Journal Entries

NaJoPoMo 2013 The Art of Death 24

MRI

The last time I had an MRI session was in the Spring of 2009; from the photographs it generated, the radiologist was able to diagnose that I had syringomyelia. According to online literature, a paient with SM ought to have an MRI at least once a year, but out here in the Wild West we apparently can't do that sort of thing. I finally prevailed on my PA that it was high time, and permission was granted for me to be taken, by ambulance, to the radiology department at UNM.

{Lil dozes off}
{Lil twitches awake}

MRI stands for Magnetic Resonance Imaging, a diagnostic technique developed during the 1950's and 1960's. I invite you to read up on the technical details in Wiki or one of the friendly ask-a-medic sites, for I am still too groggy from the single tablet of Ativan I was given before we set out last night to give a friendly, easy-to-read summary. Of Ativan, later.

One does not wear metal to an MRI session, nor does one allow metal objects to infiltrate the area around the machine. I know there are three main things involved in running an MRI scanner: radio waves, extremely strong magnets, and liquid helium {Lil dozes off again, then twitches awake}

OK, at that point I had to stop writing and find an activity that wouldn't cause the computer to be dropped on the floor from insensible fingers. Since then I have experienced a psychological "crash" that took the form of a spate of irritability and all-around glum. I am going to try to avoid psychotropic drugs in future. There's a rumor that Ativan is going to be made unavailable by the FDA because it's addictive, and that Ladera will dispense Haldol instead.

There's not all that much to tell about having an MRI. It's loud. THUMPITA-THUMPITA-THUMPITA, THWOCK THWOCK THWOCK THWOCK BUZZZZZZZZZZZZZZZZZZ BANGA BANGA and so forth. The noise can exceed 120 dB, so I was fitted with headphones through which the technician could talk to me, and offered a choice of satellite radio stations. I asked for classical and got easy classical, which didn't matter anyway since I couldn't hear it once the machine went to work.

I think the Ativan mixed with my sleepless condition to make me as limp as a cat in a sunny window, because I was startled when the bench moved to pull me out of the tube. Somehow, two and a half hours had gone by. Maybe it's because there was no laugh track!

When the ambulance people took me to UNM Hospital's radiology department, it was almost dinner time, 4:30 p.m. Quite naturally, I was concerned about eating on my return to Ladera, and whether I was going to score something better than a peanut butter and jelly sandwich on a Saturday night. But it's a hospital -- there is a Subway open 24/7 near radiology. So the ambulance attendant bought me a roast bif sandwich, I carried it proudly back to Ladera, enjoyed my meal, lay down, and went to sleep for 10 hours straight. Which may be the longest I've slept without interruption since January 2012.

I have a CD of all the images, but will await the radiologist's report before sharing. No prognosis without diagnosis.

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Latest reply: Nov 25, 2013

NaJoPoMo 2013 The Art of Death 23

End of Days

I have just finished reading a collection of essays titled _At the End of Life: True Stories About How We Die_ edited by Lee Gutkind. The essays have been written by doctors, nurses, chaplains who work at hospices and by the relatives who have witnessed the death of loved ones. Nobody wrote from the point of view of being a resident, although one woman doctor decided to experience being a resident for several months as part of a worthy attempt to put herself in her patients' shoes.

It occurs to me that I have never met my doctor. My interface with my doctor is a very intelligent and compassionate PA (physicians' assistant) who is empowered to make all the routine decisions regarding my case. Debbie and I have had several thorough going discussions regarding my advance directive and where I draw the line concerning my quality of life. This dovetails with the book. Far too often, it seems that crucial decisions regarding end-of-life care can be made on one's behalf by a single person who might have a religious ideology, or who may worship heroic measures. Or it may be a business decision. One essay written by a nurse in a major surgical ward describes how a woman was brought to her ward who had had unsuccessful surgery. Not botched surgery -- her illness was simply too far advanced for the surgery to do any good, although the surgeons didn't know this until they "went in."

She should have been placed in the ICU, and would have, but for her DNR form. The form specified no heroic measures, and so a business decision was made not to spend ICU resources on her. Her spouse was too much in shock to advocate for her and so she wound up in the surgical ward, where there were insufficient staff resources to monitor her constantly. It was not a happy story, but it makes a good warning for anyone who is walking around feeling immortal.

Make your will, tell your doctor how you feel about so-called heroic measures, account for the disposal of your body, and kiss your relatives every day. That way, when Death taps you on the shoulder (EXCUSE ME...), you can face forward and have the experience instead of panicking over things unfinished. Well, there are always things unfinished -- you may not have made it across the street -- but you know what I mean. You do not want somebody else making those decisions.

I had not realized that the hospice system is so young. It began in England in the 1970's and migrated to the US approximately a decade later. Being admitted to hospice doesn't necessarily mean going to a special facility; E, who troubles me on so many levels, is on hospice. She is visited by a hospice nurse once a day, to whom she turns in pages of complaints about how everyone yells at her and nobody comes when she calls. The nurse performs tasks, such as bed-bathing, that the regular staff don't have time to do, and liaises with the nurse on the hall. I presume that if E's condition slides again, then a hospice nurse will spend more time with her.

The raison d'etre for modern hospice was that some response was needed to the surge in medical technology. Up to the middle of the last century, medicine hurled itself full strength into the battle to rescue and heal the patient. Medicine must needs keep the patient alive at all cost. Then, within the span of just a few decades it became possible to prolong the life of a body indefinitely. From this came the concept of brain death, and, consequent to the case of Karen Ann Quinlan, the right to withdraw life support from a person in a "persistent vegetative state."

Also, with the emergence of a business model of medicine in the US, being kept alive at all cost took on a terrifying literal meaning for families who incurred huge debts from those heroic measures. I suspect that the only patients kept in a persistent vegetative state these days are those awaiting organ harvest.

So. Have you thought about what constitutes minimum quality of life for yourself?

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Latest reply: Nov 23, 2013

NaJoPoMo 2013 The Art of Death 22

The Waste of a Day

Exhaustion. Sleep deprivation. That sense that your IQ is slowly dripping out of both ears, like candle wax. The mood is dull, enthusiasm absent.

I spent almost four hours this morning, jiggering about with a render (3D image project) that should have taken a quarter of that. And in the end I couldn't even finish because the nurse ordered me to change position. And that meant giving up the big laptop and switching to the netbook, which doesn't do graphics.

As I mentioned in comments yesterday, E's condition improved last night, which meant that she groped for the remote control, turned the telly back on and berated the first aide who came into her room. "I told you, don't ever touch my television!" And then she ordered a peanut butter and jelly sandwich.

I am deeply conflicted by my irritation at her assumption that the world must defer to her whims because she is dying. We're supposed to be nice to people who are dying. Aren't we? Even convicted murderers get last meals. This is the same kind of torn feeling I had about my step-father when I was his care-giver, something I know that others have felt as an aged relative's impending demise throws restrictive hoops around their own lives. You wish they'd get on with it and set you free, and then you feel terrible and guilty for even thinking that.

There must be some deep underlying superstition here, to presume that being pissed off with a dying woman will somehow hasten her death, so that, on top of being tired to my soul today, I'd have to muster up some remorse for my evil thoughts if she actually died. Magical thinking.

When someone is dying in a nursing home, unresponsive and breathing irregularly, the routine on the hall and in the building continues, as it must for the 115 others who are healing or subsisting. There are other televisions, announcements on the PA system, bursts of laughter from a cluster of aides at the nursing station. Carts and trashcans are trundling up and down the hall. A baby is crying, a floor polisher is making floor polisher noises. If it were me, I think I would like to be able to hear the world going about its business, not be isolated by the false cheer of a rerun sitcom.

Well, if I can stay awake till ten, I'll probably sleep despite that wretched little box, and feel better tomorrow, and make art, and joke with the aides, and write a better journal.

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Latest reply: Nov 22, 2013

NaJoPoMo 2013 The Art of Death 21

Back to the Actual Subject, Death

[some content removed at user request].

The body is hard wired to persist as long as possible, so if we are at all cognizant of what's going on and have time to reflect on it, the experience of dying must be at least a bit disturbing. I'm deadly serious when I ask this: does it matter how we feel about dying, as we die? Look at the special attention we pay to "famous last words." Some people make a conscious effort to die with style, and make pronouncements that were clearly composed well in advance. "I believe that a life lived for music is an existence spent wonderfully," said Luciano Pavarotti, dying in 2007, "and this is what I have dedicated my life to." He had good lungs right up to the point when they stopped for good. E is more likely to say, finally, "I need more Dilaudid," and I wouldn't think any the less of her. See, we never get a chance to practise this death thing. Perhaps she'll pull out of this, live a little longer, and we can talk about it.

So here is an exercise. What would your last words be? Here are a few to get you started:

I'd hate to die twice. It's so boring.
Richard Feynman

Now why did I do that?
General William Erskine, after he jumped from a window in Lisbon, Portugal in 1813.

Don't disturb my circles!
Archimedes

I just wish I had time for one more bowl of chilli.
Kit Carson

I have just had eighteen whiskeys in a row. I do believe that is a record.
Dylan Thomas

Don't die like I did.
George Best

Where is my clock?
Salvador DalĂ­

So, this is death. Well!
Thomas Carlyle

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Latest reply: Nov 21, 2013

NaJoPoMo 2013 The Art of Death 20

The Evil Green Ball

During my last few years at home, I knew I had one clear enemy -- the floor. If I fell out of my chair, slipped off the bed or flubbed a transfer, I would fall, and we paras don't go down like other folk. Our legs twist into nasty pretzels or don't bend at all, sending us face-first into furniture or walls. Been there! So everything about my posture involved leaning away from danger, and when Dan innocuously asked me to lean forward, just while sitting on the edge of the bed, he discovered a real psychological block in an otherwise willing patient. My idea of leaning forward consisted basically of leaning back.

Dan and Adrienne consulted together -- Adrienne was my physical therapist -- on how to get me past this very real terror. And so Adrienne would come strolling into the room with a grin on her face and the Evil Green Ball under her arm. About two feet in diameter, the EGB would be placed in front of me, and I was expected to smiley - yikes LEAN FORWARD, rest my hands on the squishy inflated ball, and then roll it forward and back, then from side to side. I think it took her most of one session just to get me to put my hands on the EGB while she chocked it from the other side with her foot, and even more stern persuasion to get me to remain there, sweating and hyperventilating.

Well, I improved, and meanwhile, in addition to ticking off the self-sufficiency goals each week, Dan organized the acquisition of Harkonnen, and brought a whole new kind of equipment into the therapy department, the Beasy board. I was skeptical (read: scared) the first time he walked in with it, but soon discovered its advantages, and within the month I was self-transferring again.

smiley - tea

Being a patient is a license to be self-absorbed, in which pursuit one is aided and abetted by the staff whose job is to make you better. It was a long time after I had been signed off as fit to fly by Dan that I pieced together just how demanding the therapist's job is. Only certain parts of administration are more computerized than therapy. At the end of the day, the CNAs sit down and handwrite updates to patient charts. There is a medical records office behind the nurses' station, and maybe the handwritten notes are transcribed there.

Last year Dan was texting directly to the computer via a smartphone-sized device from my room. Now he's pushing a laptop around on a wheeled table. He, and all the other therapists, must account for every minute of their time to the computer, including time "off the clock" if they want to do something like chat with a patient friend for a couple of minutes. There will be 49 minutes with Patient A, 62 minutes with Patient B, 55 minutes with Patient C and so on. The pernicious part is, the computer system gives feedback about their productivity. Too many stops to chat and next thing you know Dan has a dent in his productivity quotient.

Why is the system doing this to college-educated quasi-medical staff? Because a programmer or tech mentioned that the system ~could~ measure stuff like that, and so put the idea into the head of a business manager. All those wonderful metrics! A time clock gone wild! Management power trip! It's a bad thing. I get that a database of goals exists and that's why it's 45 minutes for Mr. X and 70 minutes for Mrs. Y, but what if a therapist were to give a bit of extra time to one of his cases, a reassuring conversation? There is no leeway there for compassion, for the unplanned extra moments that might make a difference to a patient's mindset. The therapists are on piece work.

smiley - tea

I'm on restorative therapy now, a thrice weekly occasion aimed at preventing deterioration, at the very least. Because of how the system works, I had to choose between endurance (going down to the gym and using the arm cycle and some other equipment) and range-of-motion work (remaining in bed and having my legs flexed and rotated through each joint). Can't have both. I loved going to the gym, but chose range of motion, for the continued flexibility of idle limbs and the good side effects for other autonomous subsystems. And, when it's not too crowded, I sneak down to the gym and hang out with the good people there.


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Latest reply: Nov 20, 2013


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