A Global Look at Death & Dying

Three things you and I have in common with the rest of the world: We are born, we live, we die.

Lisbon - Conference brochure

Conference brochure

Dying being so universal, it seems appropriate to talk about it. But the truth is we seldom do that, unless it’s happening to somebody else. An interesting group of people who do talk about it got together recently for a global conference in Lisbon I was lucky enough to attend, The End of Life Experience: Dying, Death and Culture in the 21st Century. It was put on by Progressive ConnexionsInterdisciplinary Life, a not-for-profit network registered in the U.K. (Freeland, Oxfordshire) and a successor to the organization that ran earlier conferences I attended in Prague and Budapest. Full disclosure: Part of my motivation for the hard work of creating papers for these events is the mesmerizing pull of Prague, Budapest and Lisbon. That mea culpa is now out of the way.

As end-of life conferences go, this was the best. Not because any great, existential questions were answered, but simply because it proved so eloquently that we’re all in this life (and death) together. We struggle with the same questions about pain, loss and grief; we face the same dilemmas about aging, illness and dying itself. Whatever corner of the planet, whoever we are.

Lisbon - Castelo view

Lisbon at dusk

In my group in Lisbon were a couple of anthropologists, professors of everything from Philosophy to Nursing to English Literature, an actress/storyteller, some doctors & nurses & clinical psychologists, an interfaith chaplain, a textile artist – just lovely people from corners of the planet like Portugal, the U.S., Canada, Malaysia, U.K., Australia. Ordinary people sharing extraordinary insights shared below (and in subsequent posts on this page.) No attention was paid to titles and degrees – a very good thing for me, since an MFA in short fiction wouldn’t exactly be at the top of the list; attention was paid only to the voices, insights and generously shared thoughts. Here’s the first report:

Pain. Nobody gets out of life without pain, and since it’s often a big factor in end-of-life experiences, pain got its share of attention in Lisbon. Conference chair Nate Hinerman (a professor at Golden Gate University in San Francisco) submitted a paper titled “The Death of Hospice” which was in the first conference segment. Because he was committed to keeping to a strict time schedule – and this was a talkative group not easy to settle down – Hinerman skipped the actual presentation of his own paper. But it was appropriate to the broader issues addressed in the first segment, of which I was a part. There are some big questions here.  Pain

“I argue that as boundaries blur between palliative care, hospice care, and patient-centered curative care,” Hinerman writes, “ultimately, palliative care ought to the goal.” Palliative care means, essentially, do everything to alleviate pain – for patient and family alike. Focus on quality of life rather than life-extending treatments and technologies. “Patients do not benefit,” Hinerman says, “from boundaries like those, say between disease-centered care and palliative care. Or say between palliative care and complex chronic conditions management. Or again, especially between palliative care and hospice.”

In other words, are these fine points (which are eternally argued by professional groups – as well as insurance companies) focused on you and me – patient and patient-advocate – or somewhere else? Boundaries get blurred. “We still need policy changes to support this (palliative care) work, and payment structures to ensure coverage of palliative care.” Hinerman says.

Which brings us to another common theme: money. In both the formal sessions and in casual conversations throughout the conference, the issue of the almighty dollar was often raised. The problem of how to pay for healthcare needs is not confined to the U.S. But more common, and more complicated, is the also-universal question of distribution of finances. Such as: if we spent less on the last few days of life – emergency room and intensive care unit costs are significant especially in the U.S. – could we put those dollars to better use somewhere else?

Lisbon presentation

Doing my presentation

My own paper looked at two different models of Continuing Care Retirement Communities in the U.S. One is a church-related not-for-profit community with independent living, assisted living, nursing and dementia units. Newcomers must be mobile and reasonably healthy, and pay a substantial entry fee, but – as my brother-in-law remarked when he and my sister moved into a similar facility in another state, “the advantage is, they can’t throw us out.” The other is a condominium building in which residents own their apartments but buy into the management company, a national for-profit corporation which furnishes meals, assisted living in owners’ apartments, activities, etc. Both have substantial monthly fees; the condominium community’s are higher, but when a resident dies at least the heirs profit from the unit’s sale. CCRCs now number almost 2,000 across the country – and, while fairly well regulated, none of them are cheap. It is a very big business. One of my questions is: should these populations of aging and dying Americans, among the most vulnerable of groups, be caught up in a multi-billion-dollar enterprise? If something comes up that requires a choice between the aging residents and the bottom line, which direction do giant corporations usually go?

After my presentation, which was mostly a group discussion about such choices, a conference speaker from Malaysia approached me to apologize for not having participated. “In my home,” she explained, “if I were to allow my parent to live in one of those places, no matter how nice it might be, it would bring great shame on my family. Our culture mandates that the family take care of its aging members.” Ah, so. In our U.S. culture, that was also true as recently as two or three generations ago; but we have become so scattered, and so technologically and institutionally advanced, that living with family through dying is a rarity today.

All of the above offers more questions than answers. But they are universal questions and worth pondering: When you’re seriously ill and in pain, what kind of care would you choose? Where would you prefer to die, ICU or at home? Where will you spend the retirement years leading until you die? Pondering – and creating written plans – could avoid a lot of grief for you and loved ones alike.

Lisbon conference group

The 2018 EOL Experience Conference Group

 

Next week: The Lisbon Conference: Appearances from beyond the grave

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

in addition to supplying trained providers, and maintaining ongoing public engagement.We need to increase the consumer demand, and at the same time, continue to pursue palliative care with hospital administrators, so that those services can be bolstered.

Aging, Guilt & When to Complain

One of an occasional series on the advancing years

It’s more than a little ominous: 85. I mean, look at all those good people who missed this mark in just the past few months or so: Oliver Sacks, 84 – just barely. Dead Poets Society founder Walter Skold, 57. Peter Mayle, 78. David Cassidy, 67. Stephen Hawking for heaven’s sake, 76. Approaching 85 is its own little why should I still be around anyway? season of guilt.

Guilt - Lachlan Hardy

(Lachlan Hardy)

So perhaps it’s only right that the impending milestone might involve a teeny negative or two. Guilt will do it every time. For me, it’s a nagging suspicion that this party is about to be crashed. On March 15th of my last turn at being 84, for example, I woke up at 5 AM, even before the alarm rang, to catch a flight beginning an overseas adventure. Everything went right. Bags properly packed. Good breakfast. All devices and power cords cross-checked. Problem-free trip to the airport. Zip through security. Thirty minutes before boarding time, when I heard my name being summoned to Gate 11 it was not even a surprise. Probably left my wallet at home, I figured, or someone just called to say the conference had been cancelled. It was so unexpected, this call, that by the time I reached the gate I was fully reconciled to having had too much good fortune for any one day. They wanted to offer me $500 on a future flight if I’d trade my Business Class upgrade. Such is the emotional hazard of approaching 85.

Then there is the limitations business. Pre-80, who worried about acknowledging limits?  Certainly not I. At 72 I signed up to run my first marathon, just because I figured everyone should try to run a marathon before hitting 75.Runner A bout with breast cancer intervened to mess up my training, but I got back on track at least enough to finish the half, feeling absolutely confident I could’ve kept right on going. (Although probably not for another 11 or 12 miles.) And then. One day in Paris, having inched past 80 with no further temptations into distance running, the ominous stairs challenge sneaked up on me. I had only recently moved, at the time, out of a 4-story house in which I was constantly zipping from laundry (ground level) to studio (4th floor) with nary a care. Thinking it would be fun to trip up the circular staircase to the top of Notre Dame right before closing time, I got about 30 steps and decided to let the rest of the group go ahead. More slowly, I climbed another 20 or 30 steps before my little heart said, “I don’t think so.” This would’ve been less embarrassing were not the Notre Dame lookout designed as one way Up, straight across, and one way Down the other side. Luckily for me the concessionaires were just closing up shop and let me follow them down the Up staircase, which is why I did not have to spend the night locked inside the cold stone walls of Notre Dame.Nob_hill_view

Ever since, I have begun to notice limitations on previously-negotiable San Francisco hills. If the heart doesn’t send out alerts, the lungs huff and puff their indignation. This happens a few times to my intense consternation, and I make an appointment with my doctor. I complain a lot. She orders tests that proclaim everything is just fine and dandy. She speaks briefly of the really sick people under her care, mentioning a few of their ages and afflictions. “You’re 84 years old,” she observes; get over it.”

How am I going to complain when I hit 85?

 

 

The Joy of Unplugging

plug

“Almost everything will work again if you unplug it,” my good buddy Annie Lamott famously said, “including you.”

Heeding Lamott’s excellent advice, this writer has recently unplugged from a bunch of things. Huffington Post’s blogger roster. The list of ushers at 10 AM church services. Automatic evites to a bunch of meetings & gatherings I don’t really, really need to attend every month. Happily, this means simultaneously unplugging from a zillion email lists. Email lists for activist groups like MoveOn, Indivisible, Stand Up San Francisco, etc etc etc etc are something to tackle another day.

Unplugging even extended to regular blogging on this esteemed franjohns.net. But it’s still a joy to post when something worth posting comes to mind and time can be found. It’s also a joy to hear from readers who still read. (Most of all the email from someone I’ve never met who asked when I would be posting again on franjohns.net. Thanks, and here you are!)

Unplugging, though, is tricky. Technology still confounds. Much of life in today’s world must remain plugged in and operational: computers, printers, TV remotes, modems, iPhones and assorted other too-smart devices, home security systems, garage doors, you name it. For technologically challenged people like yours truly, having the passcodes for all these plus a lifetime of data stored in a cloud in the ethersphere for safety’s sake is a source of great comfort. One does not ever want to unplug from The Cloud.plug.1

Meanwhile there are the wasted hours on phones tapping through menus that, should you get to an end, lead to a recording that says “We’re sorry, but the office is closed. Please call again tomorrow.” And the wasted hours on the computer tapping through Help links that eventually lead to articles you do not have time to read, written by frustrated others who had a similar issue but probably nothing to say about yours.

Every now and then, though, one encounters a simple solution to a simple problem. This occurred recently when my lovely Surface computer blinked confusedly at me and went blank. The horror.

I dearly love my Surface. But I am a certified geezer and technologically inept. I did know I simply needed to shut it totally off & restart it. With my old laptop I did this by unplugging, and  removing the battery. But my svelte little Surface has nothing so old school as a clunky, removable battery. I called the Microsoft number with fear and trepidation, figuring I’d be writing off the morning.Surface

Within two minutes I reached an utterly charming young man. “Hold the Start button down,” he advised. “Keep holding it. Now we’ll just talk for a little while. You think 30 seconds isn’t very long, and it’s hard to figure out just how long it is.” Whereupon we had a pleasant exchange of several sentences about the fog in San Francisco. “OK,” he said then, “We’ve actually been talking for just over a minute. If you need to do this another time, just keep an eye on your watch. If you hold the button down for 30 seconds it will shut completely down.” This is valuable information.

And lo, when I pushed the Start button again, all was well, It just wanted to unplug.

Don’t we all.

Throw-Away Culture v The Planet

Building 2.16.17

Built in late 1980s

The very lovely, 12-story building in which I have lived for four+ years – along with 90 other condo-owning geezers, sometimes more delicately referred to as “retirees” or “seniors” but let’s face it – is about to embark upon an exterior repair job that will run upwards of $3 million. Repair. Not build, or upgrade, or renovate. Repair. This building is slightly over 25 years of age. (Its owners average generally at least three times that; are WE getting $3+ million repair jobs? We wish.)

Our building exterior is a material known as EIFS, which stands for Exterior Insulation Finishing System. According to its Wikipedia page, EIFS is “a general class of non-load bearing building cladding systems that provides exterior walls with an insulated, water-resistant, finished surface in an integrated composite material system,” in case you care. I am on the Homeowners Association board of directors. For a writer whose undergraduate degree was in Art and who was born essentially without a left brain, I know more about EIFS than I ever wanted to know; I can absolutely promise you that.

EIFS is still quite commonly in use. But I think they have figured out something that early EIFS people overlooked: using paper in an exterior building material is a very bad idea. Guess what happens when the sealant shrinks and water gets in and there’s paper involved. Our EIFS people hadn’t figured that out yet.

3965 Sacramento April '17

Built in 1905

Oh, well. What’s $3 or $4 million to fix a 25-year-old building? I do have to mention that the 4-story house we sold in order to move into this lovely building was itself built in 1905. Throughout a century or so of earthquakes and California rainy seasons (about half of which time it belonged to my husband  and/or the two of us) our exterior repair ran to a few thousand dollars in repainting every six or eight years. It is hard not to mention that I grew up in Virginia, where 18th century buildings (still doing fine) dot the landscape.

No offense to the building industry, but what’s wrong with building buildings to last more than 25 years without 4’ by 8’ panels falling off (yes, two of them did, in a bad storm earlier this year) in the middle of the night?

Building damage 1

(After the storm)

This essay started out to be all about planned obsolescence. EIFS buildings perhaps are not deliberately designed to become obsolete in a decade or two; ours just happened to fall into that category. And the above just came to mind as I was starting to write. But about planned obsolescence. It has its own Wikipedia page. According to that page, it “tends to work best when a producer has at least an oligopoly” (which also has its own Wikipedia page.) It was inspired not by the building nightmare but by my recent experience with my beloved Epson printer/copier machine.

My beloved Epson WF 3520, age four years, took to printing in weird colors. After extensive cleaning of the print heads and performing other bewildering actions in the Systems menu, I persuaded it to resume printing photos (for instance) in absolutely true colors. But now it’s inserting disconcerting lines across peoples’ faces and stuff. Not good. I made a trip to the local Office Max where it was purchased four years ago to ask what else I might do to make the lines go away. The following conversation ensued:

Me: “Is there another Systems thing I can try?”

Office Max clerk (age 20-something): “Did you clean the print heads?”

Me (proudly): “Yes.”

OM: “And the nozzle?”

Me (hesitantly): “I think so.”

OM: “How long have you had it?”

Me: “About four years. I bought it here.”

OM: “Oh! That’s a pretty good run.”

Me (an aside that was totally lost on OM): “Clearly you weren’t born in 1933.”

But come on now, folks. Four years is a “pretty good run” for a $400+ machine used by a little old lady who doesn’t print out much beyond an occasional letter or a short story every now and then? God help us.

Old-time sales & service shop

The DiMele Bros repair shop in NYC

In the olden days, which are getting more olden by the day, there were places called Repair Shops. There was often one titled Mr. Fix-It. Alas, one does not repair anything much in this brave new day – one simply tosses it away and buys the latest new model. In San Francisco we do have a spot beloved by many, Phil’s Electric. (This is an unpaid plug.) If you have something electric that Phil’s can’t fix, you’ve probably worn it out over too many decades.

Things electronic, however, are another matter. You don’t wear out an iPhone 4, you discard it for the 5 and then the 6 and then the 7 and now maybe the 7S. Can you wear out a FitBit? Or an Apple Watch? Or any item gently referred to as a “device?” Nahh.Funky cellphone lady You can, without undue effort, lose them to theft, ineptitude or malfunction. In the latter case – see above re my lovely Epson – the good news is that function can actually be restored in some cases.

Having just done an internet search I find there are more than a few electronic repair places in San Francisco, so perhaps all is not lost. There’s even one near Phil’s Electric.

Signs of Our Marching Times

march-crowd

The March was intended to be about women’s rights – workplace rights, immigrant and minority rights, the right to make our own reproductive decisions, all those rights that suddenly seem threatened. It turned out to be a celebration of the spirit.

march-tired-poor-better

It was hard to separate rights & purposes from our new president, and hard to ignore the mean-spiritedness that most marchers hope at least to diminish. But it turned out to be a celebration of everything he disdains.

march-umbrella

This writer has traditionally drawn the line at protest marching. In the past I’ve done talks, workshops, phone calls, emails, office visits and the occasional vigil; this year felt like it called for showing up. So along with several friends from the geezer house where I live, I struck out into the rainy San Francisco late afternoon along with a few hundred thousand others. Estimates vary, but we spilled into so many adjoining streets that 50,000 seems a minimal number.

march-im-with-her

The signs say it all. Or a lot of it.

march-super-callous-etc

If anyone’s spirits were dampened by the cold rain, you couldn’t tell. What you can tell, from the smiling faces among the umbrellas, is how it felt. Most of all, it was just heartening to be among all of the above, and among the many scattered signs saying “This Is What Democracy Looks Like.”

6331468167_d7742a8583_b

Yossi Gurvitz on Flicker

A similar sign was photographed by Yossi Gurvitz in St. Paul’s Square during the Occupy London movement several years ago, a darker view of that phrase. But with enough joyful, celebratory gatherings such as those all around America on January 21, perhaps democracy will survive its current challenges — and look like government by the (sometimes jubilant) people.

justice

Age, Agility and National Stamina

It is a little known but verifiable fact that this writer is a graduate of Circus 101. Well, I completed the course, that is, some five or six decadespast my turning-cartwheels-in-the-backyard days.

The author and sister Mimi, circa 1940

The author and sister Mimi, circa 1940

This comes to mind because of all the recent stamina talk. At the time of my circus experience I was several years younger than the current candidates for president of the United States. I am still the age of Ruth Bader Ginsberg, and frankly, Justice Ginsberg and I (I am not officially authorized to speak for my 1933-babe sister) resent the stamina talk. She, of course, is making her debut (speaking only, opening night) with the Washington National Opera this year; I’m afraid opera performance is not on my bucket list. But still.

Stamina-wise there is at least the circus thing. As I recall, my late-life circus experience began with an article in the San Francisco Chronicle about a class offered by the San Francisco School of Circus Arts (now Circus Center) titled Circus 101. It sounded interesting, and at least worth undertaking for a good story. So I called the Circus School.

“Could a reasonably flexible 60-something woman be eligible to take your Circus 101 class,” I asked the nice lady at the other end of the line? She replied, essentially, if you’ve got the money we can work you in. “You can set your own limits,” she said.

So I showed up for the first class, raising the median age by two or three decades, and quickly learned my limits: upside-down is not for 60-somethings. Oh, I could still do upside-down, headstands with my feet on the wall or the occasional cartwheel; but then I tended to get dizzy and throw up, which is not in the curriculum. I found I was very good, though, at balancing the peacock feather on my chin and at being part of the human pyramid; I always got to be the top of the pyramid because nobody wanted to step on the little old lady. I was also quite good at the Ooze – a sort of backward roll-over with a collapse at the end.

In my class was a lovely Chinese-American girl named Yvonne, who measured approximately 24-18-24 and could juggle three balls before we even started. By the second class her husband Ken had been talked into joining. Ken and Kit, another husky young man who showed up at the same time, could perform great feats of strength and skill, but because they had all those muscles getting in the way I could beat them at grabbing my ankles and doing bend-overs and such that they couldn’t even approximate – which made me feel initially quite superior.

Rola-bola performer, not the author

Rola-bola performer, not the author

All feelings of superiority quickly disappeared. We learned the egg roll, the diablo and the rola-bola, that last being a balancing act on a board set on a large pipe, which when circus people do it looks easy as pie. It is not. (Nor is juggling four balls.)

I did discover that I really shone at the human caterpillar. This begins with a base person on all fours (hands and feet, not knees.) The next person rests on top of the base person, feet crossed, hands on the floor, and additional caterpillar people are similarly arranged. The rear legs and all hands move in unison, theoretically, until somebody giggles.

Is any of this relevant to today’s world, nearly two decades later? Well, it provides food for thought and some great metaphors.

One can only hope that everyone on the political spectrum will have the stamina – not to mention agility – required for running the country at all levels and branches of government. And that our collective community can master the rola-bola without turning into one great Ooze.

 

Vin Scully Leaves Us With a Smile

Vin Scully

Vin Scully

What’s not to love about Vin Scully?

Born and raised in the Bronx, where he delivered beer and mail, pushed garment racks, and cleaned silver in the basement of the Pennsylvania Hotel in New York City. Lost his first wife – of 15 years – to an accidental medical overdose. A year or so later, married Sandra, to whom he remains married 40+ years later. At the age of 8 – this would’ve been in 1935 – he decided he wanted to be a sports broadcaster. And in 67 seasons of broadcasting Dodgers baseball games he has accumulated a long list of awards – without ever being profane, boorish, self-serving or fodder for the scandal mills.

This writer cannot claim to be any reputable sort of baseball fan. But admirable public figures are in short enough supply that one has to be grateful for Vin Scully.

Giants fans loved having Scully wind up his illustrious career in San Francisco recently, in a stadium with more “Thank You Vin!” signs than orange rally flags. Several signs in the stands read “This Once We’ll Be Blue” – in honor of Scully’s beloved Dodgers. (The Giants went on to win the game.) But it was up to the New York Times to publish the entire transcript of his narration of the top of the ninth inning – his final words to the listening baseball public, headlined Vin Scully’s Final Call: I Have Said Enough for a Lifetime. Enough to include a few nuggets in between the calls (“And the strike . . .”)

“There was another great line that a great sportswriter wrote, oh, way back in the twenties,” Scully ruminated on air. “A. J. Liebling. And it said, ‘The world isn’t going backward, if you can just stay young enough to remember what it was like when you were really young.’ How about that one?

“Ground ball foul. 0 and 2 the count to Yasiel Puig . . .”  And later –

“That was awfully nice. The umpire just stood up and said goodbye, as I am saying goodbye. Seven runs, sixteen hits for the winning Giants, 1-4-1 for the Dodgers. …I have said enough for a lifetime, and for the last time, I wish you all a very pleasant good afternoon.”

It was an elegant departure for a good man, ending a long and distinguished career. But this writer’s favorite snippet, among all the short tales and one-liners that wound through the reportage, was this:

“I’ve always thought it was attributed to Dr. Seuss, but apparently not. It’s still a good line, and it’s one certainly I’ve been holding onto for, oh, I think most of the year. … ‘Don’t be sad that it’s over. Smile because it happened.’”

What a treat to have something – someone – to smile about on the national stage today.