Solitary Confinement in Covid19-Land

Prison gridI brought this on myself. Not by committing a crime, I hasten to point out, but by leaving the building, which is forbidden. Two months behind on a medical appointment, and confronted with signs of problems ahead, I broke out. And the policy of the geezer house where I live was thus: leave the building, return to 7-day isolation. Solitary confinement.

There are limitless varieties of isolation these days: young singles working 12-hour days from within tiny apartments; frail elderly trapped in inaccessible homes; wheelchair-bound and disabled – we’re all in this together, but alone. My own isolation is embarrassingly fine by comparison: three meals a day delivered to the door, a sunny balcony with lovely views, plenty of music with which to interrupt the nonstop news on TV. But total isolation, for the vast majority of us hopelessly social creatures, is tortuous.

This is a commentary on solitary confinement. There is a reason why solitary confinement is employed as an ultimate punishment, and I think I have a tiny glimmer of insight into what that’s about. More relevant to the outside world, and to these days: all those mentioned above are facing today’s viral version of solitary confinement. It’s not intentionally punitive – though it so feels punitive – but this corner of Covid19-Land is a world unto itself. What follows is a report from inside Solitary.Insomnia - sheep

Day One: On first closing the door behind me, there is a shock of desolation. I grab a glass of water out of the refrigerator, sit down at the computer and find myself in tears. I cannot imagine what it must be like to hear the cell door bang shut, but I have a sense of what isolated others felt on first hearing that Stay Home order. When talking on the phone later with a working-at-home friend she uses the term “unmoored,” which feels particularly appropriate. We highly social creatures are moored to each other just as are boats tied to docks; cut loose, we tend to drift, and the seas feel turbulent and full of danger.

Day Two: For someone who has seldom been bored, I feel myself fearing boredom. I consider calling my friend on the second floor, a noted poet and retired professor now totally blind, but there’s no way to phrase a question about boredom to her without seeming cruel. And as to my unmoored working-from-home friend, a union organizer/justice warrior – her workdays can run well past 12 hours; I think she’d welcome a little boredom. Still, it looms.

Day Three: Zoom and FaceTime have their benefits, but in some ways only heighten the yearning for real-time human interaction. Isolation leads to lethargy, which manifests as physical. With absolutely nothing wrong, I still feel unable to eat. I fix a bowl of plain rice; comfort food is comfort food. I wonder if any condemned prisoner has ever specified plain rice for a final meal? Also: why should anyone start wondering, ten minutes after a nap, when it will be bedtime again? Thankfully, the Rachel Maddow rerun – if I skip the 6 PM (PST) broadcast in favor of PBS NewsHour – sails unmoored boats, now reminded of real problems in the real world, straight into 10 PM.

Covid-19 greenieDay Four: The interesting thing about lethargy and unmoored-ness is that they are interspersed with moments of anxiety. It’s an unspecified anxiety, but then, that may be how anxieties work. As I am one whose moments of anxiety usually happen about once a decade, I can’t say. All I know is that solitary confinement comes with anxieties. In addition to having generally been anxiety-free most of my life, I have also always loved periods of solitude. The difference between chosen solitude and enforced solitude is equal to the difference between night and day. Chosen solitude = peace, beauty, tranquility. Enforced solitude = anxiety.

Day Five: I feel myself having tipped over into something that would probably just give any self-respecting psychotherapist the creeps. Or the shakes. In five days, I have morphed from sane person to blob. I have, however, been firing off a lot of pathetic emails to the Resident Care Director and the Executive Director, they who are in charge of my case. They show up, together, at my apartment. They tell me they (presumably with the approval of the Virginia corporation which owns this plus several hundred other geezer houses) have re-thought this policy. If someone goes from Point A (here) to Point B (doctor’s office) using maximum caution (latex gloves, outside shoes to change, mask, hand-washing at either end, clothes washing on return) one need not be isolated. I resist pointing out how nice it would’ve been to have reconsidered that policy five days ago, because I am way too happy. And besides, I’m in a hurry to go down to the exercise room.

I think it is not irreverent to hear Martin Luther King Jr’s voice booming in my ear, “Great god a-mighty, free at last.”

Arctic - bird on water

This essay appeared first on Medium.com, a good site for which I’ve been writing for several months. You might want to check it out.

 

 

 

Quarantined in the Geezer House

Clouds 3.21.20
West view from 7th floor

“Six die, 53 ill at nursing home,” reads the San Francisco Chronicle headline. It follows a similar, recent headline, “Coronavirus: 27 test positive at Orinda nursing home,” and seemingly endless others: “New cases in Alameda County facility,” “Another death at Gateway Manor”. . .  These are the sorts of headlines that the management of my particular senior housing community most fears, and that strike a little dread in the aging hearts of my neighbors and myself. I live in a 12-story assisted living building near downtown San Francisco. It includes some 90 apartments housing singles and a few couples with a median age of, say, 87. That is a random number, chosen only because it puts me in the younger half. I generally refer to our place as the Geezer House, but the marketing materials use slightly more refined wordage. Those materials do not lie: this is not the ritziest senior living place in town, but it would fall in the “upscale” category.

There are hundreds of senior living facilities in the San Francisco Bay Area, ranging from minimum-care to rehab to lifecare to nursing home; all of us are, to one degree or another, the scariest target populations for COVID-19’s quiver of poison arrows. At the center are the nursing homes, source of the horror stories that seem to increase daily; my community is somewhere around the second ring out from the bullseye. Though we are somewhat less vulnerable than nursing homes, if one COVID-19 virus particle managed to sneak into our building it would be Katie-bar-the-door. We’ve had practice runs, with flu or norovirus, but those moved in slowly, two or three new cases per day until the mini-epidemic retreated. With COVID-19 we’re staring down a mystery virus that, in neighboring senior facilities at least, seems to move in and take over in a blinding flash.Covid cluster

Extreme measures are underway to prevent that from happening in my building. Think San Quentin, but with better food. We began with Mayor London Breed’s shelter-in-place decree on March 16; this being San Francisco, Mayor Breed got a three-day jump on Governor Gavin Newsom’s March 19 statewide order. Life in geezer houses took a sharp turn toward confinement at that point. I encountered the new reality head-on when innocently heading out to drop some mail in the box across the street. “If you step out that door,” my friend the concierge remarked, “you must first sign this document.” He handed me a paper declaring that I “understand that by departing (the facility) I am violating Public Health Order No. C19-09, enforced by the San Francisco Police Department” and that I “may be excluded from (the facility) and not re-admitted.” I thought better of mailing my letters.

Birds in treesThere is a stillness here. Sometimes it’s eerily pleasant, the silence broken by birdsong in nearby trees. But often it is ominous. Having worked as a hospice volunteer and with other end-of-life organizations, I know the sudden stillness that is death, and others here have experienced it when losing a loved one. So here we are, in a place where most of us have come planning to stay until we die – and we’d just prefer not to be thinking about it in the middle of a pandemic. Listening to the stillness, watching the quiet streets no longer bustling with cars and people – manages to equate with death and become just a tiny bit stressful.

Life in confinement turns out to be something for which many of us were remarkably ill prepared, and there’s little comfort in knowing we share that woeful lack with millions of fellow citizens and certainly the Trump administration. Comfort is in short supply under social distance guidelines. Most of us here were children during World War II, memories of which have a certain nostalgia: there was shared sacrifice then too, but it felt noble rather than resentful. And there were Mr. Roosevelt’s fireside chats.

FDR 1936
FDR in 1936

I don’t remember the first of these, which was given a few months before I was born, but I well remember some of the last, during the war, when we’d gather around the big Philco radio to hear that deep, cultured voice. Grammatically perfect, unfailingly calm and reassuring. It’s hard not to yearn for such a voice when listening to our current president’s egotistical bombast and vulgar, vicious divisiveness. I think the memories of very different times accentuate the vague feeling among residents of senior living facilities that we are imprisoned against our will.

On the upside for my fellow inmates here and me, our fortress is pretty posh. Three good meals delivered daily in compostable containers, creature comforts like views of the San Bruno mountains to the south, or the San Francisco sunsets from our west windows. On the downside, it is possible to spend days at a time without seeing another human being, other than the masked person who shows up every day to take your temperature. For those of us still mobile there are decidedly other upsides: a small exercise room with treadmill, weights etc, and an outdoor terrace on the second floor (barred gate at the bottom of its stairs.) Walking from one end of the terrace to the other requires 180 steps. The exercise room being too small to accommodate more than one socially-distanced person, I get my best exercise walking from the 7th floor to the 3rd to see if anyone is on the treadmill. Eight or ten of us are also known to go walking at the same time, appropriately distanced, and thereafter to hang out for also distanced but at least human-to-human, conversation – though it does include frequent remarks in the “Did you see who that gurney came for?” category.Treadmill Some of us are more obsessive than others about checking the case/death numbers posted every morning at 9 by the San Francisco Department of Public Health; everyone talks less and less about when the country may “open up.” Or about politics at all, for that matter. Political discussions pretty much begin and end with “What about Trump saying . . .” This place is not a bastion of conservatism.

What’s not heard a lot? Complaints. If we chafe at confinement, we’re grateful to wake up without a fever. Most of us have friends or family in New York, Atlanta, New Orleans or Seattle and we worry about them far more than they need worry about us. All of us have friends or family who are doctors, nurses, first responders and others on the front lines. Somehow, gratitude seems to edge out the fear in our geezerly hearts.

Gratitude - sunrise

This essay also appears on Medium.com, a fine site committed to the exchange of ideas, knowledge and perspectives, on which I’ll be posting in the future. But I’ll still be holding forth right here on franjohns.net. So stick around!

On Covid-19, Flexibility and Compassion

Covid-19 globeI don’t know about your neighborhood, but Covid-19 is making life interesting here in the San Francisco Bay Area. Difficult for many, devastating for some, and interesting for the rest of us. As of this writing (I recommend the CDC site for accurate data on other areas, other updates) we have sped past the first hundred confirmed cases in the state, and who knows how many of the 10,000+ Californians in self-quarantine are also my Bay Area neighbors.

This little virus brings with it a large bunch of life lessons. Some of them are shared here, as a public service.

First off (I hate to bring politics ever into this space, but what can you do?) if you ever believed anything said by our commander in chief, this is a good time to mend your ways. Covid-19 is not a Democrat hoax, it is not going to disappear in a short time, you really shouldn’t go to work if you’re sick, a vaccine is at best many months away, and good luck finding those test kits that anybody who wants can get. This is only a life lesson in the sense that, in today’s crazy information-overload reality, Truth is hard to find. So, Life Lesson #1: Seek Truth. Read several newspapers if you still read news. Otherwise, visit the CDC site and scroll through more than one mainstream news source, please; do not believe Facebook will give you Truth. Watch PBS and occasionally Fox News; if one disseminates truth, the other reinforces your neighbor’s version of truth – and we’re all in this together.    Covid-19 greenie

Other life lessons are happier, and equally easy to learn. For instance, at my church we very quickly learned to replace hugs and handshakes with fist bumps and peace signs. Not as much fun, but whatever. The ushers are equipped with bulletins and hand-sanitizer. Choir members last Sunday spaced themselves three feet apart, which looked rather elegant – but they sounded the same, i.e. gorgeous. We also learned translations of the word Covid into Hebrew and Yiddish, which I have already forgotten, and which doesn’t matter anyway since the name was chosen by the World Health Organization thusly: Co and Vi come from coronavirus, D stands for disease and 19 (as in 2019) = the year the first cases were seen. To connect all this: I belong to a Presbyterian church that is heavy into hugs, scientific truth and interfaith understanding.

As to flexibility, this viral pandemic is teaching us, wisely, not to be so rigid about stuff. I was dismayed when the San Francisco Symphony cancelled a concert on my regular series that I really wanted to hear; and the political roundtable at the Commonwealth Club, a favorite regular program at which I always volunteer, similarly disappeared. But symphony season will resume in good time, and do we really need to talk politics late into the evening when it invariably produces nightmares? Sleep is better. That long-planned trip to Tucson in a couple of weeks? Probably not the wisest thing for my octogenarian cardiovascular system. Purpose of trip, however, was to join my daughter for a visit with a childhood friend of hers (whose mother, lost to cancer decades ago, was a good friend of mine) – and they can definitely have a ball without me.

So take deep breaths and wash your hands. We and the planet will survive in good time.

Moon & clouds
 

A Few Random Cures for Insomnia

Insomnia - sheepI have taken to waking up at three or four AM in a state of (pick one) sadness, anxiety, unidentifiable angst or worry over the future of the planet.  It’s not something I recommend, and hopefully it will not become a permanent habit. But I do note that I wrote about it on May 22, 2016. Had totally forgotten that profound essay, which may say something about its profunditiy. This one, however, is about solutions! The earlier one did in fact have a bunch of potential solutions, because it was inspired, at least in part, by a wonderful New Yorker piece that the inimitable Patricia Marx wrote about the limitless assortments of insomnia aids currently on the market. What follows are the things that get me back to sleep – – – eventually.

Watching the night skies. This has to be #1. Works best for me, thanks to the happy circumstance of having a large window that looks westward over San Francisco 7 floors below. I often get reflections of the city lights onto the clouds (or fog) above; occasionally I get a setting moon.Night sky 11.19 Staring heavenward does not require turning on the lights or getting out of bed – unless the sight is so remarkable I feel the need to capture it with my iPhone camera. The conviction that something more competent than the planet’s current inhabitants is in charge enables me to talk myself down from whatever woe has me in its grip.

If I do the turn-on-the-light-&-make-a cup-of-tea thing, there are the wonders of modern technology for #2. My smart phone spends the night in another room (something I find necessary to my sanity) so accessing it requires a measure of wakefulness (see above.) But then there it is with its handy little Calm app. Or better still, I will pick it up to find my friend Liz has just sent a video of tall trees in a Georgia forest sending their fall leaves off into a symphony of gentleness. Trees by LizIf that doesn’t lull me back to sleep, there’s an entirely other solution now that the accursed device has injected itself into my insomnia. Ninety percent of the non-existential things about which I am stewing have simple answers that Safari can provide: Yes, that book I need is available at my Western Addition Library branch! Here are the directions to a repair shop! An email just arrived from the editor I thought didn’t like my story! (What’s he doing up at 4 AM? Not my problem.) Spirits calmed or problems solved, I can then manage to go back to sleep.

And now that the light is on, the book is there. I am pretty careful not to keep Bram Stoker or Franz Kafka on the bedside table, or any of those excellent books about apartheid or the Holocaust, however fine they might be for daytime reading. But I’ll have A.S. Byatt, or Laurie Colwin, or Edith Wharton – any of those lovely friends who can pull you so deeply into a story that they will displace the cause of the insomnia. Of course, you might not want to put the book down, but that’s another problem altogether.Universe

Insomnia is not an easy foe. It may indeed require calling in the troops Marx uncovered – eye masks, stretchy hats, blue lights, Valium, whatever. But before you go to all that trouble and expense I hereby recommend the good book, the internet solution or the celestial assurance that the universe is in good hands – if you’ll just go back to sleep and quit worrying about it.

 

 

 

On Parenting Aging Parents

Caregiving1         “I thought I would have a life,” Sharon said to me. “My youngest is now in college, my husband is nearing retirement and we thought we would have a life. Instead, I am juggling time with my father – who’s in an independent living facility but is certainly not independent – and my mother who lives alone in the house she’s had for 40 years. My mother is, how do I put this?, needy. Suddenly she needs help with all sorts of things and I have been designated The Helper.”

It was one of the saddest mini-conversations I’ve had in a very long time. I had known  Sharon for less than an hour. She is 54. She was visiting a friend of mine, and this report came when 6 of us were having lunch at the retirement condo where I live. Actually, other than one sixty-something I’ll call Joan, I was the only one in the group older than 54. At 86 I happily accumulate younger friends as often as possible, since the rest of us keep dying off. My lunch guests were talking about what a good spot I am in, especially since my children all live in faraway states.Caregiving4 That was when one 40-something said, “I wish my parents would consider moving to a place like this; they don’t want to leave their big, three-story house, and I’m afraid I’m going to be trying to take care of them there by the time I hit my fifties. And that’s when Sharon chimed in with the comment above: “Yeah, I thought I would have a life . . .” And Joan said, with a wry smile, “Welcome to the club.”

I have another friend I’ll call Robert, a business associate with whom I’m not all that close. But because he knew I was writing this piece he told me a similar story. His parents are somewhat younger than this octogenarian writer, but not that much. They had what my friend describes as “a rather loveless marriage” for more than 20 years, but when it ended – with his father leaving to be with an old sweetheart whom “he probably should’ve married in the first place” – that was the last time they spoke. His mother later found a new partner, and both parents, though neither remarried, were contentedly partnered for many years. Not long ago, though, his mother’s partner died, and at about the same time his father’s partner sold their house (which she owned) and moved to another state to be near her daughter. Robert’s father “now rents a room in a home not his own — surviving on Social Security and a small amount of work— surprised he’s still here because he thought he would be dead 10 or more years ago and did not plan to see his 80s.” So much for life plans.Caregiving5 “Both are alone and needy now, in different, complementary ways,” Robert says. “If they could somehow bring themselves to talk to one another, perhaps they could begin to chisel away at the layers of resentment, hostility and blame that destroyed their relationship.” Apparently this won’t begin to happen any time soon, however, as Robert tells me they maintain no interest in communicating. His mother lives alone in a home she owns and craves companionship; his father has little money left and needs a roof over his head, a more secure one than the stranger’s home in which he’s been unhappily existing for more than two years now. Robert laments they are in a unique position to help each other, if they were open to it. As their only child, Robert sees this as the sensible alternative to driving him crazy. But he also admits they might not reflect upon or even begin to realize just how their current lives affect him.

Two messages stand out: Needy parents, and children going crazy as designated helpers.

These two examples may not be universal, but they are surely not uncommon. The upside is that many such parents have children at least able to help. (Many parents also have children who are delighted to be caregivers, resulting in a blessing for all. I’m just not sure this is often the case.) But consider the aging elderly who have no (available) children and even fewer resources; be grateful if you’re aged and have one or the other. The downside, at least across the U.S., is a growing inter-generational tragedy. My unscientific micro-sampling, conducted over a period of several weeks, turned up a half-dozen youngish Boomers caring (with varying degrees of joy & satisfaction) for septuagenarian or octogenarian parents, and a handful of Gen-X’ers caring for Boomer parents.Caregiving3 Two of the latter have serious financial concerns put this way by one: “So I’m spending my retirement savings on my mom, and – considering my choice not to have children myself – wondering what’s going to happen to me.”

The above, should you want to consider it as such, is an open letter to parents of my generation. Here’s the thing: 100% of us are going to die, which will definitely not be the worst thing that ever happens: just look at all the great people who have already done it. Most of us will need some degree of care by someone, in the months or years leading up to our deaths. Some of us have more choices about our final years than others, but there may be ways to get through our geezerhood without upending our children’s lives – if we talk with them about it.

Caregiving6       It might be a conversation worth having.

 

A Reflection – or Two – on Widowhood

solitary_by_chibbitsuki
Solitary by Chibbitsuki

For the record: widowhood is the pits.

I can say this with some authority, having inhabited this strange new realm for roughly two months now. And though I concede probably 90% of the widows of the world – more, if you count Syria, Afghanistan, Mozambique, etc – are way worse off than I, still I can feel pretty pitiful about it with very little effort at all. Because:

No matter how independent you might have been for how long – and in six wearying years as a caregiver I have surely gotten used to flying solo – there is a weird stigma thing one now feels, as if an indelible W had been surreptitiously stamped onto one’s forehead. Accented by a gray veil that is technically invisible, but all-enveloping. The status is distinctly different from being single, or divorced, on both of which I can also speak with authority. Singlehood and divorce imply a chosen freedom, an aura of devil-may-care, if you will. Unless one all but takes out an ad proclaiming I don’t want this! I need a partner! (been there done that too, I’m afraid) the solo by choice can have a pretty good time doing exactly as he or she pleases.

Widowhood, on the other hand, is the Great Unchosen. (Well, unless you do in an unloved spouse with an axe or something, and choose to spend your widowhood in the penitentiary.)

It is like being suddenly halved. The other side of the bed is too vast and cold; the placemat on the left too perpetually vacant. The ability to spread out the New York Times without knocking over the adjacent morning coffee does not compensate for the darkness spoken by that empty space. Half of you reads the paper and sips coffee; the other half of you waits in vain for commentary on today’s breaking news or for the request for another piece of toast. The toaster isn’t even half functional any more; it only grudgingly accepts the new reality. Doors

Widowhood is forever opening doors onto sadness. Occasional doors open to rooms full of people who feel sorry for you. They’re only being kind, but still. Many doors open into areas of couplehood where you no longer belong. And who can predict how many zillion times you open the door on coming home, calling out greeting and overflowing with tales that can no longer be told — because who can tell tales into a void?

The world shifts and resettles. Life goes on. Widowhood – even for the young, who lose husbands to stupid wars or senseless tragedies – is likely forever, since we females have an unnerving habit of outliving the males of the species. One adjusts, explores new avenues of finding joy.

But it’s still the pits.

Weird Times and Guardian Angels

“I don’t know where I am,” I said. “I don’t recognize this place.”

“Well, you did get here. Where’s your car? Did you drive?”

“I don’t know how I got here.” And since I also didn’t know where I came from or where I lived, it was not going to be easy to get home.050910-F-MS415-009

My short-term memory had totally, inexplicably vanished

I had just told the story of my long-ago (1956, to be precise) back-alley abortion at a fundraising event for nonprofit TEACH (Teaching Early Abortion for Comprehensive Healthcare) in a San Francisco theater. One five-minute speaker followed me, and the program ended. When we got up to leave – I was on the second row next to my young friend Alexa and her visiting aunt and uncle – I didn’t know how to get to the lobby. Since I had met with other speakers onstage before the event and had led my guests to our seats, something was obviously weird. We finally did get to the lobby, where we had met and visited before the event, and the above exchange took place. At that point something weird turned into something frighteningly wrong.

Alexa left her aunt and uncle to find their own way back to their hotel, summoned a cab and gave the driver my address. Later I would have a dim fragment of memory about being in the cab, and another fleeting memory of entering our building, going up to our condo and then seeing my husband.

“Something’s wrong,” I said. “I need to go to the hospital.” He and Alexa had long since come to that conclusion. She had been texting with one of my children on the east coast and on the phone with my husband since the exchange in the theater lobby. Finding my car safely in its garage space, she had already called a cab to get to the emergency room.  But after that moment of seeing my husband, the next four or five hours are lost to me forever.

Its official name is Transient Global Amnesia. If you have it, it’s a good idea to be among friends.

Since I come from a long line of stroke victims, that had been the immediate fear. But it only took a few tests in the Kaiser ER to rule out stroke, a few more to rule out other serious afflictions and arrive at the diagnosis of TGA. Sometime around 2 AM my conscious memory swam back to the surface of reality, which was Alexa sitting on the side of my bed. Then, with a little help from some drug they gave me, I fell asleep.Guardian angel

Fewer than one half of one percent of people in the U.S. experience episodes of TGA every year. It is most common in people between ages 56 and 75, with the average age being approximately 62 – unless I’ve now upped that by a decade or so. For the victim, TGA is really no big deal. You don’t remember anything anyway; but there’s no pain, no suffering, no after-effect and no permanent damage. All I do remember is the comforting vision of my lovely friend, who is known as my West Coast Daughter (now additionally Guardian Angel), sitting on the side of my bed. I was visited by numerous concerned physicians and nurses, several of whom said they’d never heard of TGA.

But now we all have! Before sending me home the next day the very cautious Kaiser people did an MRI of my head, and lo, my brain was still there. Actually, it was functioning on remote even while I was malfunctioning. When posing the traditional questions about what year it was (Nope, didn’t know) etc the ER doctors asked if I could say who is the president of the U.S.

“Noooo,” I said, “but I know I don’t like him.”

 

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.