat local color, unless it’s horrible, and the Flamingo looks good.

Deploying all my electronic oracles (iPhone Yelp App, Googlemaps,) I found us a cute bistro where we could get a light dinner, as I am still trying to digest the past week of food with limited success. (Nothing wrong with the food, mind, it’s me and travel.) Then, with the drizzle abating somewhat, we took a drive along the Coeur d’Alene lakefront, and that was a good move.

There’s almost nothing as useless as seeing nothing of a new town but the Holiday Inn Express just off highway exit 11, and I had no clue, really, what C d’A was like at all. It’s quite interesting, but barely urban. There’s lake, then an intriguing architectural assortment of rich-people houses, then a couple streets of classic Northwest mining town, then batches of smaller bungalows, and then the usual sprawl of shopping, services, and hotels for people who are not brave enough to book the Flamingo the first time.

As for a second time...hmm. I have been thinking of this trip as evaluative as well as diversionary. How would Jeff do? Will I ever choose anything but car travel again? Tentative answer: Not without lots of careful thought. Even the duration--a week--seems to contribute to his level of tiredness and functional downshifts, but we’ve managed well enough.

I’d say the trickiest part was lurching through five Empire Builder cars for each of the four times we took meals in the dining car. It got so that every time the train stopped at a station--if we were even close to a mealtime, we’d try to cover at least half the ground with the train not moving. Jeff is slow and not well balanced.

Still, he remains generally remarkably cooperative and ready to go with the program even when he has no idea what the program is. At about the border between Montana and Idaho, as we headed west from Whitefish, Jeff leaned forward a bit from the backseat of the rented Chevy Traverse and said “Are we on Amtrak?” It’s moments like that that make me realize just how gracefully he manages utter cluelessness.

In theory we will be home tomorrow night. Delta has changed the departure time of our connecting flight in Minneapolis twice since I booked it in January, each time narrowing our layover. According to our current itinerary, there are 34 minutes between our first and second flights, and the first has a 50% on-time rating. But Expedia says Delta says that is acceptable. I will appraise them of our medical situation--inability to hustle--when we check in to our first flight, to put Delta on notice that if they don’t hold the second gate open for us long enough they’re going to be sending us home on Thursday.

Things I can't help but enjoy:

2011-04-25T00:06:00.000-04:00

The bathroom faucet in our room at the Good Medicine Lodge, Whitefish. It’s a spillover design. Essentially, it’s designed such that the top front quarter of the spout is cut away, making you think you’ve activated an aqueduct every time you run water.

The espresso machine. It operates very much like a Keurig coffee dispenser, except that the pods are smaller (as, of course, are the cups.) We made decaffeinated “Intenso” after dinner tonight, and it had that frothy stuff on top, like Americanos from Caffe Nero in London. I will not buy such a machine. I would use it too much.

Using (successfully) the Jedi Mind Trick on speed cops in Columbia Falls, MT. You don’t want to give us a ticket. You just pulled us over to wish us a beautiful day.

Queen size beds. We fit. I don’t have elbows in my face. Thank goodness I’m getting one soon.

The word “kla-how-yah.” It was chiseled into the concrete at the back entrance to the (closed for the season) Lake MacDonald Lodge in Glacier National Park. It’s a greeting comparable to “hello” in the pidgin language of Chinook Jargon.

Walking.

Food and Being Food.

2011-04-24T08:33:00.000-04:00

6 am. I just got up to the gentle tinkling of my iPhone alarm. I am not interested in any 2-hour time shift wake-up headaches and, these days, I invariably am too tired to write at night. “These days” meaning in general, not this trip. I had a thought about this last night--while I may not feel as though caregiving is an exhausting treadmill (so far,) I am sure that being in constant charge of someone else who can neither put his own coat on nor find the bathroom himself is having the same effect as being the mother of toddlers. At night, your brain just says “no.”

On the Empire Builder, Mom (who has taken cruises of many stripes,) likened the cabin and dining arrangements to shipboard. While Amtrak does not feed you as bodaciously as a Viking cruiseliner, you never feel--when the next meal time arrives--that you’ve done much to burn off the last fueling. As a result we got to Whitefish well primed for a bed & breakfast experience of the bountiful food sort.

Woody and Betsy, who run the Good Medicine Lodge, believe in breakfast. Yesterday’s offering included individual asparagus quiches, slices of scone, a commodious dish of mixed berries, a sideboard loaded with cereals, juices, milks (including soy,) and an assortment of toastable breads with jams. Plus coffee. There is always espresso, tea and cookies on offer all day. They invite you to sample wine and cheese at 4 if you’re around, and yesterday afternoon set out a platter of raw veggies with dressing.

As it is the lowest of low-season in Montana’s Flathead Valley (skiing is over, summer fun at least a month away,) we are the only guests for now, and we’re feeling a little bad that our food intake capacity is so relatively minimal.

Today we will be exploring Glacier National Park, and--today being Easter, when many stores close--we’ve packed our plentiful dinner leftovers from McGarry’s Roadhouse (across the street,) and will be having cold noodles, wokked veggies, and fish for lunch. Which I hope will not be in the car. Mom is worried about mountain lions.

Yesterday, in the Whitefish train depot’s “Stumptown Museum,” Walter, the venerable museum volunteer who tottered around illuminating various highlights for us, mentioned (after pointing out the taxidermied large cat,) that such felines were more dangerous to hikers than bears. (I know that, being much familiar with goings on in the Boulder area where Jeff’s brother lived for years,) but I am not concerned that we will be jumped by a lion if we stick to the more populous easy circuits, especially in a group of three. I hope that since it is “National Park Day,” or something, and entry is free, that there will be enough other visitors for her not to feel like a strolling kebab.

At the museum, it slipped that yesterday was Walter’s birthday (something, he said, like 21 x 4.) Mom made us sing happy birthday to him. This is so typically Gale, but I’ve learned that resistance is futile and went along.

The longest Empire I've ever chugged across...

2011-04-23T01:41:00.000-04:00

I am in the “jump-seat” in our cabin on the Empire Builder. Jeff is in bed, which means he is 12 inches away. This afternoon we negotiated on how many times he may cause me to wake up tonight. I suggested 2. He thought 3. “Done,” I said. Any number of “wake Emily ups” that exceed the number 3, is the number at which I may refuse and say “No. Back to bed. As per agreement.” Let’s see how that goes.

Mom and I have a thing we say, and this started at least in the declining years of my dad, who died of Parkinson’s in ’09. At a certain point of night, his “carriage turned back into a pumpkin.” This is the point at which function and mental clarity become dicey at best. With our 20 or so “wake Emily ups” last night on the Cardinal, Jeff’s pretty much been a pumpkin all day. This means that we cannot move, without firm hands-on guidance, about the train at all. If we are not holding hands as I lead the lurching way through the 75 or so cars between our caboose sleeping car and the dining car, he will become confused by every human head he sees, no matter the gender or hair color, and freeze in perplexity. (It’s 2 coach cars, then the observation car, then two more coach cars, then the dining car. Ok, so I hyperbolized by 70. These are long cars.)

I am pleased to say, though, that The Empire Builder has reclaimed and possibly exceeded the level of service we experienced on Amtrak in October, and which I found lacking on the Cardinal. Stands to reason, I guess, for a line that is named after men who routinely self-congratulated as they wiped out entire civilizations on their way to conquer the American West. We were even served dinner on “china” aka Corelle. And the food was several cuts above. Still leaving me to wonder just how Amtrak determines which routes get short shrift and which are worthy.

Nonetheless, Mom and I have, we believe, managed to get on the blacklist of dining car powers-that-be on both legs of our trip. On the Cardinal, we surmised that the laggardly speed at which we were served breakfast was due to our not tipping the dining car lady to her liking. We did not realize she took orders, microwaved, AND served, is the thing, and we made up for it by tipping well at breakfast, even after she punished us. Here, on the Empire Builder, we’ve run all sorts of wrong ways with Fran from the dining car. First, after showering Jeff in the more commodious downstairs shower room, we emerged as I was giving Jeff the sort of clearly articulated directions he needs (“Jeff, we are going this way,”) only to notice that Fran was making an early dinner announcement on a microphone right outside in the corridor. She stopped, mid-sentence, and stared at me while I hastily hushed myself. Mom, who was upstairs, says she didn’t hear me over the P.A. system, but Fran is not to be trifled with. Our dinner reservation was for 6:30. Having to traverse half the length of Wisconsin to get to the dining car, we left early to wait halfway in the observation car. (Here’s the Amtrak rule: Don’t come to the dining car until they invite your reservation time via P.A.) Here’s the problem: Announcements were apparently not getting to the observation car so when Mom finally, at almost 7, went to check to see whether we’d missed our call, Fran told her in no uncertain terms that 6:30 had been called “3 times.” Shortly thereafter, Fran called the 7:00 people, admonishing a colleague to repeat the announcement in the observation car because “people are claiming they’re not hearing the announcements.” Fran must not have gotten to our waiter, because he was nice to us. We hope we have paid our dues now, and will be served breakfast. (below: Gale and Jeff befriend a frisbee player in Chicago.)

Cardinal does not rule.

2011-04-21T14:06:00.003-04:00

Leg #1 (Washington Union Station to Chicago,) began with me taking pains to get us on the road early enough in the morning that we’d have at least 2 options for commuter trains from Baltimore to D.C. That worry in the bag, it was easy to relax at Union Station. Now we’re aboard the Amtrak Cardinal, which cuts a clockwise arc as it swings us south a bit en route to Chicago.

The Cardinal employs an older car model--a Viewliner--where I feel a bit more squished for space than on the Superliners with which I’m familiar. I am wondering how Amtrak divvies up the relative service levels of their cross-country routes...who gets the newer digs, an observation car, and helpful route maps in every cabin, and why are others a bit on the cut-rate side?

Nevermind. There are some lovely backyards in mid-Virginia, and plenty of debris piles as well. We’re glad to see it all. Now, my intention is to be doing my Japanese workbook. Luckily I brought a pencil so Mom can do her crossword puzzle. Between our cabins (A&B) is a pocket door which the cabin attendant, Shawna, had now unlocked 3 times for us, as it likes to slide shut from the rocking of the train. Presently, it is blocked with Mom’s suitcase. (photo: Mom, through the opened door between cabins.)

I wondered aloud to Mom whether this was a bit of a silly trip to be taking her on. She says of course not. She’s a trooper. Jeff, meanwhile, is wondering if it’s time for a Chardonnay yet. Evidently, not-reading Warren Buffett and the Interpretation of Financial Statements is not sufficiently riveting. Yes, I’m sure wine will be available with dinner unless wine doesn’t make the Cardinal’s somewhat stripped-down amenity cut.

Thursday observations: On the Cardinal Viewliner, dining car table service can be a bit sluggish. Breakfast, to be served to any comer from the room or roomette section of the train, appears to be managed by one young lady doing the order taking, cooking, and serving. We had nowhere to go, fortunately, and watched Indiana farms roll by while our tummies rumbled and breakfast, in spare form, finally came. Take home point: Had the Amtrak Cardinal been my first cross-country train venture, I would not have been quite as enthusiastic to try again. Next up: The Empire Builder. I’m banking on the 2/3 chance that it will remind me more of October’s experience.

Is Emily crazy? Stay tuned...

2011-04-19T17:38:00.000-04:00

This could be it, Ladies and Gentlemen. The trip to determine whether we are henceforth constrained to car travel. Since the starboard wheel of my old roll-aboard cracked like a ripe walnut on the outbound leg of our southwest trip in October, I researched a bit, and purchased an Eagle Creek replacement. I am sorry to report that it devotes a wee too much real estate to a slide-in spot for a laptop, sacrificing (it seems) a bit of clothing square footage. If I try again, I will surely want to examine the suitcase options in person (as much as I love Amazon,) but for now Eagle Creek will have to do, stuffed to the zippers though it is. (I even used

pack-it system thingies, dang-it--those zipped mesh pouches meant to magically make all your stuff fit. I’m deeply disappointed.)

In addition to two zaftig roll-aboards, we will be toting a hefty backpack full of travel docs, books, my little Mac, and overflow. This brings us to the logistical dilemma which will be either resolved or muddled through tomorrow, in the trenches. Can Jeff still pull a roll-aboard without giving every passer-by a flat tire? Or should I pull both, and saddle Jeff with the backpack? Which hand will I use to guide Jeff lest there are other women with similar hair about? A foot? A leash? And can we get up the train’s little narrow stairway?

Weird trip it will be. Why are we going to Whitefish, Montana anyway? What is in Whitefish in April? (answer: possibly nothing.) So, I am bearing a bit of an onus. It is the onus called--”I picked this trip because we couldn’t find anything else, but Mom’s accustomed to real trips, so all the weirdness of this quirky adventure will rest squarely on my unremarkable shoulders.” That is a long name for an onus. But, I hope, we will not have long distances over which we must tote our collection of baggage.

More notes from the world of research protocols...

2011-04-16T17:41:00.001-04:00

Yesterday was about the closest I’ve come to giving myself a sharp talking-to about “dragging” Jeff into clinical research. I know, I put stupid quote marks on the word dragging. Because I can’t decide if it applies. I do not force, neither do I coerce, arm-twist, or hornswaggle him into participating. BUT, I do profoundly understand at this time that between the two of us, I do the thinking. If I think something is a good idea, I say so and he agrees. Likewise, for bad ideas. So, when it comes to anything that may have uncomfortable aspects, I have to do two things: Explain, such that he understands and can assent. And measure my grasp of his nature (altruistic) and current ability to tolerate bothersome procedures against what is likely to occur.

Because, truthfully, I don’t believe there are too many people with AD-like processes going on in their brains who are completely capable of making these decisions for themselves. Which leaves me to bear the responsibility if a day feels a bit too arduous. Yesterday at NIH skated pretty close to the too-arduous line.

I like NIH, as a site for research participation. As I’ve mentioned, the people are nice. They’re also very casual. About half of everyone has jeans under his or her lab-coat. The others wear scrubs. Our main doc-in-charge was off for the day (as were 3/4 of the other folks you’d normally see milling about. Friday may just not be a big day for government work. Even the Au Bon Pain had let their stock dwindle in anticipation.) Instead, we had a Nurse-Practitioner who introduced herself as Dr. Hyphenated-LastName (which I forget in its entirety.) “Were we expecting an NP?” I asked. “Oh,” replied Dr. N-P, “I have about ten degrees, including a doctorate.”

She also was sporting NIH denim-professional, and possibly had not combed her hair in two and a half days. Prior to the prep process, she asked Jeff if he had any questions. True to form, he replied, “What is the meaning of life?” “42,” I said, “You already know that.” But Dr. N-P had another lengthy response which led me to fear a full-gospel evangelization was about to occur. I don’t think she understood that Jeff was being silly. She, fortunately, stopped short of the religion-specific details of the meaning of life, but I sensed it was difficult for her.

But, Dr. N-P knew her way around a PET scanner, and that’s what really mattered. Actually, so did the other 5 or 6 people who were in attendance with varying degrees of attentiveness. This was the most well-attended PET scan I’ve ever seen. Actually, it’s the only PET scan I’ve ever seen, as Jeff’s diagnostic one, in ’07, had me in the waiting room. Not so at NIH. I was free to expose myself to radiation, so long as I knew what I was doing.

The things which added up to me second-guessing myself were basically these two: For this inflammation-measuring PET scan, an arterial line was required. An arterial line is inserted in (typically) the non-dominant wrist, and requires a local anaesthetic, plus a bit of immobilization, courtesy of a splint-like board. This was not sufficient to keep him from risking dislocation of the stop-cocks by waving his arm about, which meant that--at pre-scan bathroom time--I needed to keep BOTH arms (the other had the regular IV) out of trouble while dealing with all the jeans-zipper and undies concerns myself.

I would say, though, that the worst of it was 90 minutes of having to keep still in the scanner. That’s a long time for someone who forgets from one minute to the next that he’s not supposed to move his head. To help with this, a plasterish sort of mask is employed, as a reminder not to jerk about if you wake up from a doze, mid-scan. I still had to remind him. Many times. At 30 minutes left, I started an encouraging countdown, and (thankfully) we made it.

We will be returning in May for an MRI. I’m pretty sure the MRI is easier. At that appointment, we will also consider the option of another PET study which does not involve an arterial line. Let’s see how it goes.

Here’s the thing that always happens though--Jeff does not complain. He does not mind needles. He does not freak out. And--once they bring up the hockey-puck cheese pizza with green salad and two orange juices in tiny cups--he’s as happy as can be, and completely free of the sense that he’s been put through the wringer. So I will ponder. Research is valuable, and we’re doing what we can.

cogging the wheel...

2011-04-08T21:03:00.002-04:00

Tuesday: Were we in Nevada? No desert to be seen. Must not have been Area 54. Perhaps it was Area 45. Aka NIH, or the National Institutes of Health.

Yes, we have once again plunged brain first into the sea of Clinical Research, where parking is validated and all the anglers wear white coats. As per the emailed instructions, I ferried us to the West (I think, or was it North...I think they like to disorient you) entrance on Cedar Lane, and we proceeded through the 12 steps of decontamination.

Well, we were thoroughly inspected, at least. You drive up to and almost over 3 orange cones, as gestured. You forget how to pop your trunk, thinking he meant “hood,” and instead get out and open the back hatch manually. While the guy with the funny wand gives your car the once over, you enter the gatehouse, wait for the lady to get off the phone, then present i.d.s for her scrutiny. Then they give you a yellow dashboard seal of approval paper, remove the orange cones, and dispatch you to the Parking Garage of Never-Bring-a-Hummer-Here. Where there are no available spaces, despite the fact that you even threaded your car along the entire golf-cart width circuit without a scratch. You still have to turn your keys over to the guy with the impossible accent so he can double park you. You think. He might have said “I get good price. We give you pretty bicycle after.” But you couldn’t understand him, so you take your claim ticket and head through the double doors. At which point you switch back, narratively speaking, to the first person.

The thing is, everyone at NIH is nice. I don’t know why this is. I’m used to encountering folks who barely tolerate their jobs, no matter where I go, but at NIH they apparently take their hospitality training directly from Minnie Mouse. We arrived with 30 minutes to spare before we were due at admissions, and knowing our first day of rigmarole would be lengthy and arduous, sought a snack. So I stared at the “You Are Here” chart by the elevator, scanning for a coffeeshop. Not on there. At this point, very nice person #1 asked if we need help, and pointed us in the direction of the atrium wherein one may find an Au Bon Pain outpost. Hooray! Coffee! Tea! Cinnamon rolls! And an architecturally intriguing space in which to consume them.

At the appointed time, we presented ourselves at admissions where we were given a friendly greeting, a “welcome packet,” and a 45 minute wait time. The packet contained phone numbers and a booklet detailing the whats and wheres of being an in or outpatient at NIH. The waiting room contained people, whom I tried not to examine too obviously while secretly wondering what studies they were all into. Meanwhile, very nice person #2, who was something along the lines of “patient hospitality coordinator” checked that all was peachy with us, and it more or less was, give or take 45 minutes.

When our name came up, very nice person #3 checked us in, and we were escorted upstairs by the young lady who, evidently, administratively assists the physician in charge of our study. From here on in, things were pretty familiar. The doc explained the study, gave Jeff a check-over including the usual things like “draw these 2 interlocking pentagons” (no way,) “spell WORLD forward and backward” (half-way,) and “remember the words ‘apple,’ ‘penny,’ and ‘racecar.’” (2/3 of the way...not bad.)

This was only interrupted by very nice people #4 and #5, in the guise of patient advocates, whose job was to make sure we hadn’t felt coerced by our referring physician, and also to ascertain whether I was using Jeff as my entry in the Science Fair, but they apparently bought that since I’m only studying Japanese right now he was with me at NIH as a willing and semi-lucid participant. So we passed. And signed some papers that allowed me to sign all the rest of the papers.

Several bouts of poking, prodding, and EKGing later, Jeff was clearly pretty exhausted and our day at NIH was nearly concluded. Our little admin assistant showed us to the atrium alcove where we would obtain our “Extended Visitor badges” with photos (lordy, mine is bad,) and bade us farewell.

We are scheduled to return next week for the PET scan which will measure brain inflammation. Our new badges will let us bypass car inspection, but not--I suspect--the parking conundrum. This depends, of course, on whether the government’s playground standoff means everyone scoops up his marbles and takes them home for the week, or whether services including NIH will carry on as normal.

It will be shorter, and less tiring for Jeff. This time, I rewarded us with a pizza at Matchbox Bistro in Rockville, complete with beer in goblets. That helped a lot. Here’s how I can tell. After our early dinner, we got into the car. “Pleasant day,” Jeff remarked, as we settle in. I chuckled. “What did we do?” “Had food, took a nice ride,” he said.

Was it all gone? The atrium, the nice people, the mental calisthenics, the needles, the paper signing? Well, for that moment a good feeling in the tummy was all that counted.

Sand, ethernet and wormhole socks

2011-03-28T20:42:00.002-04:00

When Apple designed the 11" MacBook Air, they had to leave some stuff out to make it so slim and light. One thing they left out was an ethernet port. When I packed our bags for a short trip to North Carolina I had, likewise, to leave some stuff out in the interest of space conservation.

But I didn't have to leave out the dinky little pigtail of an adapter that converts a USB port into an ethernet port. I just forgot to bring it.

Here in Gillespie Cottage things are not so high-tech, and there is no wifi. Net access by wire only, thanks. So I'm about kicking myself. Mom's li'l Toshiba is here, and available mostly, but you know how I like my own stuff. Well, if you didn't, you do now. I'm blogging by iPhone. It's a pill.

Among the tasks: We've got some lattice to reattach to the deck railing to keep inquisitive small-fry contained. A bedspread to replace. (K-Mart doesn't sell bedspreads. What's up with that?) And about 6" of sand on the parking pad under the house that we'll have to call the Bobcat man to clean up. Except for the not-inconsequential portion our shoes will track into the car.

Meanwhile, we seem to have brought along a sneaky sock. It's Jeff's sock. This morning, when he went to put his shoes on before breakfast at the Holiday Inn Select, one sock had up and disappeared. So I got him out another pair. We ate. Mom and the waitress became fast friends as usual. Then, 20 feet into the lobby, the waitress charged after us with a left-behind object. It was Jeff's dirty sock. I cannot imagine from which part of his anatomy it must have tumbled, and I was a bit abashed to have left behind a crumpled sock, of all things. Well, maybe false teeth would be worse.

Anyway, we pressed on and got to Nags Head late morning by which time I'd noticed that Jeff had pretty well smudged his jacket and pants with pasty unidentified substances, so I got him a fresh outfit and threw the dirties in the wash. Including the errant dirty sock and its more well-behaved partner.

When I fished everything out of the dryer, the bad sock had once again vamoosed. Until afternoon errand time when I threaded Jeff into his clean jacket only to discover a sock dangling saucily from the cuff. I'm not sure where it had been planning to jump out--probably while we were eating dinner at the Outer Banks stalwart, Owens' Restaurant.

But I caught it. Who knows what that sock will try tomorrow? Next trip, I bring my ethernet port adapter for sure, but screen socks for precociousness.

and tomorrow...room coffee from a filter pack!

2011-03-27T20:22:00.003-04:00

Not a bad drive from Severna Park to Norfolk this afternoon. People don’t seem to do much on a Sunday, apart from breakfasting at Garry’s Grill. (Which thwarted my morning spontaneous plan. With several folks hanging out the vestibule door at Garry’s around 10am, Jeff and I went home and settled for frozen flatbread vegan pizza. Good choice.)

But traffic was light down the eastern shores of Maryland and Virginia, and we made good time. Though initially aiming for The Great Machipongo Clam Shack in Nassawadox, Mom and I decided that 4pm was too early for dinner, so we pushed on to Cape Charles for salmon-topped salads at Kelly’s Gingernut Pub, where the waiter--for some reason--showed us the propane torch they use to melt the sugar on the top of the crême brulée.

Now we’re nestled into the Holiday Inn Select, Norfolk, where I’m wondering a few things. 1) Did they really wash the glasses before they put those little paper caps on top of them? 2) Not sure about one of the towels either. 3) Can other people stand compact fluorescent bulbs, or am I an oddity in finding the light they cast best suited for a morgue? 4) Am I going to be absurdly tired at 7pm for the rest of my life, or is it just a caregiver rhythm? And 5) Why did I bring a Sundance Catalog? Oh, I know. Because I knew I’d be too tired to do anything more intellectually challenging than admire jewelry I will not buy on the principle that I could probably get something more unique, that is not sold by Robert Redford, from Etsy.

But here we are. Mom is across the hall. The minute we walked into our room Jeff said, somewhat conspiratorially, “I know--why don’t we go home and use the bathroom.” “Because we’re in Norfolk,” I replied. “Home’s a little too far.” “How did I miss that?” he said.

So here we are. Tomorrow, the cottage in Nags Head for some inventory and repairs.

ouch parking.

2011-03-17T21:09:00.003-04:00

In America, we can’t really fit our cars into our cities. I mean, for a country that opted for extensive interstates over a truly useful public transportation system, we should at least be able to park. But sometimes we can’t.

I’m certain that this is at least half of why people here like suburbs. Because you can park. You can park at your house. You can (except during the 4-5 weeks surrounding Christmas) park at shopping venues, or at the doctor’s office.

Actually, I’m going to take back that part about the doctor’s office. Gradually, over the past decade and a half, most of our docs (whatever their specialty) have moved to the medical complex surrounding the local hospital, and you do have to allow an extra 15 minutes for one of those vertigo-inducing spiral climbs through a parking garage in order to reach one of the 2.5 remaining spots in the open air at the very top.

But the real fun comes when we either must drive or wish to drive ourselves into Baltimore, Annapolis, or Washington D.C. Each of which exemplifies the practical dissonance created when children of Eisenhower’s interstate system attempt to utilize colonial era towns. It’s like trying to link Newtonian mechanics to quantum theory. It doesn’t compute, and the String theory of transportation is decades from perfection.

Did I mention the time, years ago, that Jeff and I stopped in Frederick, MD in the rain and--anxious to avoid an excessive wetting--we scrounged the crevices of our minivan for any coins our children might have tossed about? We needed to feed the meter you see, but there was nothing to be found but a Chuck E Cheese token. Don’t tell anyone, but we discovered that (at least in about 1995) Frederick, Maryland parking meters accepted Chuck E Cheese tokens. Yes, apparently I have mentioned this before.

The thing is, having gobs of coins on hand for meters just rarely happens in 2011, and at least municipalities are trying to adapt. I kind of like the system where you go to one of those “Pay Here” automatons, feed it a credit card, and take the receipt it spits out to place on your dashboard. At least I like it if the boxes aren’t all broken.

Yesterday we encountered something new. Well, at least new to me. We were headed into D.C. for Jeff’s neurology appointment, about to exhaust every one of the 105 minutes I’d allotted to get there. I decided not to even try the parking garage at Georgetown University Hospital. It fills by 10 am, but you don’t know until you’ve reached the 7th level below the river Styx. So I went for neighborhood parallel parking and--amazingly--nabbed one right away. But I had only 2 quarters. Then I noticed the ad, right on the meter: Call a certain number from your mobile phone and pay by credit card! The trouble was, I had 4 minutes until appointment time, and about 37 numbers to input in order to give the dial-a-robot the license plate number, my phone number, my credit card number, and probably a couple other vitals which have slipped my mind in the angst. And then, in attempting to light my iPhone screen back up as it helpfully tried to spare its battery power, I hit enough erroneous keys that the whole process defaulted me to a human operator who had to talk me through the entire process again. So that was fun.

But we got inside where Dr. Turner confirmed that Jeff’s version of Alzheimer’s is in fact Posterior Cortical Atrophy. And, after discerning that Jeff could not put his right thumb on his left ear, or do anything else that involved crossing his midline, the doc exacted reassurance from me that Jeff no longer drives. No, I said. That was an easy call I made several years ago. Now all the parking fun is mine and mine alone.

They had other skills.

2011-03-13T18:23:00.003-04:00

Over the years, among the things I’ve noticed about my Gillespie ancestors of the last century or so is that they were crappy carpenters.

The evidence is in a goodly number of pieces of furniture which have been handed down through four or five generations. Today, it was a flourish of trim from the antique bed that used to be my grandmother’s, and before that belonged to my father’s uncle and so on. I don’t know which of my forebears attempted to fasten this chunk of wood, which is roughly the size of a cutting board (if a cutting board had two auxiliary pieces of trim fastened to it) back to the bed frame when it cracked clean off, but I can’t believe that even in 1890, or whenever, they didn’t have something better than a couple of half-penny nails and a messy squirt of Elmer’s glue.

To be fair, the fact that I am only compelled to re-fix it now--in 2011--suggests a repair that at least hung in there a bit, but visually the effort was pretty slipshod. Sometime this week or so, I will employ some wood glue and a long clamp, and see if we can’t do it right this time. Fortunately, I have a couple of genes from the Branches--my mother’s side of the family--where carpentry was heard of and skillfully practiced.

Now that I think of it, I’m pretty sure my grandmother and great-grandmother (Gillespie side) made a regular habit of knocking figurines and such off their perches, then cobbling the heads back on with too much glue. Come to think of it further, despite my slightly better grasp of joinery, I didn’t escape that legacy.

One of the wedding presents Jeff and I received in 1984 was a lamp with a capiz shell shade--one of those top heavy things, where the translucent shell panels are held together in a grid of flexible metal. Well, we each did our share and--all in all--we probably tripped over that thing’s electrical cord 5 times before finally declaring the lampshade an irretrievable loss. Also, I clearly remember the time in my teens that I walked by my Mom’s dining room table, snagged the veneer with the hammer loop on my overalls, and ripped off a 1” x 3” strip. I don’t remember who glued it back on, but I’m pretty sure it was not my grandmother Gillespie.

smushed things, large and small

2011-03-11T16:45:00.004-05:00

It is day 12 of waiting for the body shop to complete reconstructive surgery on my car. 3 weeks ago, during a day of high winds, the resident tulip poplars hurled a few of their unwanted branches at the Earth, a sizable one of which smashed my hood, windshield and roof rack, in addition to creating several extra minor dings. (Its final flourish was to punch a hole in the garage door.) Luckily, as a no-fault event (unless you find accountability in anyone parking a car in a neighborhood where the trees are older than the oldest humans,) the repairs are covered by insurance, and I will suffer little out of pocket. Furthermore I have, for the time being, use of the SUV which used to belong to my dad, and which my mom has retained for purposes of traction during episodes of Maryland “wintry mix.”

So I don’t, frankly, have much to complain about, and today’s news photos of cars and houses swept into Godzilla-sized eddies in northeastern Japan do tend to put my bashed Subaru into perspective.

Still, I will be happy to have my car back. For one thing, I will get a break from buckling and unbuckling Jeff every time he takes the passenger seat, and reaching across to open the door for him when we stop. (The handle being trickily located under the armrest, and less intuitive than average. Not that intuition helps in our case.)

In the interest of gumming things up a little more, the wiper motor on Becca’s car decided now would be a good time to go wonky, so that we must now hope that the rain which seeped into the basement this week, and turned our yard into the swamp thing is done deluging for at least a few more days.

For now, I am sitting. I’ve got Japanese homework on my left, and The Power of Passive Investing by Richard Ferri on my right. A hefty cat who would prefer to be on my torso is settling for occupying my feet, and I’ve finished my latest Alzheimer blog for The Fisher Center. Plus, I had tea.

Oh, and as an extra bonus, Becca and I got in a trip to Whole Foods Market while Jeff accompanied his sister on a visit. Which means I got to skip this scenario I wrote up a couple days ago, which describes a typical visit to buy groceries:

We don’t move through crowds well.
For some reason, which I can’t quite piece together now, we ended up in Whole Foods on Saturday last week. Luckily only for an item or two, but--even for a couple targeted strikes--it’s not the best plan.
Lately I find myself, more often than not, with one hand grasping Jeff’s arm as we shop. It’s a bit like shopping while pushing an upright vacuum and a shopping cart. What happens if I let go is he stops. Well, some of the time. The other thing he’ll do is fixate on someone...almost anyone, really...and the minute that person veers off, Jeff is right behind him or her. So that’s why I hang on.
It poses a problem when aisles get tight. I don’t think other people understand why we have to be a double-wide trailer. Sometimes it’s not until you can no longer behave “normally” that you start to observe what normal behavior is. In crowds, it is (for one thing) this: A herd of humans with normal processing skills move, when necessary, like a school of fish. When they approach a constriction through which passing in a wider-than-single-file format would violate cultural space bubbles, they instinctively break formation and goosh through before re-grouping. Jeff can’t, so when a passage will only allow for one I find that I must thread him through first, while holding an elbow, then follow. It’s more awkward than it sounds.

Indeed. I’m going to study some vocab now, so I can beam encouragement toward the people of Japan, and think a couple thoughts that--if they’re tuned in telepathically--they might understand.

season of play

2011-03-01T19:54:00.005-05:00

Back when I began spawning small humans, we purchased a playpen. (That's Jeff and Rachel, circa 1987.) Ahem...a playyard. Because that’s what manufacturers had begun calling them by the enlightened 1980s. (Well, maybe other people had trouble penning their small-fry, but I didn’t, so I didn’t ever keep with the times and break the habit of calling it a playpen.)

Not that my babies were ever content to while away more than a few minutes at a time in an enclosure full of the most tempting diversions you could scrounge up to buy yourself a moment, but I did employ the thing. And the whole notion popped back to mind when, recently, I suddenly visualized myself as, once again, the guardian of a playpen.

In the visual analogy that sprang uninvited into my cranium, my house is the playpen. My Soobie Outback is our stroller, and Whole Foods, Trader Joe’s, or The Fresh Market (plus a half dozen recurring lunch venues) are our outings in the park.

I used to imagine that if I were imprisoned for some reason, I would find a way to take advantage of it. (this is, of course, assuming a low-intensity form of incarceration, in which I had access to books and other learning materials.) Essentially now this is what I am doing. I am determined to stay active, body and mind, but I think the playpen metaphor does a better job at capturing the nature of our day to day existence, apart from the fact that the toddler is winding down, not up.

Sometimes I think I should be feeling pretty mellow because--in many respects--this is a fairly easy job. We have not reached the levels of stress that dog many of my cohorts in caregiving whose AD spouses are incontinent and/or belligerent. (hoping we can skip the latter, the former will be inevitable, eventually.) We are comfortable and well-fed. I deal with deteriorating building infrastructure as it arises, and rarely go berserk from excessive demands.

I must confess though, that the obscure nature of the end-game, and the relative isolation of being “home with the kid” play a bit of havoc with my mood and motivation. People need to interact--it’s a sort of “self-winding” feature of humans. A certain level of requirement keeps us stepping, and when the demands sink to too quiet...too alone, even all the Rosetta Stone and elliptical trainers in the world lose a little of their sparkle.

In fairness, there is room for malcontentedness all around. Demanding careers can feel like indentured servitude, undoubtedly. My position is not hugely more undesirable than many of the other options, and I am a strong proponent of positivity.

I believe that I am, at present, somewhat fogged as a result of finding myself--caregiver-wise--in the narrow channel between relative mobility and the need for sitters.

Classically, we caregivers deploy whatever help resources we have access to reluctantly and late. Sooner more than later I will need to work out what kind of helper(s) I need and how to engage them. What I am afraid of is that I will have no idea what to do with myself outside of the playpen.

this time meta, next time betta...

2011-02-24T21:19:00.001-05:00

As of this morning I had resolved, easily, that I was overdue for blog posts both here and on my “official” gig at the Fisher Center. Epic Mickey is...well...epic, but I finally achieved the grand finale and felt the release of Mickey’s white-gloved grip.

So I made another resolution: I’d base both pieces on whatever stuff happened today.

As such, I owe Jeff one for providing the perfect springboard for a Fisher vignette. And I owe Becca one for cleaning him up when--while I was at Japanese class--he helped himself to a big batch of Rocky Road, sans dish. Becca discovered him chuckling at the kitchen sink eating ice cream out of his hand, while liberally spreading the excess about his face, sweatshirt, floor, countertop, dishwasher handle, and probably the dog.

But I pretty much kept Jeff out of mischief for the remainder of the day, and our most exciting side adventure was a brief foray into Trader Joe’s. Now, we did replenish our decimated ice cream stock, as you might expect, and the free sample coffee on offer was a very worthwhile cocoa-laced special, but you can hardly expect a whole blog post out of a grocery shopping expedition. Actually, maybe you can. In fact, I’m almost certain I’ve done it at least once.

But today I’m resorting to meta-posting on the nature of blog-thought. Yesterday, you see, I defeated the evil Blot. Today, I merely carried on as usual in the brick and mortar (well, maybe beam and drywall) world of ordinariness, where cups of coffee are new and special, but I have to make sure I don’t eat too much chocolate.

Epically bad, but working on it.

2011-02-12T15:38:00.003-05:00

I’ve always had a little bit of a computer game problem. Never life-impacting in any serious way, and certainly--compared to legions of Gen Xers who grew up just behind me--it’s nothing more than an occasional distraction, but they do attract me, and sometimes I feel a little indolent when I jump in for too long.

I think it’s fair to say that I bought my toddlers the early HyperCard based Cyan game “Manhole” in roughly 1989 because I wanted to play with it. Undoubtedly I lost at least a couple of parenting karma points for insisting to my three year old that the hipster dragon who offers you a biscuit was not scary, and we should play on. Because I wanted to play on.

Sometimes when the littles napped, in our early plug-in external modem days, I went as much online as you could in 1988 and played a text-only multi-player quiz game on Compuserve called...what was it called?...oh yeah--”You Guessed It!” When Jeff came home and asked how my day had been, I did not like to tell him that I had played “You Guessed It!” I’m not sure that an itemized list including 3 coloring book pages, 1 trip to Giant, and 2 loads of poopy diapers would have been more impressive, but for reasons that are not quite clear to me, computer games have always been a slightly guilty pleasure.

And yet, despite the fact that Pong emerged in hotels everywhere when I was 11 years old (I played an embarrassing game once, against a random man in a hotel lobby who just wanted to try it, and needed a partner...I missed every return,)...yes, despite that, my fascination with computer games never extended to console-based games.

What was our first console guys...the PS2? I think so. I never played with it, except for a little Karaoke Revolution and DDR. Ok, ok...I also did a good bit of drumming on Rock Band when we upgraded to the PS3. Beyond these large-muscle things though, I never diddled with joysticks and button-based controllers. Too confusing. Too visually chaotic. On the rare occasions that a kid would insist, I’d clutch my controller like a pilot in a death-spiral, trying desperately to discern whether I was the green thing with a mustache bouncing around on the screen, or the red thing with sparks flying out of it. I really didn’t know. The television speakers would yell “ee oo ah...wheeeeoooooo....eeeeeeehhhhhh.” The kid would say “want a rematch?” I’d say, “did you win?” Because I really couldn’t tell, except in that there would be electronic confetti and applause exploding onscreen.

So, I was a little surprised to find myself kind of wanting to buy Epic Mickey, from the moment I first got wind of it this winter. I don’t know what the hook was. But then, my friend Betsy began detailing her progress through the Epic Mickey's “Wasteland” Environment, as a running Facebook status commentary (thing #1,) and Amazon emailed me a 24 hour opportunity to buy the game for $29.99 (thing #2.) So I did.

My first thought was that it was for Gabe. It is true, of course, that Gabe’s usual taste in games runs to post-apocalyptic wastelands where rusted, lag-bolted metal structures are smeared with guts, and zomboid ghouls are apt to be trying to rip your lungs out. But he’d still like Mickey. It wasn’t for me. Until I started, and it turned out to be for me.

So, apart from this confession that I do waste a certain amount of time on video games of both the computer and console varieties, there is this second confession: When I control Mickey Mouse, he has the hand-eye coordination of a 3-legged moose who has just been hit with a tranquilizer dart. He tends to fall off cliffs and stuff like that. Most of the time I’m waving my wiimote around shouting “Where’s my aiming thingy?” while streams of spladooshes, bashers, and blotlings pound Mickey into the pavement. Nevertheless, with the help of those who have gone before (online walk-throughs and videos, as needed,) I have made my way 2/3 of the way through the game.

I wonder where that Pong guy is now? I could offer him a rematch. This time on my quarter. I might return 2 or 3 volleys.

It's a lot of different things, actually.

2011-01-30T10:36:00.002-05:00

Not that I’ve been a terrible slacker where exercise is concerned, but my mom’s recent report of less-than-optimal bone density has galvanized my determination to hit the elliptical as close to daily as possible. It helps tremendously when I’m reading something equally galvanizing on my Kindle, and What is America? by Ronald Wright is doing a pretty good job of motivating me to step and read.

Rachel recently brought home a couple of elementary school textbooks from the 60s (My era. The books look awfully familiar, even if they weren’t the specific ones we used in Mrs. Randall’s 3rd grade classroom.) They brightly remind me of what a blond and Eurocentric world of childhood memes I grew up surrounded by.

Ronald Wright’s relatively analytical retelling of the cultural behaviors and histories which led to the launch of the U.S. is not going to be a staunch latter day patriot’s cup of tea, but as much as I enjoy visiting the courage, follies, and struggles of early Americans through such venues as HBO’s John Adams series, it would be disingenuous of any fair-minded person not to look, with honest eyes open, at the perspectives of all the peoples involved in the settling and expansion of the U.S.

That’s what Wright does in this book, tracing cultural tendencies and clashes back a good ways, into the religious and political (usually the same thing,) maelstrom of Britain and Europe into how it all spilled over onto the turf of the New World.

Thus far, there are only 11 reviews of What is America? on Amazon, with the only 1-star reviewer bashing Wright’s book as an anti-American rant. Which doesn’t surprise me. Because it removes, utterly, the whitewash which was splattered thickly over history as it was presented to young minds, mid-20th century, (which is the only educational era I can vouch for with first-person accuracy.)

I’m not going to rant anti-Americanly either...because I’m not anti-American. But I am willing to face what seems obvious--that humans, as cultural groups, are and have always been driven by ambitions and methods that seem to defy the good-heartedness of people I know individually. There were always eye-witness voices willing to state--with refreshing candor--the facts of what occurred to clear the path for America as it exists today. But I don’t think they read us those voices and accounts in 1967.

And as for now--and as for ever--all any individual spawned into a point in history can do is say “Here’s where we are. Here’s how we got here. What did we do well? What did we do poorly? And what can we do better?” Then you vote.

my...um...person I take care of.

2011-01-26T11:52:00.002-05:00

I took Jeff to the Hair Cuttery today for a trim. I’m never quite sure how they perceive us at such places...can they tell he’s impaired? Is my behavior--as “director” of the expedition--coming across as unnecessarily managerial, or is it clear that someone needs to be at the helm, and it’s not Jeff?

Sometimes, even when an appointment or similar starts out nebulous, by the end I’m sure they know. I sat with Jeff’s coat and played “Spider: Bryce Manor” on my iPhone while the overly bleached hair lady took care of Jeff, but when he was done and clearly perplexed about which direction to walk in, there was no sign of misunderstanding on the hair cutter’s part when I stepped up to pay.

Meanwhile, as I focused mainly on the transaction, I noticed a fellow customer--a women about 60--helping Jeff to put on his coat. This surprised me. Not that an observant person wouldn’t spot the problem with his fumbling, but that someone would be so quick to act. I finished paying, and thanked the coat-lady for helping Jeff. “Your father?” she said. We’re getting this occasionally now. A few weeks ago, when the vet led us into the back of the animal hospital to view Otis’ belly x-rays, she briefly referred to Jeff as “Pop.” “Come on Pop.” Someone could construe that as rude, but it was clearly meant to be a friendly gesture. I took no offense, and Jeff didn’t even notice.

Meanwhile, “no,” I said to the coat-helping lady. “My husband. But whatever it is you’re thinking, you’re correct.” (She could, of course, have been thinking that we’re Brangelina...but I doubt it.) “Yes,” she replied. “My friend’s father is like that.”

Jeff did not take a speck of that exchange in, fortunately. As much as it is important to give what autonomy and acknowledgment you can to an Alzheimer’s person, it is also true that you can often talk about him to another person, completely circumventing his ability to realize that he’s the subject.

But my father, eh? Mom told me she thought that would start to happen. Jeff has always been very youthful looking for his age, so--despite our 14 year age gap--he has almost never been taken for my father. Confusion ages people. And there’s a thing about eyes, which you may not pay so much attention to until you’ve been intimately involved with Alzheimer’s. But intelligence and focus beam right through our optical orbs like a laser and, when it is gone in a loved one, you become a keen observer of it in others--particularly others who may be older than your faded loved one.

Then there’s me, too. I guess I look about exactly the right age to be classic sandwich generation. If you had to peg me vis-a-vis Alzheimer’s, you’d presume it’s a parent I’m caring for, not a spouse. Ok.

beeeep

2011-01-23T16:25:00.003-05:00

What happens in the last chapter of The Wolf in the Parlour by Jon Franklin, is that his dog (whose personal tale is woven into the narrative alongside the story of Franklin’s search for insight into the nature of the human-canine symbiosis,) alerts him and his wife to a house fire, thus getting all three of them out in time.

I am very glad to have a dog (except for when I’m not...she can be awfully barky,) but since I already do, the main action Franklin’s book spurred me to was checking the smoke detectors. Thus was this afternoon’s agenda set.

We have three smoke detectors, all (theoretically) wired, such that if one smells smoke, all will blare. The one upstairs is so high into the peaks of the beamed ceiling that I can only reach it by dint of my Little Giant ladder. Which I’ve done to replace the back-up battery. The unit on the main floor lives on the normal-height ceiling, just outside the bathroom and around the corner from the kitchen. It has had a problem for some time.

The problem with it was that--at some point--Jeff replaced the detector, but not the ceiling bracket. This resulted in its not locking into place at all, and--for years--it has functioned, but dangled on its wires, six inches from the ceiling. There have been many household maintenance details that I’ve ignored over the years, and this is one which today I resolved to fix.

As for the detector in the basement, well, today it failed inspection. Not only could I not push the button to test it--I couldn’t even reach the button which seemed to be unnaturally sunken into the unit. It too was hanging, even though it had a bracket. But the bracket was only half-installed as it turned out, anyway.

My best guess is that an electrician connected the upstairs unit, but that the other two were some of Jeff’s last work--when he still understood the basics but was missing details all over the place. While both semi-functioned, neither was properly installed or wired, so I’m happy to report that replacing wired smoke detectors is pretty easy, even for someone who’s only working on her junior handyperson merit badge.

Green lights on? Check. Red lights flashing once/minute? Check. And all on the ceilings, where they belong. No dangling. Just before Christmas, the house across the street from my Mom’s burned to a crisp. The homeowner got out, but the whole thing’s a goner. This is not something we expect in today’s world of homes which are no longer heated or lit by open flames. But it happens. So I’m a little better prepared now. But I also hope the dog will wake me up.

Ruts are places too.

2011-01-14T21:35:00.001-05:00

Did you ever wiggle your fingers just before beginning to type? I never did until yesterday, when I sat down to work on my first official blog post for the Fisher Center for Alzheimer’s Research Foundation.

It was more reflexive than anything, and I felt very silly as soon as I did it. I also assumed that such a stereotypical gesture would guarantee me a case of writer’s block. Well, maybe not block. But at least a 3-day stint in the Inescapable Rut of Trite Phraseology.

And it did. I’m stuck there at least through tomorrow. Still, I think I managed to scrape enough mud off the sides of the IRTP (you know...the rut,) to smudge it up just enough that it wasn’t an entirely hopeless freshman entry.

Meanwhile, I’ll toss thoughts for the next contribution into the slow-cooker and refrain from adding any seasoning until the IRTP is a sad but distant memory.

coming...to a blog near you...

2011-01-11T15:27:00.002-05:00

I am planning another cross-country trip by train. Working name: West by Northwest.

While it feels a bit right on the heels of the last one (known as: West by Southwest,) and I feel a trifle extravagant and/or frivolous, there are creditable reasons to go sooner, rather than later. Primary among them: Making hay while the sun shines. Beyond any impending sense of decline I may be experiencing as Jeff’s caregiver-in-chief, there is also the realistic acceptance that if probabilities hold, stage 6 of his illness (the last in which we can expect any kind of travelability...and only in the early phase at that,) will be over within 2 years.

There is also my mom, and our decision to do something together. I hope my lovely healthy mother will find many more opportunities to explore the world, but since her primary travel partner’s (my dad’s) death from Parkinson’s in ’09, I would love to fill any available niches to the extent that I can. (Though she should note: Olivia, aka daughter #3, has offered to accompany Grandma to almost any exotic location of Gma’s choosing. Is that a deal or what?)

Hence, last week we found ourselves poring over an expansive pile of brochures and magazines offering trips to every corner of the globe. We wanted to take the one down the Peruvian Amazon by riverboat. Sold out. We almost booked a small-ship cruise to the Galapagos Islands. The rivers of Europe looked awfully pretty. But the more we thought and weighed Jeff’s limitations against the imperative to maintain a pleasurable, non-stressful traveling atmosphere, the narrower our parameters became.

Substantial changes of time-zone will knock a healthy person’s IQ temporarily down by several multiples of 10. We don’t want to turn Jeff into a zombie. Airport security is hassle enough with someone who can’t manage his own items. Adding customs to that seemed excessive. Many boat trips required numerous transfers into rocking zodiacs where the nimbleness and visual requirements might trip us up. Tours by land would have us changing accommodations nightly, increasing disorientation.

Finally, I told Mom that ever since our Amtrak Southwest Chief trip, I’ve been eyeing the Empire Builder covetously. Would she be interested? Mom is a sport, and an adaptable one at that. So yes. This has, therefore, become much more of an Emily trip than a Gale (mom) trip.

So--barring unforeseen downturns in function or other eventualities--we will, in late April, chug from Washington D.C. to Whitefish, Montana (with a change of train in Chicago.) I don’t think much happens in Montana in the Spring, but that might be ok for us. Glacier National Park will be there, and we’ll drive in and have a look around. We’ll see what museums are open year-round, and relax at the inn. I’ll post, with an eye toward making it look exciting and enviable.

not so old blue eyes

2011-01-04T18:57:00.003-05:00

There’s not much sillier than Jeff relaxing with earphones, emitting sounds that are clearly meant to correspond with the phrases in New York, New York by Frank Sinatra. This is not a guy from a particularly musical family, let us say.

Today’s purchase was an iPod shuffle. It’s the most affordable form of iPod by far, and if--like Jeff--you hardly care in what order your favorite tunes are broadcast, then it might just be the device for you. I spent a good part of the afternoon loading various albums--jazz, saxophone, Sinatra, Johnny Cash--into iTunes, then feeding them into his tiny iPod shuffle. It is, in fact, so tiny (smaller than a matchbook even,) that I’d fear for its disappearance were it not snugly plugged into a set of sizable earphones. Fiddly earbuds, in this case, need not apply.

(Now he’s singing Blue Skies, with Willie Nelson. I’m surprised I can tell.) I’ve discovered a website--The Fisher Center for Alzheimer’s Research Foundation--which breaks down the classic seven stages of Alzheimer’s, giving clearer cut guidelines and milestones. “Stage of illness” had been a tricky thing to gauge. Jeff’s process has been, all along, more forceful in its consumption of his visual capabilities than his memory per se. Hence, a cursory review of the seven stages sometimes misses the points with which I can identify, in his case.

But Fisher has helped me out. Assuming you consider it helpful that I can now place him at stage 6a in a process where stage 7 represents the end-game. Stage 6 is subdivided into a through e. And it appears we’ve crossed the border from 5 to 6 on the following donkeys: We can no longer be counted on to put clothes on in the right order, let alone right-side up, and speech is, not infrequently, having trouble coming out in an articulate sequence. (Eventually it does, but it’s often a bit stumbly.) Apparently, by the time we’ve traversed b through e of stage 6, we can expect him to “manifest overt breakdown in the ability to articulate speech.” We will also see an end to continence. There’s one I’m looking forward to.

I was a little surprised to discover, in reviewing the mean durations of the stages, according to Fisher, that we are not far off the averages. Which means (if we stick with the program,) that we’ll complete all the requirements for Stage 6 in approximately 2.5 years. At which point--in Stage 7--relative mobility becomes one of the leading predictors of timetable.

I hope I’m not too morbid. It’s difficult, if one has a mind for research, NOT to probe into this kind of thing.

Ultimately, of course, one cannot call these things anymore than one can predict the stock market, and I’m very happy that listening to Sinatra, and singing along, with a complete lack of regard for key, is a source of happiness.

we'll tak a cup o' kindness...

2010-12-31T21:09:00.001-05:00

I am concocting the perfect auld lang syne hot buttered rum. It’s a guid-willie waught, or a festive draught, that is. For reasons understood only (I presume) by my mammalian brain-layer, I’m having a rather nice New Year’s Eve at 8:50 pm, in the kitchen, in the company of quadrupeds. Tonight, all of them got bits of my salmon (leftover from lunch at Garry’s Grill,) but none got buttered rum. They’re relatively certain that’s ok.

The reason this is significant is that New Year’s Eve has, since the time Jeff’s brain devolved to little more than reptilian, seen me in a funk, and I’m just as glad to have broken with an apparent tradition.

I’m not saying it means anything for 2011 (though I won’t protest if it does,) but a light spirit is a thing of beauty and you might as well take one if they’re handing them out.

Jeff dozed through Easy A on Comcast-on-Demand, (a valid response, though I didn’t mind the low-demand entertainment...it was better than Eat, Pray, Pointlessly Self-Indulge,) and has now been pilled and tucked into bed. Hazel is keeping me company in the box-top from a carton of Harry & David pears, and Otis is harassing Chessie around the kitchen. Not nice. (No guid-willie waught for Otis.)

Now there is Peruvian music by Agua Clara playing, and dancing--not sitting--is called for.

Kampai, Slan, and bottoms up! Ok 2011...let’s see what happens...

Storm's a'comin'...

2010-12-27T21:37:00.004-05:00

I am enjoying a book by Jon Franklin, called The Wolf in the Parlor. At the 20% mark, I don’t yet have a good idea of what he’s going to conclude, but he is--at the point I’ve reached--struggling to come to grips with the nature of the ancient relationship between man and canine.

Most interesting has been a tangential trip into the tri-partite condition of the human brain. It seems, evolutionarily speaking, that the reptilian reflex-based version of a brain emerged first, followed by the more flexible and emotionally complex mammalian edition, while the primate addendum--with its ability to create cognitive models and formulate detached rational conclusions--is the Johnny-Come-Lately in brain styling. And apparently, we inherited all three types, one on top of the next.*

It is possible, following the logic of brain hierarchy, to conclude that most human angst stems from the knotty problem that all data--even if it’s the kind you’d clearly delegate to the primate brain--must first traverse the reptilian and mammal brains before it can even be considered. Hence, it (the data) is, by the time the primate brain even gets ahold of it, saddled with all the baggage of need and emotion that the reptilian and mammalian ascribe to it in passing.

I have a point. My point is going to be that this insight into the internal struggles of the human brain has shed some light, retrospectively, into some chapters of my life which, at the time, were hard to narrate in an articulate way. One such chapter in particular is the one about my foray into nursing school during the academic year ’02/’03.

I completed the first year of a two year program at Johns Hopkins with an almost 4.0 (felled by the fact that the A- I clawed my way to in Pharmacology conveyed only 3.8 points.) And I liked it a lot. When I withdrew, one day into my second year, it was a little hard to explain to my friends and advisor, not to mention family. But I tried, using terms like “writer,” and “time,” and “family.” Still it was vague. All I knew for certain was that I’d been hit by an unanticipated emotional tidal wave that no rational explanation could adequately analyze.

But I understood it in a primitive way. I knew that emotion had delivered a knock-out punch to reason. Now I can articulate that my mammalian brain knew something which my primate brain could not, and it forcibly took the reins.

You know how dogs can sense storms coming, or know--when she’s still two miles away--that a favorite person is returning? Or know that the word “walk” has flickered through my brain long before I’ve batted an eye? My inner dog sensed the storm system called Alzheimer’s, but all it could tell the primate brain was this: “You have to spend time with your husband.” My primate part understood that message, but didn’t see how dropping out of school was the logical response. So the mammal walloped the primate and did it anyway.

At the time--Fall of ’03--Jeff had the faintest hint of symptoms. But it was mostly irritability. Except for his failure to install the bathroom tile properly (a job which I took over,) there was nothing discernibly wrong with him. But the thing I’ve learned about dogs is, if they’re really going berserk--I mean surpassing any sort of baseline berserk--then you’d better pay attention, regardless of what seems logical. My mammal brain sensed the storm system and went way more than baseline berserk. It’s just that it wasn’t until a year or two later that I had an inkling of the type of storm.

This is, so far, my favorite quote from The Wolf in the Parlor, on the “triune brain”:

We weren’t individuals, we were committees--and, like all committees, we were given to inner uncertainty, dispute, and even feuding. We were the only creature in nature capable of ganging up on itself.

Which is exactly what it felt like at the time--my brain ganged up on itself. Nowadays, when I get particularly crazy or out of sorts I try to say something akin to “What is it Lassie? What is it girl?” Unfortunately, my mammalian brain’s language skills are still not much better than Freddi the dog’s. So, as the I Ching is always telling me, with the most admirable of patience, I just have to chill and trust the Sage. And possibly batten down the hatches.

*On the notion that the "triune brain" model is outdated or simplistic: well, probably so. But I still love this quote from Wikipedia:

In this sense, the triune brain (more properly, perhaps, the "triune mind") is seen as a highly simplified but powerful organizing theme. The statistician George E.P. Box once quipped: "Essentially, all models are wrong, but some are useful."

Be 92. Or 3½. Or at least just act like it.

2010-12-20T13:04:00.003-05:00

I will admit: I am not really all that old. I realize, it depends mostly on from which direction on a chronological timeline you’re looking, but my point is that I don’t usually have a self-image of oldness.

Nevertheless, there seem to be some fairly universal lateral changes in the quality of interface with the world that become apparent to most adults as they rack up a handful of decades, give or take.

Our good friend Bill stops by once a month or so to take Jeff out to lunch. Lately, he looks out the back kitchen windows at the five birdfeeders I’ve got stocked with seed, and says something akin to: “I can’t believe how much I’m into birds now. And plants. I find this very disturbing.” Bill recalls being aware, in decades past, of how this partiality to birds connoted aged person and how he, at the time, forswore such a future, but now reckons it was inevitable.

This was fresh in my mind last week when I sat down to knit the finishing rows into a hat. (Hats are what I’ve been working on lately. I invariably start off having committed some kind of planning error, such that the finished product would be unviable, could it even progress that far. I either misgauge the size, or don’t factor the right multiple of stitches for the pattern I intend to use, or--in a spectacular mistake that I didn’t notice until 2 inches in--I let the row spiral around the circular needles, creating an unstraightenable helix instead of the leading edge of a stocking cap. Just now I spontaneously switched to a rib pattern based on 5’s, forgetting that I’d cast on 72. Not a match.) But, back to the aforementioned hat which I did, in fact, complete. I sat down to complete it in a rocking chair. And I chuckled at myself, because it felt so good. Almost sensual, in fact, to be relaxed, sitting in a rocker, and knitting.

Without a doubt, I have the foibles of aging more in the forefront of my everyday thoughts than the average not-quite-50 year old. All I need to do is look at the adaptations I am continually making in dressing Jeff. Today he has on his new pull-on Sperrys, a t-shirt, and a half-zip pullover. The pullover is new. I grabbed a couple at Kohl’s thinking this might be a good step away from button-down shirts which can be buttoned in any number of interesting and askew configurations if lining things up properly is not in one’s skill set. The problem with the pullover is that it hangs a little long. This means that Jeff keeps noticing the bottom edge and being inspired to curtsy. So far, he has demonstrated curtsies to Olivia about 5 times and Becca maybe twice. This, therefore, may not turn out to be the perfect solution to dressing ease, but I’m always on the lookout for new ideas.

Some cats can dance.

2010-12-14T16:40:00.003-05:00

Yesterday, Jeff had a conversation with Chessie the cat. Chessie is a good cat--stout of stature, good of heart (mostly,) and only inclined to whine when you disrupt her poundage from atop your chest. So, as cats go, you might as well talk to her as to any. But, when asked by Jeff whether she knows how to tap dance, Chessie did not respond in any meaningful way. Becca, meanwhile, seated at the kitchen counter (unlike Chessie, who was seated in the chair at which Jeff was addressing his question,) did respond. “Are you talking to me?” asked Becca. “If you’re talking to me, I’m over here.” Jeff indicated that yes, he was talking to her, but he still said all this to Chessie, who did not assist in correcting him. As far as she was concerned, I’m sure, his behavior was completely appropriate.

Conversations with cats pose no problem. I wonder, though, about the ifs and whens of implementing other measures to which I’ve given pre-need consideration. When will I employ sitters? Should I investigate day care? I’m already concerned about leaving for more than the shortest of outings. Not that Jeff does much. I think the most pressing trouble he might get into would be locking himself out of the house while on a front yard stick-breaking expedition. Troublesome thought, when it’s below freezing. Should I move him downstairs? Yet? Don’t know that it would suit him. Don’t know how he’ll respond. But I do know that, if not before, the first time his visuo-spatial system fails to navigate the staircase, to hazardous effect, will be the impetus.

It is common wisdom, among the AD caregiver community, that most caregivers initiate any kind of change--day care, in-home help, placement, hospice--later than they should have. I completely understand why.

möbius-ity

2010-12-14T16:11:00.001-05:00

42 might as well be the meaning of life. It’s as good as anything anyone else has come up with, as far as I’ve noticed.

Today, after the usual pets and breakfast routine, I met a friend for tea and “breakfast cookies” at The Big Bean. We had a wonderful (but too short as usual) chat, then I bundled up against the wind chill and quick-stepped the 1/2 mile home. By then, Jeff had managed a shower without a shower-director. I noted the extra undies scattered around the bed, a rejected t-shirt, his washed-with-conditioner (instead of shampoo) hair, and the same old dirty jeans. Good enough.

We headed back out into the chill to tick the next item off my list--replacing the ceramic birdbath, whose basin had cracked from freezing water. Just before my immersible de-icer arrived a little too late.

The new birdbath top--positioned with hodge-podge imperfection atop the existing pedestal--is (with de-icer at work,) doing its job.

Furthermore, Otis the kitten will (I hope) soon pass the colon-load of paper, or whatever inedible he consumed, that prompted 2 trips to the vet and an x-ray in the past 3 days. The water heater, meanwhile, is back in operating condition after a day’s work by Yank the plumber yesterday, and our upstairs is once again, therefore, heated.

The thing that likes to drive me crazy on a regular and ongoing basis is this question: Is any of this of consequence? I think if I could send a letter back to 1973...have a little word with myself...deliver some advice, the letter would contain the following: First, I would list the areas in which the grown up me has a modicum of both skill and interest. This part is important, because that 11 year old had no clue what she liked and even less motivation. So I would tell her that she’d be a decent writer and had skill at language acquisition and usage. She should relax and not let math frustrate her so much...approach it with less fear and loathing and she’d be capable. She should stick, arduously, to her study of viola, and add in fiddle while she’s at it. Finally, she should steer herself in the direction of a helping profession--most likely in the area of scientific research. I’m going to have to anticipate that--being a tolerably bright child--she’ll ask what she’s doing heading into research if she’s good at languages and writing. So I will answer that question for her: She will not find a way to be useful to the world as a writer or linguist, so--while she should hone these skills as personally edifying--she will need to be a provider of value to the human race in order not to fret later, as an almost-50 year old, about adequacy of being the caretaker of an impaired spouse and the saver-of-kitties, who writes works that the world does not require.

But back to 42. Apparently I do what I do, because it is what the world requires of me. Or at least a sufficient part of it is. What I really think is that--if I sent that letter to the 11 year old, and even if she took it to heart (the lazy little underachiever,)--I would merely trip the existential feedback loop of Möbius, and end up exactly where I am. So, I don’t know exactly what 42 means, but I think it’s that.

but she got published, at least!

2010-12-08T18:26:00.003-05:00

Ok, I watched it. I watched Eat, Pray, Love.

I didn’t even wait for it to be released on Netfix--I actually told Comcast-on-Demand “Yes. Yes, you may charge me $4.99 for this movie. Go ahead. Do it.” I wanted to pick a fight, and I wanted to pick it with that movie. I’m not sure what I expected, but I obviously (not having even read the book,) needed to view the film before I could launch a cathartic quibble.

Later, I read some of the reviews of the book on Amazon. I wanted to see what people thought of the source material. There were, basically, two strains of comment: There were the 4 and 5 stars reviewers who admired Elizabeth Gilbert’s turn of phrase, and lyrical manner of describing nebulous philosophical concepts. (I can’t argue with such reviews. One need not admire a main character to rate writing highly.) Then there were the 1 star reviews, in which readers largely took exception to the narrative. It was the author’s behavior and autobiography earning their thumbs down, and--way with words or not--they were annoyed at having bothered with it.

I mention this about the book reviews for the following reason: What you get in the film is the narrative, without the benefit of the author’s stylistic ramblings. Hence, it’s hard not to render judgment simply on the basis of that: the narrative.

And here’s what I got from the narrative. EPL appears to be nothing more than a segment out of the life of a woman who--for no reason apart from existential angst, apparently--tanked a marriage to a fine, caring man, jilted a decent lover, and proceeded to spend a year (at her publisher’s expense, I believe,) navel-gazing and eating a lot in attractive and exotic locales. In the end she takes up with a third seemingly decent fellow, and publishes a book which--by dint of Oprah--is a financial success.

It is possible that, in the book, Liz Gilbert describes some sort of philosophical resolution. It is, in fact, likely that she does so. This was not conveyed by the film, and I’ll wager that that’s fair. Itchy people do not become un-itchy people by running away from themselves. (And here I speak from very personal experience.) Maybe Gilbert did rhapsodize eloquent in some form of denouement. But I wouldn’t believe in any real change. Surely she could spin a pretty philosophical picture with equal skill before she launched her odyssey.

Still, people must carry out their lives, and I have no personal reason to object to hers. But I do have personal knowledge and experience: That skittering about does not change, in any fundamental way, your manner of interface with existence. So, regardless of the book’s conclusion, I will draw my own on this review: I watched the film to null effect. Something ventured, nothing gained. But the landscapes were pretty.

A shoe holds more ounces than a jigger.

2010-12-06T16:19:00.001-05:00

The Nordstrom shoe salesman betrayed the usual amount of quizzical uncertainty as Jeff and I approached to look over the deck shoes in the men’s section. I may not be the most socially adept human east of the Mississippi, but I can read body language. Hmmm...why is this woman taking charge? If the shoes are for the dude, what’s with this dynamic?

But he too, evidently, had the capacity to catch on, and as I briefly explained that we were leaning toward laceless models, and he attempted a couple different prompts before Jeff put the proper foot on the size gauge, he understood.

Jeff’s Clark’s “UnStructureds” is a fine pair of shoes, and they served us well on our southwest sojourn, for train-riding and light hiking. But that’s why I brought that pair...for their sturdiness. Once home, he’s reverted to wearing the world’s oldest Sebago docksiders, with layers of leather peeling off, and laces that look like sun-dried and run-over jerky. The laces don’t much matter, is the thing. The shoes are old, relaxed, and go on and off without any need to tie or untie.

We ended up with a pair of pricey Sperrys. They’re somewhere between a classic deck shoe and a loafer, are soft of leather, and stout of sole, and should work for everything once I stash the diversionary beat-up or laces-required pairs in the closet, under Jeff’s lower rack of shirts.

For now I will help with the belt. For now I will help get the shirt buttons on even kilter. And occasionally run the razor over his neck, which is a hair-sprouting zone he usually seems to forget about.

It was not a bad day to be at the mall. Christmas shopping is, of course, in full spate, and the California Pizza Kitchen filled up with lunchtime diners, shortly after we started on salad and pasta. Still, it was Monday, early, and not bad...especially when you are free to look around and think Ah...Christmassy-ness, without having any pressing agenda of your own. At such a pace, I could happily snag a couple of stocking stuffers at Crate & Barrel, in addition to a jigger--something which I have heretofore lacked. A jigger is the amount of rum you add to a hot buttered one (rum, that is.) Though I had ascertained that a jigger is approximately 3 tablespoons, depending on the relative generosity of your bartender, it will enhance the experience to make it using the proper measuring vessel. As it will enhance our shoe-wearing experience to not have to re-tie laces every 15 minutes.

Eye be home for Christmas.

2010-12-05T13:45:00.001-05:00

As I mentioned in the last post, my right eye had a run-in with a vine and took one for the team on Thursday, in the process of helping me get Otis out of the tree. As of today, Sunday, except for some watering, light sensitivity, and a minor burning sensation, I’m functioning as normal. Mostly.

I cannot recommend corneal scratches. Like many body parts that you don’t give that much thought to as you go about your daily business (feet, knees, fingertips, teeth...,) do one an injury and you find that its incapacity renders you near-useless for days. But, after an intermittent pirate eye-patch, indoor sunglasses, antibiotic drops leftover from someone’s pinkeye, and lots of doing not much, it is with great gratitude that I welcome my right eye back to the world of useable body parts.

This weekend--the first in December--seems to be the one for getting the Christmas game on. As of last night, numerous houses in town had sprouted an assortment of carefully or carelessly (mostly somewhere in between,) lights. Hence, I did mine today, taking care that the job did not involve any peripheral objects ready to take potshots at my face. I don’t do much--just some strings of white lights more or less following the contour of the front porch and its railing. Additionally, we bought a tree and stuck it in a washtub of water on the back patio. Voila...I am maxed out! Until such time as I bring the tree in the house.

Susan Reimer, a columnist for the Baltimore Sun, opined this week that she would never--no matter how weak her motivation--slack off on the holiday fussiness, due to the fact that she perceived such a slow-down in her mother to have represented a slow fade of vitality. And maybe it is. But I don’t plan to worry about it when the time comes. I’ll fade if I good and want to. Meanwhile, it is most fortunate that I set the holiday bother bar very very very low for myself from the get-go, and have never upped the ante.

It is with equal measures of wistfulness and wry chuckling that I think about certain images that so tantalized me as a kid and hopeful romantic. Holiday special magazines, in which the snug log house in the distant snow-frosted vale, glowed golden-warm at dusk. Inside, a festive garland hugged the banister, while mom (that would have been the future me,) greeted dad (that was the unsubstantiated future mate with a twinkling eye or two) in a kitchen with a couple not-too-aggravating children and a pleasant pet or so. The funny thing is...as I stand in my kitchen looking across the eating table toward the stairs descending, mid-house...it looks almost just the way it was supposed to look. Except there’s no garland. That would be just too many pine needles to sweep up later. The pets are there though, and sometimes so are the children--they’re just a little overgrown. As for the dad...sometimes his eyes do twinkle. It’s a rather unfocused, uncomprehending twinkle, but then, we’re not in a snow-frosted vale either.

I think I'll take the finger in the eye.

2010-12-02T18:25:00.002-05:00

My worst residual problem is eye pain. But with a salt water rinse, and some leftover pink-eye drops, I hope I’ll be fully binocular by morning.

See, here’s the thing about the anatomy of the 12’ no-man’s-land (aka county right-of-way) behind our back fence: It is full of huge bamboo (flute-makers may apply,) a couple decades’ worth of fallen limbs, and vines to make Tarzan proud. I could have picked a more agreeable site to spend 6 hours of the day getting a kitten out of a tree.

But Otis didn’t ask my advice before scampering 4 feet up an old silver maple, then thinking hey cool, and going higher. Twice, actually, before getting to the first crook and realizing he was completely out of his league. So he pretty much spent the next 6 hours crying piteously, while I attempted to get him down.

Becca was home for the first couple hours of effort and, after much coaxing failed, we implemented plans A and B. A was my Little Giant ladder. The only extension ladder I can manipulate without dropping it on my head with unfortunate consequences, or breaking a window. Sadly, it did not extend enough, and put us (standing on the highest safe rung) just over half-way there. So on to Plan B. After much detangling of line from itself and the aforementioned flora features of the back lot, we succeeded in heaving a bear bag (used for suspending your food, safely away from bears, on camping trips) over a branch near Otis. Then, we pulleyed up an open-topped picnic basket, enticingly loaded with a cup of tuna. He did not care to get in that basket. Barely even gave it a passing thought. Then Becca had to go to work. I had to take a break. Still, I didn’t want to remove the option, so I tied an orange juice jug, partially filled with water so that it would just be outweighed by Otis, to the other end of the line, and went to do some necessary errands.

When Jeff and I got back, Otis hadn’t budged. I brought 100 feet of poly rope back with me though, and I doubled and knotted it in such a way that a daring and agile person might use it to climb enough higher than the ladder permitted to snag a cat. Once at the top of the ladder though, I found myself less daring than required, and returned to the drawing board.

So did my Mom, who--learning of my plight, and knowing me to be, essentially, an army of one--came to help. We tied a sheet to the tree, and she held the other corners while I ascended the ladder and attempted to push Otis from the other side with an extension broom. Alas, due to the angle of the tree, and the thickness of the underbrush, there was no means to connect sufficiently brush-to-cat, and Mom had nothing to catch in her makeshift fireman’s net.

Mom left because she had to. I wondered, via text, when Rachel the tree-climbing wonder-daughter might be able to perform a rescue. But, being a real-life employed teacher of children, there was no way for her to get here by dark, and I was left to ponder. And fret. In installing the rope-which-I-couldn’t-climb, I’d removed the escape basket. That seemed wrong. I couldn't give up for the night with no such option in play so, taking a tip from the internet (go net!) I re-threw the bear-bag. (This took about 20 tosses, and as many detanglings.) I got it. This time I hoisted a laundry basket--the floppy kind with two handles. With the tuna, of course.

The nice thing about the floppy laundry basket was that it showed a greater willingness to snug up close to the branch, in a way that the stiff picnic basket had not. Before I’d even gotten my orange juice jug counter-weight tied to the other end of the line, I saw--in addition to the shadow of the tuna container in the bottom of the basket--four paw shadows. I did not waste time. I lowered the basket-kitty contraption and snagged a kitty who was never so glad to be apprehended.

Oh, my eye. It was on one of the about 60 or so trips up the Little Giant that one of those ubiquitous vine or stick things poked me in the right eye. It still hurts, quite a bit. Otis is sacked out on the dog bed, having been properly cuddled and fed. I do not wish for him to go outside ever again. I’m afraid he will.

Jeff used to propose that cat brains looked as follows: One neuron, dangling by a thread in the middle of the skull. I surely hope Otis’ neuron absorbed some aversion therapy about trees today.

on not forgetting to remember everything

2010-11-30T19:58:00.001-05:00

Today Becca and I almost lost our newly purchased socks and tights at The Fresh Market grocery store. A composite of what each of us was 97% certain we remembered suggested that the small shopping bag from South Moon Under (an overpriced, except for socks, boutique,) disappeared somewhere between our entering Fresh Market with a double-decker two-basket shopping cart, and getting to the check-out. We found it a bit surprising that someone sneakily lifted our bag while we were selecting apples, or considering yogurt, but it was the only plausible explanation.

Still, once we got home and realized we were without hosiery, I called the store to see if such a bag had mysteriously turned up. Not yet, I was told, but they took my name and number. Within an hour the call came. Our bag had turned up in a random abandoned cart in the store. This meant that during the two and a half minutes that Becca and I were both in the ladies room at the same time, Jeff had managed to switch the cart he had been entrusted to stand with for another empty cart--identical except for the presence of our socks bag in one, and its absence of the other.

The most intriguing thing about this for me is not that it happens, but how things like this seem more likely to happen than not, given half a chance. Not that we like to blame Jeff too much--neither of us, after all, thought about the socks bag until we got home--but it is illustrative of the concept that I’m more apt to slack off in my diligence when I have a fellow Jeff-watcher along on the outing. I stop trying to remember everything I might ostensibly have the slightest cause to remember.

It was just as well anyway. Becca wanted everything bagels, which we’d forgotten on trip #1, and I also grabbed a couple canisters of wipes, which are useful for cleaning the floor up after Otis the kitty, who--when he poos--aims about 18” north of his litter box. Bad kitty.

strides, and life as normal.

2010-11-28T12:21:00.001-05:00

Last night, I went to bed leaving Gabe with nothing but the advice to get his stuff organized for this morning’s Amtrak ride back to Connecticut. Remarkably, as I discovered this morning, he’d done exactly that. IPod, phone, and computer were all charged and stowed, clothes were re-stuffed in the duffel, and his college keycard/i.d. was clipped to his jacket. Oh, and his retainer was fizzed clean and back in his mouth. As we got in the car he asked me if I had his train ticket. (I did.)

Now he is northbound, by rail, and one Fall term more grown-up. Next Year has clearly been a timely topic at school, as many of his group plan to continue as full-fledged Mitchell College students next year, and, indeed, we got a related pack of info by mail a couple weeks ago to keep parents in the loop, as kids get their records in order. But I had barely broached the topic upon his arrival home when he replied, with unequivocal resolve, that he would stick with Plan A: Finish this year at Mitchell, then head off to Guilford in North Carolina to study creative writing, Japanese, and an eventual semester abroad in Japan. No waffling on this it seems.

Meanwhile, this morning I ventured out the back door without a jacket. Otis the kitty had zipped out for his morning scamper and seemed--in this late November dip below freezing--to be ready to come back in. He squinched through the fence and around to the front yard, where I apprehended him at a moment during which his urge to scoot and play was offset by ambivalence about the air temperature. But then we--Otis and I--found ourselves at the front door, which I had not yet unlocked from the inside. Drat. Carry the cat around back, or ring the doorbell for Jeff? Luckily, Freddi the dog would not allow Jeff to ignore the doorbell, but he positively could not process what to do once he arrived at the front door. I stood there, clutching the kitten for a moment, as Jeff stared through the door panes gazing at apparently nothing, which was located somewhere beyond my right shoulder. Freddi, in the meantime, wagged her tail at me, wondering why the heck I was not coming in. So I raised my voice to insulated glass-penetrating volume and hollared “Open the door!” Twice or so. Finally, recognition dawned and Jeff did exactly that.

Tomorrow, Rachel’s back to teaching, Gabe and Olivia back to school, and Becca into work as usual. Jeff will get something other than a peanut-butter sandwich for lunch.

Capes R Not Us.

2010-11-19T16:02:00.004-05:00

I got a mini-startle as I drew back the shower curtain this morning thinking to step in. The scene resembled what you’d see on-set, just after Norman Bates had carted off Janet Leigh, shower curtain and all, with the following critical cast change: Janet’s role was being played by an alien with pale aqua blood.

Well, I was taking a shower anyway, so it wasn’t hard to clean up. But I will note that a full 33.9 fluid ounces of Target brand dandruff shampoo does make the shower floor a mite slippery. And it had spread quite nicely, dripping as it had from the higher of the two metal accoutrement baskets we have appended to the shower stall wall. Because it had been placed there improperly closed and upside down.

So one of the things we did today was buy Jeff some more shampoo. My goal was prevention. What kind of bottle would one either be most apt to close properly and/or least likely to replace upside down? Not a boxy cap of the type so common and popular for reasons I don’t quite grasp. But since I’ve been giving Jeff anti-flaky shampoo, that limited our options right off the bat, and a small bottle of Selsun Blue, with a normal sort of round cap, seemed the best bet. I even performed a small assessment right on the spot: “How,” (I said,) “would you place this bottle on the shelf? Like this? (upside down) or like this? (right-side up.)” “Like that, I guess,” replied Jeff, choosing correctly. And, in fact, it would take a bit of a balancing act to place it the other way.

It’s the kind of little accommodation I make daily. Another of today’s errands was a foray into Eastern Mountain Sports, in search of a light (but not too light) mens’ jacket. Here was my starting parameter: Can this be fastened without me there to do the zipper? There are ways. There might, for example, be auxiliary snaps, or, even better, velcro. But not, alas, in a jacket of the right weight. Yes for heavy coats, but jackets were stubbornly determined to exist only in zip format. So, on the fly, I came up with a new option: How about a half-zip? If the zipper-starter doesn’t need fiddling with, pulling the pull should be no problem. Such things, double alas, did not exist but in the lightest of fleeces. Something in-between was not to be had; not today anyway.

I’ll keep looking even though it is, in truth, something of an arbitrary goal. The thing is--even with velcro, snaps, or a half-zip--you’ve still got to put the jacket on properly in the first place.

Case in point--an anecdote from this very morning: Jeff headed for the stairs, post-elliptical trainer. “What are you after?” I asked. (Even though I knew the answer since he was wearing a t-shirt and had taken his button shirt off to exercise.) “A shirt,” he replied. “You left your shirt in the kitchen,” I said. “No,” said Jeff. “Not that shirt. That shirt is like a cape. It’s like a Superman cape. I can’t wear that shirt, I need a regular shirt.” Because I live here I knew what this meant. Because I’ve watched Jeff try to put on shirts. He must have tried to put it on (pick one) upside down, or armless, or head in the armhole, or without unbuttoning first. So I said, “let’s see,” and helped him thread his arms in one at a time. Then I started the buttons. He pulled the two sides of the lower placket apart a couple times as I buttoned downward, trying to demonstrate that this was a cape, not a shirt, but finally realized--with a sort of an I’ll be darned expression--that it was, in fact and when donned correctly, a shirt.

There are lots of things that continually surprise me about this brain dysfunction process. One is this: Why is there no sort of meta-analysis going on of the problems we encounter? Why would you not even think your wife asking whether it’s okay to put a shampoo bottle on a shelf upside down is weird? Or not think: wait...a shirt is never a cape. How does it make sense for me to think this is a cape?

But he doesn’t think this stuff. I guess it would be too multi-layered for an Alzheimer brain to take anything except at face value.

Now I’ll check REI online for a heavy-ish half-zip. I will not bother looking in the cape section, because I know we don’t want that.

say what?

2010-11-14T19:44:00.005-05:00

Jeff loves to listen to a Bill Bryson book. Any Bill Bryson book. But The Mother Tongue: English and how it got that way has probably (by page 90 out of 245) been our biggest challenge to date.

We are firmly into Chapter 6: "Pronunciation." I am already reading with the exaggerated enunciation of a Henry Higgins protégé, but that isn't quite doing it. I try, for example, to read the following passage:

"...when bits are nicked off the front end of words it's called aphesis, when off the back it's called apocope, and when from the middle it's syncope."

The reading of it doesn't go off quite as smoothly as vanilla ice cream. Rather, I carefully iterate a key term--apocope--and the following conversation ensues:

Jeff: "what?"

Me: "apocope."

Jeff: "escarfee?"

Me: "No, ay-pah-co-pee."

Jeff: "Oh, calumny."

Me: "NO...AY-PAH-CO-PEEE!"

Jeff: "Right, ok...papeerollee..."

Me: "shuddup."

Mind you...my last line in the above dialog was completely uncalled for, and I apologized right away. But this illustrates the basic challenge of this book as read-aloud material for us. It is, compared to some of Bryson's lighter narratives, quite academic and quite full of segments which call for a keen ability to differentiate amongst subtle distinctions in pronunciation, as well as an ability grasp certain points by picturing spellings in your head as I read. Hence, as we're dealing with the twin deficits of so-so hearing and seriously compromised processing capacity, I keep wondering if we should persist, or switch to something a little easier where getting the gist is generally enough.

But Jeff continues to want to listen, and does not seem to frustrate. That's all me. Plus, I'd like to read it, and this smallish trade-paperback with undersized print is neither going to stay open nor be legible on the elliptical console, so read-aloud is my best shot.

Besides, Chapter 7 is not called "Pronunciation," it is called "Varieties of English." Chapter 8 is called "Spelling." Maybe we can skip it. And maybe it doesn't help that we tend to combine reading time with 5 o'clock glass o'wine time.

But for now we will persist. Besides, when we come to unfathomable words in Welsh or Gaelic I have the enormous privilege of pronouncing them however I like, and Jeff just laughs.

the in-betweenies

2010-11-12T15:19:00.003-05:00

I'm in the caregiver in-betweenies. It's a term I pulled out of the air, but I think it does an adequate job of connoting both the wiggly restlessness and the inescapable vague limbo-like doldrums of the stage. Except for the afternoon biorhythmic slumps when nothing trumps a nap, I have health, curiosity, and energy to share, and I need to remind myself that wheel-spinning is neither good for the wheels nor the ground.

At the same time, I can think of almost anyone else I know, and imagine him/her saying "I'll take some of that," when she gets a whiff of the relative placidity of days in which making the coffee, freshly ground beans and all, can be an anticipated ritual, where grocery shopping can be gently interlaced with a salad at Punk's Backyard Grill, and where--in the early evening--I pour out two ruby glasses of La Vieille Ferme Farmhouse red before we sit down, covered in pets, to read a chapter of Bill Bryson aloud.

Yes, I am fortunate to have a generally pleasant-natured caregivee who, at the moment, is taking his afternoon nap. Afterwards, he will come down and sit quietly in the kitchen chair to await the next activity I suggest. (Most likely, we will be at roughly the point of Bryson by then.)

I read something in AARP yesterday about how caregivers should consider doing the hands-on stuff (bathing, dressing, etc) themselves, reserving the do-nothing interludes (naps, quiet sitting, breaking sticks in the front yard,) for hired attendants. This is because doing something...doing anything...tends to be a much more personally rewarding way to pass time than just being there, as the person in charge in case anything goes amiss.

I can, of course, take the "being there" segments of the day and use them to (for remarkable example) write! I have made minor progress this week, compared to the inverse of minor progress (which looks something like 1/minor progress, and must be measured with an electron microscope) which had been the grand total for the previous month or so.

Furthermore, no matter how I squint, I can't really see hiring anyone as a rational choice for now. We're doing just fine, and no one is overly stressed. It is when the caregiver becomes overly stressed that it is time to pry open the doors of the hired help magazine. I assume (because I remain more or less grounded in reality) that incontinence and greater functional blindness are in our future, and it is that horizon whereupon I imagine the hiring will occur.

In the meantime...no matter how much you sometimes don't like the day to day bother of going to your job, I do think there's a bit of a self-winding aspect to the action of kicking yourself out the door and interacting with the other humans. I sort of have to wind myself--not by obligatory activity--but by jumping up and down, and giving in a bit to the wiggly restlessness of the in-betweenies. Then I tell myself this is good...this is a moment to write the silly book...and I tap out a line and a half.

And that is what life is like. You tell yourself...eh, I'm doing ok with this, aren't I? And most likely, you are.

grounded but ready...

2010-11-10T22:09:00.003-05:00

I didn't want to buy the wrong suitcase. Which is how it came to pass that I spent a creditable chunk of both today and yesterday researching specs and reviews of a variety of roll-aboards.

I've had my navy blue L.L.Bean model at least since 2000, when the entire family set out for 10 days in England pulling (with the exception of Jeff--always an inveterate duffel lugger,) 5 navy blue international regulation carry-on sized cases, and nothing more, on the pack-less-than-you-need theory. I recall waffling, to the last minute, over whether to stuff in a zip-front wool blend sweater, and being mighty glad that I did since I wore it about every July day we were in the UK.

That case has accompanied me on quite a few jaunts since then, so it was with some dismay that I noted--as I stowed the luggage in our Amtrak Capitol Limited bedroom--that sizeable chunks of a wheel from my suitcase were turning up all over the industrial berber low-loop carpeting of the compartment. It was the outer shell, it turned out, of a wheel made in two layers, and I spent the remainder of the trip pulling it on the remaining inner portion of the wheel. Not difficult, but a wee lopsided.

I am somewhat committed, it seems, to flying with just carry-ons whenever I can. I realize that the rest of the world is also, which makes for some overhead compartment competition at the worst of times, but I knew one thing--that I required a replacement case that would easily pass the ubiquitous airport "is your carry-on small enough?" test.

I checked Amazon, I checked Travelsmith, I checked Magellan's. Today we even popped by the AAA office to see what was on hand, and inspected a few things at The Leather Store. (Which should actually be called The Luggage Store since it's way more about luggage than it is about leather.) I ended up placing two orders--one with Magellan's, one with Amazon--and should, by next week or so, end up with an Eagle Creek Hovercraft 20 roll-aboard, which--though a little short at 20"--compensates by being 16" wide. Additionally, I will make a PacSafe backpack serve as my "personal item," since it's small enough to squish under the seat, but large enough to hold a netbook, reading material, and whatever other sundries I need to transfer into a smaller Eagle Creek Travel Bug backpack once I reach a destination.

The thing that I don't have, is any travel plans whatsoever. I don't see this problem being correctible before Spring, and not in any big way, at that. When the new stuff comes, I may just have to fill it up with laundry and a cat and tote it around the house in the spirit of (but lack of, in any reality-based way) adventure

maybe it's silvery, not gilded.

2010-11-06T19:59:00.002-04:00

Two weeks ago, in the moments during which I was concluding that the top bunk of the bedroom compartment on the Amtrak Southwest Chief made for an ungainly platform from which to help Jeff with his middle of the night bathroom needs, I became aware that I'd shifted. I don't mean that I did the shifting in that moment--in fact, in the top bunk, I could barely shift at all. The headroom allowed for crunches, but not sit-ups, and one had to perform a motion much like that of a pole vaulter twisting her body so that she'll land feet first to even consider climbing down from the bed.

No, the shift I noticed was something that had already happened, but I'd yet to take heed of and shake hands with it. It was a particular milestone I'd reached in the gradual translocation of emotional tectonic plates that comes with Alzheimer's spousing. I looked down from that fold-up bunk and thought two thoughts: The first was that it would be easier and more comfortable if we both just squished into the lower bunk. The second was that I was happy to do so because it was easier to do my job from close-up. The job of caregiving. The job of helping find the bathroom and providing middle of the night reassurances to a disoriented mind.

It may seem a little strange to say that I've finally shifted, after 6+ years of diminishing cognitive function on Jeff's part, into the role of caregiver. I've been doing it for some time, 'tis true. But I didn't own the job. I didn't particularly want the job. And approaching the caregivee with the emotional closeness that enabled me to contentedly switch bunks was the new thing.

When a life partner slips from your grasp such that he is sometimes not, then rarely, then never your mind-mate again, you might, like I have, start to seal off the emotional receptor places that were shaped to receive feedback from him. Those spots are safely coated with several thick layers of New-Skin®, liquid bandage for the soul, and--like that gilded room in Captain Von Trapp's fancy chateau--nobody goes there, dammit. There are some rooms in this house we just don't use.

So, when I felt the impulse that propelled me (carefully and stepwise) from the upper bunk to the lower (other than the practical one,) I recognized it as a new row of emotional crops. Ones that have been growing, and emitting tiny whiffs of their usefulness since they sprouted, but not so much that I really understood how they worked or what you could do with them until that moment. This crop is not from the gilded room (nobody goes there, still,) but they come from another room, almost as nice and certainly better outfitted for the task at hand.

I didn't know I had that room, and now it seems I do. And it also seems that it was on our trip westward that the construction crew ripped down the final piece of plastic dropcloth, allowing me ready access. I still don't particularly want the job, any more than I want presbyopia, or pets with skin allergies, or bamboo poking through the fence in the backyard. But it's my job, and I appreciate the tools.

No rolling. Lots of shaking and rattling.

2010-11-04T22:02:00.005-04:00

The two porcelain pedestal sinks in our master bathroom have rattled since installation. I can't remember whether Jeff or Yank the plumber hooked them up, but it was after I tiled the floor and walls (in the epoch where, of necessity, I acquired many new skills.)

A pedestal sink consists of two parts: the pedestal and, obviously, the sink. While the pedestal provides a supportive stand, the two pieces are not attached to each other by any means but gravity. For true stability, the sink is meant to be fastened to the wall it abuts. Ours never were.

If you bumped into them (a normal occurrence for us) they rattled. If you scrubbed them (a normal but less frequent occurrence) they rattled. They rattled with a deep but clanging hollow chime--or sometimes rumble--of porcelain on porcelain. And they banged into the tile wall, which was more of a boomity boomity thing. It was an unsatisfactory and somewhat disconcerting condition for sinks.

When I learned (via our handyman who never showed up again) about their improper installation, I began to puzzle over what I might do. The bathroom framing had been done when Jeff was on the verge of losing his powers. Had he, correctly, provided a plank behind the now-tiled wall? He didn't remember, of course. He'd been faltering enough by the time I finally tiled, that it never occurred to him to mention the need for bolts.

Yesterday, I detached the J-bend from the wall, shut off the supply valves, and unhooked the supply pipes which run from the floor to the sink. Then, after carefully walking the sink/pedestal assembly away from the wall, I drilled through the tile. The initial hole was the hardest, requiring the pin-prickiest of drill-bits, followed by sequentially larger bits until I'd achieved two nice half-inch holes. Then, I plowed in further to see what I would hit. Drywall, then air, then...wood? Yes, wood.

I walked-rocked the sink back into place and, with a socket wrench, ratcheted a nice fat hex-headed bolt and washer through each hole (the holes that were always there) in the back of the sinks.

The solidity of the now rattle-free sinks is a satisfying thing, indeed. Next up--replacing my cruddy stiff faucet handles.

Gravity. It's real.

2010-10-29T11:38:00.002-04:00

I am a little amazed by the number of people who visit the Grand Canyon and completely ignore the availability of railings such as this one. On the other hand, I recall Jeff himself setting out for rocky outcrops on hikes of yore, and sneaking careful peeks over a few precipices myself...but the GC is special. In the sense that there aren't too many other cliffsides where you have the opportunity to achieve terminal velocity before you reach the bottom. But here it's the norm.

After getting "home" to Flagstaff yesterday, I did a little online research into Canyon fatalities. Sources differ a bit, but it seems that no more than a person or so tumbles off each year, whether accidentally or on purpose. A more typical cause of death in the park is deciding you can hike to the bottom on your liter of Deer Creek bottled water. In point of fact, you probably can. What you can't do is get back up, and--without having carefully provisioned yourself with fuel, water, and proper clothing, you stand a decent chance of meeting your end due to heat stroke or other unfortunate system failure. Consequently, posters highlighting the dangers of hiking unprepared, the surprising rigor of the area, and demises of otherwise healthy individuals are prominent and ubiquitous.

Nevertheless, I'm surprised more silly people don't fall in. At our very first overlook yesterday we saw plenty of humans casually strolling the edge, including one who appeared to be about 6 years old (while his mother stood calmly on a rock nearby. I don't know...maybe they had other children and didn't need that one.)

Now I remember a time when Jeff and I hiked with friends in the woods of Pennsylvania. We came upon an overlook which had been carefully and responsibly railed, so as to give hikers a good safe look. A couple had climbed over, for no apparent reason. You could see just as well from inside the railing. The man held out his hand thinking surely I would want to join them on the other side. Here's the thing: I had a nine month old baby in a backpack on my back, and this couple thought I'd want to climb--already unwieldy and top-heavy--over the safety of the railing. I said no thank you.

I guess most humans are as agile and dextrous as they think they are. I just like to err on the side of caution.

a two-town tour.

2010-10-28T00:12:00.003-04:00

Thoughts about Sedona: Geologically speaking, it is eye-poppingly stunning. I cannot think of another time I've said "yow!" or similar at every bend in the highway. I laughed when we passed a sign that said "Keep Sedona Beautiful." It meant don't litter. But I asked "how could you NOT keep Sedona beautiful?" and Jeff said "Nuclear explosion?"

Still, I did not come away with any good ideas about why you would go to Sedona other than for rock-gawking. It seems less a town than a series of clustered tourist shops, artfully placed at bends in the road, such that if "Mystical Astrologer" doesn't suck you in, then surely "The Pink Java Cafe" and its friends will. I am not every tourist-dependent municipality's dream come true. When I see another sign touting "Real Southwest Crafts and Jewelry!" I don't say "wheee!" and veer into the parking lot. Instead, I say, "Dang, there's gotta be a place to buy apples around here somewhere."

Then we went to Jerome. Jerome is about 25 miles west of Sedona, up some rather impressive switchbacks, and was, historically, a copper mining town. It is, as far as I can tell, populated by 90% tourists, 2% artsy shopkeepers, 4% long-gray-haired vintners, and 4% guys who looked like they got back from Nam in '71 and began to assemble flotsam and quirky jetsam into precarious shacks on 45 degree sloped, rocky hillsides. I could not help but sense that they were all chortling wryly behind their rusty pickups, and thinking "let's be weird for the tourists, then empty their wallets."

It was a good day of driving, and having a car--which we rented from Hertz at the Flagstaff Amtrak station--helped a lot. Today, our carriage pretty much turned back into a pumpkin by 4:00pm, so I brought Jeff home to the Inn, gave him a glass of wine, squished into the almost-big-enough-for-two chair with him, and played That Thing You Do, on dvd. Then I tucked him in bed. I hope he will still manage to sleep later than my 5:00am headache-avoidance wake-up call. Tomorrow, the Grand Canyon. The walking (down the vista trails) will be two things--a delight, and a surefire way to cash in our energy chips early.

nyet roomette.

2010-10-27T01:07:00.002-04:00

We have a roomette. A roomette is one of many tiny convertible compartments running along both sides of a sleeping car, with an aisle down the middle.

It is on something of a whim that we are in one at all. This particular leg of our trip--Lamy, NM (the point of embark/disembarkation for Santa Fe) to Flagstaff--began at 2:24 this afternoon, and we will arrive in Flagstaff just prior to 9 pm. So, even at the very moment I was booking it, I wondered why I would pay even a little extra as opposed to just having seats in coach. We will not, after all, be converting our two facing seats into a bottom bunk, with the upper bunk lowering from above, like one of those baby changing stations in restrooms. This is mostly why people have roomettes. To more comfortably pass the night.

I think we have it because I was hoping we would nap, and I was thinking we might nap better in a compartment. But between a lengthy service stop in Albuquerque which we used to run to an ATM in the station, to the scenery of New Mexico's rocky crags, to dinner in the dining car at 5 pm, we have scarcely shut an eye. We will be, no doubt, in fine form when we do disembark in Flagstaff.

Having spent two nights in a "bedroom," Amtrak style, I can hardly imagine passing the night in this roomette. Well, I can imagine me doing it--I still like tents, after all--but I cannot imagine managing Jeff in one. I peeked in a few, during our other two nights aboard, that were in sleep mode. I'm not sure, actually, how one accesses the top bunk without opening the compartment door and protruding into the corridor while climbing. And, at that point, you're faced with the same lack of maneuver room or headroom I experienced in the bedroom top bunk. There is a bathroom at the end of the roomette car, much like what you find on an airplane, and several more down the stairs. Also downstairs are a couple of shower rooms, which--though communal--are of sufficient size that you don't have to sit on a potty to use them.

But--in our case--the more important disadvantages are that we'd be hard pressed to dress Jeff in such a space, I could not conveniently help him to the bathroom at 11, 1, and 3:00 at night, and we cannot see what's out the window on the other side of the train, because that's someone else's roomette, and they are evidently very private sorts who have the curtains drawn. In the bedroom, by leaving our curtains open, we had a good view out the windows in the corridor (as bedrooms line only one side of a sleeping car.)

So, while economizing with a roomette seems clever, our life has become the sort in which what we must do dictates what we can do. We can take an overnight train trip because we can book a bedroom. If we could not book a bedroom, we'd have to do something else.

It was, by the way, about 30º F in Santa Fe this morning when we set out, after breakfast, for a stroll across town. The purpose was to get liquid bandage for my cracky fingertips at CVS. The entertainment was crunching around on the frosted grass, and checking out the icicles dripping from a picnic table in the park.

we slow down...

2010-10-25T21:54:00.005-04:00

We arrived in Santa Fe yesterday about 3:00 pm, and spent the rest of the afternoon/evening proving a fundamental rule about travel with Jeff: If you decide to march across town in search of rainwear, do not think you will have an ounce of energy left to spend getting to dinner.

In fact we should have skipped dinner and merely taken advantage of what nibblings we could wrangle up in the Inn on the Alameda, our 2-night Santa Fe home. It was a 15 minute walk from the Inn to El Farol (the oldest restaurant and cantina in Santa Fe) where we ordered wine and tapas, but Jeff's disorientation grew exponentially by each step, and I was carefully keeping him from walking into sign-posts (without 100% success) by the time we arrived at the restaurant. But we ate, and it was good. He will remember zero of it, as he was in the twilight zone.

Usually, when we walk, (especially in unfamiliar territory,) I try to stay on Jeff's left where there's a functioning ear and none of the hemi-neglect which occurs on his right. I either hold his hand or his arm. When the going gets tough, it's more like I'm clutching his elbow. I can gauge with a high degree of sensitivity how tired he is growing by how tightly I must clutch, and how difficult the walking becomes.

You know how it is when you end up with a grocery cart with one front wheel that only wants to roll east, and one rear wheel that insists on a counter-clockwise arc? That's what it's like to keep Jeff moving in the desired direction at anything approaching a walking pace. I end up as tired and in need of retreat as he does, with the difference that I still know where I am and why I'm there.

I like Santa Fe. Ok, I'm not completely overwhelmed by it like I thought I was supposed to be. Probably I need to see a lot more of the surroundings and natural beauty to grow a full appreciation. Certainly the architecture was novel compared with other places I've been. I like it. I just don't like it better than plenty of other places. Somewhat ironically, the only shopping we've done here is microlight stashable jackets from the local REI (we needed them for today's unfortunate weather,) and, from Whole Foods Market, fair-trade warm hats and a few apples. Well, not quite all...I bought earrings for the girls from a shop selling native made jewelry on Canyon Road, a linear enclave of artists' studios.

Despite today's being our only full day here, I've gotten a good feel for our limits, and we took the day on with little to no agenda. That worked. By 7:30 pm Jeff was well ready to hit the sack. Tomorrow: Back on the Southwest Chief, for a daytime-only ride to Flagstaff. But the morning agenda will be a jaunt to the closest drugstore to get some liquid bandage for the finger cracks this otherwise-welcome dry air is exacerbating!

Fog-man: He cometh and goeth.

2010-10-24T21:27:00.002-04:00

Friday night on the train was a bit dreadful. I didn't experience it as completely dreadful though, since it was my first night of sleep deprivation in some time, and--in a way--I enjoyed the opportunities to see...Pittsburgh, Toledo, and some other random trackside burgs by night. Furthermore, breakfast and coffee brightened Jeff's mood and cognitive profile by enough that I ended up feeling optimistic.

Still, while I am very happy to be on the Southwest Chief myself tonight--Saturday--Jeff is looking and acting peaked, and I'm concerned that the experiment--2 nights by train--may have been pushing his limits. I hope that even though neither Santa Fe nor Flagstaff are home, we can do enough recuperating in a plush and sleepable bed that we'll reestablish something of his status quo.

Here's a difficult thing about the aspect of a human impaired by Alzheimer's: I see what looks like a down mood, a heavy head, a wan smile...and I want to call it depression, or a sad mood, or a heavy heart. And I want to consider the significance of those things as points relative to the norm--the norm being not-affected-by-Alzheimer's. But between those two points--the aspect I'm considering and a non-AD "norm"--there is a wide chasm. A tired, depleted person with Alzheimer's may not be so bad off as I imagine. I am possibly assigning the aspect more weight than I should. A nice sleep may be all that it takes, and the mood may not be one that I should be thinking of as extreme. (I realize, upon thought, that's it's our version of "sundowning," or the classic Alzheimer's condition of nighttime bringing a marked downshift in function and coherence.)

Well...let us see tomorrow. I think I'll be calling Rich the cabin steward to see if he can wrangle our compartment into sleeping configuration very shortly...

...In the glowing Colorado Sunday morning light, I can say that we slept much better last night. I gave the upper bunk a shot, thinking maybe elbow room would be helpful for both of us, but I quickly realized that from up there--with no room to sit up, no access to the cabin lightswitch, and a bit of contortionism involved in coming down--I was poorly positioned to help with the inevitable night-time bathroom requirements. So I shoved the upper bunk into stowed position as best as I could, and went with coziness below. It was the right choice. Fog-man, as we will call Jeff's nocturnal alter ego, had many concerns: Whose house is this? Why don't I have pants? Where are my pants? Maybe we should go home and get pants. Comfortable, snug, and with a fine view of the Kansas City rail station (where the passenger bridge strongly resembles a cattle chute,) I handled these questions with humor and aplomb, keeping Fog-man reasonably calm and settled, such that he could transform, by morning, back into a version of Jeff who appreciates coffee, breakfast, scenery, and a bit of adventure.

Sound fx

2010-10-23T13:42:00.003-04:00

Overheard last night by any haunts hanging around our compartment, and possibly by the neighboring berths:

Squeeeeeonnnnnk Squeeeeeonnnnnk(The sound of miniature Amtrak sinks when you try to modulate the initial water burst.)

click rattle rattle rattle click rattle rattle rattle(cabinet doors that don't quite shut.)

Jeff: "Why are we here?" Me: "We're on a train trip to Chicago. Then we'll take the Southwest Chief to Santa Fe." Jeff: "What's moving?" Me: "The train we're on. It's supposed to move."

Fwoooooooooooonk! Fwoooooooooooonk! There's probably a reason they toot the choo choo's horn every whipstitch. I'm sure there's a reason.

Me: "Can you please lie down?" Jeff: "What are we doing?" Me: "We're on a train to Chicago. Can you put your head here? No, here. On the pillow."

chumma chumma chumma chumma... (some stretches of track are noisier than others.)

SSSSHHHHHOOOOOOOOMMPH! (This means we just passed another train.)

Me: "Hi, yeah...this is the fifth time you've woken me up...woohoo. But hey...look, it's Toledo, Ohio." Jeff: "Whose kitchen is that?" Me: "That's not a kitchen, it's the train station office" Jeff: "But whose house is that?" Me: "It's not a house, it's an Amtrak station in Toledo." Jeff: "Why are we moving?" Me: "We're on a train."

At 5 a.m. I gave up and got us ready for 6:00 breakfast.

On the Capitol Limited

2010-10-23T13:39:00.002-04:00

This is something that cross-country trains have in common with Disney World: Everyone smiles and seems genuinely happy to help you. Not just the staff, but your fellow travelers as well.

It is now 6:35 pm, and we are trundling across some farmlands just west of Martinsburg, West Virginia. I'm not sure at what time Lou (our cabin attendant) will show up to transform our bench seat into a bed, but earlier--for us--would probably trump later. Neither of us is given to nightlife (not that there is any, that I know of, other than watching The Right Stuff for 3 hours with Carl 3 doors down.) But we won't take Carl up on his kind offer as much as I know he'd like our ears for another spell. One of us can only take so much of Carl with a C, and the other tends to turn in early.

Here's what I'm going to try to do once Lou does transform our berth into its nighttime morphology: Take a shower. What that means is I will sit on the potty and aim the handheld sprayer at my head for 30 second intervals of water. I will check back after giving that a whirl, and let you know how it goes.

Meanwhile, I can hardly complain about dinner. Yes, it is true that the salmon "special" was comparable to one of the nicer dishes at Denny's...but it was nonetheless agreeable enough, and the key lime and chocolate peanut butter desserts were completely worth the calories. And here's the thing: At dinner we were seated with (you guessed it) Carl with a C, who was much more tolerable in that setting as opposed to standing in the doorway of our compartment regaling(?) us with a one-way dissertation on Frank Sinatra trivia. You see, I actually had enough to say about Broadway musicals that he occasionally stopped to insert food into his mouth...

...It is now about 9 pm. I discovered that when our small collapsible table is in closed position, the underside reveals instructions for making our seat into a bed. So I did it. So far I am resisting deploying the upper bunk, and just sharing the lower. But first I had to figure out how to manage Jeff's elbows which he especially likes to tuck behind his head. So now I've got his head at the door end of the bunk, next to my feet. Ever since we put the bed down he's been commenting that he thinks he's in someone's rec room, and couldn't we find better accommodations? Hard to think this is the same guy who drove up the Al-Can highway in a VW on a whim. "Like what?" I said, to the question of better accommodations. "Like a hotel," he replied. "The problem with hotels," I said, "is that they don't move." Well...this will all feed into the end-of-trip evaluation process, as this whole thing is a bit experimental.

And oh yes...the shower...Here's how it worked: I stashed my shampoo on one back corner of the john, and my conditioner on the other. You push a button which allows you 30 seconds of spray. However, it takes a good 10 pushes before the water is warm enough that you'd care to aim it at yourself. Still, I got the job done. What I think I will not do is try to get Jeff showered until we're comfortably ensconced in our inn in Santa Fe.

Off and fumbling...

2010-10-22T13:55:00.003-04:00

I am quickly squeezing in a moment of Wifi time. In just over 2 hours we'll board the Capitol Limited, which will take us--in our very own compartment--to Chicago. Neither the Capitol Limited nor the Southwest Chief--our homes for the next 2 nights--have Wifi, apparently, but here in the Acela First Class lounge at D.C. Union Station we're up and running.

We're also dozing a bit, which is appropriate given the hubbub of the bustling terminal we just closed the Acela Lounge door on. Most inconveniently, as full as Union Station is of dining choices and upscale shops, the restrooms in the terminal are in the midst of a 6 week remodeling, and all needy bladders are being shunted to the food court restrooms. The result of this is a short wait at the men's room, but--to no one's surprise--a line of 20 women before you even breach the doorway to the women's facilities. Hence, I stood watch by the men's room door as Jeff did his business, but held my own until after lunch when we went back to the Acela Lounge.

In flagrant disregard of a sign posted just next to where I'm sitting, we're munching chocolate cookies from Au Bon Pain, rather than merely availing ourselves of the Lounge-sanctioned snacks of chips and goldfish crackers. I am, however, properly consuming Amtrak/Green Mountain coffee from the lounge dispenso-matic.

Jeff has been in good form. I've been talking up our trip a good bit for the past week, and he's reasonably well oriented to the program. It helps, of course, that we're now in the tranquil Acela lounge, and out of the Barnes&Noble/Food Court/stairways/mobs/escalators of the Station-at-Large where I must remain appended to him at the elbow, turning him right and left like an upright vacuum. That can get on anyone's nerves. Both the turner and the turnee.

Stepping off the MARC commuter train, which took us from the BWI Airport train terminal to Union Station, Jeff failed to notice the gap and stepped down a foot and a half into the pit. Luckily that's all the deep it was, and a porter was positioned to help him as the gap was dicier than normal. Otherwise, so far so good. I am merely berating myself ever so slightly that I didn't think to brighten up his suitcase handles with yellow or orange tape so he'd know where to grab.

Em's Mess&Clutter

limericks, maybe?

Paging Uncle Charley (again.)

and today...

drinking to that...

It's still law...

Street Art

This week it's law.

having words with friends.

talk is yasui, as long as we keep it light.

no, I don't go out in my bathrobe.

Fort Knox? It’s not in Johnstown Betty.

Standing on our own four feet...for now.

But it is pretty...

It's a Small World.

People at home

I lost my albatross

and today...

some things can't be accounted for.

Betta' Beta.

going

splash.

Maybe an arrow would help?

Wow, I've fussed about my brain...

Who's on First? Don't know...but I'm picking clovers in left field.

flicker...*pop*...oops.

Whereas I would heretofore have a headache...

Does Braco have a gazing ball in his garden?

Yoga is smart, and so is dog-walking.

Scars...nothing wrong with looking badazzz.

Should find a fritter shop, really...

on stuff.

Pre-Edisonianism

August is Augusty. It usually is.

tired? yes.

plants and ants and trees and seas...

frascati. It's Italian.

They look good on me.

What will Terry do?

tired.

coffee not a l'orange.

It is probable...

oh, this makes sense! *(∧_∧)*

kissing coffeecups.

Bag it all.

NIHing.

try not to breathe this...

Miss Nancy

so rewarding

The Porch

And the Most Likely to Fall off a Cliff Award goes to...

Say "cheese," brain.

beds.

sipping with the enemy

Winding down...

Things I can't help but enjoy:

Food and Being Food.

The longest Empire I've ever chugged across...

Cardinal does not rule.

Is Emily crazy? Stay tuned...

More notes from the world of research protocols...

cogging the wheel...

Sand, ethernet and wormhole socks

and tomorrow...room coffee from a filter pack!

ouch parking.

They had other skills.

smushed things, large and small

season of play

this time meta, next time betta...

Epically bad, but working on it.

It's a lot of different things, actually.

my...um...person I take care of.

beeeep

Ruts are places too.

coming...to a blog near you...

not so old blue eyes

we'll tak a cup o' kindness...

Storm's a'comin'...

Be 92. Or 3½. Or at least just act like it.

Some cats can dance.

flicker...pop...oops.

oh, this makes sense! (∧_∧)