Modeling how to die

My remarkable friend Mary died yesterday, after showing us how to do it. Not when, mind you, because she was far too young and energetic — just how. How to question and oppose, to look at options, and eventually to accept the fact that life is fine and finite and go with grace into whatever lies ahead.

Diagnosed with pancreatic cancer barely a year ago, Mary began what would be a studied exploration of traditional and experimental interventions to see if she might wrangle some extra quality time on the planet that she had carefully nurtured throughout her life. Almost as importantly – most importantly to her host of concerned friends – she and her husband Tom signed up on CaringBridge. Immediately, her host of friends also signed on, forming a sort of cybercircle around the family.

As the journey progressed, they would post pictures and notes about their travels and travails, filled with exuberant photos, irrepressible humor and a clear-eyed view of our shared mortality. Friends and relations would sign in with their own comments. Sometimes the latter would include off-beat ideas for something else to fling in the face of the disease; more often they would be notes about how Mary and Tom were brought spiritually into other circles when they couldn’t be physically present. Sometimes they would be long and rambling; more often they would be simple affirmations of how the couple and their family were being held close in so many hearts.

It was an extraordinary gathering. With their three grown children and a few others on site, there was relatively little taking-of-casseroles over these months, though Mary was always the first to show up with a giant jug of homemade chicken soup whenever some affliction struck at my house (and many others.) The cybercircle kept us regularly informed, assured us that we were part of the journey, and served, I believe, as a constant reminder to Mary and Tom that dozens and dozens of their friends were at their virtual side along the way. It helped that both of the central characters – and they were central characters in all the best senses – were thoughtful and eloquent writers.

While preparing for a new round of treatment not long ago, Mary and Tom learned that her tumors had returned with a vengeance. So instead of setting out for one adventure they settled in for another. Hospice was called in, their children gathered even closer. Postings in cyberspace documented the passage of those days, from occasional sunset walks into the nearby hills to readings of comments from friends, as Mary grew weaker, that might win what Tom described as the ultimate honor, “the coveted arched eyebrow.”

As she died, Mary’s family fluffed the pillows and administered “magic drops and potions, all of which helped only sort of.” Afterward, Tom opened the window as a friend had prompted, ” to free her spirit, not that she needed any help from me” and hung their Revolutionary War era ‘Liberty’ flag out front.  And sent a final note into cyberspace for the ever-expanding circle of friends: “All hail, Mary, so very, very full of grace.”

Texting as anti-social networking

A faithful reader of this space, among the several faithful readers enjoyed by this space, weighed in on the texting truck driver (see Sept. 27th below) to say I ought to write about the real problem: texting while conversing. Conversational texting may not be as lethal, except in terms of mortally wounded relationships, but it does indeed seem a growing threat to humankind.

We checked with several members of the Under Twenty generation (is there a generational designation for today’s teens and sub-teens?) who assure us they would never be guilty of such a thing but we’re not convinced they’re telling the whole truth. It is the Boomers and Beyonders, though, who have come late to this perpetual connectedness and pose the greater threat. Faithful Reader confessed to having a close personal relation whom she is about to disinherit because he will not stop surreptitiously, perpetually, rudely texting beneath the table while pretending to carry on a conversation. Or sometimes not even bothering to pretend.

In a former life I had a husband — I no longer have this particular husband — who was prone to walk into a room, immediately pick up the remote and click on whatever ball game happened to be in progress. Guests found this disconcerting; wife found it maddening. The message, similar to the message of incessant texting-while -supposedly-conversing is that something afar is infinitely more important than anything at hand.

If you are a reader of this space, you are surely too cultured and polite to commit inappropriate texting. But you are invited to e-mail it to any texting truckers or friends you may have, in the interest of general civility.

Will Anti-Abortionists Sink Health Reform?

Already the right wing, Catholic officialdom and Sarah Palin have won their battle to make sure that I, and countless other millions, will likely die only after expensive, prolonged, futile, aggressive, undesirable treatment rather than peacefully at home as I choose. Now they want the generations younger to be sure that any accidental, criminal or otherwise unplanned pregnancy results in another unwanted child coming into this overpopulated world. An assault on health reform is their latest battleground. I am careful to say Catholic officialdom, because all of the lay Catholics I know, many of them Good Catholics, support both reproductive and end-of-life choice. I am careful to mention Sarah Palin just to prove I have absolutely no resentment over the fact that whereas I can’t interest publishers in my several excellent book projects, she has a planned first run of 1.5 million on her dashed-off memoir.

But back to the problem at hand. Writing in Tuesday’s New York Times, David Kirkpatrick presents the new scary problem:

As if it were not complicated enough, the debate over health care in Congress is becoming a battlefield in the fight over abortion.

Abortion opponents in both the House and the Senate are seeking to block the millions of middle- and lower-income people who might receive federal insurance subsidies to help them buy health coverage from using the money on plans that cover abortion. And the abortion opponents are getting enough support from moderate Democrats that both sides say the outcome is too close to call. Opponents of abortion cite as precedent a 30-year-old ban on the use of taxpayer money to pay for elective abortions.

Abortion-rights supporters say such a restriction would all but eliminate from the marketplace private plans that cover the procedure, pushing women who have such coverage to give it up. Nearly half of those with employer-sponsored health plans now have policies that cover abortion, according to a study by the Kaiser Family Foundation.

Never mind that Obama has promised that no federal funds will go for elective abortions, and the current policies would remain unchanged, here is a handy opportunity to make points with conservatives and throw a monkey wrench into the works of reform.

Lawmakers pushing the abortion restrictions say they feel the momentum is on their side, especially because the restlessness of other Democratic moderates is making every vote count.At least 31 House Democrats have signed various recent letters to the House speaker, Nancy Pelosi, urging her to allow a vote on a measure to restrict use of the subsidies to pay for abortion, including 25 who joined more than 100 Republicans on a letter delivered Monday.

Representative Bart Stupak of Michigan, a leading Democratic abortion opponent, said he had commitments from 40 Democrats to block the health care bill unless they have a chance to include the restrictions.

So it’s all about halting abortion — maybe — or all about halting reform — maybe — but some of us who simply, desperately, wish better care and a few decent options for our less-advantaged citizens are left to wonder what it’s really all about.

Abortion Fight Complicates Debate on Health Care – Readers’ Comments – NYTimes.com.

Hanging in the 'hood – a good option for boomers and beyonders and the economy

Say you’re happy in your ‘hood. The sights are familiar, the neighbors are okay, the comfort level is high. Now say you’re 70-something or 80-something and you need a little help now and then, bringing in the papers, getting to doctors’ appointments, changing light bulbs. Do you really want to pull up roots and move to a totally new environment, re-learn where everything is, make new friends among people who never knew your children (or your parents)? The latter is being chosen every day for or by seniors in America; the former is spurring a movement with an interesting variety of formats under the general heading of Aging in Place. I really want an umbrella acronym for this category, but I don’t really want to be an AIP.

On her New Old Age blog for the New York Times a few days ago Paula Span wrote about her dad’s life in a NORC.

In my father’s apartment building in South Jersey, the older tenants start drifting into the small lobby each day around 1 p.m., taking up positions on chairs and couches. The ostensible reason: The mail is about to arrive. The real reason: They relish a chance to schmooze.

“There’s a lot of discussion about the economy,” Dad reports. “And what the president said about the police and that fellow in Massachusetts.” Lesser issues arise, too. Whose daughter is coming to visit. What is on sale at the ShopRite supermarket.

Twenty-five years ago, a University of Wisconsin professor coined a great term for this kind of residence. It is a naturally occurring retirement community, or NORC. The place wasn’t built for seniors; its tenants are all ages, infants through nonagenarians. But a substantial number of residents have been there long enough to grow old together.

Since he still drives, my father heads out each morning to buy the papers, which get passed from one apartment to another. (God forbid you should squander 50 cents for your own copy and read the headlines before suppertime.) He ferries friends to doctors’ appointments. He benefits, too: his pal Manny comes by several times a day to check on him, and neighbors stock his fridge with soup and strudel.

NORCs exist all over; probably half of Miami Beach, Fla., was a NORC at one time. Watching this little community cope with shopping and banking and constant medical visits, I have wondered why services can’t be brought to these residents. Wouldn’t it be more efficient to have a nurse visit weekly, instead of each person making a laborious trip to a doctor’s office? For the senior van to schedule regular excursions to ShopRite? For the high school orchestra to give concerts in the community room, since so few older residents go out after dark?

A number of NORCs do offer this kind of help. Twenty-five states have NORC supportive service programs, according to the queen of NORCs, Fredda Vladeck, who runs the United Hospital Fund’s Aging in Place Initiative. New York leads the list with 54 NORC programs operating in high-rises, garden apartment complexes and neighborhoods of single-family homes; Indiana comes in second. The common mission of the programs, Ms. Vladeck said, is “transforming communities into good places to grow old.”

NORC’s and their cousins the Village aging-in-place concepts are multiplying, but they’re nothing new. They’ve been around for more than a quarter of a century (if you discount the automatic NORCs that small towns and Native American communities offered in ancient America afforded. And they’re proven effective. “Numerous studies have documented the benefits and potential of NORCs, including a Senate report (PDF), a foundation grant report and a graduate thesis,” Span writes.

So why, after 25 years’ experience, are there not more support programs for the millions of older Americans already living in NORCs, and the millions more to come?

Ms. Vladeck, accustomed to lobbying and testifying and organizing, sounded philosophical. “It’s incubating,” she said. “Sometimes, innovation takes a long time.”

If you want to keep your parents out of nursing homes, or want to stay out of a nursing home yourself, learning about how these alternatives work isn’t a bad way to start the plan.  There may not be a long time left, at the rate America’s getting older.

When the Neighborhood Is the Retirement Village – The New Old Age Blog – NYTimes.com.

Jail time for texting drivers

The life you save may be your own… or possibly mine. Right now, to be honest about it, I am more interested in mine. And mine is regularly at risk from texting drivers.

Today’s front page story by Matt Richtel in the New York Times, with accompanying photo of large driver of large vehicle, small dog in his lap and intricate computer screen to the right of his steering wheel, raises more fear in me than local jihadidsts and prospective death panels. The latter are abstract &/or untrue, the former is real. And preventable. “We are supposed to pull over,” trucker Kurt Long says blithely, “but nobody does.” Richtel also quotes American Trucking Association spokesman Clayton Boyce as saying that truckers “… are not reading the screen every second.” Why is this somehow not comforting?

I concede that time is critical to drivers of large vehicles. But at some point the public good ought to prevail. Those of us over 60 are admittedly better able to remember when it was possible to live without texting (or even cell-phoning) while driving and thus better able to think it could be possible again, at least on a limited basis. We are also able to remember when it was convenient for some people to drive around very drunk and occasionally kill people, before laws were passed to limit that activity. Driving a big rig while texting may seem more important than driving blotto after a party, but the dead are just as dead. Somebody has got to get the attention of our legislators — somebody not indebted to the very powerful trucking industry lobby — so that new laws are enacted.

Walking, whenever time and public transportation permit, is my mobility of choice. On foot, I regularly notice the drivers who don’t notice me because they are too busy texting or talking on cell phones. Pedestrians learn to do this. But if you’re driving down the highway and a large vehicle is barreling toward you or near you, propelled by a minimally-attentive driver, you don’t stand a chance. And I say, send them to jail.

Beloved members of my immediate circle of family and friends have been known to text while driving. I still say, send them to jail. I’ll come visit.

The AwareCar: Smarter than we are

OK, I do have a personal relationship with my car — her name is Iris, she plays soothing music (unless my granddaughter’s been in the front seat) while I’m navigating traffic and is a fine, fairly recent replacement for the ’77 Volvo my husband bought new. Although I’d rather walk or take the Muni almost anywhere, Iris keeps my grousing, and driving problems, to a minimum.

But now comes the AwareCar. The AwareCar proposes to figure out when I’m tired or distracted, remind me to put away the cell phone (not a problem, I do not cellphone-talk and drive), check my blood pressure, and when all else fails and I crash into something anyway, send vital information on ahead to the ER so they’ll be ready for me.

The AwareCar is the brainchild of the folks at AgeLab, an MIT project confronting the daunting fact that the 50+ population is the fastest growing segment in the world. Add to this the fact that we’re tending to live longer (unless you’re unlucky enough to be in Somalia or Iraq), with an American turning 50 every seven seconds, and you can see how AgeLab has its work cut out for it. No problem; they maintain that “an aging society is the opportunity to invent the future of healthy, active living.”

Wall Street Journal staff reporter Anne Tergesen recently alerted the world to the coming of the AgeCar, hopefully in time for some of these hordes of hard-driving Boomers. In an interview with AgeLab Director Joseph Coughlin and Associate Director Bryan Reimer (who hold those same titles with New England University Transportation Center) Tergesen quoted Dr. Coughlin’s response to her question, “As they age, what are Baby Boomers likely to want in a car?”:

Unlike their parents, this is a generation that isn’t going to say, “I’m getting older, so I’m not going to travel as much.” The boomers are working more and are far more engaged in daily activities than their parents were at a comparable age. Their expectations are far greater for products that facilitate their independence and mobility as they age. The impact on the car isn’t going to be about design, because no matter how old we get, we want our cars to look forever youthful. Instead, the boomers want the car to allow them to lead a forever-youthful lifestyle. That means it has to provide not only mobility but also safety and semi-automated features.

Thus enters the AgeCar, who is indeed likely to put Iris and her nifty sun roof in the shade. Its prototype — or perhaps more accurately its forerunner — is a Volvo XC90 currently cruising around Cambridge, MA with, Tergesen tells us, “$1.5 million of medical, computer, camera and robotic equipment. The goal? To create an AwareCar capable of sensing when a driver is distracted, faitgued or otherwise prone to accidents — and intervening to ensure a safe ride.”

To which I say, not a moment too soon. My son is about to turn 50.

Boomers & the high cost of dying

As health reform slogs along, a few critical pieces are already gone for good — or for now, at least. One of the saddest is coverage for end-of-life conversations; one of the saddest elements of our culture in general and healthcare mish-mash in particular is the tendency to treat death as a curable disease. Timothy Egan, in a recent blog for the New York Times, makes an eloquent case for injecting a little reality into all this.

In the last days of her life, Annabel Kitzhaber had a decision to make: she could be the tissue-skinned woman in the hospital with the tubes and the needles, the meds and smells and the squawk of television. Or she could go home and finish the love story with the man she’d been married to for 65 years.

Her husband was a soldier who had fought through Europe with Patton’s army. And as he aged, his son would call him on D-Day and thank him – for saving the world from the Nazis, for bequeathing his generation with a relatively easy time.

That son, John Kitzhaber, knew exactly what his mother’s decision meant. He was not only a governor, a Democrat who served two terms in Oregon as it tried to show the world that a state could give health care to most of its citizens, but a doctor himself.

At age 88, with a weak heart, and tests that showed she most likely had cancer, Annabel chose to go home, walking away from the medical-industrial complex.

“The whole focus had been centered on her illness and her aging,” said Kitzhaber. “But both she and my father let go that part of their lives that they could not control and instead began to focus on what they could control: the joys and blessings of their marriage.”

She died at home, four months after the decision, surrounded by those she loved. Her husband died eight months later.

The story of Annabel and Albert Kitzhaber is no more remarkable than a grove of ancient maple trees blushing gold in the early autumn, a moment in a life cycle. But for reasons both cynical and clinical, the American political debate on health care treats end-of-life care like a contagion — an unspeakable one at that.

Kitzhaber, having seen the absurdities of the system — Medicare would pay hundreds of thousands for continuing treatments but not $18 an hour for an in-home caregiver to help her die as she chose — was among the thousands of us who were distressed to see the debate get sidetracked by misinformation and outright lies. He knows the truth: that changing the way we treat dying people is the only way real economies and compassionate reform will happen. He is not only a politician, currently running for a third term as governor of Oregon, the state that has shown us the way, but a physician. And he’s smack in the middle of the Baby Boomer generation. Egan cites the recent Newsweek cover article by Evan Thomas, “The Case for Killing Granny,” and its on-target line about this being the elephant in the room, “Everybody sees it, but nobody wants to talk about it.

John Kitzhaber, M.D., politician, and son who watched both parents die in a dignified way, cannot stop talking about it. His parents’ generation won the war, built the interstate highway system, cured polio, eradicated smallpox and created the two greatest social programs of the 20th century — Social Security and Medicare.

Now the baton has been passed to the Baby Boomers. But the hour is late, Kitzhaber says, with no answer to a pressing generational question: “What is our legacy?”

The Way We Die Now – Timothy Egan Blog – NYTimes.com.

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