The envelope is lying right here on my left, now looking altogether spooky. It is even stamped and addressed; that’s how close I was to getting a note into the mail.
Then the phone rang. The note was to begin, “So, how are things going? How’s Gerry? How are you holding up?” The envelope is addressed to Gerry’s wife Kathy.
Several months ago our old, dear friend Gerry, age 75, was looking after the horses on their beautiful Southern California ranch when his heart failed. They got him to the hospital, but then came the bad news: his heart could not be revived or repaired. His only option would be a transplant. The good news? Because he was strong and otherwise healthy, he was a good candidate for a new heart. The further bad news? In order to be on the transplant list he would need to remain in the hospital, in intensive care, ready.
Kathy and Gerry are what I would call salt-of-the-earth Good People. They are deeply religious, clean-living and hard-working, and committed to living lives of service and gratitude. Within a few days of Gerry’s diagnosis they found themselves in the unenviable position of waiting for someone, somewhere, to die. Some generous someone who had signed agreements for his organs to be donated. (It would presumably be a ‘he,’ as Gerry is a fairly big guy, and would need a heart coming from someone roughly of equal size and weight.) After talking with Kathy early on in this saga I found myself also having queasy thoughts: How hard should I pray for some good person – do bad people sign organ donor forms? – to die in order for Gerry to live? It is an across-the-board existential dilemma.
The longer he remained in intensive care, the further Gerry’s condition deteriorated. This presented a scary picture but pushed him higher on the recipient list. In other words, the worse he got, the more urgent his need, the higher his spot on the transplant list. Another existentially fraught situation.
On August 15 (or perhaps the hours before August 15 dawned,) a 34-year-old man died in another state. A man who was on life support in a hospital because at some earlier point he had taken the generous step of signing organ donor forms. One of Gerry’s doctors flew to that hospital, examined the heart, confirmed it to be a very good match for Gerry, and boarded another jet plane back to Southern California. Gerry was already opened up, his original heart beating – with a lot of help from outside sources – outside his body.
He is already back home. Part of the somehow endearing characteristics of these two old friends of ours is that they do not have email or participate in any social media. So it’s taken Kathy time to get around to calling friends with this lovely update.
Somewhere in the southwest a grieving family is saying goodbye to a 34-year-old they had not expected to lose. “Gerry cries every time he thinks of him,” Kathy says. “There are just no words.”
Other than these: “August 15th is his new birthday.”
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.
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.
“I promise,” I said, “that I will not let them admit you; we’ll come back home today.”
My husband, who had lived with congestive heart failure for decades, was so filled with fluids that he was like a walking (sitting; he was wheelchair-bound) waterbed. This was a Monday. I am not medically competent, but I’ve been a hospice, AIDS/HIV and Compassion & Choices volunteer, and I knew enough to know he was sliding toward end-stage CHF.
In the ER I mentioned to assorted intake people that we would not agree to hospitalization. The physician who eventually arrived looked my husband in the eye and outlined the ways she could help him feel better and perhaps live longer (he was 89.) “But it will involve being in the hospital for a few days,” she said; “and I think that is not what you want.”
“That is not what I want,” said my husband, looking her in the eye.
“Fine,” said this saintly, beautiful doctor (name on request; I’ve already sent her a thank-you letter copying everyone I can think of.) “We will do what we can, and send you home today.”
So we went home. It was a long day, and my husband was too weary even to finish his martini (an indication to me that he really didn’t feel well. The nightly martini was important.) He said he didn’t want even a bowl of soup. Bed sounded good, he said, but he was beyond cooperation. I then had to summon the Wellness people in our retirement condo building to help.
“Old person. Unresponsive. Call 911” said the Wellness people, as they helped me get him into bed.
“Do not call 911,” I said.
“We understand,” they said. “We love him too. But we have to call 911.”
The paramedics arrived. Paramedics are invariably the most gorgeous hunks. Two of the six who arrived had been to our apartment months before when my husband landed on the floor – he was 6’4” (at his peak) so it took paramedics to get him from floor to bed. “I remember talking to him about all this art,” one said. “And he was a Marine,” said the other. What’s not to love about paramedics? But. “We must take him to the ER,” they said.
“You may not take him out of this apartment,” said I.
It became an interesting battle.
“We understand,” they said. “We agree with you, ma’am. But we have protocols.”
Finally I said to the guy in charge: “You call your head person at San Francisco General and tell him you have this little old lady standing here with her husband’s DNR, POLST form and DPOA and she says we may not remove him from their apartment.” Actually, I was prepared to go over that person’s head. I have friends at SF General. But to his eternal credit, the in-charge physician (may he survive and prosper) said, “Fine. Get him in bed and leave him there.”
One of the paramedics saluted my husband as he left the bedroom.
My husband died three days later, in his own home where he wanted to be, with me scrinched into the hospital bed hugging him into the hereafter.
Had I not argued against the retirement home 911 protocols, and fought against the EMR protocols, he would have died in a cold, bright-lit hospital room with strangers poking and probing him and we the taxpayers spending thousands and thousands of dollars to make his last several days miserable.
What’s wrong with this picture? Only the caption.
The caption 99% of us would want is the one below the snapshot of my husband’s death, at home, with someone we love best hugging us into the hereafter.
Fully 60 percent of the U.S. population get the hospital caption — the one that goes with that blurry photo above — instead . (Another 20 percent get the nursing home caption.) One should not have to have a ferocious on-site advocate to let one die at home in one’s own bed. In addition to the DNR, the POLST and the DPOA there should be a JLMA form: Just Leave Me Alone, for those of us who concede that we’re actually going to die some day and work to keep our end-times as inexpensive and comfortable as possible.
Until such time, I am grateful for the forms we do have, and for the two compassionate physicians who helped my good husband die the death he preferred. May he rest in well-earned peace.
This birthright-citizenship-ending business is getting personal. Surely Mr. Trump has nothing against me exactly – although one can never be sure. I don’t follow his tweets (until they are reported on real news,) but he may have access to my emails. Still, how does he feel about us birthright outliers? And where will we wind up? Stateless?
Here’s the whole story. When I arrived on the planet my mother (along with my father and three older sisters) happened to be in Porto Alegre, Brazil. They’d actually been there for a little more than a decade, my dad helping start a school and my mother teaching music to preschoolers. A dozen or so of the latter were her bridesmaids in tiny matching dresses she made and oh, how I wish I could put my hands on that photo. But back to the birthright.
Since my mother (a legal, if temporary, immigrant) happened to be in Porto Alegre, I was born in the German hospital there. Brazil, being a friendly sort of country, immediately granted me citizenship.
Not to be outdone, the USA simultaneously granted me citizenship, under the “American Parents Abroad” act. And that, for a number of years, was that. (But is the APA still OK? Should we trust those babies born in shit-hole countries not to be inherently terrorist?) My family came back to the States when I was too young to have started learning Portugese – more’s the pity; it is a beautiful language. I grew up hardly even noticing my dual citizenship.
Then I reached voting age. When I registered to vote there appeared a mildly ominous-seeming document stating I must renounce my Brazilian citizenship (no dual citizenship allowed in the scary 1950s.) So with hardly a passing thought to my birthright country I renounced it. This might make me okay with President Trump, I guess, though in hindsight it makes me a little sad. And conflicted. Dual citizenship is now possible, and I might want to relocate if things keep going south (or alt-right) in my chosen country.
Fast forward about a half-century. My irreplaceable Final Husband, learning I had never revisited the country of my birth, suggested we should go back. Five minutes later I was on the phone (this was the 1990s, but pre-email) making arrangements and reservations. My favorite exchange was with a hotel reservations clerk in Rio who said, “Oh, you cannot stay one night in Rio. You must stay two, three nights in Rio.” (Which we did.) The primary plan, though, was to visit Porto Alegre, and the Instituto Porto Alegre where my father had famously served.
Initial plans made, we set out for the Brazilian Consulate to obtain visas. “Oh, you cannot travel on a visa,” the nice lady said to me – after granting my husband a visa. “You were born in Brazil; you will need a Brazilian passport.” Which was a little startling, but as it turns out the passport is cheaper than the visa. Small victories. In time, my new passport arrived – in my birthright name, which is not exactly the name on my US passport or airline tickets, but who’s worrying about details?
Me, actually. I figured I might get into Brazil and never get out. But all was well. We visited Iguacu Falls, surely one of the most beautiful spots on the planet (after spending the requisite few nights in Rio and taking photos ostensibly of me but really of the gorgeous girl(s) from Ipanema in the background.) Mostly, I went around smiling at everyone, displaying my passport to sales clerks and waiters and saying muito obrigada – essentially the full extent of my Portugese. Nobody didn’t smile back.
Safely home, things rested for another decade or two. But now our president is saying – constitution be damned – that he might just delete that birthright citizenship. Does he mean just all those murderers and rapists storming the border, or since every immigrant except Melania is a potential terrorist, is he going for retroactive non-birthers? I.e., yours truly?
A quick call to the Brazilian consulate yesterday informed me I am welcome to reinstate my Brazilian citizenship, even if my passport has expired. But now with Mr. Bolsonaro down there wanting to chop down the rain forest – not to mention his political opponents – my alt-birthright country isn’t looking so great either. Still, hedging my bets, I’m hanging onto all these documents. And praying a lot for the whole planet.
My friends Susan and Andy Nelson threw over successful careers (his in law, hers in corporate America) some time ago to join the foreign service. They spent two years in Managua, Nicaragua, two years in Hanoi, and are now representing our country — the very best of our country — in Delhi, India. Susan posted the following on her Facebook page recently. It’s been tugging at my heart every day since; I hope it will tug at yours:
Last Friday we received the devastating news that the High Courts of India decided to reunite these two beautiful boys with their physically abusive parents, for a one month trial. Our family sponsors Chandan and we do monthly play dates at the children’s home where they live. The father is out on parole after serving a shorter than expected sentence for murder. And the mom is violent, threatening, and unrelenting in her struggle for power. The boys were forced by their parents to beg as street dancers, like trained monkeys, which is what led to their rescue and move to the children’s home two years ago. The parents will be back in court on Nov 14, fighting for permanent custody. If they win, these kids will slip through our fingers – likely forever. Between now and Nov 14, Andy and I are trying to do anything we can to influence the Court’s decision that day. We’ve reached out to lawyers, reporters, clergy, friends, child welfare advocates, even a Nobel Peace Prize winner – and now I’m reaching out to you. I believe in the power of prayer. And even if you don’t, hopefully we all believe in the power of LOVE. Please shine your love and light into the world for Chandan and Nandan – every day, several times a day, when you lay your head down on your pillow each night, when you wake up and have your morning coffee….PLEASE!
Please keep these boys in your heart for the next 3 weeks – and send love to them, to their parents, to the courts, to the children’s home where they are loved and where they were safe, to the child welfare watchdogs….to everyone involved! Our love can influence this decision on Nov 14. I believe that. Andy and I are working every angle, chasing every lead or creative idea we can think of, here in Delhi. If you could do the loving part – HARD – we would be forever grateful! Please don’t stop!
Seems like prayer, if you’re into praying, and hard loving wherever you stand on prayer, are easy things to do.
“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.
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.
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.
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.
Three things you and I have in common with the rest of the world: We are born, we live, we die.
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 Connexions – Interdisciplinary 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.
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.
“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?
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.
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.