coffee not a l'orange.

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...

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

oh, this makes sense! *(∧_∧)*

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.

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.

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.

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...

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

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

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

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.