Hospice and Lewy Body Dementia

June 19, 2011 at 11:08 am (By Amba) (, , , )

The first of two posts cannibalized from e-mails. 

This one, about our hospice experience, was to an e-mail list of spouses of people with the same illness J had.  Hospice is often the only way of getting paid-for help with the crushing burden of caring for someone at home with this illness, which is prolonged, progressive, ultimately terminal, and meanwhile both physically disabling and dementing.  My point is that this doesn’t make sense: for all but the last stage of the disease, the help that matters most could be provided for a fraction of the cost.  My secondary point is that our particular hospice’s policy on “boundaries” is an example of the clumsy overprofessionalization of human services, and that there’s a way to accomplish the same aim more gracefully.

Jacques was in Stage 4-ever and I didn’t believe he would qualify for hospice, but someone on the LBD forum warned me that I was burning out and strongly advised me to ask his neurologist about it.  The neurologist said he would absolutely recommend it, that Lewy is a terminal disease, and that J’s degree of helplessness warranted it (even though he was still communicating, he was not able to walk or to do anything for himself).  In practice it was a little tricky to define the category that he fit into — and in fact I don’t remember what it was — but the hospice doctor and nurses really, really went to bat for us.  They managed to keep him on hospice for a year, gathering little details — like the fact that I had to support him with pillows when I sat him up on the side of the bed or he would topple over — that would support their case.

It got a little weird towards the end.  The aides had begun to hurt their backs taking care of him (I never did because of my Feldenkrais Method movement training, which I’m going to return to now; that is what makes me want to develop a weekend workshop for aides and caregivers).  Then, because I was going to Chicago for a family gathering and (my job being in suspension) couldn’t afford a round-the-clock home health aide, I put him into the hospice inpatient facility for a respite stay for 4 nights in early to mid-September.  Even though it was Duke, they took lousy care of him, and the stress may have contributed to his getting shingles a couple of weeks later.  I don’t entirely blame them — they were not used to taking care of someone as heavy and paradoxically robust (though helpless) as he was.

The home hospice team were angry (the aides) and, I think, embarrassed (the nurse and maybe the doctor) by his bad experience there, and coincidentally, another recertification period was coming up and I think they were under pressure from Medicare to kick him off hospice — he was too “stable” (which they called “the S-word” — shhhh!  don’t say it!).  Just then, he got shingles, was hospitalized for a week on IV acyclovir, and although the shingles healed, as you know, he never recovered.

At home, at first, he had aides coming five days a week.  There was a kind of climax of activity and solicitude, a brief window of post-hospital, no-holds-barred Medicare largesse, and an expectation that he would soon decisively go one way or the other.  And indeed, a few nights after he got home from the hospital, on a Friday night, he had a lot of secretions in his airway and the hospice people thought this was it.  A nurse on call on the phone, a stranger to me, came and saw him and told me ominously that they were “death secretions” and I could expect to see “other changes.” But it was a false alarm.  He made a mini-comeback, and the hospice people sort of threw up their hands, rolled their eyes — and backed off, at the very time when you’d think they’d be most attentive and supportive.  The nurse told me wearily that patients with dementia like him could “go on like this for months” (and we know that can be true; on our e-mail list we’ve seen people be admitted to hospice and die within two weeks, or live on for three or more years, with many such “lifelike” death rehearsals).  They cut back his home health aide visits to one aide three times a week, they were no longer going to try to get him up (they were right about that), and the nurse sort of detached herself.  It felt to me almost as if at this point they were annoyed at him for not getting on with it.  None of his team were on duty when he died (on another Friday night), again a strange nurse on call came to “call” it, and afterwards his regular nurse and the doctor abruptly cut off all contact with me, as is their practice — a matter of “boundaries,” they say.  They turn you over to “bereavement” — well, Jacques and I had become lifelong friends with a couple of his surgeons, we were not big on “boundaries,” and I was probably as bereaved by not getting to have even one “closure” meeting with my hospice team as by anything. The aides were much more human; one came to visit me once, and our mainstay came to his little memorial gathering.  I gave her his watch.  At Christmas time I wanted to send each of them the maximum of $25 I had been told I could give them as an annual gift, but when I asked about this on the phone I was told no such thing was allowed, leaving me (unable to remember who told me that was OK — a nurse, I think) fearing that I had given the impression it was the aides who had told me that.  I didn’t want to get them in trouble for nothing.  They never asked me for anything.

So it ended weirdly.  I wrote to the nurse and the doctor once or twice since and got no answer.  But what the hell — it was a wonderful support system for us, saved my health, gave J a warm kind of social life to look forward to.

In retrospect, an intermediate level of palliative care, that could have been supplied for half the cost or less of hospice, would have been appropriate for much of that time.  In fact, if I could have accessed just a fraction of the cost of hospice from Medicare to pay for just the most important part of it — the two aides who came three times a week to bathe him, dress him, and get him up, thus relieving the strain on me (and the isolation for both of us) just enough to make the crucial difference — it would have saved Medicare an enormous amount of money.  One of my e-mails to the doctor was to suggest this, telling her (anonymously, of course) about some of the Lewy patients on our list who have lived for years in an apparent near-death condition.

Sorry to go on so long.  The main point I started out with was that it is well understood that Lewy is a terminal disease and you can often get hospice help sooner and for longer than you’d think — and even if there ideally ought to be an intermediate option, it is, under current circumstances, the best thing that could happen to you.

*     *     *

[A nurse, now caregiver, on the list wrote me that when she worked on hospice in the past, she’d kept in touch with deceased patients’ families for weeks or even months afterwards.]

How human things used to be!  I think it’s probably some MSW-school theory — “boundaries,” “closure.”  I can see that they want to protect hospice personnel from having their lives cluttered up by former patients’ families hanging on to them when they need to focus on current patients.  I can also see that in some cases that attachment could become a real problem.  But I think they could find a more human way of handling it — for ALL concerned.  They just cut off contact so brusquely (though they confide in you beforehand why they’ll have to do that and that they’ll find it hard, too).  It seemed to me that one simple good idea might be to have one (if they have to have a jargony name for it) “closure meeting” with the whole team and the family to debrief about the death (especially if the hospice team wasn’t there!! die on a Friday night, and all you can get is strangers!) and to say thank you and goodbye.

And, no, I didn’t know “bereavement” from a hole in the ground.  They were total strangers — professionals at “handling” grief.  The woman who called me was very nice and approachable, that wasn’t the problem.  I would gladly have met her if I’d had time.  It was that there was something demeaning about being “handed over,” with tongs.  Maybe it was harder and messier before when the “boundaries” weren’t so neatly and artificially drawn.  But it was also more real.

Funny story:  my close friends (the karate teacher and his girlfriend) came over after J died, and so did a hospice nurse I’d never met before, to certify the death.  My friends and I were a little giddy.  The nurse said something about getting in touch with “Bereavement” and I said, “What’s ‘Bereavement’?”  She said in the most lugubrious voice, “. . . Sadness.”

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You Think My Life is Hard?

March 1, 2010 at 1:17 am (By Amba) (, )

It’s a breeze!  This is what it was like in 2005 (slightly bowdlerized just to be polite).

~~~~~~~~~

[We had just come back from Moscow, from a karate tournament, where J was an honored elder and we had lots of strong young help.  But he was exhausted.  It was our last such trip.]

9/21  J is better today, but it’s been an uphill struggle.  Monday was the first day he was able to walk to the bathroom rather than ride in the wheelchair.  [But nothing was happening since we got back], so I gave him a stimulant suppository which had no apparent effect.  Then we got dressed to go to [the acupuncturist’s] for the first time.  I’d doubted he had the strength quite yet, but he wanted to go . . . We got down two flights, him mostly bumping down on his butt, when he said, “I have to go to the bathroom.”  So we turned around and started back up, him quickly so exhausted he could barely crawl up the stairs.  It took a long time, and when we got into our doorway, him rubber-legged and buckling, he [had an accident].  That was the least of our troubles  I got his pants off and provisionally cleared away, but then he really couldn’t stand up any more.  I covered a stool with a towel and shoved it half under him, but he wasn’t on it all the way and was half falling off.  He was also shoved up against the stove knobs and his body kept turning a burner on, and the black baking pan the coffeepot was standing on got hot and he burned his arm on it.  All this time I’m struggling desperately to keep him off the floor, we’re both smeared with shit, and he’s yelling at me “You’re killing me!” . . . So finally I somehow managed to get the wheelchair through the door and shove it up the single step from the kitchen and under his butt without it falling backward down the step.  Then I was able to wheel him to the bathroom and wash him (and the wheelchair) off.  We were both exhausted and soaked with sweat.  Good workout.

9/22  We got out to acupuncture yesterday, but when we got back J was too weak to get up the stairs.  Close to the 4th floor landing he collapsed and just lay on the stairs, and we had to call 911 to get help.  The strong young cops who came could barely help him.

9/26-7  We dared to go out to PT today.  J got in the shower quite nimbly, then needed to lie down for 5 minutes.  He got down the stairs OK, taking only the 2nd of 4 flights partly on his butt.  When we got back, climbing the stairs was a grueling Sisyphean ordeal, but we made it without help.  I dragged the wheelchair up each flight ahead of him so he could rest in it.  On the stairs, I felt as if I was doing most of the work, pushing him up.  On the 4th floor landing we got into an actual physical brawl.  I was trying to get him to move his foot so he’d be positioned at least partly over the wheelchair before he started to sit down, instead of squatting on air at the top of the stairs with feet frozen to the spot and knees buckling.  He perceived this only as maddening nagging.  I don’t know how it started but he was pulling my hair and we were flailing away at each other, trying to slap, kick, pinch, claw and bite.  It was ridiculously ineffectual, like a fight in a dream; we must not have wanted to really hurt each other.  The upshot of it was that I sort of tackled him and threw him into the wheelchair, half-unintentionally.

9/27-8  We went out to acupuncture today.  By the time we got there, J was already spent, dreamy with exhaustion.  When we got back, I had him sit in the car with me waiting for a 6 PM parking place to become legal; I canted the seat back so he could nap.  Even so, from the time we left the car on Sullivan and 4th [less than 2 blocks from home] to the time we got upstairs was 1 3/4 hours.

I’ve figured out a new, solid way to boost him up the stairs, with my right shoulder.  I basically fit it under his butt, and lock my right hand onto the vertical metal bars of the banister.  He is essentially sitting on my shoulder.  This feels secure, though it puts a lot of pressure on my knees.

At the top of each flight, though, he’s exhausted and panicked and frustrated and humiliated and confused, and heads for the wheelchair like a cow to the barn.  I’ve placed it off to the right, the only and closest place I can put it.  But heading for it puts him with his front toward the chair, his butt hanging out in space over the staircase, and his quads failing.  And he tries to sit down.  On nothing.  . . . When I try frantically to redirect him, he gets mean — says in a threatening voice, “Don’t drive me crazy, Annie or I’ll rap you!” . . . The best I can do is try to stay detached, soothing and calm, the way you would with a flailing, boneheaded horse.

He’s dreaming now — laughing in his sleep.  The lucky bastard.

9/28  J had his neurologist appointment today.  So we had to get up early.  He woke up of his own accord before 7, bright and clear. . . . He remembered [people].  He recited Schiller.  He got into the shower rather nimbly, without a lot of coaching.  He went down the stairs with ease.  When we got home, he went up the stairs with ease.  That is, I just put my hands under his sitz bones and assisted, rather than putting my shoulder under his butt and doing most of the work.  I had him rest in the wheelchair at the top of each flight, but he didn’t need to.

So of course, in shock from being whiplashed from one of his worst days to one of his best, I fell asleep and got a $65 parking ticket.

Was it something [the Korean acupuncturist] did?  She let blood from his scalp and fingers, gave him some herbs, and said, “He’ll be better tomorrow,” which was hard to believe.  Was it his good deep sleep —  “sleep that knits up the ravell’d sleave of care” — with laughing dreams?  The cool dry weather?  Or just the universal perversity that when you call the repairman, the problem vanishes?

NO FUCKING IDEA. . . .

The neurologists were impressed with his condition.  They said he was better than they would have expected.  If they had seen him yesterday, they might have thought he was far down the path to total invalidism.

Yet, I know enough not to get my hopes up and start making plans for more days like this.  Just to enjoy this one, and use it to gain some traction myself.

9/29  J continues good.  He came up the stairs without a rest tonight after PT.  He did [have another major accident], but overall, that’s a net gain.  If I have to choose, I’d rather swab that deck than tote that barge.

~~~~~~~~~~~~~~~~~~~

Incredible, huh?  I know, I can’t believe it myself.

Life now is a breeze by comparison.  I’m glad I recorded all that and more, so I can truthfully say, “The worst is over.”

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I’m In Shock.

September 11, 2009 at 11:25 am (By Amba) ()

It seems as if, just like that, J has been accepted into Duke Hospice.

It was recommended to me to have him evaluated for it, and his doctor was willing to refer him, largely for my sake.  The common perception of hospice is that it’s for the terminally ill with less than six months to live, but that’s no longer strictly accurate.  Having an incurable, chronic, progressive (even slowly progressive) illness that admits of only palliative care can be enough, though they reevaluate you every six months.  I thought that J’s relative alertness and general health might disqualify him, but his degree of helplessness, incontinence, and dementia may have overridden that.  The nurse who came to evaluate him seems to have assumed from the get-go that he was in.  (Seems.  I’ll let you know if they change their minds.  But it doesn’t look like it.)

This may mean that someone will come to bathe him and change the bed as many as five times a week.  It means that we will no longer have to pay even copays for covered medications.  (Screen Actors Guild’s health plan drug program has been providing them, already a great break; but in hospice, Medicare covers them 100%.)  When the intake nurse went out to her car and brought in three bags of bed pads and adult diapers, and said “You won’t have to buy these any more,” I thought I had died and gone to heaven.  If I don’t have to buy those, I can hire someone to take care of him once a week so I can go out.

It means that if he gets agitated in the middle of the night, as he occasionally does — demanding to go outside and see if I haven’t been lying and he isn’t actually in Greenwich Village — I’ll have someone to call for advice, and an emergency supply of anti-anxiety meds in the house.  (You know me, the anti-drug — but hey.)

They have a small respite facility, which means that if I ever need or want to get away for five days — for medical, family, or burnout reasons — and there’s a bed open, he could stay there and be cared for around the clock.

For a compulsively self-reliant, stoical type like me, the prospect of having these kinds of help is about as believable as being teleported to Oz by a tornado.  I won’t believe it for a while.  Then I’ll feel guilty for adding to the deficit.  And then I’ll get the bends.

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Does the VA Nudge Seniors Toward Death?

September 2, 2009 at 3:13 pm (By Amba) (, , , , , )

I didn’t buy the “death panels” rhetoric, but based on this, I’m reconsidering.

Note that neither Hot Air nor the WSJ actually links to the VA booklet.  When you do, the first thing you get is this disclaimer:

Your Life, Your Choices was officially retired from use in VA in 2007, and an expert panel was convened to review and comment on an online module version of this document that was under development at that time.

Ha!  So there are “panels.”  Expert panels.  Doesn’t that make you feel better??  God, I’m so sick of the fucking “experts.”  What does that word cover anyway?  Psychologists?  Economists?  Are there any combat-disabled veterans on the panels?  The only “experts” on this subject are the patients and families who’ve been there, and the good doctors and nurses who’ve been in the trenches with them.

The Your Life, Your Choices online module is currently being revised based on suggestions from the expert panel members and from chaplains representing eight different faith groups.  The revised online module is scheduled to be released on the My HealtheVet Web site in the spring of 2010.

Please note that portions of this document have been interpreted by some to be negative in tone and insufficiently balanced. The revision process is addressing these concerns.  Also note that some of the links contained in the document are no longer active.

Hey, wait, I found the Expert of Experts!  His name is Robert A. Pearlman, he’s the author of the VA booklet, and in this photo at least he bears an uncanny resemblance to Tim Geithner.  (Purely rational Vulcans all?)  He studied ethics at Harvard.  How much more expert does it get?

He received post-residency training as a Robert Wood Johnson Clinical Scholar, a Fellow in the Ethics and the Professions Program at Harvard University, and a Faculty Scholar in the Project on Death in America. He joined the [National] Center [for Ethics in Health Care, apparently part of the VA] in the summer of 2000. His interests and expertise pertain to empirical research in clinical ethics (especially end-of-life care) and organizational ethics. His research has explored euthanasia, the role of quality of life in decision-making, the validity of life-sustaining treatment preferences, medical futility, advance care planning, physician-assisted suicide, and relief of patient suffering. He is the author of two books and over 100 publications in medical journals and book chapters. His most recent book, entitled Your Life, Your Choices, is an interactive workbook to help patients and family members with advance care planning. Your Life, Your Choices will be available to veterans through MyHealtheVet in 2007.

Forget Ezekiel Emmanuel:  is this the government’s Dr. Death?

But now I’m really confused.  The preface to the online booklet now says “Your Life, Your Choices was officially retired from use in VA in 2007.”  Made available and retired in the same year??  Or am I misunderstanding?

Here’s Jim Towey, creator of what he calls “the most widely used living will in America,” “Five Wishes” (not unlike Your Life, Your Choices, “introduced in 1997 and originally distributed with support from a grant by The Robert Wood Johnson Foundation”), being vague about exactly when the workbook was instated (I’m trying to figure out whether the dates need to be jiggered to make Democratic administrations solely to blame for the thing and Republican administrations the blameless heroes who questioned it):

Last year, bureaucrats at the VA’s National Center for Ethics in Health Care advocated a 52-page end-of-life planning document, “Your Life, Your Choices.” It was first published in 1997 and later promoted as the VA’s preferred living will [VA “Fact Sheet” rejoinders that it is “not an advance directive or a living will.”] throughout its vast network of hospitals and nursing homes. After the Bush White House took a look at how this document was treating complex health and moral issues, the VA suspended its use. [VA “Statement” says “The document was developed under a federally funded research grant over a decade ago and in 2007, the Veterans Health Administration convened an outside panel of experts to review the tool and assess its merits. Overwhelmingly, the panel of experts, which included a diverse group from the faith based and medical communities, praised ‘Your Life, Your Choices’ and endorsed its use.”] Unfortunately, under President Obama, the VA has now resuscitated “Your Life, Your Choices.”

Who is the primary author of this workbook? Dr. Robert Pearlman, chief of ethics evaluation for the center, a man who in 1996 advocated for physician-assisted suicide in Vacco v. Quill before the U.S. Supreme Court and is known for his support of health-care rationing.

Here’s a perfectly decent handout on advance directives which, however, refers people to Your Life, Your Choices at the end.

So the booklet was “developed” with federal money during the Clinton years; it’s unclear when the VA began using it; and it’s unclear what happened to it in 2007 and whether its use has now been reinstated without input from “faith panels.”  (The booklet encourages its users to consult religious advisers.)

Looking at the booklet, it certainly hits you right between the eyes with some gruesome though not unrealistic scenarios, and there is certainly a none-too-subtle bias in the discussions against taking heroic measures — or even antibiotics — to prolong a life clearly near its natural end:

Chris Larsen [age unspecified] never told his family what kind of medical measures he’d want if he became critically ill.  He is in a nursing home after having suffered a severe stroke 9 months ago.  He is paralyzed and unable to take care of himself or communicate in any way.  Now he has pneumonia and will probably die unless he goes to the hospital to receive intravenous antibiotics.  He also may need to be  on a breathing machine for a week or so.  The doctor says that his chances of returning to normal are remote, but that he has a fair chance of getting over the pneumonia.  His family members disagree about what they should do. His son Bill says, “Dad was never a quitter.  He’d want to fight to the very end, as long as there was the slightest hope.”  His daughter Trudy disagrees. “Sure, Dad wasn’t a quitter, but he wanted to die naturally—he would be horrified to be kept alive this way.”

In fact, Trudy’s views were the closest to Mr. Larsen’s true opinion. But the family never had a way to find this out. They treated his pneumonia and he lived another year in the nursing home without recovering his ability to communicate or care for himself.

This is on page 5.  It’s offered as an example of why you need to think and talk about these issues while you can.  The trouble with such hypothetical scenarios is that not only do people differ in their values and beliefs, but each case is unique and often unpredictable in its particulars.  After we got to Chapel Hill just about exactly three years ago, J declined both mentally and physically, until in December 2006 he ended up being taken to the hospital with pneumonia.  He certainly would have died if he hadn’t been treated.  His doctors and I agreed that a DNR order (do not resuscitate, i.e. no ventilator or defibrillator) at least was appropriate, and a woman resident asked me if I didn’t think it was time for “placement outside the home.”  However, IV antibiotics was all it took to resurrect J — in a matter of hours, he went from virtually comatose to sitting up in bed talking coherently on the phone to my mother — and it turned out that most of his steep mental decline over the autumn had been due to incipient pneumonia, not accelerating dementia.  The rest is history.  If he were in a late stage of neurological disease, contracted in a fetal position, uncommunicative, and uncomfortable, IV antibiotics would not be appropriate.

(No, he doesn’t have a living will.  Probably the best course for him is to ask him to sign a health care power of attorney.  Though actually, I just learned from this very booklet that if you trust your spouse, that’s who will be consulted in the absence of a POA.  Either way, it will someday be up to me, who knows J best, to decide whether, based on his mental status, responsiveness and awareness, he who loves food so much would want to be kept alive by a feeding tube.  J is also the kind who might well look me in the eye someday and say lucidly, “Let me die.”  But if something happens to me first?)

Naturally, the VA booklet is being quoted selectively by conservative culture warriors.  (The exercise on “What makes your life worth living?” on p. 21, however, doesn’t need selective quoting to be every bit as bad as they say it is.)  Towey in the WSJ notes that “There is a section which provocatively asks, ‘Have you ever heard anyone say, “If I’m a vegetable, pull the plug”?'”  In full, that section merely notes that people sometimes do actually say things like that without being very clear about what they’re talking about:

Have you ever heard anyone say, “If I’m a vegetable, pull the plug”?  What does this mean to you?  What’s a vegetable?  What’s a plug?  Even people who live together can have very different ideas about what the same words mean without knowing it.  When you say, “pull the plug” it could mean a variety of things:
•Stop the breathing machine
•Remove the feeding tube
•Don’t give me antibiotics
•Stop everything

The booklet’s central question is, “For you, is there such a thing as unacceptable quality of life?  Where would you draw the line?”

It’s not that these are bad questions.  It’s, why is the government asking them? (A far more important question than “Did a Democrat or a Republican administration ask them?”)  Or, for that matter, why is an insurance company asking them, or a nursing facility which makes money when patients’ lives are prolonged?  All of these parties have classic conflicts of interest — as, for that matter, can family members eager to be rid of a burden or to collect an inheritance.  Families are not always havens in a heartless world — as Your Life, Your Choices rather ghoulishly acknowledges when it invites you to check “Yes,” “Not Sure,” or “No”:

I believe that my loved ones should take their own interests into consideration, as well as mine, when making health care decisions on my behalf.

I believe that it is acceptable to consider the financial burden of treatment on my loved ones when making health care decisions on my behalf.

The ultimate question is rather like that about sex education:  is this a private matter, even if it inevitably means some kids will be kept in barbaric ignorance or misinformed?  Do you really want some nanny bureaucracy with a “rational” agenda to impose its one-size-fits-all values on the intimate lives of your kids?  Can the transmission of information about such issues ever be value-free?

It’s doctors who should be educated, in the most humane possible way (I mean they should read the humanities, philosophy and literature, as well as psychologists and other “experts”), on these issues, and doctors, together with trusted family members and chosen religious advisers, who should be working out the decisions.  Family doctors used to do this, and no doubt plenty still do.  Yes, it’s a priestly function.  People do look up to their doctors that way in life-and-death situations, so doctors might as well live up to it.

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The Mis[t]ery of Writing [UPDATED AGAIN]

May 28, 2009 at 10:58 am (By Amba) (, )

It’s been long enough since I tried to do any “real” writing (where you conceive something in your head and then try to execute it, and of course it won’t hold still for its portrait) that I’d forgotten the wisdom of my “Note to self:  don’t go there.”

It’s only a blog-essay on the Hubble for my dust-gathering Natural History blog (which died for lack of time and lack of feedback), so it doesn’t quite have to meet the high formal standards of a “real real” essay, to be chiseled into print.  But it sucked me in nonetheless — because I’m enthralled by the Hubble and think its imagery is probably a turning point in human evolution, etc. blah, blah, blah — and I vanished from the “real” world.  The feeling was in every way like nodding off while driving and feeling my hands evaporate off the wheel, the driver’s seat suddenly go empty.  Not least, it’s up to me to keep our life on the road and I can’t let myself be ravished away from the controls.

But there I was yesterday, obsessively reading and linking to more and more, not even caring to tweet or look at my e-mail, struggling to keep formal control of the unwieldy, metastasizing thing, and at the same time feeling driven to be done with it so I could/before I could return to my maintenance and other responsibilities.  Both J and the household deteriorate alarmingly fast when neglected.  Someone I’ve been urging to blog literally for years has finally begun, and announcing it can’t wait either.

Now I remember why I made a pact with myself not to try to “really write” while taking care of J.  Fact checking is bad enough — it has a fainter version of the same obsessive quality, the contradictory drives to overdo it and to get it over with — but while fact checking takes time and attention, it doesn’t take a fraction of the energy writing does.  Writing is like being a spider and spinning a web out of your own guts; it’s like welding with an acetylene distilled by your liver.  It takes it out of you.  To create order that did not exist before defies entropy, which requires a disproportionate input of energy, and that energy is sucked out of your own lower belly. The few times I’ve broken my rule and “really written” something under this regime, I’ve felt drastically drawn and drained.  Dracula is blamed.

Meanwhile, you’re driven by the certainty that any minute, the thing you’re trying to get down will get away, or dissolve and change shape.  (Writing is probably a lot like hunting in the jungle.  If the prey were made of mercury.)  You need to focus on its pursuit with laserlike exclusivity.  You cannot divide your attention or spare a scintilla of your energy.  Interruptions are much worse than annoying, they’re tragic and enraging.  And all this is wildly out of proportion; it’s all for something that doesn’t even need to be written.  (The more I find has already been written about the Hubble in the same vein, the more I have a sense of redundancy.  So then I want to link it all, on the equally false assumption that others are as obsessed as I am.)   At best, a few people will read it and be fleetingly entertained or stimulated.  My need to write it meets no complementary need in the world; if I didn’t do it, no one would know or care.

Meanwhile, J is weak.  A phase?  Or a trend?  Who knows?  All I know is that it’s a vicious cycle.  The harder it is to get him up, the less he wants to get up, and the less I want to struggle to get him up, and the more I yield to escapism.  But the less he gets up, the weaker he gets.

I need a nap.

UPDATE: On the other hand . . .

. . . (and this point almost always comes, always preceded and paid for by misery; why can’t we remember that??) it’s so neat when it starts to come right . . .

UPDATE II: Now it’s done, and of course I’m soaring (probably also disproportionate) and wouldn’t have missed it for the world.

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