Visitor
This view from our bedroom window is (*yawn*) absolutely nothing out of the ordinary . . . unless you lived in Manhattan for 40 years.
The Best Advice
The single best protective amulet you can give someone leaving on a long drive is this warning/reminder:
If you get sleepy, DON’T try to fight it. Pull off the road as soon as you can and take a nap.
I realized the importance of the advice when I fell asleep at the wheel just driving J back from a swimming pool less than half an hour away. (I know I’ve told this story before. It made a big impression. And it bears repeating.) I was chronically sleep-deprived in those days, and there was something about having been in the chilly water for an hour and then getting in the warm van, eyes gritty with chlorine . . .
It is amazing how powerful the brain’s drive to sleep can be. It will shut down in complete disregard for the fact that you’re hurtling along in sole control of a two-ton hunk of metal, with others hurtling around you and towards you. The brain HAS to sleep when it has to sleep.
I didn’t believe it. We were only 15 minutes from home! I figured I could have coffee before we left and then pinch my upper lip, slap myself in the face, turn up the A/C, if I still felt sleepy.
WRONG.
Fortunately I felt myself fall asleep. It was like watching myself vanish, like the Rapture: my hands vaporized off the wheel, the driver’s seat was empty . . . the van started to veer into the oncoming lane, and I yanked myself back out of the void before any harm was done. But I vowed never again to ignore the demand for sleep, even if it meant pulling into a mall parking lot ten minutes short of my doorstep.
Our cousin rented a car and drove all the way to Hatteras Light and back today, close to ten hours on the road, getting home at 1:30 A.M. I gave him this advice before he left, and he reported that it was “golden.” Somewhere east of Rocky Mount, he stopped at a gas station and took an hour’s nap. He got home in one piece. I’m not saying he wouldn’t have if I hadn’t reminded/warned him, but it surely upped the odds. This is the best parting gift you can give an automobile traveler you love.
Why? Why?
Tell them that is human nature . . .
Jacques has dementia. You could justifiably say he’s not “all there.” But why do many people treat him as if he’s not there at all??
A friend is a physical therapist who works with special-needs kids, so you’d think . . . Yet she came into the house to pick up cousin Christian for a Latino festival she was very kindly taking him to (he’s a salsa freak) and left without even going in to say hello to J, who was sitting up on the side of the bed in the bedroom. If he’s in there, she’ll sit down and talk to me at the dining room table and only go in to greet him if I ask/tell her to. (My fault for not getting him up and into the wheelchair more.)
Does J notice and feel left out? He must, though he doesn’t reason it out or remember it. Even his cousin will cheerfully chatter to me about his obsessions in the kitchen while J sits alone in the other room. (Boy, people around 40, in the thick of life, have intense obsessions. I did!)
I guess dementia makes people uncomfortable. (This could also be why my sister who lives some 3 hours away has visited me once in four years. Or it could be that the less she visits, the guiltier she feels, the less she feels like visiting.) I’m so used to it, it just seems like another variation on the human condition, interesting and exasperating and challenging. To find a successful way to understand, or reach, or amuse a person with dementia is always a little triumph. It’s rewarding! And the rewards aerate the relentlessness a little.
I guess they can’t imagine this life, the way I can’t imagine a life where going to the latest movie and having a conversation about it over dinner is a rightful pleasure they can’t imagine living without.
“That’s Family. That’s Blood. And That’s War.”
As some professional wrestler famously put it.
Then.
Now.
Jacques and his cousin Christian watching Casablanca. (Christian’s mother and J are first cousins.)
One: fuzzy. The other: not so much.
Roots.
Deep roots. This is where J’s are. The house where he was born, and where his mother died in the same bed, with us holding her hands, would be about half a block behind you. (Except it’s gone now; it was pretty much stolen from us, and rebuilt into a hotel.) The citadel (Bauernburg or “farmers’ fortress”) on top of the hill was where the whole village would retreat whenever there was an invasion across the plains from Central Asia, which was pretty often. That’s how these Transylvanian Saxons, invited to farm and defend the foot of the Carpathians by a Hungarian king in the 12th and 13th centuries, got their broad streak of Mongolian genes. A known ancestor of J’s mother was the leader of the town in the fortress in the 1400s.
HERE’S Why People Hate the Jews!
From Christopher Hitchens’s recent interview with Hugh Hewitt:
My great friend, the late Jacobo Timerman, who was also disappeared for a considerable time, a Jewish newspaper editor in Buenos Aires, said that when he was being tortured in another private prison, his interrogators kept asking him so don’t you understand who our enemies are? Our enemies are Sigmund Freud, because he destroyed the Christian concept of the family, Albert Einstein, because he destroyed the Christian concept of the cosmos, and Karl Marx, because he destroyed the Christian idea of the organic economy. And do you think it’s coincidence all these three people are Jews?
I especially love “Albert Einstein, because he destroyed the Christian concept of the cosmos.” It was all his fault! What we didn’t know wouldn’t have hurt us!
Someday I’ll finish this damned foundation mission statement I promised to write for a friend 9 months ago, and then I’ll finally be able to write my piece for PJM tentatively titled “Science and the Crisis of Belief.” I do believe that getting a look at the Hubble Deep Field has been a traumatic initiation for humanity. Not only our universe but our conception of a God was way, way, way too small. And in a universe so unencompassably vast, if there’s only one God (a legacy of being Jewish I can’t shake), can it really be “our” God? What are we? No, we have had a gnat’s conception of grandeur. To merit its attention, to catch its reciprocal glance, we have to measure up, up, up.
Blame Albert for disturbing our larval sleep.
The Thing that Makes Me Quail
— you could almost call it an existential challenge — is the silent, empty days when friends are sealed off in their lives somewhere, busy and preoccupied, without the magnanimous excess it takes to attend to us; when none of the bustle and substitute social life of hospice is scheduled (the two aides who bathe J would normally come today, but rescheduled for tomorrow); when we two might as well be the only people on a deserted planet. There is no perspective, no matter how my mind tells me “This too shall pass,” “Tomorrow will be different.” (It will!) No, it is an eternal present, and it feels like the bedrock, the baseline, of our condition laid bare. Everything else is a temporary reprieve, a weekend pass from prison, a kind lie.
J has been a little bit sick — aspiration bronchitis, I guess you’d call it — well short of pneumonia, but labored, rapid breathing and a low fever. The hospice doctor agreed to an antibiotic, and he’s better. But such episodes (pretty rare for now) remind me how little time we have. Every day he’s weak and out of it like that, he loses double the ground from being unable to do the things that keep him going: sitting up in his chair, getting out of the apartment, doing a little bit of exercise, or going to the pool, for which he has to be strong enough to pull himself up by a grab bar while I hold him up by his waistband and two lifeguards quick swap the water wheelchair under him. It will be a week or two before I’m confident that he’s regained enough strength even to try. Too bad, because it’s the only thing worth taking him out for in this heat.
Hospice also convinced us to accept oxygen. I’ve been nervous about having it in the house after the fire. We do now have the whole nine yards, cylinders for portability and in case of a power outage, which is overkill since J can and mostly does live without it. But there’s also a machine that takes it right out of the air. When J’s breathing is compromised, he clearly doesn’t get quite enough oxygen to a brain that’s already in other kinds of deficit. So I’ve been giving him both a nebulizer mask with bronchodilating meds and a nasal cannula with oxygen, as much as he’ll tolerate gadgets on his face, which isn’t much. The oxygen gives him more mental energy, and that turns out not to be a particularly good thing. It doesn’t dispel his confusions and delusions, just kind of supercharges them. And today, it seemed to make him more aware of his boredom and purposelessness as I worked and swilled away at the engrossing social tit of the Internet while he sat there, propped up on the side of the bed. He is blessed to be rarely depressed, but today I was concerned enough to ask him if he was, and he admitted it.
What do I do then? Well, I go into overdrive. I get him washed, dressed, and up, acting as busy and jolly and silly as a barrel of monkeys while crying inside, for him (Ridi, Pagliacci!). I shut the computer and resolutely put it away even though this blog post is already forming in my head. I work out with him, doing my karate slowly while he, sitting in his chair, does the vestiges of his (often his left foot moves when he tries to send a message to his right one, or he can’t alternate left and right hands but uses both at once). I make him an old faithful favorite thing to eat (three fried eggs) and an attractive new thing to eat (avocado and orange salad, slices alternating like flower petals). I put jazz on the CD player. He was probably depressed in part because he was hungry, having declined breakfast. He is easily led back to enjoyment of the basic pleasures of life. He reminds me of his mother, whose mild martyr complex could always, always be dispelled by a good joke. Neither of them could ever resist an invitation to laugh.
Now he’s watching Silence of the Lambs, which I assure you will make him him very happy. I’m about to go finish my workout, which, along with coffee, floats my boat. And the day is over. Tomorrow will be different.
Sometimes a Dream Just Nails It.
I didn’t “get” this till I wrote it down:
I was with J in a — bus? like an abandoned school bus or van? Was he sitting in what had been the driver’s seat? It was dark in the front of the bus, or dark/light in big chiaroscuro stripes and squares. J wanted me to make it turn. I’m not sure why — I was afraid the alternating light and dark could cause him seizures — but I complied, reaching out with one hand and pulling in such a way that the place where we sat slowly, heavily revolved and spun. (Referent: The Time Machine‘s revolving nights and days.)
Fascinating: J sitting in “what had been the driver’s seat” and asking me to make his world go round with main physical force, to make the days and nights spin by. The bus is no longer going anywhere. i feel the pull in my arm and shoulder, as I do so many of my tasks for him.
Ambiance 