What Watching My Granddad Spiral into Dementia Has Taught Me About Life and Love

By Lauren O’Neill


The first time my granddad didn’t recognize me wasn’t as bad as I expected it to be. He greeted me with warmth like always, except he didn’t call me “Lauren” or “love” but “son.” “Hello, son,” he said to me in the stubborn Dublin accent that years of living in England could not uproot. “How are you?” He was looking right at me, but he didn’t know who I was, and that was that.

When my granddad was initially diagnosed with dementia, my first predictably selfish response was to get really scared about him forgetting who I was. But when it eventually happened, it kind of just happened, the way that dementia itself just happens—quietly, with very little fanfare. It slips its thin, invisible fingers around sufferers’ throats, wringing out the personhood so slowly that in the beginning, you don’t even notice it. I didn’t cry like I thought I would when my granddad didn’t recognize me, because over time I had just got used to the idea that one day, he wouldn’t. When someone close to you gets dementia, you are forced to resign yourself to the plain fact of degeneration; it is a terrible thing to “just get used to,” but currently no cure exists, so getting used to it is all you can do if you’d rather not get sucked into an existential thought vortex concerning the cruelty, fragility, and ultimate futility of human life.

I don’t mean to be cynical. I know that if my granddad could read this, he would disagree with that last bit: For him, while he was well, life had a lot of meaning. He was a pretty committed Catholic, and a guy who, in general, enjoyed being a human person living in the world. For most of his life he ran pubs in Birmingham, and when he gave that up, he and my nan, whom he adored (and who now makes the two-train trip across the city to see him in his nursing home almost daily, with a dedication that only a woman who has been in love for more than 50 years could muster), went on loads of those cruises for people who have retired where there are rock-climbing walls on the ship. He was funny, and really good at mental arithmetic, and he liked singing IRA songs and drinking pints of Guinness. He had, especially in later life, a properly good time.Dementia

So when he started becoming forgetful, and when his wit got a bit duller than it had been before, nobody really thought anything of it, because he just wasn’t the type of person who would ever get a condition like dementia. He was too robust, too aggressively healthy in his old age, too different from the type of frail, elderly person we tend to commonly associate with dementia—he was just getting old. And even after a severe dissociative episode during a holiday in Spain, when he became convinced that he was sharing a bus with terrorists, and told hotel receptionists that my nan was trying to kill him, his GP diagnosed a nervous breakdown long before considering the possibility that the problem could be rooted in a degenerative disease. He simply was not that kind of man. Even the doctor thought so.

But of course, he was that kind of man, because any man can be that kind of man. Dementia can happen to literally anyone, regardless of physical health, though some people are more genetically predisposed to it than others. It is caused by some very complicated and very fucking scary and bad-sounding shit happening to your brain, and has some pretty horrific symptoms. In general, you gradually get worse at doing anything at all for yourself, turning previously simple daily tasks like going to the toilet and getting dressed into missions requiring approximately the same amount of organization and personnel as a moon landing. You lose your memory, to the extent that you start to forget some words. Eventually, you even forget how to move, and become bedbound. After that, your immune system packs in, and once that happens it’s kind of game over. Dementia, one; you, very much nil.

I had never considered having to deal with any of these symptoms, because the grandparents whose home I grew up in seemed so youthful for so long. Degenerative diseases were, to my mind, obviously terrible but ultimately distant, like wars on the news or something. Until my granddad got sick, the closest I came to dementia and its related conditions was via a great-uncle I didn’t really know, who died unusually young of Alzheimer’s. But then, after the incident in Spain, dementia’s spindly hands began to take hold of my granddad really quickly. I was 18, and had come home from my first term at university to a house where people had to take it in turns to sleep because my granddad had started pacing around every single night until dawn, the confusion in his head now torturous.

Dementia 75It is difficult to get used to the idea of someone who raised you needing to be looked after so thoroughly. It is even more difficult to become one of the people doing the looking after. My granddad was integral to my upbringing—I have lived in his house at numerous intervals during my life (I’m back here now, writing this), and he always nurtured me. It is weird, small things that I remember best, like how he made me watch Countdown with him so that I’d get better at spelling, and how carried me on his shoulders when he fetched me from school. Dabbing the side of someone’s mouth with a piece of kitchen roll after they drink a cup of tea is hard when you know that they used to clean up your baby sick, because you used to rely on them, and now they rely on you. It’s life, and it happens, but isn’t it fucking sad?

Dementia now affects an estimated 850,000 people in the UK, with the number expected to reach a million by 2025, which means that a lot of people reading this probably have firsthand experience of how fucking sad it is. But still, we don’t really talk about it, and I think that’s because it’s a disease that forces us to confront our most basic, human fears—like losing your dignity, or becoming a burden to the people you love, or even not knowing who or what you are. Because fundamentally, ego is what makes us human, and dementia takes that very human self-interest away, drip by drip. The grim vastness of that is terrifying; it’s no surprise that we don’t really want to discuss a disease that has the potential to chew us as if we’re tough pieces of meat, for a very, very, very long time, before eventually swallowing us forever.

Before necessarily succumbing to it, those who are unlucky enough to end their days with dementia usually go to live in nursing homes, because they need the kind of specialist, around-the-clock care that most families just can’t provide. Nursing homes are not an-body’s favorite places, and my granddad’s, despite its cheery purple decor, is no exception. Sadness looms on its corridors like humidity—never suffocating, but always palpable. It clings to the curtains, the walls, the sticky laminate flooring, the people. The friendly staff, mostly women of varying ages, do their best on a low wage, kindly chatting to the patients whose pasts, behaviors, likes and dislikes they have gotten to know well as they flit about the ward wearing disposable plastic aprons, from which fluids of various kinds can be wiped away. The armchairs in the lounge are tall and straight-backed to discourage slouching; the bedrooms are large and practical and beige.dementia

The walls of my granddad’s bedroom are covered in photos of family members whom he mostly doesn’t recognize. He knows my nan mainly by the sound of her voice, and even then his acknowledgement of her can wane from visit to visit. But there are still good days, when little rays of joyful humanity emit from him. When he gets a lot of stimulation from the staff or from visitors, there is still so much of my granddad that the illness has not been able to sap away yet. He comes to life when he hears music and is still a boisterous and enthusiastic singer; he dances and plays football, and receives visits from the local priest, who says prayers with him. All of this is, obviously, extremely cool to see. Equally, though, there are bad days. He can be angry, and anxious, and sometimes both. His life as a publican haunts him on those days, and his cloudy mind becomes fixated on money and work. If he doesn’t get the answers he wants, he can become moody and aggressive for entire days. His mood can change in the blink of an eye, and when I go to visit him, I never know which side of him I’m going to meet that day.

But I guess I’m not the only one. These days, there are an awful lot of people affected by dementia, both directly and indirectly, all over the world. I’m sure most of the people who feel its influence on their lives never expected to, just like me. Because you never expect dementia—before you experience it for yourself it is just a kind of faraway thing that is sad and big and scary if you think about it for too long, and something that occasionally happens on TV soaps when old people need to be written out. Nobody expects dementia, because we think we know our loved ones too well; we think their traits are too indelible, their personalities too strong, to ever be wiped out by mere disease. When it does arrive, it is unannounced; it creeps in silently and straps itself in for the long haul.

Ironically, though, however unexpected it may be when dementia comes knocking, you immediately know exactly what to expect. The distance at which you held the disease in your mind narrows very quickly, and what begins as terror and grave uncertainty becomes resignation and pragmatism. You learn to deal with the illness because you love the person it’s stealing away, and you eventually accept the fact that it’s never going to get better. Somehow, you cope. You just get used to it.
Complete Article HERE!

In rapidly aging Japan, dying is big business

In rapidly aging Japan, dying is big business

At Tokyo’s Life Ending Industry Expo, companies touted products for the $41 billion industry in end-of-life planning and memorials.

By Anna Fifield

Traditional statuary and memorials were among the products on offer. In Japan, death is an opportunity for growth. Business growth, that is.In a country with many more deaths than births each year, Japanese companies are looking to maximize the amount of money people spend on shuffling off their mortal coil, from preparing “ending notes” and choosing coffins to arranging to have their ashes blasted into space or turned into diamonds.

“I want to promote our products because we have almost 1.2 million people dying each year but we sell only 60,000 of these mats,” said Koichi Fujita, a representative of a company selling tatami liners and pillows for coffins. He was using slightly outdated death figures: Japan said goodbye to 1.3 million citizens last year but hello to only 1 million new babies.

Fujita’s was one of the scores of companies touting their wares at Endex, an expo devoted to planning for the end of one’s life, held at a huge exhibition center in Tokyo.

“Japanese people spend their lives on tatami mats,” Fujita said, referring to the straw flooring in traditional Japanese rooms. “And there’s a saying that they want to die on a tatami mat, meaning die at home. But so many people die in the hospital, so at least they can have a tatami mat in their coffin when they are sent off.”


Japan has the fastest-aging population in the world. Slightly more than one-quarter of the population is 65 or older, and the Health Ministry forecasts that the proportion will hit 40 percent by 2060.

Many aspects of Japanese life are now geared toward senior citizens. Go into any drugstore and you will find shelves of diapers and sippy cups — for the elderly. Banks and post offices have reading glasses on the counters for customers with failing eyesight, while big pedestrian crossings have buttons to push for those who need extra time to get across the road.

Panasonic has a line of easier-to-use household appliances — including washing machines, microwaves and rice cookers — targeted at the elderly, while convenience stores sell packaged food in smaller portions for seniors.

But the business of actually dying is a whole other opportunity. There is even a term for it here: “shukatsu,” or preparing for death. It is a play on a more common homophone for job-hunting.

“The government estimates that in 2038, 1.68 million people will die,” said Midori Kotani, a social scientist at the Dai-ichi Life Research Institute, part of a major insurance company. “Because there are so many more people dying, people see business opportunities there.”

At the first Endex, or “Life Ending Industry Expo,” more than 200 companies were trying to get a bigger chunk of the industry, which the expo’s organizing committee said was now valued at a whopping $41 billion.

There were the usual coffins and tombstones, plus the latest-model hearses. But there were also Buddhist monks touting for business — people are not keeping up with the annual rituals these days — and coffee retailers hoping to sell their products as gifts for funeral attendees, which is a custom here.

There was also a mobile pet cremator offering to pull up his furnace-loaded van in front of your apartment building and turn Fido into ash. A 20-pound dog costs about $300 and takes about an hour to cremate. A hamster, considerably less on both counts.

There were also some novel products for humans.

“Some people have long wanted to go into space,” said Hirohisa Deguchi of Galaxy Stage, a company that will send a small metal container of ashes up in a rocket. (Funnily enough, his surname means “exit.”) “We can put them in this capsule and launch them on a rocket.”

Five people have had some of their remains sent into space, and another five are scheduled for liftoff next month .

The cheapest “space memorial” — being launched into space and burning up on reentry — costs about $3,700, or you can go into orbit on a satellite, where your family can track you with GPS for 240 years, for $8,000. The deluxe model — having your ashes left in a capsule on the moon — costs an out-of-this-world $21,000.

For those who want to stay on the ground, the Heart in Diamond company offers to turn a person’s hair or ashes into a gemstone. The company offers a range of colored diamonds — including orange, blue and green, in various sizes and carats — starting at $3,000 and going up to $20,000.

Most customers are women wanting to keep their mothers close, said Naoto Kikuchi, a company director, as he manned his busy stall.

There is a special reason this “mourning jewelry” appeals to Japanese women, he said: “If you’re married, you are buried with your husband’s family, not with your own family.” That makes jewelry a way to keep your birth family close, he said.

But there is another reason people in the shukatsu business need to innovate: Even as the number of deaths goes steadily up, the money that people spend on funerals and other such expenses is going steadily down. That means the overall industry is stagnant, said Kotani, of the Dai-ichi institute.

“In a place like Tokyo, about 30 percent of people who die don’t even have funerals — they just go straight to cremation. Plus, how much people spend on one funeral is declining,” Kotani said, adding that people are becoming increasingly frugal and are not wanting to cause stress for their families left behind.

“So people in this business have to find ways to maximize the amount of money spent on each death,” Kotani said. “That’s why we’re seeing video messages from deceased people and offers to send ashes into space.”

One of the 22,000 people who were checking out the options at the expo was Mariko Saito, a 68-year-old widow from Tokyo. “I learned about this on television,” she said as she perused small Buddhist urns.

“I don’t want to be buried in the same grave as my [deceased] husband as I don’t have a good relationship with his side of the family,” she said with a laugh. “So I’d like to think about what I want to do with my money and about my ending and share it with my daughter when she visits for New Year’s holidays.”

For businesses, there is a strong incentive to cater to people such as Saito, to be innovative and come up with new ways to make money. As Kotani puts it, “After all, you only die once.”

Complete Article HERE!

Prison hospice program blesses both the living and dying


Hospice of Acadiana, whose volunteers include, from left, Martie Beard, Lyle Ann Hernandez, Ann Wallace, Lewis Bernard and Charlene Miller, annually visit state prisons to support inmates administering end-of-life caregiving to fellow prisoners.
Hospice of Acadiana, whose volunteers include, from left, Martie Beard, Lyle Ann Hernandez, Ann Wallace, Lewis Bernard and Charlene Miller, annually visit state prisons to support inmates administering end-of-life caregiving to fellow prisoners.

According to Luke 23:42, a thief crucified alongside Jesus said to him, “Remember me when you come into your kingdom” to which Jesus replied, “Amen, I say to you today you will be with me in Paradise.”

Hospice of Acadiana takes the verse to heart and annually sends volunteers to support inmates administering end-of-life caregiving to fellow prisoners.

Volunteers bring bags of supplies to their prison hospice counterparts, inmates taking on death watches in addition to other prison duties.

The bags are handmade by a Lafayette woman and contain a blanket, candy, snacks, socks and toiletries, all supplied by the volunteers themselves or by donation. The blanket doubles as a prayer shawl and comes with the blessing, “Know that even in the middle of the darkest night you are not alone.”

“We do continuing education, but we leave with more than we bring,” said Ann Wallace, Hospice of Acadiana volunteer director.

The volunteers mostly talk about hope.

“We try to talk about topics to help them be better volunteers,” she said. “It’s a very special program and they (inmates) have to apply. It’s an esteemed position.”

While Louisiana State Penitentiary at Angola has the first and oldest prison hospice program in the state, the volunteer group also serves Dixon Correctional Institute in Jackson and Elayn Hunt Correctional Center and Louisiana Correctional Institute for Women, both in St. Gabriel.

There also is a hospice program at the B.B. “Sixty” Rayburn Correctional Center in Washington Parish, near Angie.

Started in 1997 by directive of Warden Burl Cain, who recently announced his retirement, Angola trained 40 inmates in issues that affect end of life and how to take care of fellow prisoners.

Hospice of Acadiana mentors from the outside.

“We talk about the four most important things,” said Lewis Bernard, a volunteer for 15 years. “I’m sorry, I love you, thank you, and I forgive you. We start with that.”

Volunteers from Hospice of Acadiana assist inmates in practicing basic care, helping the terminally ill to die comfortably and making sure inmates don’t die alone. They offer advice in all the aspects of social, emotional and physical care, including bereavement, spirituality and reconciliation with family.

Anywhere from 10 to 20 volunteers are mustered for the yearly visit in December.

“We put an email out that we’re going to the prison and ask who wants to come,” said Wallace.

“No one really knows until you experience it,” she said. “My Bible study group didn’t even understand.”

Whether they’re serving 10 to 20 years or life, the reality is terminally ill prisoners are not transferred out to die, and if family doesn’t claim them, they are buried on site in coffins made by prisoners.

“I remember one inmate saying, ‘I know I’m like a broken car, they’re going to fix me and I’ll run better,” said Bernard. “At St. Gabriel and Dixon, there’s hope.”

He said that’s not the case at Angola. “They (prison hospice volunteers) see their work as more of a ministry,” said Bernard, “You can’t be a wimp and do that work. They become the nurses. At the moment they die, nothing’s left but their relationship with God. They’ve been stripped of everything else.”

“It’s the way all hospice should work,” said Jamie Boudreaux, executive director of the Louisiana and Mississippi Palliative Care Association. “They are caring for their fellow inmates in a most remarkable way. For 24 hours they don’t leave their side. It’s one of the most incredible programs in the country. We have correctional officers who come to Angola to see it.”

Prisons in Louisiana have a particularly bloody aspect to their history, said Boudreaux.

“Angola is still a maximum security facility,” he said, “but there is a new level of cooperation between inmates and guards.”

According to Boudreaux, prisoners themselves notice a difference, a newfound dignity.

“It truly is the most transformative story I have seen in my lifetime,” he said.

The Angola hospice program is documented in “Serving Life,” a film narrated and produced by Academy Award-winner Forest Whitaker.

The film takes viewers inside Angola, where the average sentence is more than 90 years. With prison sentences so long, 85 percent of the inmates will never live on the outside again.

Charlene Miller, a 23-year volunteer, explained that before hospice, prisoners died in their cells or the infirmary.

“It’s something to see those big, burly men soothe the dying and pray with them,” she said. “It makes me feel good. I love it. It’s a privilege to be in on the last moments of their lives.”

Complete Article HERE!

Stillbirths and Infant Deaths, with Amy Wright Glenn

The Birthful Podcast

Nothing can prepare a person for the tragedy of losing a baby, along with the hopes and dreams of being a parent to that child. How to cope? What to expect? How to get helpful support? Amy Wright Glenn helps us to compassionately navigate this difficult reality.

 Listen to the podcast HERE!


What we talked about:

  • Why we should be talking about this more.
  • When birth and death collide.
  • How to best help moms: the presence of listening
  • The importance of a “teach me” perspective instead of a “fix it” perspective
  • Ways to honor the baby and acknowledge the loss.
  • The importance of mementos, photos and rituals
  • Integrating the mindbody pieces for subsequent pregnancies
  • Finding purpose amidst the grief: the story of a mom who donates 92 gallons of breast milk following pregnancy loss


More on stillbirth, infant loss, and links Amy mentioned:


Other Helpful resources:


About Amy Wright Glenn
Headshot Amy Wright Glenn
Courtesy of Amy Wright Glenn

Amy Wright Glenn earned her MA in Religion and Education from Teachers College, Columbia University. She taught for eleven years in the Religion and Philosophy Department at The Lawrenceville School in New Jersey earning the Dunbar Abston Jr. Chair for Teaching Excellence.  She is a Kripalu Yoga teacher, Birthing Mama® Prenatal Yoga and Wellness Teacher Trainer, (CD)DONA birth doula, hospital chaplain, and founder of the Institute for the Study of Birth, Breath, and Death. Amy is a regular contributor to PhillyVoice and recently published her first book: Birth, Breath, and Death: Meditations on Motherhood, Chaplaincy, and Life as a Doula.

To learn more, visit: BirthBreathAndDeath.com or follow the conversation on Facebook.


2015 is the year America started having a sane conversation about death

The American health care debate used to get bogged down in fights over rationing and “pulling the plug on grandma.” Not anymore.

by Sarah Kliff


Earl Blumenauer had become accustomed to losing.

During the health reform debate, the Oregon congressman pushed a provision that would reimburse doctors for helping Medicare patients draw up advance care directives.

Blumenauer’s proposal quickly became the most politically toxic section of a law rife with contested projects and programs. It’s the part of Obamacare that Sarah Palin termed “death panels.” In August 2009, amidst ugly skirmishes at angry town halls, legislators relented. They left the end-of-life planning provision on the cutting-room floor.

“It was very difficult, in part because of the lingering death panel cloud”

But Blumenauer was undeterred. He quickly began lobbying the Obama administration to create the advance care benefit through regulations that Congress wouldn’t have to approve.

“It was very difficult, in part because of the lingering death panel cloud,” Blumenauer told me in a recent interview.

blumenauer card
The pocket card Rep. Blumenauer would hand out to White House officials.

Since 2009, Blumenauer has doggedly — and unsuccessfully — badgered any Obama administration member who might listen to his cause. But the White House, for five years, wouldn’t budge. Every year, it would put out the list of services Medicare would reimburse. And every year, advance care planning would not be on it.

Blumenauer recalled once attending a picnic at the White House — and pestering administration officials to take small cards he’d had printed up to summarize his case.

“At this year’s White House picnic, around the Fourth of July, there was some indications it could go our way,” he says.

On November 2, Blumenauer finally won: The White House finalized rules that will allow doctors to be paid for every discussion they have with patients about creating an advance directive.

The United States has — quietly and with little fanfare — begun to do something quite remarkable. We’ve started to have a more sane conversation about death, something that just this spring, as I wrote in a lengthy essay, seemed near impossible. That has allowed for significant policy changes that will, starting in 2016, begin to revamp the way Americans plan for the inevitable.

I’ve spent much of the past month asking legislators, doctors, government officials, and advocates about how that happened. They say health care became a much less heated topic. Doctors and patients, meanwhile, began to take a bigger leadership role. And the White House, cognizant of Obama nearing the end of its term, appeared to see a last moment for action — and decided to seize it.

“As a country, we’re more willing to have a conversation around the end of life,” says Kim Callinan, chief program officer for the end-of-life advocacy group Compassion and Choices.

Medicare spends billions on end-of-life care. But patients aren’t getting the care they want.

Fierce protests over end-of-life care broke out at 2009 congressional town hall meetings.
Fierce protests over end-of-life care broke out at 2009 congressional town hall meetings.

Dying in America is expensive. The 6 percent of Medicare patients who die each year typically account for 27 to 30 percent of the program’s annual health care spending. Medicare spent an average of $33,500 for beneficiaries who died in 2011 — four times the amount it spent on the seniors who lived.

Health care providers often make heroic efforts to save patients’ lives in their final days and weeks. The average Medicare patient who dies from cancer spends 5.1 days of his or her last month of life in the hospital. A quarter of these cancer patients are admitted to the intensive care unit over the same time period.

But surveys of patients with terminal disease suggest this isn’t what they actually want. One survey of 126 patients facing near death found they had five priorities at the end of life — and prolonging life was not actually among them.

Patients told researchers they wanted their pain controlled, a sense of control over their care, their burdens relieved, and time to strengthen relationships with loved ones. They also specifically did not want the “inappropriate prolongation of dying.”

A 2012 paper found that cancer patients who have less intensive care at the end of life — who have fewer hospitalizations and intensive care unit visits in their last week of life — report the best quality of life at the time of death.

In Washington, something so costly that leads to worse patient outcomes would be, in other public health programs, a no-brainer. But with end-of-life care, the opposite tends to be true: We can’t talk about the cost of dying because it sounds like a discussion about rationing. Taking cost into account feels callous and inappropriate in the context of death. For years now, that’s made end-of-life care an unapproachable topic on Capitol Hill.

That the already-polarizing health reform law included policy changes for end-of-life care certainly did not help matters.

“This was toxic for a while because of the gross mischaracterization of what we wanted to do,” says Sen. Mark Warner (D-VA), who has worked on end-of-life care legislation.

Warner, like many other legislators who work on the issue, had his own personal story of attempting to care a loved one — in his case, his mother, as her Alzheimer’s worsened.

“I was someone who was relatively informed; I was the governor of Virginia,” he says. “We knew something was coming, but we never had the conversation within our family that we needed to. This is an issue that has touched every family, and touched all the ups and downs of the health care debate.”

How 2015 changed the way America talks about death

white house

The first two attempts to pay doctors to talk about death started in Washington. And both were abject failures.

The first attempt touched off the “death panel” outcry during the summer of 2009.

The second came in the winter of 2010, when the Obama administration tried quietly slipping the new benefit into regulations that outline how much Medicare doctors get paid for various procedures. That approach seemed to work — until an eagle-eyed New York Times reporter noticed the regulatory bombshell and wrote a story for the paper’s front page. Within days, the Obama administration retreated.

“We were, to put it mildly, disappointed when the administration changed course at the end of 2010,” says Blumenauer. “Any poor soul who happened to be the secretary of Health and Human Services or high ranking at the Center for Medicare Services has heard from me about it.”

Any federal proposal to change the way Americans die was met with immediate skepticism and framed as a government takeover of health care.

This last successful attempt didn’t start in the White House. It didn’t even begin in Washington. It began far outside the Beltway, at the 2012 meeting of the Illinois State Medical Society.

That’s where two doctors from the DuPage Medical Society — which covers the county just west of Chicago — brought to the floor a resolution to ask the American Medical Society to create a billing code for advance care planning discussions. Somewhat confusingly, the AMA creates all the billing codes that Medicare uses, while the government decides how much to pay for each code.

“This was the voice of doctors saying, ‘We want this,'” says Scott Cooper, executive director of the Illinois Medical Society. “Because it came from physicians and was based on clinical experience, and not some policy wonk who had some idea in Washington. It’s an easier sell when you have the voice of the medical community.”

The resolution passed — and a handful of Illinois State Medical Society members flew to an AMA meeting in 2013 to deliver their request in person. They were successful, and the AMA created two codes.

“It’s not every day you just create a new procedure for Medicare,” says Cooper. “We’d never done it before. But this was relatively seamless and easy. It didn’t face any pushback.”

After that 2013 meeting, the billing codes existed — but Medicare never attached any money to them. If a doctor had tried to bill for an end-of-life planning discussion, no reimbursement would show up. Advocates pushed delicately on the issue, knowing that Medicare was a massive agency they had to work with on countless other issues.

“It’s not every day you just create a new procedure for Medicare”

“You don’t want to be put in this awkward position of pushing too hard against an administration or executive branch that has largely been doing many positive things,” says Peter Hollmann, a board member of the American Geriatric Society and a practicing physician in Rhode Island.

Medicare sat on the codes for two years. But in early 2015, rumors started to ripple through Washington’s health policy circles: This would be the year that Medicare started paying for end-of-life discussions.

The timing made sense: This was, arguably, the last moment the Obama administration had to create the benefit. If the administration waited until 2016, it would be making the change mere days before the presidential election — a risky time for any policy change. Late 2015 appeared to be the Obama administration’s last shot.

“People felt this was the last chance to do this,” Hollmann says. “No one knows what can happen in an election year, with the potential for shenanigans.”

On July 8, Medicare published draft plans to pay doctors to talk about death (about $80 for the first 30 minutes, and another $75 for an additional half-hour). The agency invited comments, which came back near universally positive.

“I am a healthcare professional in palliative care and advance care planning is critical to patients and their loved ones,” one doctor from California wrote in.

“Patients and families deserve to have realistic information provided by their doctors, rather than relying on their assumptions often fed by the popular media about what ‘life support’ and ‘rehabilitation’ can actually look like,” another in Oregon commented.

“Please add the codes below,” another Tennessee doctor requested, “so end-of-life suffering can be minimized.”

There was no outcry, and no doctors objecting to the new Medicare benefit. On October 30, Medicare made the decision official: Beginning in January 2016, it would pay doctors to talk about death.

“It’s a terrible, terrible way to die”

Brittany Maynard on her wedding day.
Brittany Maynard on her wedding day.

Much like in Washington, bills that changed end-of-life policy never had much luck in California before.

Advocates there, however, wanted to go much further: They had pushed legislation that would allow doctors to prescribe lethal medication to terminally ill patients — in other words, physician-assisted suicide.

But efforts failed in 2005 and 2007, as the California legislature rejected the proposal. Only small, decidedly liberal states like Vermont and Oregon seemed willing to pass those laws.

That all changed with Brittany Maynard, a 29-year-old who died in late 2014 from a rare brain cancer called glioblastoma multiforme. It’s a fatal disease that typically causes massive cognitive decline in the last months of lives. Patients can become unable to remember their own last names or to distinguish between a trash can and a toilet.

“My glioblastoma is going to kill me, and that’s out of my control,” Maynard told Peopleat the time. “I’ve discussed with many experts how I would die from it, and it’s a terrible, terrible way to die.”

Maynard looked at that future and made a firm decision against. She moved to neighboring Oregon, which allows doctors to prescribe lethal medications to terminally ill patients like her. Maynard used that law to take her own life on October 30, 2014.

Before her death, Maynard also recorded a series of videos imploring California’s legislature to pass a similar law — which would allow other Californians to choose the same death without moving hundreds of miles north. She recorded testimony that was presented to the legislature in March 2015 — five months after her death.


“Brittany helped normalize the discussion around end-of-life care,” says Kim Callinan of Compassion and Choices. “Here was this beautiful 29-year-old woman whom we could really relate to. Her coming forward helped transform the conversation that was taking place already, and raised the issue’s visibility.”

Compassion and Changes ran its largest-ever campaign for a state bill, putting a half-dozen organizers on the ground throughout the state. It had a watershed moment when the California Medical Association, which had opposed previous aid-in-dying bills, agreed not to take a stance on the new legislation.

Maynard’s illness caused the group to “start taking a look at our historical positions,” California Medical Association spokesperson Molly Weedn told me over email. “The decision was made to remove any policy that we had on the books that outright opposed aid in dying. We wanted to ensure that it was a decision made between a physician and their patient and determined around individual instances.

On October 5 — 340 days after Maynard’s death — California Gov. Jerry Brown signed Assembly Bill 12 into law. In one fell swoop, Brown tripled the number of Americans who live in states where doctors can prescribe lethal medications to patients whom they expect to live six or fewer months. In his signing statement, he cited the letters he’d read from Brittany Maynard’s family.

“I do not know what I would do if I were dying in prolonged and excruciating pain,” Brown wrote. “I am certain, however, that it would be a comfort to be able to consider the options afforded by that bill. And I won’t deny that right to others.”

A saner approach to death in 2016?

In some ways, the 2015 changes to end-of-life policy in America were large. Medicare didn’t pay doctors to talk about death. Now it does. This year, 13.7 million people live in places where it’s legal for physicians to help terminally ill patients end their lives. Next year, that number will jump to 52.2 million people.

But in other ways, these changes are still quite small. Data from Oregon suggests that the number of people who use the California law, for example, will be relatively small. And advocates for end-of-life care planning see much work to do when it comes to ensuring that Americans’ preferences for care at the end of life are met.

Lee Goldberg directs Pew Charitable Trusts’ improving end-of-life care project, and he sees the new Medicare benefit as a first step rather than an end goal. There’s work to be done to ensure that doctors are equipped to have these conversations — and that patient preferences that do get recorded are easily accessible when patients have emergency situations.

“The odds are no better than chance right now, so that’s a big challenge, making sure this patient data is available when it’s needed,” he says.

Goldberg and others see 2015 as something akin to a proof of concept: proof that the American political system and state governments can pursue changes to end-of-life care policy without getting shouted down about death panels and rationing. This doesn’t guarantee future change but at least allows for the possibility. Because in 2015, it wasn’t impossible for Blumenauer to get the administration to pay attention to his pocket cards.

“It does wear you down sometimes,” he says of sticking with the issue for so long and seeing so little progress until now. “How many times do you answer the same questions on something that seems so compelling, and every year have the answer be no? But every year the case became stronger, and that’s more difficult to say no to.”

Complete Article HERE!

Sherwin Nuland on the Art of Dying and How Our Mortality Confers Meaning Upon Our Lives

“The greatest dignity to be found in death is the dignity of the life that preceded it.”


“To lament that we shall not be alive a hundred years hence, is the same folly as to be sorry we were not alive a 005hundred years ago,” Montaigne wrote in his timeless meditation on death and the art of living. And yet in the half millennium since his day, we’ve made paltry progress on coming to such nonchalant terms with the reality of death. We are still profoundly unpreparedwhen it strikes our loved ones and paralyzed by the prospect of our own demise. Our discomfort with “the idea of a permanent unconsciousness in which there is neither void nor vacuum — in which there is simply nothing” is what surgeon, bioethicist, essayist, and Yale professor Sherwin Nuland(1930–2014) explores with astonishing wisdom and sensitivity in his soul-stretching 1993 book How We Die: Reflections on Life’s Final Chapter (public library) — a dimensional treatise on death and an effort to “demythologize the process of dying,” fusing philosophical reflections on its most universal aspects with the specialized complexities occasioned by the six most common disease categories implicated in modern death.

But Nuland’s hard-earned professional expertise, his life’s work in medicine and understanding the human condition, is merely the byproduct of his unforgiving personal brush with death — Nuland lost his mother to colon cancer a week after his eleventh birthday, a tragedy that shaped his life. “All that I have become and much that I have not become, I trace directly or indirectly to her death,” he reflects. This book itself was written less than a year after Nuland lost his brother to the same disease that had claimed their mother’s life.


Nuland writes:

Everyone wants to know the details of dying, though few are willing to say so. Whether to anticipate the events of our own final illness or better to comprehend what is happening to a mortally stricken loved one… we are lured by thoughts of life’s ending… To most people, death remains a hidden secret, as eroticized at it is feared. We are irresistibly attracted by the very anxieties we find most terrifying; we are drawn to them by a primitive excitement that arises from flirtation with danger. Moths and flames, mankind and death — there is little difference.


As with every other looming terror and looming temptation, we seek ways to deny the power of death and the icy hold in which it grips human thought.

Throughout history, he observes, our strategies for ameliorating that icy hold have varied, from mythology to humor to religion, but the past few decades have given us a wholly new phenomenon, one he dubs “modern dying” — a sort of packaged experience that takes place at the hospital, where we try to artificially enact the ancient ideal of ars moriendi, or the art of dying. Reflecting on his extensive work with dying patients, Nuland considers the impossibility of that ideal in a modern context:

The good death has increasingly become a myth. Actually, it has always been for the most part a myth, but never nearly as much as today. The chief ingredient of the myth is the longed-for ideal of “death with dignity.”


The belief in the probability of death with dignity is our, and society’s, attempt to deal with the reality of what is all too frequently a series of destructive events that involve by their very nature the disintegration of the dying person’s humanity. I have not often seen much dignity in the process by which we die… Only by a frank discussion of the very details of dying can we best deal with those aspects that frighten us the most. It is by knowing the truth and being prepared for it that we rid ourselves of that fear of the terra incognita of death that leads to self-deception and disillusions.

And yet despite lamenting the illusory mythology of dying with dignity, Nuland’s perspective is ultimately an optimistic one, reframing the source of dignity in death rather than denying it altogether, and doing so in wonderfully poetic terms:

The greatest dignity to be found in death is the dignity of the life that preceded it. This is a form of hope that we can all achieve, and it is the most abiding of all. Hope resides in the meaning of what our lives have been.


But our greatest act of hope in dying, Nuland argues, is the dissolution of our illusion of separateness. He writes:

The real event taking place at the end of our life is our death, not the attempts to prevent it. We have somehow been so taken up with the wonders of modern science that our society puts the emphasis in the wrong place. It is the dying that is the important thing — the central player in the drama is the dying man: the dashing leader of that bustling squad of his would-be rescuers is only a spectator, and a groundling at that.

Reflecting on the commonly documented medical fact that the dying can often survive for weeks beyond their prognosis, sustained merely by the hope to live until a specific moment of significance — a daughter’s wedding, a grandchild’s graduation — Nuland calls to mind Rilke’s famous lines of verse (“Oh Lord, give each of us his own death / The dying, that issues forth out of the life / In which he had love, meaning and despair”) and considers the true source of hope:

For dying patients, the hope of cure will always be shown to be ultimately false, and even the hope of relief too often turns to ashes. When my time comes, I will seek hope in the knowledge that insofar as possible I will not be allowed to suffer or be subjected to needless attempts to maintain life; I will seek it in the certainty that I will not be abandoned to die alone; I am seeking it now, in the way I try to live my life, so that those who value what I am will have profited by my time on earth and be left with comforting recollections of what we have meant to one another… Whatever form it may take, each of us must find hope in his or her own way.


Nuland turns to the heaviest burden in dying, the feeling of regret over “conflicts unresolved, breached relationships not healed, potential unfulfilled, promises not kept, and years that will never be lived.” But even in this despairing proposition, he finds an unlikely and rather beautiful source of hope. Subverting Viktor Frankl’s famous formulation of the oft-repeated idea that we should live each day as if it were our last — “Live as if you were living already for the second time and as if you had acted the first time as wrongly as you are about to act now!” Frankl wrote in his spectacular memoir about the search for meaning — Nuland finds consolation in a heartening mirror-image interpretation:

Perhaps the mere existence of things undone should be a sort of satisfaction in itself, though the idea would appear to be paradoxical. Only one who is long since dead while still seemingly alive does not have many “promises to keep, and miles to go before I sleep,” and that state of inertness is not to be desired. To the wise advice that we live every day as though it will be our last, we do well to add the admonition to live every day as though we will be on this earth forever.

He returns to the hard ideal of ars moriendi, now enveloped in this newfound softness:

Since human beings first began to write, they have recorded their wish for an idealized ending some call the “good death,” as if any of us can ever be sure of it or have any reason to expect it. There are pitfalls of decision-making to be sidestepped and varieties of hope to seek, but beyond that we must forgive ourselves when we cannot achieve some preconceived image of dying right.


But perhaps Nuland’s most salient point has to do with the necessity of death as a force of nature’s forward momentum — an idea partway between evolutionary theory and the Japanese concept of wabi-sabi, with a touch of Alan Watts. He writes:

We die so that the world may continue to live. We have been given the miracle of life because trillions upon trillions of living things have prepared the way for us and then have died — in a sense, for us. We die, in turn, so that others may live. The tragedy of a single individual becomes, in the balance of natural things, the triumph of ongoing life.

In that sense, the dignity of death is indeed the dignity of life, and our only responsibility in dying well is having lived well:

The dignity that we seek in dying must be found in the dignity with which we have lived our lives. Ars moriendi as ars vivendi: The art of dying is the art of living. The honesty and grace of the years of life that are ending is the real measure of how we die. It is not in the last weeks or days that we compose the message that will be remembered, but in all the decades that preceded them. Who has lived in dignity, dies in dignity.

How We Die is a timelessly wonderful read in its entirety. For a necessary counterpart, see Meghan O’Rourke’s beautiful memoir of grief and learning to live with loss.

Complete Article HERE!

My Last Day

By Michael Henry



Unfortunately we all die, and today had to come. If anything it’s a relief. Between my old age and failing kidneys, every day was becoming increasingly uncomfortable — These last few weeks, especially. None the less, I did my best to enjoy each and every day.

Since today could not be avoided, we decided to make an event out of it. Who doesn’t want to spend their last moments having a good time with loved ones?

My Breakfast

001You can’t start any day without a healthy breakfast — let alone second breakfast, or elevensies, but I digress. Today was no exception, but we had to take it over the top.

I really enjoyed my breakfast

My human, Michael, made me a wonderful decadent breakfast with my favorite things: Fancy Feast Gravy Lovers (Beef) with Archetype powered rabbit mixed in. It may not sound great to you, but YUM!

I *REALLY* enjoyed my breakfast


I think I overate. So good. So full. Need to relax.
Look! The sun!

Oh, yeah.
Eating is so much work
Eating is so much work

Oh wait, I am in the middle of telling a story…

Brushing and reminiscing

Once I recovered from my breakfast-sun coma, I spent some time with my humans, Mike and Tracy. They brushed me, petted me, and we talked about my life.

Right… there…
Right… there…

We talked about how I was born in New York City in 1994.

A t-shirt my first human, Sui, designed based on me, in 2002.

We talked about my first human, Sui and how much I miss her. I used to climb up the ladder of her loft bed, in the East Villiage. I’d follow her too close and occasionally she’d end up stepping on me. She made an awesome t-shirt based on me.

We talked about how my human, Michael, won my heart with his constant affection. I claimed him as mine in 1999 — When he would go to work, he would pet me goodbye. The day I decided he was mine, I grabbed his hand when he went to leave, and pulled him back. Literally! I didn’t want to let him go, and stayed with him the next 16 years.

Me, Newt, and Mulder in 2007

We talked about my bully of a brother, Mulder (1994–2009), who I still loved, and miss. He was always the outgoing one, and twice my size. He wasn’t so bad most of the time, but occasionally he was so mean to me.

We talked about moving to Colorado and all the years there.

We talked about the years with the dog, Ripley (2005-?) — I never liked him. He was never mean to me, he was just a dog. Tried to smell my butt all the time. Ick!

We talked about my adopted sister, Newt (2006–2009). She was annoying, but truly I didn’t mind her as much as I let on. Such a young ball of energy, and sadly lived up to the bit about curiosity and cats.
We also talked about moving to Seattle, and how I decided to stop being so shy. One day I was curious, so started going out and introducing myself to people. It was amazing!

We talked about my final human, Tracy. She was reluctant, at first. Eventually I won her over and claimed her as mine. She was always so affectionate to me. She was always there to help Michael take care of my health needs this last year.

So much affection today
I decided Michael needed help learning fashion photography. Here I am directing him and the model.


So much affection today

After so much talking and affection, I needed a break

Resting and Health

When cats get as old as I do, it often comes with health complications. I’m certainly no exception. because of it, I need to rest. More and more every day.

My kitty stairs and bed. I’m so weak I can’t hop 12-inches any more, let alone climb it.
So cumfy, back in the sun again!
So cumfy, back in the sun again!

After a year, I’m barely able to walk any more. My body aches and I’m so tired. After a final vet visit, we discovered my kidneys are in the final stages of failure. At this point my health is declining by the day. Don’t even remind me of the grand-mal seizures, they suck!

Rather than have me slowly suffer over the next few weeks (at most), we decided to have a relatively happy ending.

Final Moments

Not long after getting into my bed did I finally fall asleep. I was so tired from the day’s activities that I didn’t even awake when the vet arrived. That’s a good thing, it would have made me anxious.

While laying there I felt a prick on my side. By time I realized what was happening, the drugs were already sedating me.


After that, Michael picked me up one last time, and held me as a drifted away.


Final Thoughts

One of the things Michael always loved about me is that no matter how tough life was for us, I was always affectionate and loving. I always adapted, and tried to make the best of a situation, faster than any other cat he’s known.

If you don’t try to enjoy every good moment, why bother living? We should enjoy every moment we get.

Oh yeah, and and last night I left a gift for my humans to remember me by. Don’t ruin the surprise!



Complete Article HERE!