Front Porch Cafe to the rescue...

One of the reasons I could tell that last night's sleep disruptions were excessive is that, the third time, I didn't snap awake until there was light pouring in from the hallway, one of my shoes had found its way onto the dresser top, and the entire 3-layer bedcover ensemble had been twisted into a bow-tie and replaced sideways. So when I finally turned the bedside lamp on, again, at 3:36 a.m., and guided Jeff to the bathroom, my instructions were at best curt.

Another reason I could tell is that the literary character I most resembled in the morning--at least until a cinnamon bun and a coffee on the way to the grocery store kicked in--was Gollum, in one of his less obsequious moments.

Conveniently, our room at the Nags Head Annex--that is, the rental house where the bulk of our extended family stays during beach week--is equipped with a bathroom, and we can stumble around in the wee hours in various states of abject disorientation without too much bothering anyone else. And, as for the morning aftermath, I'm not bad at glowering quietly to myself until I begin to feel human again. This is good, since Jeff certainly cannot be held accountable for his state of mind any more than my 3 year old nephew (who squeals a good deal more.)

As I recall, last year about this time, Jeff asked me if I was hoping to divorce him. Sometimes that's the sort of thing that's stewing in his brain which is, for the most part, disconnected from the influence of the prevailing moods of me or anyone else in the house. About all I can say to that is "Sorry buddy, no such luck," and try to maintain whatever gravity of delivery the situation seems to call for.

This week, his thinking has not plumbed such dark depths, and he rode along with me to the Harris Teeter grocery store, smiling placidly and benignly, with no notion that my pinched brow existed, let alone was the result of sleep deprivation caused by his funky and erratic biorhythms.

Even after years of Alzheimer's it can sometimes be hard to make yourself accept that--to the AD person--kindness is all in the overt actions and the facial expressions. Cranky is as Cranky does, and if Cranky behaves tolerably, and smiles--even if it's a facade--that works for the AD guy.

Tonight I'm cooking--locally caught tilefish and not so locally caught tofu, marinated in teriyaki--and perhaps with a smidgen of an afternoon nap, I will not burn it.

Beach house half-life

The transitory nature of human dwellings is nowhere more evident than along the barrier islands of the U.S. East Coast. What happens to these houses is that they fall in the ocean. This is all well and good if your lot is 3 houses back and you're waiting for a crack at waterfront property because--bide your time--you'll get it. But it's also a bit like becoming Head Chancellor to Henry VIII--you've maximized your shot at power and prestige, but it's only a matter of time before the next nor'easter takes your head off.

It is fortunate that our (and by "our" I mean my mom's) beach house sits on a lot which runs from Old Oregon Inlet Road to the Atlantic Ocean...however far up it may be lapping at the time. Had she and Dad not had it moved back several years ago, it would have been among the casualties of the tide by now. As it is we're a tolerably comfortable beach-front. But it is equally common to have a short line of cottages behind you, with each front-runner falling off one at a time, like bags of M&M candies in a push-button vending machine.

Generally, before each house disappears, it becomes something of a gawkable attraction--a derelict beyond rentability--its septic tank exposed, decks and staircases dangling off, and windows broken. I don't know whether, by this time, any insurance claim could be made, but there seems to be little incentive for the owners to pay haulers to take the carcass away. Most likely it becomes a municipal problem if the ocean gods don't step in with some major flushing action.

We hit the jammed and melting road...

With the heat index spiking, I set off with Jeff to accomplish what should be a four hour drive in roughly 6.5 hours. The Soobie's air-conditioning system took a noble stab at keeping us from experiencing (Raiders of the Lost) Ark of the Covenant face-melting special effects, and we got to Norfolk, Virginia in time to join my mom for an excellent Indian Restaurant dinner. Let me take a moment to thank the iPhone app: Yelp, and all the contributors for pointing me--once again--in the right direction, dining-wise.

Most of the rest of the crew will join us in Nags Head--the beach!--tomorrow, after a lengthier one-day drive. By then we will have obtained some of the basic gustatory necessities, and a house full of young-adults will not need to stage a full scale hunger-unfueled uprising.

In such heat (106°F on the heat-radiating macadam of the Holiday Inn parking lot, according to my Mom's car thermometer,) my head is given to a bit of lightness, and Jeff's visuo-spatial challenges take a leap from impediment to road block. Cutting up of his mango-ginger chicken prior to handing him the proper utensil was of absolute necessity tonight. He is to bed early, as I will also be soon. And tomorrow we'll join Mom for a breakfast of impressively weak coffee and a toasted bagel or so downstairs.

Can we get from Norfolk to the farmer's market to good old Old Oregon Inlet Road in South Nags Head without a leash? Stay tuned...

pre-beach

It is the week before the week we go to Nags Head. The week in which I scribble lists on a handy legal pad, reminding me that I can't plan anything without lists on a legal pad. This is good.

This week I can take a step back from my story, and throttle down a bit from my usual mind-shredding pace of 5 words a day, and focus instead on a perfectly good reason to accomplish nothing.

Finally, enough responsibities--a cat scheduled for dental work, social obligations with parents and friends, children arriving from hither and requiring some assistance to go yon--are coalescing in sufficient density to leave me feeling, at the end of the week, as if I've earned a vacation. Meanwhile, the ants are stepping up their game, and finding new ways to tunnel through the foundation such that targeted strikes are almost pointless, and they remind me--once again--that I will lose the evolutionary battle, and they will win.

But off I go to try anyway. More news from the front. Or the beach.

Full of beans

Old Stewball was a racehoooorrrrse.... I am belting, which is not always something you want to be around. And I wish he were miiiiiine...

Jeff gives me an odd look. “Doo-Ball? Whose horse is this?”

”Stewball,” I say.

”Ok, Too-Ball?” he says. He is clearly trying to make sense of whatever it is I’m trying to communicate.

”No, STEW-ball,” I say. “Stewball. It’s a Peter, Paul, and Mary song.”

”Paul and Mary,” says Jeff. “What did the horse do?”

”He won the race,” I say. “And that’s all, as far as I know.”

”Huh...” says Jeff. “I don’t remember that song. Well, I learned something new today.”

Then I stop singing about Stewball.

Instead, I finally remember to look up the species of a tree which grows in large numbers along our usual beach-circuit dog walk. I have lived here for 24 years and have never remembered to look up that tree’s identity, except while passing by. And at those moments I have no internet connection. 5 different online flow charts...well, not charts, because you click. I guess they’re flow programs...but anyway, 5 take me to dead ends. One gets it bang on. (I don’t know what’s wrong with the others.) It’s a Northern Catalpa, recognizable by its very large heart-shaped leaves, and its lengthy bean pods. It is sometimes called an “Indian Bean Tree,” and usually they’re found in Ohio or the Mississippi River Valley. Someone apparently brought them here for ornamental purposes, and they appear to like it very much.

This afternoon, the weather was far too fine to take a nap on the couch, so that’s exactly what I did. Which means I’ll be up past Jeff’s bedtime, watching The Tudors if I can get a crack at the tv...or possibly whatever Olivia and her bf Brian select, provided it’s not a rerun of last night’s “Hooters Girls” pageant. Although Olivia and I did have somewhat of an interesting time making a critical analysis of real vs. not-real, anatomically speaking.

touch that dial...it's ok

I'm going all googly-eyed over transmissions from a daughter on a road-trip across the southwest. Friends on a road-trip across the northwest. A cousin's family on a sea-way trip to Bermuda. And I'm thinking: I've gotta take a road-trip or DIE!

There was a time when the summer slow-down was a good thing...no lunches to pack every morning, no bed times to enforce each night, a break from the daily treadmill of days bracketed by school and work schedules. But now that all those kids are--more or less--free agents, I'm having a way different emotional response to the poky dog-days of July.

Oh, for sure, I am bummed at karma. I did the time and didn't get the expected pay-off. Now I am a big babysitter. Well, I'm no bigger than normal, but the baby's on the large side.

I want to work on my book. No doubt, it's a bit of a silly exercise, but it keeps me sane and stable, probably much in the same way that drilling a hole provides satisfaction to a carpenter bee. And that, I say, is what I want to do! (Not the hole-drilling...the bees have that one covered, thanks.)

Trouble is, it's very hard to get to that immersion space in my head--that spot where I can live, for moments at least, in the invented world of my invented characters...and that's because I can't disengage. Most of the time I'm being vaguely gazed at. Fuzzy signals are emanating from what remains of the brain occupying the chair just 12 feet that-a-way. Sometimes he's looking at me quizzically, smiling blankly. Sometimes he's wandering vaguely about, his belt through 2/3 of its loops and only half-buckled. Or examining a mismatched pair of shoes, as if unfocused scrutiny will cause them to make sense. Sometimes drowsy, sometimes bewildered, sometimes unquestionably satisfied with a life of sitting in an Arts&Crafts armchair placidly surveying nothing.

So what does one do with that? Trouble also is, I guess, that having my receiver tuned to that station since 1983 has made it danged hard to ignore even the fritzy bits of static still transmitted. While there's a quality about them I recognize, I can't patch them into anything more meaningful than "zzzrbtxxx....still here...zzzziiiixxx...here....ccccchhhhhhxx...still..." So I'm like a desperate SETI geek in my garage outpost, distracted by the crackles and whistles from my radio, but utterly unable, by conscience or nature, to turn it off.

A road trip will clear the mind. A road trip will present its own ephemeral purposes and meanings, and I will report from the field. Something I can sink my observational teeth into. Here, I just hear xzzchzzzsqueeeeeee...

A Trip to IKEA

Tonight I will be trying out #4 in a series of pillows purchased with the hope that I won't wake up with tense neck muscles and a headache. The ergonomic "memory foam" ones seem snazzy enough when I test them out but, over the course of a night, are simply not squishy enough. Today I bought a "Gosa Hassel," which, as far as I can figure, means "Thanks chump" in Swedish, and we'll see how that goes. I would blame these sleep/muscle/tension problems on stress-in-general, but since I can do little to nothing about that, it's convenient to scapegoat the pillows.

The ostensible purpose of the trip was round #1 of collecting college needs for Gabe. He easily zeroed in on the proper towels--orange. (Orange is, you see, the most awesome of colors.) And selected two handle-free mugs--one white, one black. His desk lamp has a conical shade, giving it the appearance of a small robotic coolie, and I tossed in a few things of my own choosing--hangers, the most expendable of flatware, and a batch of laundry baskets which will be as close as Gabe gets to organization. Once we outfit him with some sneakers which are not separating upper to sole, and his Toshiba arrives, he'll be almost as ready as he needs to be.

Olivia came along. No surprise. It almost always pays to accompany me on a shopping expedition where the credit card is destined to come out anyway, and she located, in short order, a portable storage unit which would save her stealing her sister's. The sister who, according to unconfirmed reports, has accepted a teaching assignment in Washington, D.C.

D.C. is not ridiculously far from here. Neither is it a rational commuting range (though many do endure just such a commute for years on end.) More likely, when said sister returns from her cross-country odyssey to regions of dead cellular zones...(or at least dead as far as my phone is concerned. She apparently communicates with the other sister who, thus far, has not been implicated in this entry)...ahem, when she returns, it is entirely possible that another trip to IKEA will be in order. Or perhaps preferably, we can cobble together a roomful of supplies from what remains in the basement. I have extra pillows.

For it's no, nay, never...?

We visited Brigid the Nurse Practitioner, at the Memory Disorders Clinic at Georgetown University Hospital last week. Seems we've about stumbled to the end of our tour of duty in the Merck vaccine trial. I know two new things: Everyone in the trial received vaccine--there were no placebos, and although nobody in Phase 2 (our phase) achieved immune response, the results are not yet available from Phase 3, which got a bigger dose. Not that it's of any consequence to us even if Phase 3 suddenly mounts an immune response that would make any rebel alliance proud. We (as in Jeff) are ineligible for the "open-label" phase (in which all participants may receive the effective-level dose) because of microbleeds, as revealed by the MRI.

Ho hum. It would greatly surprise me if, even with immune systems everywhere locked and loaded, any reversal or containment of the Alzheimer's process were realized. For reasons that amount to little more than whimsical hunches, this is not the avenue where I anticipate advances in the cause. Don't ask me where I do anticipate advances, because then I'd have to pretend to have a grasp of biochemistry, and I most certainly do not. But, from the 2 new things I learned, there is one take-home point: Every time I tell the Red Cross people that Jeff can't donate blood because he was the recipient of an experimental vaccine, I am not merely blowing smoke.

Brigid did point me in the direction of a researcher at NIMH who is interested in the more unusual variants of Alzheimer's, of which Jeff's version appears to be one. I discern from the website that they are conducting shorter term studies, mostly involving PET scans. Part of me says, "Oh why not, what else do we have to do?" And the other part--the more phlegmatic twin--says, "Of what possible efficacy could it be to stick Jeff in a hour or so-long scanner several more times?" (Apart from the general contribution to research which, truth be told, was really the only driving factor the first time around.)

But now, even considerably less than 3 years ago when we started the Merck trial, he has so little personal interest in or grasp of the whys, wheres, and hows of these clinical trial processes that, frankly, it would only be of interest to me. Jeff would just be going along, as he usually does, wherever I go, gently accepting the needlesticks and cognitive hoop-jumping, while enjoying the simple perks of food, coffee, and the same 4 iPod playlists over and over on the way to and from D.C. (It might be time for me to snag some new tunes.) So, I'm inclined to consider his days as a research monkey over. I'm not 100% sure of that, but it's a decided inclination.

This has been a curious year of somewhat inscrutable disease progression. Progression has undoubtedly occurred. Getting in the car presents new levels of challenges as Jeff must be guided to the proper car, the proper door, and the proper car appendage on which to pull. (the door handle, not the side view mirror.) Getting dressed has gone from semi-reliable, to a ritual where--at shower time--I lay the jeans on the bed, spread out so it's clear they're jeans. I place the briefs on top of the jeans, to insure they are approached first. I select a clean shirt and set it next to the jeans, and just south of Jeff's wallet, belt, and hanky. I can still expect him to turn up needing help with the belt. The dirty clothes I must grab as they drop, or else they'll likely be re-worn for days, jammed into mystery drawers, or handled in such a way as to cause the handful of mixed nuts and dog treats that have been stuffed in the front pocket to scatter all over the bedroom rug.

The inscrutable aspect is that I still don't see this beginning to look like the inexorable march toward the time when I may need to, justifiably, consider seeking caregiving help. Realistically, it cannot be other than that very inexorable march, but I'm not yet seeing the landmarks that tell me I'm getting close. I still have this weird sense that this is how it will be forever. "This" being a life condition wherein I'm the spouse-parent to an unusually compliant toddler, who happens to be in his 60s.

Spell "ragspwaggler," or else.

Do you ever sit somewhere that's not your usual perch and notice how--from that vantage point--there are some rather serious lapses in the thoroughness with which you vacuum up dust and animal fur? Of course you do, unless you're quite meticulous, or someone else who cleans your house is.

Mostly, I'm not ready to go to bed. It's 10 pm, but I did not sleep wonderfully last night (something about the dog voofing at the bedroom door, and me--not quite with it--interpreting that to mean "I have to go outside, or else." Since "or else" has not happened in over 10 years, I needn't have worried...but I was half-asleep, until I ended up having to chase her around the back yard at 1:30 am, so she'd come inside and I could go back to sleep.) The result was that I took 2 short naps today, and am therefore not ready for bed.

Last night I was in a spelling bee. The 25th Annual Putnam County Spelling Bee, to be specific. That was the show we saw last night at the Annapolis Summer Garden Theater. Somehow I ended up as one of 3 audience participants--last one standing, in fact--eliminated precisely where they intended me to be eliminated, by a word that may not be a word at all, but sounded something like this: "ragspwaggler." If you can identify a word similar to this, please do let me know. Until then I was doing fine with "jihad," "cow," and "apoop." I know I had to be stumped at that point anyway, by hook or crook, since the actor in the boy scout costume, who'd been whispering me my cues, got booted (by dint of script) just one song and dance before, and I'd have been left high and dry without a killer word to trip over.

Jeff enjoyed seeing me "perform," and had 3 of his kids nearby to keep him oriented in the meantime. This morning Becca asked him if he'd liked seeing me in the play. He smiled blankly. Sometimes you can't tell if all has been lost, or if the question just didn't make it through the language processing filter intact.

Today I found myself having to speculate on the investment value of retaining certain life insurance policies, initiated by the hardware store a number of years ago, when Jeff was still insurable. In order to do this, you take out your Hewlett-Packard 12-C financial calculator, and input the monthly premium, an interest rate you think you could reasonably expect investing elsewhere, and the number of years of such an investment (which is equal, in this calculation, to the number of years you suppose the insured will live). It is a task that is both bizarre and impossible, because you're deciding how to gamble based on someone's longevity and, particularly with Alzheimer's and its variants, you can't possibly guess anyway. As it turns out, the policy under consideration falls under the joint purview of my brother-in-law and me, and will be something we need to hash out after I speak to the agent on Tuesday morning.

Perhaps by then I will have written 2 more paragraphs in my silly book. I am glad to be back in that saddle, though it seems to have put the squeeze on Japanese study. I am sure though, that ragspwaggler is not a Japanese word.