Month: February 2016

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On death and dying at home

By Pat Webdale

Pat Webdale

On display at the Dutton House in the Shelburne Museum in Vermont is a wooden cradle several feet long. A thin blanket covers the bottom.

The cradle that sits in front of the fireplace was used to keep elderly persons who were close to their demise warm and comfortable near their family. It was once a common practice when most ill and elderly persons died at home.

It also reminds me of my own grandmother.

Several people died in my grandmother’s home. I witnessed my Grandma Gert as the caretaker of her mother, my great-grandmother. I remember watching my grandma and her daughter, Aunt Helen, helping the older woman to the bathroom. There were no bedside commodes delivered by hospice yet. Each woman held great-grandmother under one arm. She was 87 years old. We would give her sips of water and hugs and fix her pillows. She died peacefully at her daughter’s home.

Grandpa Mike was the next recipient of Gert’s loving care. My dad would come over to help him walk around the living room to keep his skin free from irritation. I was present in the house when Grandpa died. Grandma herself was not so fortunate as to die in her home. After breaking two bones and becoming incapacitated, she died in a nursing home. I did get to visit my maternal and paternal grandmothers in their respective nursing homes.

Thirty years later, my mother-in-law, suffering from terminal cancer at age 72, was able to stay in her own home until the end of her life. She had the companionship of her sister until a week before she died, when she went to a hospice house for respite. One night I had the privilege to stay overnight and care for her in her hospice room. When the next day dawned, it was Mother’s Day. All of the family gathered for a party in the common room. We gave her gifts and enjoyed dinner. Mom died two days later.

A decade later, my father, 85, needed acute care. The family gathered to talk about putting him in a nursing home. We decided to first have a visit with a hospice volunteer. I sat in the living room with my dad and wished out loud that he would die peaceably, and not languish for many days. At that very moment he took a last breath. He was able to pass away with his oldest daughter, me, close to him.

My own mom always said she did not want to go into a nursing home. It is amazing that she was able to fulfill this wish. She lived on her own for 11 years after my father died. Her home was a few doors away from my sister, who was mom’s baby. Susan took extraordinary care of our mom. She drove her to the senior center and took her to the library and grocery shopping. I am sure this TLC is why mom lived so long. At the age of 91, my mother suffered a heart attack and we did call 911. She went into a hospital and put up with various tests and X-rays. I stayed overnight with her for the duration of the stay. The staff told us that she was not going to rally and recover, as pneumonia had set in. An ambulance returned her to her beloved home. Again we called on hospice. She left the easy chair she was sitting in and went to bed, her mind made up. Her four children were with her almost constantly. A few grandkids came to visit; one was a nurse who took her final vitals. I was the kid who gave her the morphine. My sister is the one who heard her last breath as I slept in another room.

I think about that cradle once in a while. Maybe when my time comes, I can prevail on my son-in-law to build one for me. I will snuggle in with my Pottery Barn faux fur blanket. Maybe I can still ask for a glass of Cabernet. That would be nice.

Complete Article HERE!

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What the words of a dying doctor taught me about life’s meaning

BY REBECCA RUIZ

when-breath-becomes-air

When I learned of the late Paul Kalanithi’s memoir When Breath Becomes Air, which published earlier this year, I felt drawn to its premise. A young doctor with great ambition receives a terminal cancer diagnosis and reports back from the twilight of his life on his quest to seek and find meaning.

Feeling unsure of my own purpose in life, I wanted Kalanithi’s journey to become a beacon to guide my own wandering. Perhaps, I hoped, he might be some kind of oracle.

But that is not the design of Kalanithi’s gripping, emotional book. You, dear reader, are not meant to passively observe Kalanithi’s final moments, glean his wisdom and walk away feeling assured in your path.

Instead you will bear witness to his yearning, suffering and grace. You will watch as lung cancer annihilates his dreams of becoming a renowned neurosurgeon and doctor-philosopher. You will ask yourself if you’ve ever worked as hard as Kalanithi, who commits himself to relentless hours as a medical resident performing high-stake surgeries — even as he tries to dodge death.

As unbearable as that sounds, the pull of this narrative is magnetic. More than a year into parenthood, I hadn’t finished a single book — yet I could barely put down When Breath Becomes Air. Almost nothing else felt as important.

That the book demands your presence is a credit to Kalanithi’s captivating prose. Whether he is describing in vivid detail a midnight hike in the Eldorado National Forest (“pitch-black, stars in full glimmer, the full moon still pinned in the sky”) or his desire to bridge the worlds of literature and neurosurgery (“I had come to see language as an almost supernatural force”), Kalanithi’s sentences are both urgent and poetic.

Others in a similar position might be tempted to sanitize their life. Here’s a man who is candid about his marital troubles. He confesses that he finds himself drifting into becoming a doctor who just goes through the motions:

All my occasions of failed empathy came rushing back to me: the times I had pushed discharge over patient worries, ignored patients’ pain when other demands pressed. The people whose suffering I saw, noted, and neatly packaged into various diagnoses, the significance of which I failed to recognize — they all returned, vengeful, angry and inexorable.

Kalanithi even admits that he suspected cancer months prior to the official diagnosis. His account would have been richer with an exploration of why he dismissed those prescient instincts, but the reader can’t fault a man who has so little time for self-examination.

When Breath Becomes Air is an imperfect book, but it draws its power and permanency from those limitations.

Kalanithi died before finishing the memoir in March 2015, at age 37. His final passage is a moving dedication to his infant daughter (and is followed by an explanatory epilogue from his wife). But before he writes those tender words, he leaves the reader with a gift of their own:

Everyone succumbs to finitude. I suspect I am not the only one who reaches this pluperfect stage. Most ambitions are either achieved or abandoned; either way, they belong to the past. The future, instead of the ladder toward the goals of life, flattens out into a perpetual present. Money, status, all the vanities the preacher of Ecclesiastes described hold so little interest: a chasing after wind, indeed.

Kalanithi makes no attempt at reassurance. The end is not tidy or filled with comforting platitudes. He makes no effort to find a reason in his death. I had read every page with anticipation, waiting for Kalanithi to share adages born of introspection and tragedy, I had missed the point all together.

Kalanithi’s wisdom lay in wrestling with the toughest questions humans can ask of themselves, even if they go unanswered. That bravery, standing at the edge of the abyss with fortitude, is what gives us meaning. And it’s what made Kalanithi a courageous doctor and human being.

When Breath Becomes Air is essential reading in a world where we try so hard to exercise control over the unpredictable. While the miracles of science and technology are worthy of our praise, we lose something vital when we forsake ambiguity for certainty.

Kalanithi understood that we learn who we are when we remain still in moments of confusion and crisis, when we pause to ask the terrifying questions. And then we keep moving forward even when it feels impossible.

“I began to realize that coming face to face with my own mortality, in a sense, had changed nothing and everything,” Kalanithi wrote. “Seven words from Samuel Beckett began to repeat in my head: ‘I can’t go on. I’ll go on.’”

Complete Article HERE!

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What Dying Looks Like in America’s Prisons

In many places, inmates who want to go into hospice care have to sign a do-not-resuscitate order first.

By ANN NEUMANN

Members of the media walk down the corridor inside the Adjustment Center during a media tour of California's Death Row at San Quentin State Prison in San Quentin, California December 29, 2015. America's most populous state, which has not carried out an execution in a decade, begins 2016 at a pivotal juncture, as legal developments hasten the march toward resuming executions, while opponents seek to end the death penalty at the ballot box.
Members of the media walk down the corridor inside the Adjustment Center during a media tour of California’s Death Row at San Quentin State Prison in San Quentin, California December 29, 2015. America’s most populous state, which has not carried out an execution in a decade, begins 2016 at a pivotal juncture, as legal developments hasten the march toward resuming executions, while opponents seek to end the death penalty at the ballot box.

I drove the four and a half hours to Rome, New York, the night before I was scheduled to visit the prison hospice program at Mohawk. The desk clerk at the Quality Inn gave me directions the next morning. “You can’t miss it,” she said in a raspy voice. Mohawk had once been a residential home for the developmentally disabled. It occupied the southernmost corner of the 150-acre Mohawk-Oneida campus and was converted to a medium-security prison in 1988. Today, it houses about 1,400 inmates, 112 of whom are inside the “skilled nursing facility,” Walsh Regional Medical Unit, which takes in prisoners from the central and western parts of New York State.What the hospice program at Mohawk did was prevent patients from dying alone. Terminal patients, particularly those dying inside prison, need human contact, companionship, and a chance to talk about their lives, the nurses told me. The program also provided healthy prisoners who had good behavior records the chance to train as volunteers, to give back to their fellow inmates. The program provided a real “sense of satisfaction to our guys,” according to the daytime hospice nurse. “They’re proud of what they’re doing. They’re putting someone ahead of themselves. They’ve put themselves first until now.” Volunteer training took place once a year (and lasted one week), but applications came in throughout the year.

The nurse called the patients in Walsh “my patients” with a kind of endearment that expressed her commitment to them and the program. Among them, 11 were dying of AIDS and seven had major illnesses, like cancer. Special accommodations were made for dying patients—like private rooms with TVs and radios and special meals—but the staff was prepared  for the “traps” that such accommodations could bring: trading morphine for cigarettes, being alone with female staff. The program, I was told, accepted patients with six months or less to live, although some live longer. “They have the chance to get involved with their own feelings,” one of the nurses said.Because of my time spent as a hospice volunteer, the tone these staff members used caught my attention. They were proud of the jobs they were doing; they felt they were contributing to the betterment of society. They found their work rewarding and fulfilling. I was in awe of them even as I balked at the paternalistic role they played in helping these prisoners—caged, monitored, “employed,” removed from the world—to  “give back.” The concept of rehabilitation may haunt any conversation about incarceration, but the extent to which anyone believes in it gets lost in the practices of policing, sentencing, and incarcerating. It’s easy to suspect that this is in part because of the power dynamic involved. Prisoners are subjected to a particular role inside, one that punishes them for any kind of deviation. They are constantly subject to an unbending authority. When prisoners go into hospice, either as patients or as volunteers, the rhetoric that surrounds their roles is constantly infused with ideas of reform.

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Walsh, it seemed, was replicating the hospice model, now decades old, inside its walls. And the old hospice directive—that patients should be helped to think reflectively and reckon with how they’ve lived their lives—fits surprisingly well in prison. It dovetails with the belief that men were incarcerated because they had not taken responsibility for themselves, because they did not understand compassion, did not follow the rules, and did not make themselves productive and useful members of society. Hospice is a way for them to find forgiveness for their sins and to make peace with their world and themselves.

Since prisons were established in the United States, there have always been prisoners dying inside, but the recent rise in the age of the prison population and the need for prison administrators to find ways to care for the elderly, sick, and dying provided them with a new opportunity for rehabilitation: care for the dying. What better way to help a prisoner face his sins than turn his face toward death?There are 2.3 million adults in jail or prison in the United States. That’s the largest number of incarcerated people in the world. Between 1995 and 2010, the number of prisoners over 55 quadrupled.  By 2030, they will account for an estimated one-third of all incarcerated people, according to a 2014 report, The High Cost  of  Low  Risk: The Crisis  of America’s Aging Prison Population, by the Osborne Association, a prison advocacy group based in New York. Behind prison walls, where every social malady is compounded, is the perfect place from which to consider the future of health-care access and end-of-life care in the United States.

According to the National Hospice and Palliative Care Organization’s 2012 report, End of Life Care in Corrections, there were more than 75 hospice programs in U.S. prisons in 2012. Fifty percent of them rely on inmates as volunteers. A 2011 paper by Katie Stone, Irena Papadopoulos, and Daniel Kelly in Palliative Medicine suggests that the benefit for inmate volunteers is that “they are able to offer patients a level of empathy that cannot be achieved by free people regardless of intention or training.” Inmate volunteers know what it’s like to be a prisoner and can better share experiences and understanding with incarcerated hospice patients. The paper suggests that volunteers “gain valuable psychological rehabilitation”  through  a “renewed sense of responsibility and care.”

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But such programs, according to the study, have two primary challenges: pain and trust. Pain management in a facility where drug use is rampant—and, indeed, a major cause of incarceration—is problematic. Doctors and nurses can find it hard to believe a patient who tells them he’s in pain. “A culture of suspicion emerged concerning the illicit drug trafficking of narcotics intended for pain relief,” the Palliative Medicine report states. The “macho” prison culture also prevented many in pain from admitting what they felt. But a larger issue, one difficult to measure, exists: “Prison healthcare staff may believe that prisoners deserve their suffering.” In other words, pain is punishment. Staff members tend to default on the side of pain over more medication when prescribing narcotics to hospice patients. In church parlance and even in broader society, the belief that pain makes us better people is commonplace. In prison, suffering is part of the centuries-old plan.It’s also hard for prisoners to believe that staff members have their best interests in mind. Can you trust doctors who work for a system that controls every aspect of your life? A system that was established to punish, subjugate, discipline, restrain, subdue? Decisions to limit care (or not pursue every option) can make prisoners even more distrustful of their caregivers. Couple that with the requirement that, in 55 percent of prisons, patients must sign DNR orders before they can enter hospice, and a climate of deprivation, ill will, and doubt about the facility’s objectives  can grow. Patient safety is tempered with a paternal “we know what’s good for you” attitude; prisoners who feel their lives are less valued think the system doesn’t care about them or is invested in getting rid of them. Yet sending prisoners to external hospices, as is done in the United Kingdom, or releasing those who are too ill to violate laws, is also a problem. The saddest sentence of the Palliative Medicine report is: “For some, the prison and its inhabitants  are all that is familiar due to institutionalization.”

“The challenge is that we can’t lose compassion or cross a line,” a nurse told me, her tone warm and professional.It’s just one of the many health challenges unique to prison populations. Prisoners age faster than those of us outside. “Incarceration not only compounds existing health issues and heightens the risk of further health problems,” states the Osborne Association’s 2014 paper, “but—most alarmingly—has a deteriorating effect on the bodies of incarcerated people.” Incarceration may slow down a prisoner’s perception of time, but it accelerates his body’s. Incarceration takes more years out of a life than just those required by a sentence. Lack of proper mental and physical health care and abnormally high levels of stress and anxiety can make fifty-year-old prisoners’ bodies seem 10 to 15 years older. Of prisoners over 50, 40, to 60 percent have mental-health challenges.

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Prisons weren’t designed for elders, either. They require that prisoners climb into bunks and haul themselves up stairs or across long distances. Meals must be eaten in 12 minutes. Daily routines are strictly timed and regimented; one error—due to dementia, disorientation, physical inability, or pain—and punishment is delivered. The physical discipline of prison, meant to rehabilitate the weak, evil, or selfish mind of a criminal, is a questionable approach to reform, at best. For an elderly population, it looks like abuse. But renovating America’s prisons to meet the needs of an aging population isn’t in the budget. Dealing with the needs of prison elders will take a variety of approaches, none of which look easy.The costs of prison health care are, like the costs of public health care, rapidly increasing. The United States currently spends about $16 billion—more than the entire Department of Energy budget—on incarceration of prisoners over the age of fifty. While it costs about

$34,000 a year to keep an able-bodied prisoner locked up, elders can cost as much as twice that amount.

Compassion is a complicated thing. It’s an emotion, both abstract and concrete, shown both in our broad support for groups or issues and in the care that we give those around us. It’s easier to care for people when you trust them, but also when you know you have power over them. When you know they need you.Trust or safety, then, can alter our levels of compassion. I felt guilty for not having more compassion for Moore, a prisoner I met at Mohawk, who later wrote to me, and I didn’t know if it was because of him or because of where I met him. I didn’t want him to be in pain. I didn’t want him to be treated unfairly. But I didn’t want anything to do with him, either. That, I realized, was the line that prison medical staff people had to draw. They may use prison rules or state laws or medical ethics to draw the line. And those laws and rules may make their work easier for them. But it was an institutionalized way of grappling with very complicated emotions like trust and safety and even personal chemistry. Their work is made possible by an ethics, not to be confused with a universal set of moral principles. The ethics of the prison medical staff members was unique to their place of work, a prison. We can and will, as a society, argue about what the laws should be, about what our conscience should let us do.

Complete Article HERE!

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Death now has no dominion – but it should; it is part of life

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As our longevity increases, we are starting to see death as something to be controlled and rebuffed, not as a collective sorrow to be shared

Where death was traditionally presented as a release from the mortal coil, now it is the enemy, something to be challenged and delayed.
Where death was traditionally presented as a release from the mortal coil, now it is the enemy, something to be challenged and delayed.

Winter is a time for my suit, not for warmth but for attendance at funerals; it’s the season for dying. I walked back from one such event with Nicole, who has a progressive take on life.

“It’s all such a sham,” she exclaimed. While I agreed, I thought it wise to ask her what she meant, in case we were not in accord.

“I mean, who believes all that guff now, heaven, happy in God’s care and looking down with love hokum?”

That evening my grandson Daniel dropped by and remarked on the suit.

“Another one bitten the dust?”

Like so many of his age, he’s currently out of work, but I doubt the diplomatic service will be headhunting him. It was a surprise, therefore, when he engaged me in a serious discussion about death, what I thought, what he felt, how his friends saw it. As we talked on, it became clear that he was sensitive to the imminence of death in a way which I had never been at his age. Then I remembered that one of his old school friends had been wasted in Afghanistan.

Yet still it made no sense. After all, 100 years earlier everyone in this country would have known a casualty, and not just of war, but of birth, of infancy, of untreatable conditions aggravated by lack of hygiene and unsafe work; death was a regular visitor.

So, in our world of longevity, where over-65s are living longer than ever before, my grandson’s angst intrigued me. It was not untypical; I’d come across it in many young people. One explanation, as Nicole had implied, was the decline in religion. We have lost our sense of the numinous, of a dimension beyond. Where death was traditionally presented as the gateway to the hereafter, it is now simply the terminus of the here and now. The faith thesis depended for its efficacy on a less than celebratory approach to life. Death served to release us from what was presented as an uncomfortable, almost irrelevant mortal coil. And we prepared for it; to have paid for one’s funeral materially was the mark of a civilised person. Death was an integral part of life.

Today the mortal coil is all we believe we’ve got and its experience has become substantially more comfortable and convenient – and precious. There is now so much more to lose, to look forward to, to miss out on. Death has become an insult against lives that are so immediate, so now, so instant. It has become a challenge, as human knowledge of our biological flaws increases and the technology for repairing them improves. Indeed, it has acquired the status of a disease, one that perhaps we will never eradicate but that can be indefinitely delayed; or managed, its indignity evaded by an offshore arrangement in Switzerland. Either way, it’s something to be controlled. This transformation is in part due to social media and its capacity to inform us about every tragedy within nanoseconds of its event, making us pieces of the global village, where any man’s or woman’s death diminishes us.

Except, uncomfortably, we do not feel diminished by any death – we are increasingly selective. Daniel’s angst is a phenomenon of the rich world. The sad fact is that we in the developed world are all less and less attached to the world, because we are preoccupied with our personal archipelagos. The wars and disease, the deprivation and disasters, do not encroach on us, particularly the young. We are insulated against the death of strangers by a selfie culture that views the world through the lens of its own ego.

The developed world is starting to see death as a personal affront to be rebuffed rather than a collective sorrow to be shared. I’m not sure that’s progress.

Complete Article HERE!

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In Palliative Care, Comfort Is the Top Priority

By Paula Span

Palliative Care

Last year, when an oncologist advised that Betty Chin might benefit frompalliative care, her son Kevin balked.

Mrs. Chin, a retired nurse’s aide who lives in Manhattan’s Chinatown, was undergoing treatment for a recurrence of colorectal cancer. Her family understood that radiation and chemotherapy wouldn’t cure her, but they hoped doctors could keep the cancer at bay, perhaps shrinking her tumor enough to allow surgery or simply buying her more time.

Mrs. Chin, 84, was in pain, fatigued and depressed. The radiation had led to diarrhea, and she needed a urinary catheter; her chemotherapy drugs caused nausea, vomiting and appetite loss.

Palliative care, which focuses on relieving the discomfort and distress of serious illness, might have helped. But Mr. Chin, 50, his mother’s primary caregiver, initially resisted the suggestion.

“The word ‘palliative,’ I thought of it as synonymous with hospice,” he said, echoing a common misperception. “I didn’t want to face that possibility. I didn’t think it was time yet.”

In the ensuing months, however, two more physicians recommended palliative care, so the Chins agreed to see the team at Mount Sinai Hospital.

They have become converts. “It was quite a relief,” Mr. Chin said. “Our doctor listened to everything: the pain, the catheter, the vomiting, the tiredness. You can’t bring up issues like this with an oncologist.”

Multiple prescriptions have made his mother more comfortable. A social worker helps the family grapple with home care schedules and insurance. Mr. Chin, who frequently translates for his Cantonese-speaking mother, can call nurses with questions at any hour.

Challenges remain — Mrs. Chin still isn’t eating much — but her son now wishes the family had agreed to palliative care earlier.

Perhaps it’s not surprising that many families know little about palliative care; it only became an approved medical specialty in 2007. It has grown rapidly in hospitals: More than 70 percent now offer palliative care services, including 90 percent of those with more than 300 beds.

But most ailing patients aren’t in hospitals, and don’t want to be. Outpatient services like Mount Sinai’s have been slower to take hold. A few hundred exist around the country, estimates Dr. Diane Meier, who directs the Center to Advance Palliative Care, which advocates better access to these services.

Dr. Meier said she expects that number to climb as the Affordable Care Act and Medicare continue to shift health care payments away from the fee-for-service model.

Because most people with serious illnesses are older, seniors and caregivers should understand that palliative care offers more care as needed, not less. Unlike hospice, patients can use it at any point in an illness — many will “graduate” as they recover — without forgoing curative treatment.

Like hospice, however, palliative care focuses on quality of life, providing emotional and spiritual support for patients and families, along with drugs and other remedies to ease symptoms. Its practitioners help patients explore the complex medical decisions they often face, then document their preferences.

It pays off for patients and families. In 2010, a randomized trial of 151 patients with metastatic lung cancer at Massachusetts General Hospital found that those who received early palliative care scored significantly higher on quality of life measures than those receiving standard care, and were less likely to suffer from depression.

They were also less likely to get aggressive end-of-life treatment like chemotherapy in their final weeks. Yet they survived several months longer.

Other studies have found similar benefits. Compared with control groups, palliative care patients get greater relief from the breathlessness associated with lung diseases; they’re less likely to spend time in intensive care units; they report greater satisfaction with care and higher spiritual well-being.

And they do better if they seek palliative care early. A new study conducted at the cancer center at the University of California, San Francisco, found that of 922 patients who had died, most in their 60s and 70s, those who had received palliative care for 90 days or more were less likely to have late-life hospitalizations and to visit intensive care units or emergency rooms than those who sought care later.

The reduced hospital use also saved thousands of dollars per patient, a bonus other studies have documented.

“If people aren’t in excruciating pain at 3 a.m., they don’t call 911 and go to the emergency room,” Dr. Meier pointed out.

Yet palliative care remains underused. Even at the well-established U.C.S.F. cancer center, which began offering the service in 2005, only a third of patients in the study had received a palliative care referral.

“We hear this all the time: ‘They’re not ready for palliative care,’ as if it’s a stage people have to accept, as opposed to something that should be a routine part of care,” said Dr. Eric Widera, who practices the specialty at the university.

In fact, the cancer center at U.C.S.F. adopted a euphemistic name for its palliative team: “the symptom management service.”

“We deliberately called it that because of how much ignorance or confusion or even bias there was against the term ‘palliative care,’” said Dr. Michael Rabow, director of the service and senior author of the new study.

Although 40 percent of their palliative care patients can expect to be cured, “there clearly still are both patients and oncologists who have an inappropriate association in their minds,” he said. “They still associate palliative care with giving up.”

To the contrary, palliative care can help patients live fully, regardless of their prognoses. Consider Herman Storey, a 71-year-old San Franciscan, an Air Force veteran, a retired retail buyer and manager, a patient who feels quite well despite a diagnosis of inoperable liver cancer.

His oncologist at the San Francisco V.A. Medical Center — the Department of Veterans Affairs has been a leader in this specialty — referred him to the palliative care service last fall when Mr. Storey said he didn’t intend to pursue chemotherapy.

“They wanted me to reconsider,” Mr. Storey said, “but I don’t want to get sick and tired of being sick and tired.” Chemotherapy for a previous bout of cancer had helped him survive for three years; it had also made him very ill.

Dr. Barbara Drye, medical director of outpatient palliative care at the cancer center, walked Mr. Storey through his options. The suggested chemo might extend his life by several months, she explained. It would also take a toll.

“It can cause not only nausea and diarrhea, but it affects your taste,” she said. “Food tastes like cardboard. Fatigue can markedly decrease the amount of activity someone can do.”

This time, Mr. Storey decided against treatment. A skilled cook, proud of the duck confit dinner he served guests at Christmas, he wants to continue to enjoy cooking and dining out with friends.

Besides, he has plans: In May, he expects to visit Paris for the 11th time, to mark his 72nd birthday.

Dr. Drye, who helped Mr. Storey complete his advance directives, will arrange for home or inpatient hospice care when he needs it. Until then, she sees him monthly.

She has gently suggested that he take his trip a bit earlier; he has declined. “I feel great,” he told me.

So this is also life with palliative care: Mr. Storey and a companion have rented an apartment near the Place des Vosges. A Parisian friend will throw a dinner party for him, as usual. And he’ll eat at that little Alsatian restaurant where they always remember him.

Complete Article HERE!

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The Half Life of Love

Our first real date was on Valentine’s Day 10 years ago. Many times in the five years since my partner died, I’ve flashed back to that day when we became, officially, more than just friends.

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Valentines

We courted for months before we touched.

But before we were courting, there were eyes flicked up, cast down, not wanting the other to see. Stealing glances. I traced the scar on his neck from across the coffee shop. He noted the books I was reading, watched how I fixed my tea. Weeks passed by like this.

Once officially introduced, we moved into a slow dance of flirting, not flirting. We waited for each other, reserving tables in the early morning rush. We spoke questions meant to learn about each other, without tipping our hands at more.

In those first few months, he would leave his paper for me to find, saving half the crossword for me, wishing me a good day in the margins. I left him messages of random words underlined to make a poem or a song. We read books together, in our coffee shop, compared notes on cadence and rhyme.

On the night I finagled my way into his car, bought a ride home by simply jumping in when I saw him at a stoplight, he told me we could go no further. There were others involved. There were commitments he’d made, to himself, to sever what had come before, without muddying the waters with something new.

We drew lines down the center of our table — his side, my side — never mind our feet touching underneath. He had rules: no being alone together in dimly lit places, no dates after dark. Lunch, but not dinner. He said it was safer that way.

I complied because I’m good at this, because I can love without touching. I cannot feign non-affection, but I can love without needing to act. We remained reserved. There were walks around the block, trips to the art museum in broad daylight. Longer walks. More tea.

February 14th began like any other day: my notebooks scattered around me, pot of tea, open book. He roared into our coffee shop, flustered, nervous, dropping his keys. “So, so I have this meat, uh, I defrosted this meat for some other dinner, but it got cancelled, so I was wondering, I was wondering, would you, um, would you like to have dinner tonight?”

My calm deflected his nervousness. “Sure,” I said, an eyebrow raised. I did not remind him of his rules.

Once I gave my assent, he stammered, “Okay, I have to start cooking right now then!” and ran out without his keys.

When I arrived at his house, Joss Stone was playing on the stereo. There were candles lit. He had a towel thrown over his shoulder; it was a look I would one day associate with home.

He cooked. We ate. Played Scrabble. When it was time to go, we stood in the doorway, close but not touching. The threshold, literally, figuratively, not touching, not kissing, just space, held between us. He walked out into the cold snowy night to start my car for me, my old green Saturn that was on its last legs by then, stalling out in first gear, no hills allowed anymore.

Just five days later, the scene repeated again: Joss Stone. Scrabble. Dinner. No kissing. No touching. Just breath, close by, held. I drove off into another night of clear stars, leaving him behind.

He called the next day, inviting me to a movie. An early afternoon matinee, breaking his rule against being alone in dim places. We bought popcorn and drinks, settled into two seats, middle row, on the aisle.

And there, in the dark, he reached over the armrest and picked up my hand. He held it in his lap, without speaking, his eyes never leaving the screen.

I missed the first half hour of that movie, my mind raced with the touch of his hand, stunned by its weight, by its warmth. Our joined hands in his lap, unmoving.

When the movie ended, we were still holding hands. We didn’t speak. We drove back to my house. We sat on my couch.

It’s funny — in all the times I have remembered this, I do not remember our first kiss. I remember instead the feel of his hand in the darkness. I remember his voice, once we spoke. I remember lying in his arms, a few short hours later, having hiked up the bottom of my shirt so our bellies could touch.

Lying there, I told him: “If you change your mind again, I’ll respect it, but it won’t be without damage. You can’t just toy with my heart.”

“I won’t change my mind again,” he says, his eyes level with mine, his voice soft and clear. “I can no longer deny my feelings for you. I already know I love you.”

I replay this in my mind.

It is 10 years now from that night.

He has been dead for five.

I write that, and it doesn’t seem real. I flash back to other times, when he was here, when we were new, holding hands in the darkness.

I flash back to those early days, the tension, the sweetness, his rules. The cold starry nights, sailing past Valentine’s Day, as we round the corner to touch.

I return to that night, the dark theater, the feel of his hand. I hit pause. I pull our joined hands to my chest, raise them to my lips, kiss his knuckles. Knowing what I know, knowing what is to come in just five short years I whisper: “I already know I love you.”

Ten years.

And I would do it again. I would do it all again.

I would do this all again.

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Let’s Talk About Death — Specificially Yours

By Steve Gordon

talk about death

In his only novel, The Notebooks of Malte Laurids Brigge, the poet and philosopher Rainer Maria Rilke had his protagonist expound on an old wisdom, one in which “people knew (or perhaps had an intuition) that they bore their death within them like the stone within a fruit. . . . It was something people quite simply had, and its possession conferred a peculiar dignity, and a tranquil pride.”

The stone within a fruit. It’s an intriguing way to think about mortality, a prosaic image to bring home that our mortal end is always a part of us, always there inside us, as surely as our lifeblood and, perhaps, our soul.

It’s an image that has come to mind often in the last few months as I’ve been talking to people about the new book Let’s Talk about Death: Asking the Questions that Profoundly Change the Way We Live and Die, which I co-wrote with Dartmouth College professor Irene Kacandes. The book was released in November, and Irene and I have spoken to several groups and many, many individuals about our experiences in writing it, and about their own experiences with death and dying. The latter is just what we had hoped would happen — that people would want to open up about a topic that tends to stay in the shadows. We’d also love for that opening up to spread to others around them in the form of conversations that might, in maybe unexpected ways, change their lives.

We can hope that our book will have that effect on as many people as possible. In the meantime, I have noticed a few threads of thought twining through the conversations and discussions we have had. Here are a couple.

When Irene and I realized that the writing exchange we had begun as a way to explore and share our thoughts and beliefs about mortality might end up becoming a book, we were particularly enthusiastic about bringing to the fore the subject of death. It’s almost cliché these days to note that our culture is youth obsessed and death averse. As a society, we’d just rather not talk about it. I still recognize that to be true in at least a superficial way, but there is another truth that sits comfortably alongside it: Despite the avoidance in our culture as a whole, there still are a great many people who are very interested in learning and talking about death and dying, but who are inhibited for any number of reasons. They’re uncomfortable bringing it up in a group. They want to talk about it but their (spouse, child, partner, friends) won’t go there. It’s scary. They don’t know where, or with whom, to start. And so on.

But the interest is undeniable, so in discussions about the book there has been no shortage of people ready to engage on the topic of that stone that rests inside them. And when people start to talk about death, they mostly have one thing in common: They tell stories. Stories about when a parent or spouse died. Stories about when a child died, or a friend. Stories about their own experiences with a life-threatening illness. There isn’t necessarily a point to each story beyond the telling itself. These stories are important, though. They are how we share what we know and believe. They’re how we learn what we ourselves believe, and maybe what we want in our lives and our eventual deaths. They’re honest and heartfelt stories, with a need-to-be-told quality. They just need a place to be told. I now wonder if what we have in our culture isn’t really death aversion, at all, but a logjam of death conversations waiting to be released.

There is another commonality among the people interested in engaging with me about the book: age. When Irene and I spoke recently to a full house at the Norwich Bookstore, I saw only two people I assumed were under 45 years of age. Everyone else seemed at least in their 50s; most were a good bit older than that. I know that’s not surprising. It makes sense that people getting into their later years, as well as people of any age facing life-threatening or life-ending disease, would be the most likely to want to talk about death and dying. And, after all, that group in Norwich was an engaged and articulate bunch. Still, I keep hoping for a broader age range. My son is 38, and I think of him as being squarely in our target audience. I recently spent some time with a 28-year-old man with incurable cancer, and had some wonderful conversations with him about what he was facing. I thought at the time that any other 28-year-old could benefit from talking with that fellow, followed perhaps by some internal dialogue about mortality, and then by sharing those thoughts with people close to them.

Why bother? I do sometimes ask myself that question. When Irene and I wrote a column last fall for an NPR science and culture blog, one of the people posting a comment afterward said that when it came to death, he would just “play it by ear.” It might be a good plan. Millions of people undoubtedly have gone through life without spending a lot of time thinking about death, and have managed to successfully die when their time came. But there are potential problems with avoidance. It’ll work fine, I guess, if you get hit by a bus or if you have a heart attack and you’re dead before hitting the ground. But what if you have a stroke, and are left aware but incapacitated for a long time? What if you get cancer, and have a decline of months or years before you die? What if the people around you aren’t prepared for you to die, and will struggle to cope? And what if it’s not you, anyway? What if your husband or wife has that stroke, or that cancer, and you’re facing death, once removed? Time spent thinking about mortality now, getting comfortable with it, accepting its inevitability, will certainly change your experience with those challenges, and perhaps change the way you look at the life you’ll live between now and then.

I don’t suggest that you become obsessed with death. Spend some time thinking about it. Engage family and friends in conversation to hear their ideas and beliefs. Use those conversations to refine, or at least better understand, what you yourself want and believe. Resolve to do this every now and then to note any changes in what you want and believe about death. And otherwise let it go. It won’t go far. It’ll be there when you need it.

Complete Article HERE!