Wednesday, September 29, 2010

Coffee won't help.

I'm trying to remember how I did it. Quite a few years ago, during the earlier seasons of Survivor, (you know, reality TV--put people on a jungly-beach and watch them act stupid,) I wrote a humorous online column, re-hashing--through my own fractured filter--each episode.

I'm not really sure how I wrangled my brain into cooperating. See, I'd watch the show from 8 to 9 p.m., then--within roughly an hour and a half--I'd spin out a sufficiently clever synopsis that at least a few people around the globe (I got emails) would come back for more on a weekly basis.

I'm not a night person, is the thing. So that wasn't easy. And, right now (9:50 p.m. Toshiba time,) I'm testing to see whether I can still formulate sentences after dark. The reason I want to know is that there are generally 2-3 hours per night that I spend awake, alone, and wondering wtf. Jeff goes to bed at 7 or 8, depending on whether I have something on tv with which to engage him. Then, I spend the next couple hours either websurfing, tv-surfing, or just sort of otherwise lost in space.

I tell myself I'm too tired to do anything much. And I think it's true. Making intelligent decisions about which objects from the hall closet go in the throwaway or the giveaway bags is not something I'm willing to do with half a brain. Nor would I care to attempt my "real" writing project, half checked out. But I'm not ready for bed, and--with the right topic--I might just be able to reactivate my columnist neural network.

By the way...THIS is not the right topic. This is just practice. And I hear a problem. Footsteps. This means that Jeff woke up enough to go to the bathroom, and--when he is done--he will get back into bed diagonally or maybe even upside-down, such that I will have to shove a bit (creating further disorientation) when I try to fit. Furthermore, he will have his hands under his head with his left elbow sticking halfway across my pillow. I might be able to re-shape him, like Gumby, but I might just cause havoc. So, make sure--if you're a couple, and one of you is planning to become cognitively impaired--to buy your queen bed now, and not still have a regular old full-size (like I do) when the time comes to sleep in it all crooked.

So, how about that? Writing after partial brain shutdown. It would be appropriate if there were a glowing light, slowly pulsating off and on on my forehead, to indicate that the hard drive is not quite up and responsive. I guess Survivor lends itself to commentary by the alertness impaired. I'll have to make note of future topics that could be similarly impervious to nonsensical rambling.

Wednesday, September 22, 2010

Clairvoyant or not, I still need new sunglasses.

We are home, for three weeks. Although we munched Connecticut-grown Macoun apples while zipping south on the New Jersey turnpike, we haven't needed much else in the way of food today. It was that breakfast near Manasquan, coastal NJ, in a local dive called Mariners' Cove. They offered 200+ omelettes, described on a tabloid-sized menu, and while the spoons per se were not greasy, the food decidedly was. Still, it was clearly popular with the locals, and a steady crew moved in and out while we ate. Nevermind that they were all men, every one of whom looked like he must have bellowed "STELLAAAA!" out his side door before giving up and hitting The Cove. Stella, apparently, was not forthcoming with the breakfast this morning.

So, yes...in three weeks it's back up by Amtrak, for Family Weekend, with my mom in tow. It's a busy Fall. Yesterday, tooling from Connecticut to Jersey, I experienced one of those moments of clairvoyance that I don't quite believe in. Despite the fact that they seem to always end up true. I don't believe in clairvoyance, (or, leastwise, I am stubbornly determined not to,) but my record--skepticism or not--is hard to argue with. If everything turns out fine (at least according to current norms,) and the status is quo after this Fall, then I'll laugh at clairvoyance and tell it I knew it was full of beans. But here's what it says: It's that the busyness of this Fall is my instinctive (almost primordial) reaction to realizing that Jeff's and my time to do this stuff together is drawing to a rapid close. He is going functionally blind, and I sense the pitch of the decline to be growing more acute.

Functionally blind a la Benson's syndrome, of course, bears only surface resemblance to eyes that don't work. A blind person can compensate by means of sharp senses and a clever mind. A victim of Posterior Cortical Atrophy cannot. His cognition is petering out across the board, and when he cannot identify a butter knife as a butter knife there is little he can do to work around that.

I knew about the incident in which he could not, momentarily, identify his brother. I've since learned it happened two weeks earlier as well, with his sister. When he cannot peg me on sight, I don't think all will be lost. He's okay with being told, and accepts what you tell him with comfort and trust. But not knowing family, running into doors, almost eating butter wrappers, and falling over curbs are merely opening volleys in a condition that's poised to worsen exponentially, and--as it does--all bets are off vis-a-vis just what we can expect to do, outside of the safest and most carefully arranged of environments.

How I will manage, and what services I may seek to employ--not yet known. Clairvoyance doesn't like to fill in the details that way. (And trust me...I still don't trust it.)

Tuesday, September 21, 2010

Hello?

I don't know if Manasquan, New Jersey is the weirdest place on the east coast, but it's sure been the weird spot on our latest adventure.

We're staying at a place called The Inn on Main. It sounds quaint enough, doesn't it? But here's how it works: You pull into a marked parking spot behind a pleasantly shingled, but otherwise nondescript, building. There are two restaurants on the ground floor. Or are there? One's signage suggests a sushi joint, the other, an America Bistro. Both are abandoned and desolate--their tables forlorn and empty, save for askew tablecloths. Around the corner, in a bare tiled hallway, you push the elevator button. Your room is #202, and you have been instructed by email that there is no check-in. Instead, you will enter a particular code (which is related to your cell phone number) in the keypad on the doorknob, and go right in. In the elevator is a small sign, giving you the phone number for hotel staff, but you're clearly not expected to require them. We don't. On each of the doorways in the hotel corridor is a plaque reading: "The Warmest of Welcomes!" That's good. At least the plaque has good intentions, but the word "warmest" seems ironic given the utter lack of humans. The keypad grants us access into a clean and handsome (in a starkly generic way) room. I half expect that when I turn on the t.v. either Rod Serling, or maybe Will Ferrell, will fill us in on our next instructions. So we don't turn the t.v. on. Instead, we go out and drive around.

We view many grand houses but few dining establishments. We walk on the boardwalk, but not on the beach (which is chilly and windy...besides, we don't have the regulation beach badges.) We find an old-fashioned Italian place, and eat tasty heavy chow. Then we come back.

We have decided to make decaf in the room. I have used tiny 4 cup dripolaters, and I have used Keurig pods. This machine is something in between. You insert a mini disposable filter basket, pour one insulated cup full of water in the back of the machine, push the button, and let it dripolate right back into your cup. Hot. Not bad. Weird.

Tomorrow morning we will leave, having interacted with nary a human. There's no phone in here. I almost feel like a squatter. They don't serve breakfast, like our other two stops. Instead, we'll depart, looking for either Mariner's Cove or Ray's Café to please be open and functional.

Here's the thing: The reviewers on TripAdvisor.com overwhelmingly liked this place. I can usually trust those guys. Not that there's anything wrong with this it...it's just that this is a little too much anonymity even for me.

Monday, September 20, 2010

trains, (hydro?)planes, and automobiles...


It is late afternoon. Soon we will return to Gabe's house on campus and scoop him up for dinner in town, New London. What am I observing after his first 3 weeks away? (3 weeks...not a long time, is it?) He seems clean, and their dorm room--chock full with 3 boys--is NOT abysmally messy. Even Gabe's stuff isn't abysmally messy. I'll solicit his impression of where he stands on the privilege stratum (a leveling system whereby a steady hand on the self-responsibility wheel will move you up a step) at dinner. We'll eat Indian, or maybe Thai.

For now, Jeff and I have retired to our Inn down the road in Niantic. This room has windows and marina views on 3 sides, sea breezes, and is an eminently satisfactory place to recoup after plenty of driving.

I've asked myself if this is a crazy trip from the planning stage to now, in the thick of it. Three lodging stops for the core goal of checking in with the kid, barely a month into his semester. But there's more to it for me. Jeff doesn't know where we are from one minute to the next, but he goes with the program...nary a complaint...only wondering occasionally if it might be time to eat. If we stay out of teeming throngs (malls, let's say,) I can keep him on a loose enough rein that he's happy and one place is as good as another.

But I have a sense that we're reaching the end of the time we can do this. That this season--this time we can travel--will end with an undeniable solstice, whether I like it or not. Every so often, a tell-tale leaf falls, and one just did. Gordon told me about it. Happened just a couple days ago when Jeff was with him at Helen's house in NY, during Wade's visit. An almost complete reunion of the Clement siblings. It was early morning, Helen's family room. Jeff looked at Gordon (the brother with whom he's been business partners for two decades,) and, with some concern, said "Who are you?" When Gordon gently revealed his identity Jeff relaxed visibly, chuckled, and sat down. But this was new. When, I wonder, will he be asking me the same thing?

Jeff is wearing his MedicAlert/Safe Return "sport band" i.d. without notice. I slipped it on next to the watch he can't read, muttering something about health insurance, and he nodded as if to give distracted assent. I don't believe he's paid a whit of attention to it since.

Now we'll go seek vittles with the newly-fledged college boy, and tomorrow Jeff and I will stop mid-way down the Atlantic Coast of New Jersey. I will point to things that would interest him. A few, he will look at; most he will stare obliquely past. Other things I will not point out, because they are of interest to me, and I'll tell myself all about them in the running dialog me and I have.

Right now, I am telling myself that there are a heap-load of boats docked at this marina in the Niantic River. And that--300 or so yards that-a-way, out the southern window--three Amtrak trains have hooted and rumbled by. I will not have trouble sleeping here. Gabe could have picked a worse spot to endure two semesters of maturing in exile.

Monday, September 13, 2010

it's what happens

I just found out that my next door neighbor died suddenly. She was about thirty-five and was, by vocation, a pet-sitter. Our pet-sitter, for one. And somebody else's pet-sitter, down the street, where she died, apparently suddenly and unexpectedly.

I keep looking over--there's her car, there's the fence, there's the rusty old shed that's been there for decades...This was someone who was useful in the community, who filled a needed niche and helped a number of elderly ladies. Someone to whom I could have been a better friend when she was a lonely kid.

I wonder how jaded it makes me, living with a husband who is taking a decade or two to die of an inexorably terminal condition. Am I more or less unsettled than someone who doesn't have the grim reaper penciled into her datebook under the vague heading to be continued...? Maybe I'm more stupefied than affected in any kind of a meaningful way. I just kind of look over and think oh...wow...shiznit.

Sometimes I wonder if it's even possible to get nearly through 5 decades of life and still find anything shocking or traumatizing, or do we all--after this much time--just look out the kitchen window and say to ourselves, "well, I wasn't expecting that one."

I don't think it's the same as being callous. I think I still register empathic pain, and I think I'll still reach out a hand if the obtusity of my mind permits me to notice a need. But, oh...wow...shiznit.

Friday, September 10, 2010

Bed, Bath, & Bewildered

Funny the way things snowball from maybe to imperative. Yesterday, I reached a certain point of conviction that it was time for a medical i.d. bracelet of some sort for Jeff. Today, I lost him in Bed, Bath & Beyond.

I was keeping him pretty close as we waited in line at the checkout to pay for two tablecloths. He tends to position himself awkwardly otherwise--either squarely in the middle of an aisle, such that no one can pass, or he confuses other shoppers who can’t quite tell if he’s in line or not. So, I had him with me until I turned my attention to the credit card box through which I’d just swiped my card. They’re all different, you know. Did this one have a screen that I’d need to pay attention to, or sign on, or would I be signing the paper slip? The slip, as it turned out, but by the time I gathered my tablecloths and receipt, Jeff had given me the slip.

Here is what must have happened: Somewhere in the two minutes when my attention was diverted, another woman with light hair must have come into his visual field. At which point he fixated on the wrong back of a head, and followed it out of the store.

Heaven knows whether the decoy Emily ever even noticed the guy trailing her at 10 paces, out the door, down the stairs, across the street. As Becca later observed--thank goodness he didn’t try to get in her car. I cannot say what happened to her, or even vouch for more than her probable existence, but after I’d made 3 circuits of the check-out zone and entryway, and 1 circuit of the entire store, I stepped outside to scope the surroundings. I was not feeling as calm and collected as I may seem relating the tale in written format.

This particular B,B&B is located one flight up from street level. I knew Jeff could have gone across the pedestrian bridge and into the parking garage, or down the stairs and who knows where from there? To my great relief, when I looked out over the street, from above, I spotted him standing patiently, with a slightly bewildered expression, at the street level entrance to the parking garage across the street below.

Down the stairs I skedaddled. “Where did you go?” I asked. He looked perplexed. What a question. “I didn’t go anywhere,” he said “I’ve been right here the whole time. You disappeared.” (I can only assume “you,” in this case, meant the decoy, who presumably escaped without ever becoming alarmed.) For a moment I protested that he’d disappeared as I was at the register...but this clearly bore zero resemblance to his reality, and I quickly dropped it. “I guess you walked into a wormhole,” I said.

In 10 minutes of lost-person, you can do a lot of thinking about how limited his resources are: He cannot call me because he does not remember my cell phone #, does not have a phone, does not know how to use one. He will not seek help, because he does not understand himself to be impaired. He is too far from home to walk back, and not in the neighborhood where 25% of the people know him by sight. No one will offer him help, because he looks relatively normal. But he does retain one trick, which he told me about at lunch, later. “This thing about being lost,” he said. “Ever since I was a kid, in boy scouts, it’s been hammered into me that if you’re lost, stay put and let someone find you.” So that’s what he did.

I am grateful he retains that tool. Now I must find something else to add to my own toolbox.

Thursday, September 09, 2010

paring down.

Among the books on the desk alone are three copies of Benjamin Graham's The Intelligent Investor. Three different editions. Introductions by three different noteworthies. It is somewhere between art and skill, deciding which books to slip into the give-away bag. Two copies of Graham go. I leave enough that if Jeff tires of the 3 books he's been "reading" for the past 2 years, there's something else to offer. Anything with Warren Buffet's name on it is good.

He woke me up at 5:15 a.m. "Emily." he says. "Why and where?" It does not take much to rouse me, as I am primed for intervention. "Why and where what?" I say. At least he still knows "who." "Where are we, and what are we doing here?" "We are at home," I say, "trying to sleep for another hour." But it's somewhat too late. I've already been alerted to my bladder. What happens at night when I go to the bathroom is this: Jeff does not think Oh, me too. I'll go next. He skips straight to the I'll go part, and stands there in front of me, confounded to find there's someone else in the way. "I'll be done in a sec," I say. "Then we're going back to bed." Jeff says "Is there something to eat?" "Yes," I say. "In 45 minutes."

The book collection bag, in the hallway, has also swallowed several tomes on architecture. We have hundreds--mostly full color hardcovers illustrating an architect, a style, a trend. It was a lifelong interest, but he hasn't taken notice of them in years. It's time to thin the herd. It will take awhile, 3-4 at a time. But we have awhile.

I am working on his dresser now. I have unearthed no fewer than 3 identical brown Brooks Brothers glasses cases, each of which has the word "car" written in blue ballpoint on the inside-top of the clamshell. The hardest things to sort are the stacks of correspondence, tucked away in almost every drawer. They're there because family members returned them to Jeff over the past several years, thinking that remembrances would mean something to him. He glanced at a few. Mainly he cannot process them at all, though he might chuckle at a silly photograph. There's a letter from his mother, written on stationery with the letterhead of the small hardware store they owned in Hurlock, Maryland, listing Jeff's parents as proprietors. I don't know why I save it, but I do. I save a card from his Mom in which she wrote that she's especially proud of his unfailing honesty, kindness, and generosity of spirit. Almost everything else goes.

Now we'll take 3 large black plastic trash bags of clothing, and 2 shopping bags of books, to the collection bins down the road. "It's stuff we don't use anymore," I'll say. It's true, and Jeff won't question it.

Monday, September 06, 2010

An interesting place, no question.


I was about to talk about Disney World, starting from my earliest childhood trip at age 11. But what happened was, it read like a voiceover by Earl Hamner Jr. So I hit the delete key a whole bunch of times until I got back to the opening html tag. Then I started again.

I am of split feelings regarding the whole “Disney Experience.” I completely buy into the school of thought that thinks: “Wow...what a remarkably (mostly) neatly and tightly run ship this is! Totally engineered fun, but fun indeed!” But I also: 1) prefer “real” experiences and places and 2) am inclined to avoid crowds. As for the crowd thing--there are probably few places where crowds are steered with the pleasant sort of efficiency that Disney imagineers, and as for the “real” thing...well, there is no question that there is an inescapable layer of realness in contemplating the creation and operation of such places and experiences as exist on Disney property, not to mention the undeniable reality of watching other humans and their behaviors in the context of such a marvel of engineering.

At age eleven I was enchanted. At twenty I was supremely entertained. At thirty, in a rare opportunity to visit the Animal Kingdom with none for company but a pleasant and cooperative infant, I enjoyed the details in a way that you can’t always. Several years later, with a litter of middle-grade children along, I’d pre-planned our days such that opportunities for cranky exhaustion were limited, and fun--in the company of unjaded children--was at its best. This year I went for 3 days with 2 college students. We had fun, for certain; it kept me entertained, for certain--but this was the first time I actively thought: “I think I will have come here enough for one lifetime.”

Nonetheless, I was happy for the trip, and happy for a change from the lonely tranquility of my caregiving days. I will say however, that I cannot recommend jouncy rides to anyone else whose temperament disinclines her to relax her neck and shoulder muscles. And I have a critical suggestion: Disney? Mickey? Seriously. Offer free wifi in your deluxe resorts.

Sunday, September 05, 2010

How Do You Solve a Problem Like Ennui (a)

I have the tv on for the moment--The Sound of Music to be precise--but I'm probably not going to watch it. Instead, I am wondering if I'm not at least a little nuts for having just planned a three night trip for the core purpose of spending an afternoon and dinner out with Gabe in Connecticut. If I drive straight with just a lunch and maybe bathroom break, it will take us about 8 hours. I can make that kind of a trip, as sole driver, but I don't like it. This is why I'll split it up, and spend 2 extra nights at inns en route...places tranquil enough to keep it easy, but interesting enough to be fun for me.

Anyway, this is what I've been telling myself I'd do once Gabe got situated. Stuff Jeff in the car and go places. It's better for both of us. For me, it makes the home-time more productive and more welcome. I stop feeling like a caregiving hermit in a cave. For Jeff...well, I don't know, but he seems perfectly content.

It's a glimmer of good fortune that given a disease that is known for exaggerating personality traits, Jeff has never been a worrier, or one to fret in unfamiliar surroundings. As long as I lock our hotel or inn room door securely, and stick a small table in front of it for extra assurance (middle of the night bathroom searches can cause the most disoriented fumblings,) we do rather well. I have a little wake up routine in which I say (for example) "We are in Norfolk, Virginia. We are on our way to Nags Head." Then we get breakfast. It seems to work for everyone, and by the time the first coffee kicks in, Jeff has at least a rudimentary grasp of the program.

I have a special file holder for trip planning. It holds five plastic folders, all different colors, and each one contains things like Amtrak barcodes for ticket retrieval, notes on likely places to eat, maps, and hotel information. Since summer I've regularly had 3-4 of the folders full and waiting. I like it that way.

On tv, Captain Von Trapp and the Baroness have just had a little conversation about his busy travel schedule. It's the sort of conversation that would have been edited out of any modern movie, but not in 1965. He says "Activity suggests a life filled with purpose."

Yep. But I had to wait until my children were old enough to govern themselves, since there are no conveniently located convents full of inappropriately impulsive novices, but the time is here. For now. As long as it works for Jeff. And when it doesn't...that's when we'll need Maria.