Monday Morning Bastards Redux

“I’m listening to this Zen radio station,” said Elizabeth, who was presided over a completely empty gift shop, unless a yakking parrot and a close -to-microscopic dog were enough to compete against the human dredges of three cruise ships that normally fill the shop. “It’s nice to reduce the stress, sometimes….”

So I contemplated it: I had taken a three or four-mile walk by the sea, listened to forty-five minutes of rapturous music by Heinrich Ignaz Franz von Biber (see below), did I have any right to question how seriously stressed Elizabeth might be? After all, we could both still walk, which was something, since Sunshine is still limping around—though also still working. Oh, and how long has this been going on? Well, it was two-weeks old when I wrote about it on October 16, 2014: We’re going on four or five months now, and Sunshine has received no treatment for his knee, but no matter! He now has another extended family of caring, although bureaucratic friends!

“Hey, they told me quietly at the doctor’s office to go to the procurer people,” Sunshine told me, and I knew what he meant. The Oficina de la Procuradora del Paciente is the Ombudsman for the patient—and so for the doctor’s office to be quietly urging him to turn them in is a fairly radical move.

“First they say it’s one paper and that the insurance company needs to provide it. Then the insurance company says the doctor’s office lost the paper, and for reasons of auditing they cannot provide a duplicate copy. So I’m going back and forth, and now they’re getting pissed at me because instead of going to their office, when the pain gets bad, I’m going to the emergency room. And that’s causing them real money….”

OK—that may not be actually what’s going on, but does it matter? Of course not, because whatever the legal or moral issues involved, from a financial point of view, it’s a disaster. Who knows? If the situation continues, Sunshine’s knee may worsen to the point of needing surgery—and how expensive is that? And how is Sunshine going to pay the bills if he’s in bed, recovering from knee surgery? He’s already working on his feet when he shouldn’t be.

So he’s asked me—can I help him? And I told him—stupidly—that I couldn’t, since I had to be writing this. Right—so my writing is more important than his knee? Hmmmm.

Why do I do this, I often wonder? Does a blogger make any difference? Is anyone out there? Are the shadowy figures who control the international global economy and governments quivering as they read my incendiary words? Or is it just me, a voice among millions of others—speaking whatever truth mine is to power? At any rate, here is just one sentence from the New York Times, enough to make me feel that my own Monday morning has just gotten soaked by a heavy rain of stress:

In several states, including New York, Wisconsin, Minnesota and New Hampshire, legislatures have banned the withdrawal of oral nutrition or hydration at all, no matter what a directive or a proxy says.

OK—for anyone who doesn’t know the story: My mother, at age 89, was barely able to walk, see, or do the things she had loved all her life. So, though she may or may not have had the beginning of Alzheimer’s, she stopped eating and drinking, with the full support of her doctor and her family. She died peacefully at home after eleven relatively comfortable days.

She had made her decision, and so perhaps even today she could have done what she did: Announce to her doctor that she was “done,” ready to go, happy to leave the party as it was dying down. More, that had always been her wish, which was why she had written (with my assistance, since I was an RN) a complex health care directive stating under what circumstances she wished fluids and food to be withheld, until she met her end. So is it the case that today she could make the decision to stop eating and drinking, but can no longer direct someone else to make that decision for her? What if my mother had been hit by a truck while going to the doctor to arrange to stop eating and drinking, and what if that collision had resulted in her being in a vegetative state? Would she have been out of luck? Oh, and if the blood pressure is insufficiently soaring, you might contemplate this sentence, from the same Times article:

“We should not encourage people to think their life has no meaning or value because they’re in a fragile, vulnerable and terrible situation,” said John Brehany, a former executive director of the Catholic Medical Association. He predicted that Catholic-affiliated hospitals and nursing homes wouldn’t honor such directives.

Yeah? Well, if I were in a “fragile, vulnerable and terrible situation,”—and why do I think end-stage Alzheimer’s might be a very good example of the above—I’d want to do something. And no, I wouldn’t appreciate the Catholic Church deciding on what I was going to do.

Look—it’s abuse in Guantanamo; it’s abuse in Madison, Wisconsin. Anybody who is force-feeding a person who has refused nutrition or directed that a health proxy refuse nutrition on his behalf is committing torture. And nothing—not national security, not the church’s teaching on the sanctity of human life—can justify torture.

Think it can’t get worse? Oh, but it does, because the same New York Times, a week later, reports the interesting news. I bring you a screen shot of the headline:

OK—at this point the Biber Effect had been seriously diluted, but could I not read the article? Of course not, so now I read that Dino Palermo, in his eighties and visiting every day his PhD-educated wife in the Mary Manning Walsh Nursing Home—a Catholic facility in Manhattan—had arrived one day to find a six page legal document on his wife’s bed. Why? The facility claimed that Palermo owed money, and they were asking the state to assign guardianship to collect. In short, the nursing home would take over Mrs. Palermo’s finances, and determine whom to pay.

It didn’t happen, but it also didn’t make Mr. Palermo’s life—presumably not the easiest, since now he had to take on a legal case AND take care of his wife—any happier. Here’s the New York Times again:

Mr. Palermo, 82, was devastated by the petition, brought in the name of Sister Sean William, the Carmelite nun who is the executive director of Mary Manning Walsh. “It’s like a hell,” he said last fall, speaking in the cadences of the southern Italian village where he grew up in poverty in a family of eight. “Never in my life I was sued for anything. I just want to take care of my wife.”

Is it just me, or is the world more than ordinarily deranged nowadays, when a Carmelite nun, for God’s sake, is suing an 80-year old for control of his wife’s money?

Well, The New York Times has more resources than this blog, so they could do what I cannot, but they were good enough to tell me about it. Because it seems that the statistics are hard to come by about guardianship—hmm, wonder why that should be—but the Times got Hunter University to look into the matter. And here’s what they found:

In a random, anonymized sample of 700 guardianship cases filed in Manhattan over a decade, Hunter College researchers found more than 12 percent were brought by nursing homes.

In case you hadn’t noticed, we’re under attack here—we people who want to make our own decisions, live our own lives, and do so without the government either mandating what we can do or spying on us to make sure we’re not doing something else. Is it any coincidence that the first day of our new congress, they got right down to dictating what a woman can or cannot do to her body? Here, for a change, is Huffington Post:

Emboldened by a new Senate majority, Republicans in Congress introduced five abortion restrictions in the first three days of the new legislative session that would severely limit women's access to the procedure.

It’s nothing short of breath-taking—even worse than a fifty-year history of three-pack-a-day smoking—the callousness of the Catholic Church. Though it has to be admired: Who else could so deftly rig the system? Dino’s wife has no power to stop being a vegetable, no power to direct anyone to withhold fluids. And then the same “church” that made that decision for her is now trying to get hold of her purse strings.

First they make the morality.

Then they make the money off it.

    

Death Comes to the Cafe

Don’t believe it when people tell you the subject is taboo.

Or maybe it is, and maybe that’s why people want to talk about it. At least, everybody to whom I’ve spoken about Iguanas has been fascinated.

“She was 89-years old, going blind, couldn’t move around well. But the worst was that she couldn’t write—she was a fine poet. And then she thought that she might be getting Alzheimer’s, and she hated the idea of rotting away in a nursing home.”

I was telling an oddly sociable stranger the nuts and bolts of my mother’s death—the death that I had chronicled in Life, Death and Iguanas.

“So what did she do?”

“Well, she decided to stop eating and drinking,” I said.

“I’m sorry,” he said.

“Story got a little more complicated than that,” I said, and went on tell him that my brother and I had wanted to help my mother to her end via a helium tank and a mask. She would place it over her nose and mouth, and then, with her aged, shaky hand turn on the valve. My eldest brother had balked, calling it assisted suicide, and threatening to turn us in to the DA.

Or so we had thought….

“So there we were, three feuding brothers and the problem of what to do with old Mother, as she once called herself. So the eating and drinking thing was all we could do, and initially I thought it would be a terrible death. But I was wrong; my brother was right. She had a wonderful death, having said goodbye to all her friends, and mended her fences. She died in my arms at her home in the woods of Wisconsin. And she changed everybody’s lives.”

“Wow,” he said, “that’s wonderful. Was it difficult for her to do?”

“I asked her in the middle of the fast, and she said ‘it hasn’t been too bad.’ And the best thing? I lost all my fear of death. I know now there’s a way out, and that I could do what she did, if it came to it.”

We chatted a bit more, and he left after a bit.

I tell you this because he also reacted as does everyone—by telling me about his experiences with death, in this case the death of his father.

“I never got to say goodbye to him,” he said. “So I remember the last time I saw him.”

“Happened that way with me, too…”

Well, I been floating about, hoping for some flotsam to write about, and then it hit—the death café! Here’s the skinny, drawn from the website:

At a Death Cafe people, often strangers, gather to eat cake, drink tea and discuss death. A Death Cafe is a discussion group about death rather than a grief support or counselling session. Our objective is 'to increase awareness of death with a view to helping people make the most of their (finite) lives'. 

The Death Cafe model was developed by Jon Underwood and Sue Barsky Reid, based on the ideas of Bernard Crettaz. 

Our Death Cafes are always offered:

 On a not for profit basis

In an accessible, respectful and confidential space 



With no intention of leading people to any conclusion, product or course of action 



Alongside refreshing drinks and nourishing food – and cake!

The first death café was given in London in September of 2011, and since then, there have been some 460 across Europe and the United States. Best of all, they have a tremendous website and an extensive guide as to how to organize your own death café.

Tremendous idea!

Right—Got That Taken Care Of....

It’s such a good idea, why didn’t I think about it?

I spent seven years working for Wal-Mart, ostensibly as an English teacher. A good part of that time, in fact, I was busy dreaming up great ideas that absolutely no one liked. The sustainable shopping bag that we were pushing all the customers to use was a great idea, but there’s one little problem: you have to remember to take them with you every time you go shopping. And what if you decide on the spur of the moment to drop into a store? Your bags are at home.

Enter the Newhouse KeyChainShoppingBag!

OK—the problem of keeping meats separate from vegetables and fruits? Easy—redesign the shopping cart!

So I’m totally impressed with two like-minded people, Simon and Jane Berry, who looked around them one day in Northeast Zambia, and realized: Coca-Cola was everywhere.

The Berry’s also put together that fact with another two. First, one in five children in developing countries will die of dehydration before their fifth birthday. Second, though a simple solution of salts and sugar will cure the diarrhea, most public health clinics are too far away, or may not have the formula.

Right—so we can get Coca-Cola to kids, but not life-saving kits?

Then they looked at the Coca-Cola crates and realized—hey, there’s a lot of space wasted there. What if we made a kit of a bar of soap (prevention, as well as cure), the oral salts and sugar formula, zinc pills, and put it all in a container that would wedge in between the necks of the Coca-Cola bottles? So the Berrys created an organization, ColaLife, which produced a product called Kit Yamoyo. Here’s what it looked like:

That way, you could simply piggyback on to Coca-Cola’s distribution system, and not have to invest all that energy on reinventing the wheel.

So Berry went running around—trying to get Coca-Cola’s attention, which proved at first difficult. Finally, he got an interview with the BBC, and the door cracked open. They met to discuss Berry’s great idea.

And like all great ideas, it had to be tweaked. The peak period for diarrhea is in rainy season, which is when Coke sells the least. As well, there may be times when Coca-Cola may prefer not to distribute to a remote location—it simply isn’t worth it. But the kids still need the medicine.

So, in the end, they decided not to distribute through Coca-Cola, but rather to use the company to learn about Coca-Cola’s distribution chain. Consider this photo:

For Coca-Cola to get its products into a small shop in a tiny town in a remote area, they have to work with a lot of people, from the local producer to the regional suppliers to smaller supplier to individuals who have a horse and cart. And many times, the break in the chain was the guy with a horse and cart; therefore, Coca-Cola started their Last Mile program. (Nice name, guys!)

So the Berrys worked with Coca-Cola, often tagging along with them and meeting the people who delivered the Coke. And they soon discovered—it would be better if the shopkeepers simply ordered the Kit Yamoyo as a regular item, like laundry detergent.

The ColaLife began its pilot project in September 2012, and so far, the results are encouraging. Here’s what Berry has to say, as quoted in The New York Times:

Thus far, ColaLife has received mostly positive feedback from customers regarding Kit Yamoyo. “People are convinced it cures diarrhea,” said Simon Berry. “They say it’s much stronger than the medicine you get at the health center. And there’s some evidence that we’re stopping chronic diarrhea.” (While conclusive data has not yet been published, Berry’s assessment is based on more than 20, 000 kits sold and surveys of more than 1000 households.) The team also found that shops that sell Kit Yamoyo are, on average, two-thirds closer than health centers — making it much easier for a mother to obtain O.R.S. (oral rehydrating salts) when a child is sick.

There’s a little problem, for which, of course, I have the answer. And that is, you say?

The kit costs one dollar, unaffordable to many people. Sales have slumped by 60 percent from when the kit was introduced free.

My answer?

I think the genius of the Berrys was to see that the Kit Yamoyo was a product and could be treated like one, not a medicine or a health care issue. So we have a product, a nice product with a terrific potential and an un-mined gold field in public relations. A nice product that Wal-Mart (ASDA in Britain) can sell for $2.49—a steal. Wal-Mart pockets 74 cents, pays ColaLife $1.75. ColaLife, in turn, can use that money to lower their price substantially. They then employ an unemployed blogger in Puerto Rico to write terrific press releases, which I will.

Yes?

Sorry, guys—gotta go. Gonna call some friends at Wal-Mart….

Closer Than I Wanted

There are times when, even now, even after two years, even after writing a damn BOOK about it…

…I can’t believe that she did it.

Stopped eating and drinking. Referring to you-know-whom.

I think it especially today, since I was a damn fool this morning. Took off for a walk at 10AM on possibly the hottest, most sun-blazened (sorry, computer—it’s a word now!) path in the city.

OK—I wasn’t completely stupid. I had bought a bottle of water. I made sure that I was drinking it—a surprising number of people don’t. I was wearing sun-glasses. But at a certain point, the sun and the insomnia of the night before got to me. 

I dove into the bushes and sought shade.

It was a purely physical reaction—as reflexive as jumping back when the scorpion lifts its tail. So I sat in the bushes, and wondered how I was going to get out.

A couple walked by—should I ask them for help? I do have a history of manhunts at El Morro.

I followed them, instead. And I eventually made it home. 

So it was a minor thing. But it left me panting and exhausted. And contemplating, again, the amount of will that an 89 year-old lady—my mother—must have exerted, those two years ago.

“It hasn’t been too bad,” she said, in that last week, referring to the fast. But now I wonder—how could it not have been?

(Thanks to Erica Iris for these images….)