Wednesday, September 30, 2015

A nurse with fatal breast cancer says end-of-life discussions saved her life - The Washington Post

Amy Berman writes: "I am a nurse, a nationally recognized expert in care of the aged and senior program officer at the John A. Hartford Foundation, which is devoted to improving the care of older people in the United States. Yet my perspective is not simply professional. For, you see, I live with Stage 4 (end-stage) inflammatory breast cancer. And while this metastatic cancer will one day kill me, the advanced-care planning conversations I have had with my health-care team have been lifesaving since my diagnosis.

I use the word “lifesaving” advisedly because that is what these conversations are truly about. When done well, they can shape care in ways that give people with serious illness a chance at getting the best life possible. This kind of conversation initially helped my care team understand what was important to me and helped clarify my goals of care. Faced with an incurable disease and a prognosis where only 11 to 20 percent survive to five years and there is no statistic for 10-year survival because it so rarely happens, I came to understand that my priority was to seek a “Niagara Falls trajectory” — to feel as well as possible for as long as possible, until I quickly go over the precipice. Quality of life is more important to me than quantity of days, if they are miserable days....

All people deserve care that meets their emotional and financial needs. Unfortunately, health-care providers, including those paid by Medicare, have not had the incentives, time or training to sit down with people facing a life-threatening illness and discuss what’s important to us as our health deteriorates, things such as where we want to die (I want to be at home), what’s most important (control my pain) and what treatments we want to avoid (I don’t want to be on life support and don’t want to be resuscitated). As a result, our system provides a lot of expensive crisis care as people reach the end of life — care that people, if asked and engaged, might say they never wanted."

A nurse with fatal breast cancer says end-of-life discussions saved her life - The Washington Post

Monday, September 28, 2015

Trauma Workers Find Solace In A Pause That Honors Life After A Death : Shots - Health News : NPR

NPR: ""We had worked on this patient for hours, and the chaplain came in and kind of stopped everyone from leaving the room," Bartels recalls.

"She said, 'I'm just going to pray over this patient and then you all can leave,' " he says. "And I watched it and I felt ­— it was the act of stopping people that really inspired me."

Jonathan Bartels, an emergency care nurse at the University of Virginia Medical Center, recognized early the value of "The Pause." The practice is now part of the curriculum at the university's nursing school, and has begun to spread to other hospitals across the U.S.

While the prayer wasn't totally comfortable to Bartels, because he, like many at the hospital, is from a different religious tradition than the chaplain, the act of pausing to pay silent respect and acknowledge the loss felt right.

"So the next time we worked on another person who didn't make it, I decided to be bold and stop people from leaving," he says. "I just said, 'Can we stop just for a moment, to recognize this person in the bed? You know, this person before they came in here was alive — they were interacting with family, they were loved by others, they had a life.' "

The team did it. Standing together silently, they stopped — just for a minute.

"When it was done, I said, 'Thank you all, and thank you for the efforts that we did to try and save them.' People walked out of the room, and they thanked me," Bartels says. "And they thought it was really awesome."

The idea of taking a moment of silence together after a death began to spread to other teams throughout the hospital — other emergency workers picked it up, as did an anesthesiologist and a surgeon. What's come to be called The Pause is now being taught as part of the curriculum at the university's nursing school. Emergency medical technician Jack Berner says it helps him handle the toughest cases.


Trauma Workers Find Solace In A Pause That Honors Life After A Death : Shots - Health News 

A Nurse Reflects On The Privilege Of Caring For Dying Patients : Shots - Health News : NPR

"Palliative care nurse Theresa Brown is healthy, and so are her loved ones, and yet, she feels keenly connected to death. "I have a deep awareness after working in oncology that fortunes can change on a dime," she tells Fresh Air's Terry Gross. "Enjoy the good when you have it, because that really is a blessing."

Brown is the author of The Shift, which follows four patients during the course of a 12-hour shift in a hospital cancer ward. A former oncology nurse, Brown now provides patients with in-home, end-of-life care.

Talking — and listening — are both important parts of her job as a palliative care nurse. This is especially true on the night shift. "Night and waking up in the night can bring a clarity," she says. "It can be a clarity of being able to face your fears, it can be a clarity of being overwhelmed by your fears, and either way, I feel like it's really a privilege to be there for people."

Sometimes Brown finds herself bridging the gap between patients who know they are dying and family members who are still expecting a cure. "There can be a lot of secrets kept and silences. ... One thing that palliative care can be really good at is trying to sit with families and have those conversations," she says."

A Nurse Reflects On The Privilege Of Caring For Dying Patients : Shots - Health News : NPR

Grief: Advice from an Old Man

A person in pain turned to reddit for help with her grief. One reply was from a self-described "old man," whose words were so moving and comforting they have been shared thousands of times.
Alright, here goes. I’m old. What that means is that I’ve survived (so far) and a lot of people I’ve known and loved did not. I’ve lost friends, best friends, acquaintances, co-workers, grandparents, mom, relatives, teachers, mentors, students, neighbors, and a host of other folks. I have no children, and I can’t imagine the pain it must be to lose a child. But here’s my two cents. I wish I could say you get used to people dying. I never did. I don’t want to. It tears a hole through me whenever somebody I love dies, no matter the circumstances. But I don’t want it to ‘not matter.’ I don’t want it to be something that just passes. My scars are a testament to the love and the relationship that I had for and with that person. And if the scar is deep, so was the love. So be it. Scars are a testament to life. Scars are a testament that I can love deeply and live deeply and be cut, or even gouged, and that I can heal and continue to live and continue to love. And the scar tissue is stronger than the original flesh ever was. Scars are a testament to life. Scars are only ugly to people who can’t see.” As for grief, you’ll find it comes in waves. When the ship is first wrecked, you’re drowning, with wreckage all around you. Everything floating around you reminds you of the beauty and the magnificence of the ship that was, and is no more. And all you can do is float. You find some piece of the wreckage and you hang on for a while. Maybe it’s some physical thing. Maybe it’s a happy memory or a photograph. Maybe it’s a person who is also floating. For a while, all you can do is float. Stay alive. In the beginning, the waves are 100 feet tall and crash over you without mercy. They come 10 seconds apart and don’t even give you time to catch your breath. All you can do is hang on and float. After a while, maybe weeks, maybe months, you’ll find the waves are still 100 feet tall, but they come further apart. When they come, they still crash all over you and wipe you out. But in between, you can breathe, you can function. You never know what’s going to trigger the grief. It might be a song, a picture, a street intersection, the smell of a cup of coffee. It can be just about anything…and the wave comes crashing. But in between waves, there is life.” Somewhere down the line, and it’s different for everybody, you find that the waves are only 80 feet tall. Or 50 feet tall. And while they still come, they come further apart. You can see them coming. An anniversary, a birthday, or Christmas, or landing at O’Hare. You can see it coming, for the most part, and prepare yourself. And when it washes over you, you know that somehow you will, again, come out the other side. Soaking wet, sputtering, still hanging on to some tiny piece of the wreckage, but you’ll come out. Take it from an old guy. The waves never stop coming, and somehow you don’t really want them to. But you learn that you’ll survive them. And other waves will come. And you’ll survive them too. If you’re lucky, you’ll have lots of scars from lots of loves. And lots of shipwrecks.

Saturday, September 26, 2015

What I've learned about grief in 9 years since my son died - Chicago Tribune

"The truth is, we didn’t know how short his time would be, and we can’t change the past. So I’ve had to learn to tell myself that we did the best that we knew how to do at the time, and that has to be enough.

I learned that life can be fun again, and I can laugh and enjoy it. At the same time, grief is like a giant block of granite: The sharp edges may have softened with the passing years, but it remains as hard and as heavy as it was the day it first crashed into my life.

But I’ve discovered that sorrow has its own beauty. It brings depth and context to all the blessings in my life. It’s the salt that enhances the sweetness.

I learned how incredibly strong my wife is, and how much I need her resilience and grace.

I’m learning how losing a child affects my ability to let my other kids grow up. It’s hard for me to let them ride around the block on their bikes. I have to fight against the tendency to hold them close, as if I can protect them from all harm.

I’ve learned that I have to talk about John when I need or want to talk about him, and that it’s good for me to cry.

When he died, we were alternately mourning his loss and holding out hope for his brother, whose grip on life was tenuous at best. He was in the hospital for three months before he came home, and now I know how much I shoved the grieving process aside during that time.

It sort of metastasized, and I had to learn that alcohol might help you ask questions, might help you give voice to your pain, but it doesn’t take it away or help you find any answers. The only thing it adds is regret.

So I’ve found other ways to remember. I have something that I wear every day to remind me of him. I thought about getting a tattoo but decided against it — at least for now. I wrote a song recently.

I’m not saying it’s a great song, but it’s my song and it helps me.

In the past, I’ve been very private with my grief. For some reason, this year feels different, which may be why I’m writing this. And that’s another thing I’ve come to understand — the way you approach grief, and the way it approaches you, will likely change over time.

My eyes have also been opened to how easy my life was before this happened, and how easy it still is compared to most of humanity. Losing my son didn’t put me in a small club of people who’ve lost a child. Instead, it kicked me out of the very small club of people who have never experienced great loss.

I’d like to think that all of this has made me a kinder, more compassionate person. A better husband to my wife. A more affectionate father. A man less eager to jump in with all the answers to everything.

Maybe that’s the silver lining here. Maybe that’s John’s legacy.

If so, he got a lot done in a very short time."

Matt Walberg

What I've learned about grief in 9 years since my son died - Chicago Tribune

The day my mother died — Life Hack: Your Story, Experience, etc — Medium

From Elizabeth Tobey:

"Over the past seven years, I have changed significantly as a person and all of those changes stem from the death of my mother. Some of these changes are unwelcome additions in my life: people don’t call me late at night or early in the morning because they know it will cause white-eyed panic. But the others, the ones I’ve gone into purposefully, have made me a much better and stronger person. And while I would much rather have had my mother these past seven years and would trade all these growth moments, there’s still value in what I’ve learned that can be shared to help others....Never regret. Know who you are with all the good and the bad that comes with that knowledge. Surround yourself with things that make your life better, and never settle for anything less than that."

The day my mother died — Life Hack: Your Story, Experience, etc — Medium

Sensuous Aesthetic Gratification: Making Final Moments Comfortable and Meaningful

 "With some real attention to the design of palliative care and hospitals, we can totally transform what the process of dying becomes for people. Instead of a gruesome, clinical, scary process, it can be, by design, a concentrated crescendo of all the things it means to be living, packed into those final months and days.

Think about it: At a time when a person is struggling with the biggest hurdle of their lives — leaving their lives behind and not existing corporeally anymore — they are often completely cut off from the humanity and experience of life they so desperately are wishing to exercise while they fleetingly still can.

Like feeling their dog lying at the foot of their bed with a cold nose against them. The feelings and quick snapshots in time that, strung together, make up a life.

BJ calls this "sensuous aesthetic gratification," putting words to those moments where we're tactilely rewarded just for being alive.

He makes a moving case for why the entire process of dying should be comprised of more moments of pure living.

A horrible accident when he was goofing off made him think deeply about what people need when dying.

Friday, September 25, 2015

Sam Smith on Sadness

"I wear my sadness. It shows I have lived, I have loved and I have survived."

Sam Smith

Living with dying: Finding Care and Compassion at the End of Life: Margaret McCartney

"Our aging population is a modern success story, and success brings problems. The new demographic is for people to die in old age, or extreme old age, but with multiple illnesses and diagnoses, and on a cocktail of medication. But where is the balance of medicine between curing and caring? Are we neglecting the wellbeing of the dying person in our desire to fight death at all costs? Margaret McCartney, author of The Patient Paradox, examines the way we care for people at the end of life. She finds that medicine can harm as well as help, that loneliness and social isolation are endemic, and a lack of hands-on, human care means that people are not able to die where they would choose. She argues for a more compassionate and humane approach to the care of the dying which puts the needs of the individual first."

Living with dying: Finding Care and Compassion at the End of Life

Helping Dispel 5 Common Myths About Grief by Alan D. Wolfelt, Ph.D.

Alan D. Wolfelt's insightful essay about the myths of grief is important reading for those experiencing loss and those who want to comfort them.  He makes it clear that grief is not something we should try to "get over" or imagine to be predictable or orderly.

I particularly like this:
Most people tend to use the words grief and mourning interchangeably. However, there is an important distinction between them. We have learned that people move toward healing not by just grieving, but through mourning. Simply stated, grief is the internal thoughts and feelings we experience when someone we love dies. Mourning, on the other hand, is taking the internal experience of grief and expressing it outside ourselves....attempting to mask or move away from grief results in internal anxiety and confusion. With little, if any, social recognition of the normal pain of grief, people begin to think their thoughts and feelings are abnormal. "I think I'm going crazy," they often tell me. They're not crazy, just grieving. And in order to heal they must move toward their grief through continued mourning, not away from it through repression and denial.

Non-Funeral Ways to Mourn

"Over the past year, I’ve experienced several losses that, at the request of the deceased, did not include funerals. Grief rituals are central to my mourning process, but there’s no negotiating with the dead. In the absence of the most standard of ceremonies, how do you give expression to your grief while respecting someone’s final wish for “no funeral, please?” Through personal experience, and conversations with friends and readers who’ve faced the same scenario, here are seven ways to do just that."

Recommendations include donation to a favorite cause of the one who has died, learning one of their skills or trying their hobbies, and making a pilgrimage to a place that meant a lot to him or her.

When Your Loved One’s Last Wish Was ‘No Funeral’ - Modern Loss

'Getting old ain't for sissies': Cartoonist Jack Ohman draws his dad's final years

"When editorial cartoonist Jack Ohman sat down to illustrate his father’s final years, he did not want to sugar-coat his own experiences providing four years of long term care. Otherwise, the story would not have been worth telling, he explained.

'If you try to be intellectually honest in your work, when you bring up things like people thinking about suicide and what kind of diapers you’re buying for your dad, I think that’s a realistic portrayal of what life is like,' said Ohman, who works for the Sacramento Bee newspaper."

'Getting old ain't for sissies': Cartoonist Jack Ohman draws his dad's final years

Time to Get it Right at the End of Life | Medpage Today

"How can physicians better navigate the alphabet soup of end-of-life care forms?
That was the question on the mind of Ferdinando Mirarchi, DO, of UPMC Hamot in Eerie, Pa., when he approached Michael Barton, MD, of Heritage Valley Health System in Beaver, Pa., an emergency department physician known for his video parodies.
Barton's answer: set it to music by Green Day. So was born "Good Practice," a parody of the alternative rock band's blockbuster "Good Riddance.""

Time to Get it Right at the End of Life | Medpage Today

Ask a Mortician, Episode One

Thursday, September 24, 2015

4 Secrets To Transferring Assets Between Generations - Caregiver Finances

"Money and families bring up a lot of tension.  I’ve heard several family coordinators of care talk about lost relationships, contentious arguments and lost financial resources.

However it’s important to understand what options you do have.  You won’t have control over everything but knowing basic strategies can help.  It will enable you to make the appropriate suggestion at the right time."

Good advice from John Patrick Adams, including gifts, trusts, and tuition payments.

4 Secrets To Transferring Assets Between Generations - Caregiver Finances

A Message of Hope for the Bereaved from Ligia M. Houben

A Message of Hope for the Bereaved from Ligia M. Houben from Ligia Houben on Vimeo.

Nothing Gold Can Stay by Robert Frost

Nothing Gold Can Stay by Robert Frost Nature's first green is gold, Her hardest hue to hold. Her early leaf's a flower; But only so an hour. Then leaf subsides to leaf. So Eden sank to grief, So dawn goes down to day. Nothing gold can stay.

Tuesday, September 22, 2015

When a doctor’s father rejected dialysis, he didn’t expect what happened - The Washington Post

 "To Dad, hemodialysis represented an existential threat to his dignity, independence and quality of life as he defined it. In this context, his decision against dialysis was understandable. But because of a system-wide lack of information, the last leg of his life’s journey was unexpectedly turbulent and stressful for him and his family.

The first step toward ensuring a better end-of-life experience in patients with end-stage kidney disease who decide against dialysis is to recognize that research in assessing the symptom burden and improving the quality of life of such patients is sorely needed. In the meantime, patients and their caregivers should be fully informed of the myriad symptoms that may ensue as uremia worsens and they should be counseled that a “peaceful death” may never materialize.

For these patients and their families, preparing for the expected should not be an elusive goal."

When a doctor’s father rejected dialysis, he didn’t expect what happened

Sunday, September 20, 2015

Bread and Music by Conrad Aiken

Bread and Music by Conrad Aiken Music I heard with you was more than music, And bread I broke with you was more than bread; Now that I am without you, all is desolate; All that was once so beautiful is dead. Your hands once touched this table and this silver, And I have seen your fingers hold this glass. These things do not remember you, belov├Ęd, And yet your touch upon them will not pass. For it was in my heart you moved among them, And blessed them with your hands and with your eyes; And in my heart they will remember always,— They knew you once, O beautiful and wise.

Saturday, September 19, 2015

Helping Children Cope with Death and Dying

 "As children encounter illness, loss, and grief, they seek to understand the events and make sense of what they’re feeling and experiencing. Whether adults realize it or not, children are aware of death. Most have seen a bird, insect, or animal lying on the ground. They may have seen death on television or in movie, and they hear about it in fairy tales.

As children encounter illness, loss, and grief, they seek to understand the events and make sense of what they’re feeling and experiencing. Whether adults realize it or not, children are aware of death. Most have seen a bird, insect, or animal lying on the ground. They may have seen death on television or in a movie, and they hear about it in fairy tales.
While they may not yet have an adult’s sophistication as they seek answers, they can turn to their beliefs, faith, rituals, and practices to help them gain understanding. This process makes children “spiritual pioneers,” a phrase first used by Dr. Robert Coles to describe children who are trying to make sense of the world without the cognitive-spiritual maps that most adults possess.

Children have a complex development process influenced by many factors, including religious and spiritual organizations, mainstream media, books, magazines, celebrities, public figures, and other cultural icons. Unlike adults, children don’t make clear distinctions between spirituality and religion. Even very young children may have clear, though often fluid, ideas about faith, prayer, and divine experiences. Religious and spiritual experiences can exert a powerful influence in their lives, affecting their moral development, their idea of social relationships, their way of perceiving themselves and their behavior, and their way of integrating daily occurrences into a broader spiritual view."

Helping Children Cope with Death and Dying

Friday, September 18, 2015

What I Wish More People Understood About Losing A Child -

"Grief is the pendulum swing of love. The stronger and deeper the love the more grief will be created on the other side. Consider it a sacred opportunity to stand shoulder to shoulder with someone who have endured one of life's most frightening events. Rise up with us."

What I Wish More People Understood About Losing A Child -

Dickens on the Loss of a Child

"And can it be that in a world so full and busy, the loss of one weak creature makes a void in any heart, so wide and deep that nothing but the width and depth of eternity can fill it up!"

10 Things Not To Say to a Mom Of a Chronically Ill Child

"If I could, I would choose ignorance and health over experiential wisdom, unfortunately, in his life and his death, I've learned big lessons about how to support other parents of chronically ill children, what to say, and even more so, what not to say."

People mean to be kind and comforting and do not realize how painful their attempts to be reassuring can be.  Instead of "don't worry," "have faith," "you're so strong," just, "can I get you anything?" or sit quietly and let them talk.

10 Things Not To Say to a Mom Of a Chronically Ill Child

The Trouble With Dying (Assisted Suicide Documentary, 2013)

Feeling Empty

Thursday, September 17, 2015

Grieving the Loss of a Child - Personal Essay

"When we lose our children, we don't just lose them at the stage they were when they passed. We lose them at every stage we missed, and our hearts will forever ache with that knowledge. There's a whole crock of crap that says grief follows a method. It stays neatly in lines, clean, tame, strategic. When a child dies before a parent, there is nothing normal, neat clean, or tame about that.

For the rest of my life, I'll be missing the should-haves. His little years. His growing years. The moments he should be making me rip my hair out, then the sweet ones, like the day I take him to get his license. Or the day he tells me he is going to propose. Or the day that he becomes a father. I'll never get those days. Grief will never be methodical or neat.

And one thing I've learned from mothers much further along in this journey than me: grief doesn't end. Out of a broken, beating heart comes endless love as it ebbs and flows through the constant cycles of grief. Sometimes gentle, sometimes heavy. The reminders are always there. The love is always there. After all, a mother never stops loving the child she carried."

Grieving the Loss of a Child - Personal Essay

Monday, September 14, 2015

Lessons from a 16-year-old’s ‘on fleek’ life — and her extraordinary death - The Washington Post

"What can anyone learn from the cruelty of this kind of rapacious, random and merciless cancer?

Abby’s own way of living. That’s what there is to learn here.

She was so utterly herself that she was infectious. She was loud, hungry, funny and in­cred­ibly brave. And because every person — her teachers, her doctors, her friends, her neighbors — had the same description, you also know that she was real.

The swim team members who spoke at her service didn’t say she was a naturally gifted, effortlessly winning swimmer. Because she wasn’t.

But she was dogged in her dedication. She got up at 4 a.m. to practice, then went to school, then got back in the pool to practice some more. She trained and trained, willing and sculpting her average, teen body into that of a champion swimmer.

The naturally gifted swimmers, those born with the broad, strong shoulders and paddle-sized hands, said they’d see her outpratice, outwork them. “She inspired us all,” one swimmer said.

And when she did break her own records, shatter her own walls, what did she do? She went around congratulating her teammates on their great times, not her own.

The way she lived her life in that pool was what people remember. Not her best times."

Lessons from a 16-year-old’s ‘on fleek’ life — and her extraordinary death - The Washington Post

Requiescat by Oscar Wilde

by Oscar Wilde

Tread lightly, she is near
Under the snow,
Speak gently, she can hear
The daisies grow.

All her bright golden hair
Tarnished with rust,
She that was young and fair
Fallen to dust.

Lily-like, white as snow,
She hardly knew
She was a woman, so
Sweetly she grew.

Coffin-board, heavy stone,
Lie on her breast,
I vex my heart alone,
She is at rest.

Peace, Peace, she cannot hear
Lyre or sonnet,
All my life's buried here,
Heap earth upon it.

Sunday, September 13, 2015

Helping a Suicide When the End Isn't Near - Room for Debate -

A debate on assisted death.  Professor Mark A.R. Kleiman says:

Of course, if the laws were changed, it would be necessary to separate out determined suicides from impulsive ones, to determine whether people asking to be killed were under pressure from health-care providers or family members to end lives that had become inconvenient to others, and to identify instances where better medical treatment or social care might eliminate the desire to die. People for whom the source of suffering is profound clinical depression pose the hardest cases, because the disease makes it difficult to determine what the subject “really wants.”

But the fact that a problem is hard isn’t a good enough reason to choose an easy, simple, wrong answer. Current laws create untold amounts of avoidable suffering. It’s time to change those laws.

Professor Ira Byock says:

Society should discourage suicide. Assisted suicide should be illegal. And if the populace insists on making assisted-suicide legal, physicians are the wrong professionals to do it.

Helping a Suicide When the End Isn't Near - Room for Debate -

'Rainy Days and Mondys.' from This American Life episode 532: 'Magic Words.'

In this episode of "This American Life," a couple moves in with the wife's mother, who has dementia, and find their talent as improv actors surprisingly useful.

Check out 'Act Two. Rainy Days and Mondys.' from This American Life episode 532: 'Magic Words.'

For more information: Validation therapy

Chain reaction | The Economist

"Alzheimer’s is recognised as a progressive neurological condition that mostly arises in the old. Now scientists have uncovered evidence that it may be possible to transmit Alzheimer’s through certain medical procedures."

Chain reaction | The Economist

Q&A: Atul Gawande on America’s urgent need to rethink end-of-life care | Dallas Morning News

"Number one, people have priorities in their lives besides just living longer and they matter a great deal. Number two is that the most reliable way to learn what those priorities are is to ask and we don’t ask. The result, that’s number three, is that when you don’t ask, the care and treatment that people get is often increasingly out of alignment with their priorities and what really matters most to them.

There were a few basic questions that came up:
What’s your understanding of where you are with your illness or your health at this time?
What are your fears and worries for the future?
What are your goals and priorities if your health worsens?
What are you willing to go through and what are you not willing to go through in seeking treatment for more possible time?
These are questions that doctors and other clinicians should become comfortable with and better at asking. I’m still learning how to do it well. I’ve asked them poorly and handled them poorly still, and I’m doing better and better. It takes skill and practice. But they’re also the kinds of conversations that families can have about what matters most and what makes life worth living. Those are incredibly important, powerful conversations."

Q&A: Atul Gawande on America’s urgent need to rethink end-of-life care | Dallas Morning News

'via Blog this'

Houston Hospice Is About Life

A Dying Woman Wants a Bagel

She is dying and can barely handle broth, but she asks for a bagel.  What does the family do?

My mom is rubbing my dad’s back, comforting him. We are a mess – sniffling and quaking with grief – and maybe that’s why when Grandma speaks, louder and more lucidly than in days, we don’t quite comprehend what she says. My dad bends toward her ear. “I love you too, Mom,” he says.

She repeats herself, but this time everyone has gathered to listen. For the first time, we all agree on exactly what she said, but we don’t quite believe it. “Did she just say she wants to eat?” I ask.

My brother says, “Grandma, are you hungry?”

There is a long pause during which all we hear is the pump of the oxygen machine.

“Bagel,” she finally says. “I need bagel with cream cheese.”

All Choked Up - The New York Times

Saturday, September 12, 2015

Thursday, September 10, 2015

Assisted Suicide - My Own Choice (Documentary - Full Length)

California Assembly approves right-to-die legislation - LA Times

"After nearly a quarter-century of efforts in California to afford terminally ill patients the right to end their lives with a doctor’s help, state lawmakers and the governor may be on the verge of granting the dying that authority.

The state Assembly on Wednesday passed a bill that would allow physicians to prescribe life-ending drugs to the terminally sick. The End of Life Option Act, which the Catholic Church and others oppose, awaits final approval by the Senate -- three months after that chamber passed a similar bill by a thin margin.

The fate of the legislation is likely to rest with Gov. Jerry Brown, a former Jesuit seminary student who has yet to articulate his position on the measure. Brown has expressed concern about it, based more on legislative procedure than his own beliefs.

Gun restrictions, cigarette taxes and more: California's Legislature is racing to pass bills
Modeled after an Oregon law enacted in 1997, California’s aid-in-dying proposal generated passionate, often deeply personal, debate among lawmakers that cut across party lines. Their discussions touched on questions of morality and mortality; trust in doctors and God’s grace; and the right of the dying to determine their own fate versus protection for the elderly and vulnerable.

Assemblywoman Susan Eggman (D-Stockton), a former hospice worker and the author of the legislation, accepted hugs from many of her colleagues after the 43-34 vote that ended a two-hour debate on Wednesday.

Interested in the stories shaping California? Sign up for the free Essential California newsletter >>

“This issue is of immense importance to all Californians,” said Eggman, who was an associate professor of social work at Sacramento State before being elected.

“I was confident that the full Assembly, reflective of and responsive to the people it represents, would do the right thing and move us closer to making it possible for terminally ill Californians to decide for themselves how to manage their last days,” she said.

Assemblyman Luis Alejo (D-Watsonville) said the bill would allow a peaceful and dignified end to suffering. Alejo choked with emotion as he talked about his father, a Vietnam veteran who is in pain from terminal bone cancer and wants to make his own decisions about the end of his life.

“Respect his choices,” Alejo said."

California Assembly approves right-to-die legislation - LA Times

Saturday, September 5, 2015

Kim Campbell on her Husband Glen, Alzheimer's and their Documentary, "I'll Be Me"

"I'll Be Me" is a beautiful documentary about an ugly disease. Glen Campbell, one of the most popular and successful musical performers of all time, was diagnosed with Alzheimer’s disease in 2011. As memories, words, and some basic concepts about daily life became fragile and then disappeared entirely, the music stayed with him. And so, his family took him on one last performing tour. The audiences were understanding, applauding even when he forgot the words or repeated a song he had just played. But backed up by his children, he played brilliantly and he loved the audience and they loved him back. The documentary is the story of that tour, of how Alzheimer’s affected Campbell and his family, and, with commentary by friends and fellow musicians, about how all of our lives are touched by the tragedy of dementia and cognitive impairment. Campbell’s wife Kim is in every way the heart of the film. Her loving spirit and devotion are deeply moving. It was a pleasure to speak to Kim about the film, which is "Glen Campbell…I’ll Be Me,"now available on DVD.

What has it been like for you to see how audiences respond to this film?

It’s been amazing. Everywhere we go and show the film people are really moved. They feel like we’re telling their story and they feel like it’s bringing Alzheimer’s out of the shadows into the light and helping remove the stigma of this disease.

What is it about music that seems to be able to reach people with dementia even when words are failing?

From what the doctors told us, music involves all the different regions of your brain at the same time and everything is stimulated at once. It just seem to promote the health of the brain, to keep everything working. They say that it may have kept Glen from progressing as quickly as he otherwise might have had he not been playing music. It’s a natural memory aid. People have used music to memorize things for years, for centuries. I think when you hear songs from your past on the radio or something you remember everything, you remember where you were when you heard it and the smell of the ocean and colors and what you were wearing and it just seem to trigger everything to do with your memory for some reason. And it brings joy to people. And joy of course brings a sense of well-being. So it’s a good therapy for people. I think all the arts are. There is a video clip of Glen relating to color and singing while he is painting and it’s really beautiful. So I am a big advocate of all of the arts for people with dementia. Really for everybody, for caregivers too. The art is therapeutic.

How is Glen doing now?

In March of 2014 our family joined the Memory Support Community in Nashville and Glen began residing there but recently about a month ago I brought Glen back home so now I’m caring for him at home again. And it is extremely challenging, he’s at the point where he just need one-on-one care round-the-clock. And it’s such a joy to have him back, emotionally it’s much better for me but physically it’s really challenging, I don’t get much sleep. He still has moments when he can become combative. I’m sporting a black eye this week that I got just trying to change his pants. You know that’s a part of Alzheimer’s that people generally don’t talk about. Your desire is to protect someone’s dignity but I really don’t think it has anything to do with dignity; it’s a disease. And this is typical for all people who have Alzheimer’s. They can’t express themselves verbally anymore and they don’t understand what’s going on, if you are trying to bathe them or take their clothes off or something their natural instinct is to lash out. So it’s just something that you don’t talk about that I think needs to be out there so that people can understand the tremendous challenges it is to be a caregiver for someone who has dementia.

So what are you doing to try and takes care of yourself? You can’t take care of him unless you are in pretty good shape.

Well, I pray a lot and I’m so blessed to have our daughter Ashley and our son Shannon and our nephew, Matthew. They’ve all been a part of our care team for so many years and they’re still living at home with me and helping. So I have got family and friends around, so that’s really important because you don’t want to become isolated. So many people are isolated in a home with someone with Alzheimer’s and they don’t have any help or the moral support of having somebody else there to help you. But I exercise, I take ballet, and that’s very therapeutic for me. I think it’s really important to raise awareness about Alzheimer’s and educate people about Alzheimer’s and so I’m doing that. I recently did a real estate course to get my mind off of Alzheimer’s and learn something new because I am aging, too. I am 57 and for my brain health I need to keep learning. So that was really fun. And it helps to meet people that are going to the same thing that I am. I’ve met a lot of women around the country who have husbands that have Alzheimer’s. I think it’s really different thing to have a spouse with Alzheimer’s than with a parent who has Alzheimer’s, emotionally different and so to have those friends has really been a great support to me. And I don’t belong to formal support group but I believe that those are really important and people should seek those out in their communities. I’m just blessed that it kind of happened organically with me to meet people in the same situation around the country and connect with them we stay in touch and visit each other and talk on the phone about what we are going through. And I try to eat right, too, all the natural things.

The film really makes clear that while people with Alzheimer’s and their caregivers have a lot in common, there are some very big differences.

Right. The thing is if you see one person with Alzheimer’s you’ve seen one person with Alzheimer’s. It’s different for everybody but at the same time it’s similar for everybody. There are standard things that people generally go through. Not everybody becomes combative but many do. Not everybody goes through retrogenesis but many do. Glen hasn’t really regressed and started becoming a child but there are childlike things that he began to do like his fascination with color. That is kind of beautiful actually because the way they begin to look at the world is like a brand-new life. Glen would look at the sunset and just get so emotional about it, “That’s the most beautiful thing I’ve ever seen!” So you try to find beauty and joy in the obvious tragedy. It’s your brain dying and you’re losing your memory but there’s still beauty to be found and Glen still seem to recognize me and we love each other and hug each other and still there are moments when we really connect deeply, when we look into each other’s eyes. And for the longest time Glen still would say things like, “We are so blessed!” Or he would go over to the window and raise his hand and say, “Thank you heavenly father!” So I knew that he still senses God’s presence and we’re still connected to God and that really gave me a lot of comfort. Now he has really progressed with his dysplasia so his ability to communicate verbally has diminished severely. He doesn’t understand anything anyone says to him but we still communicate with smiles and hugs. At least it’s so funny because he still has his personality to some extent that he’s always been an entertainer, and so even now he’s still telling you jokes. It may not make sense, the words don’t really relate to each other but he is telling a joke so he laughs and laughs and laughs hysterically which makes us laugh and that makes him happy. So we try to appreciate each day for what it is and we just love each other and try to make the best of a bad situation. What can you do?

Tell me about some of the support activities you are working on.

We’re also excited that the I’ll Be Me Alzheimer’s Fund will create programs that will lift the spirit of caregivers and also fund research. What we want to do is give an award to young scientists, give grant to somebody like gave Mayo Clinic or a place like Johns Hopkins to hire a young scientists and involve them in Alzheimer’s research because generally scientists doesn’t get involved in research until they are older. It’s really exciting. There are lots of great companies working as hard as they can to find their drug or therapies are hopefully a cure. So we’re hoping that that is going to speed up the process.

If somebody came to you and said, “We’ve just got the diagnosis and I don’t know where to turn,” what would be your first piece of advice?

You have to educate yourself. That’s the first thing and the Alzheimer’s Association is really helpful. That’s where I went to start learn about the disease and learn what kind of resources there are available to you. You have to build a support team around yourself. It’s important for the person who has Alzheimer’s to have that support and the caregiver needs support. You can’t do it on your own — it takes a team. I would advise them to not let it get you down, do what Glen did and keep living your life and not worry about it. Don’t worry about tomorrow. Jesus said, “Don’t worry about tomorrow, it has enough worries of its own.” And a cheerful heart is like a good medicine so keep yourself a healer, keep living your life. Educate yourself and surround with people that you love and who will support you. And be honest with people, because when you are honest with people and let them know what you’re going through that gives them permission to step in and help, it helps to remove the fear. I think people are afraid, “I don’t know how to relate to someone Alzheimer’s” and they just stop coming around because they are afraid that they will say the wrong thing. But if you talk openly about it, it helps them feel a bit more comfortable with you. And then you’ve got more support.

The 4 stories we tell ourselves about death

A long and painful goodbye to my dying grandparents - Quartz

"I recently visited my grandparents, and decided to document their lives, especially the side that as grandchildren we often ignore. A lot of these portraits were painful and difficult to capture, but it has become my own way of dealing with their mortality. "

A long and painful goodbye to my dying grandparents - Quartz

Friday, September 4, 2015

BBC Between Life and Death

Death with dignity: how music eases grief's deep ache | Music | The Guardian

 "You feel the deep ache profoundly. I realised that the events we grapple with are bigger than ourselves. Finding a satisfying answer is impossible. But, despite that, music can make it feel like it’s not futile. That’s its power: it helps you get through the hardest of moments, even if it’s only for an hour at a time."

Death with dignity: how music eases grief's deep ache | Music | The Guardian

An Outpouring of Reader Reflection After the Death of Oliver Sacks - The New York Times

An Outpouring of Reader Reflection After the Death of Oliver Sacks - The New York Times: "After learning he had terminal cancer, Dr. Sacks wrote poignantly about the universal affliction that strikes all humans, mentioning contemporaries of his who died in recent years. Without dwelling on loss, he described the upshot of being human: “When people die, they cannot be replaced.”"

'via Blog this'

Podcast: Kids Ask About Death

Sarah Troop, executive director of the Order of the Good Death, answers kids’ questions about death and dying on The Longest Shortest Time podcast.
The Order of the Good Death is a group of funeral industry professionals, academics and artists exploring ways to better familiarize America’s “death phobic” society with mortality and its meaning.

Podcast: Kids Ask About Death

UK's first dementia dog gives couple 'their lives back’ - Health News - Health & Families - The Independent

"An elderly couple in Scotland said they have been given their lives back after they were partnered up with two-year-old golden Labrador Kaspa – who is one of the first dogs in the UK to receive special training to assist dementia-sufferers.

Kaspa’s skills include fetching medicines when a reminder alarm goes off, waking up his owners at the right time and carrying items between them."

UK's first dementia dog gives couple 'their lives back’ - Health News - Health & Families - The Independent

Thursday, September 3, 2015

Excerpt from "My Family Record Book" by Harris N. (Hershey) Rosen

We are honored to have permission to publish an excerpt from My Family Record Book: The Easy Way to Organize Personal Information, Financial Plans, and Final Wishes for Seniors, Caregivers, Estate Executors, etc., by Harris N. ("Hershey") Rosen. This book is a vital resource for all families, helping to facilitate difficult but essential conversations so that family members can have the experience that makes them feel most loved and most in control.

From the book:

A close friend, Anne, whose husband died a few years ago, spoke of her experience.

Although she knew of his impending death, she was totally unprepared for her own reaction. Strong emotions, she relates, came to the surface, and things that she did before without thinking became a major issue. Although a capable and accomplished businesswoman in her own right, she was almost paralyzed when it came to the seemingly-simple task of opening a checking account. Zapped of all energy, everyday tasks became formidable. Food shopping and going to the cleaners became major events. In fact, anything out of the house was a challenge.

Another friend, Lisa, didn’t have any warning. The night before, she and her husband had gone out to dinner. The following morning George got up early for an appointment and went into the bathroom to brush his teeth. But he never came out.

She heard a loud thud as he slumped to the floor. In total shock and dismay, she knew instantly that she was facing the hell of her life without her best friend and trusted partner. Both hardworking, they hadn’t been able to save much but were getting by and had a great marriage. Now fear and panic about her future felt overwhelming. She was petrified. Without George’s income, would she have to move? How would she make ends meet? What taxes were due and when?

In another instance, a friend was helping me write my book – My Family Record Guide. Ten minutes after he finished reading it, his phone rang. It was his mother – quite distraught, because her husband was in the hospital, and she knew there were bills to pay. But she didn’t know if there was enough money in the checking account to cover them nor did she have the foggiest idea how to transfer funds from their savings to their checking account.

Then there’s what Ronald Regan called “The Long Goodbye” – dementia, which places a spouse in the uncomfortable position of having all the financial and medical responsibilities without being able to start life again. The care-giver becomes a prisoner with a tremendous burden.

These are not times for the game of hide and seek - where the care-giver or survivors have to find information that seems to be hidden.

We all think we will be prepared, but close friends and my own experience tell me that death or disability of a loved one is all-consuming and totally disorienting. There may be emotional reactions of confusion, unrelenting tears, anger or panic; or physical effects, such as stomach problems, headaches or fatigue. And there might be psychological symptoms, such as needing to be in control, lost ability to trust, and feelings of isolation. Tragically, Anne and Lisa experienced it all. Committing vital information to paper will empower your loved ones through knowledge. They will not be overwhelmed by the gigantic task of figuring out the logistics of home maintenance and finances.

Unfortunately, the death of a loved one may very well make a partner vulnerable to scams and fraud, even by family members – children who want an “advance” on their inheritance. Your partner can feel secure knowing who you feel are trusted professionals pertaining to economic stability.

Likewise, a new widow, or widower, may receive calls from potential suitors. But as one recent widow said to me, “I don’t want to be either a nurse or a purse.” The information will provide freedom from needless worry and doubt about future security. (Provided, of course, that you've put your financial affairs in good order.)

Perhaps most poignantly, the information will be a conduit for your protective and loving presence. A rabbi friend tells me that people will stop calling in six to nine months and that’s when problems may occur. Indeed, the National Mental Health Association reported some years ago that: “One-third of widows/widowers meet the criteria for depression in the first month after the death of their spouse, and half of these individuals remain clinically depressed after one year.” And the Harvard Medical School Family Health Guide says that: “In the year after a spouse’s death, 50% of widows develop depression.”

And that’s why you want to make life easier for your partner and loved ones by relating the information you know they will need to maintain the life style you want him/her or them to have.

The above true stories are excerpted from the book, “My Family Record Book”, which is available on Amazon. Used with permission and all rights reserved.

A free app based on the book is available.

To an Athlete Dying Young by A. E. Housman

To an Athlete Dying Young

BY A. E. Housman

The time you won your town the race
We chaired you through the market-place;
Man and boy stood cheering by,
And home we brought you shoulder-high.

Today, the road all runners come,
Shoulder-high we bring you home,
And set you at your threshold down,
Townsman of a stiller town.

Smart lad, to slip betimes away
From fields where glory does not stay,
And early though the laurel grows
It withers quicker than the rose.

Eyes the shady night has shut
Cannot see the record cut,
And silence sounds no worse than cheers
After earth has stopped the ears.

Now you will not swell the rout
Of lads that wore their honours out,
Runners whom renown outran
And the name died before the man.

So set, before its echoes fade,
The fleet foot on the sill of shade,
And hold to the low lintel up
The still-defended challenge-cup.

And round that early-laurelled head
Will flock to gaze the strengthless dead,
And find unwithered on its curls
The garland briefer than a girl’s.

The Way They Were - The New York Times

"My parents each took an approach to the end of life that was indicative of the way they lived their lives."

The Way They Were - The New York Times

Julia Baird on What She Learned from Cancer - The New York Times

"I am still grappling with what all of this means. But in this short time, three age-old truths became even more apparent to me.

First, stillness and faith can give you extraordinary strength. Commotion drains.

The “brave” warrior talk that so often surrounds cancer rang false to me. I didn’t want war, tumult or battle. Instead, I just prayed to God. And I think what I found is much like what Greek philosophers called ataraxia, a suspended kind of calm in which you can find a surprising strength.

Second, you may find yourself trying to comfort panicked people around you. But those who rally and come to mop your brow when you look like a ghost, try to make you laugh, distract you with silly stories, cook for you — or even fly for 20 hours just to hug you — are companions of the highest order. Your family is everything.

Third, we should not have to retreat to the woods like Henry David Thoreau to “live deliberately.” It would be impossible and frankly exhausting to live each day as if it were your last. But there’s something about writing a will that has small children as beneficiaries that makes the world stop.

My doctor asked me a few days ago how I became so calm before the surgery. I told her: I prayed, I locked out negativity and drama and drew my family and tribe — all big-hearted, pragmatic people — near. I tried to live deliberately.

“Can I just say,” she said, “you should do that for the rest of your life.”"

Was It Cancer? Getting the Diagnosis - The New York Times

Wednesday, September 2, 2015

Interview with funeral director Amy Cunningham |

There is endless wisdom and compassion in this interview with my friend Amy Cunningham.

"One path to immortality could be our death process. We don’t get to crawl off like a cat and die under the deck. Our final days will be witnessed by our caretakers and those closest to us. I don’t want to have performance anxiety about it, but I hope my quest to have a healthy outlook and approach to death will favorably shape my two sons’ outlook. On it goes. Can we express gratitude, say goodbye, and yield to the inevitable with grace? My father was ninety-three when he said, “I’ve had a great life, and I don’t want to do all the fancy things these doctors are telling me to do. I’m tired. I love you. I’m ready. I’ve had it.” That was painful to hear, but it also made sense to me. He stopped taking his heart medication two weeks later, and died of a stroke in the care of hospice at home not long after that."

Interview with funeral director Amy Cunningham |

To learn more: Amy Cunningham's website