Children and Death – Page 24 – The Amateur's Guide To Death & Dying

November 2, 2015November 2, 2015

Faced with tragic loss, families must face the difficult choice of organ donation

By Joe Smydo

“No.”

That’s what Kelli Jo Lovich said when she was asked to donate the organs of her 4-year-old son, Colbee, who died after suffering severe brain injuries last year in an ATV accident in Butler County.

But Mrs. Lovich recalled that Shannon Pribik, a procurement coordinator with the O’Hara-based Center for Organ Recovery and Education, persisted. Ms. Pribik answered questions, promised there would be minimal trauma to Colbee during organ recovery and agreed to stay by his side until the funeral director arrived for his body.

Mrs. Lovich relented. “He was only 4,” she said of Colbee, “but he loved to help.”

■ ■ ■

Procurement coordinators are on the front lines of the nation’s overwhelmed transplant system.

They approach families like the Loviches in the midst of a tragic loss and ask them — when their grief is raw and their spouse, child or sibling is tethered to machines in the intensive care unit — to donate their loved one’s organs so that others can live.

“When you do it for the first time, you feel like you’re invading their space,” said Linda Miller, who operates a University of Toledo graduate training program for coordinators. The program was founded in 2003 with CORE’s support.

The stakes are high.

With more than 122,000 people waiting for transplants, and an average of 22 of them dying each day, coordinators face great pressure to recover organs from the roughly 2 percent of Americans who end their lives in a way — usually of brain injuries while on a hospital ventilator — that makes donation possible. People who die outside of a hospital cannot be donors because their organs deteriorate too quickly.

Sometimes, a family will say, “It’s just not for us. Let the next person be the donor,” said Jonathan Coleman, a coordinator at CORE.

Because donation can occur only in limited situations, he said, coordinators stress a family’s “unique opportunity” to turn its tragedy into somebody else’s second chance at life. Often, advocates say, the decision to donate a loved one’s organs — to let that person live on through others — sustains a family for years.

Yet it can be a tough sell.

While demand for organs is growing, donation rates have been stagnant, with deceased donors numbering about 8,000 annually for the past decade.

Overall, procurement organizations — CORE is one of 58 nationwide — recover organs from eligible donors 73.6 percent of the time. CORE’s recovery rate is 82.7 percent, according to the Scientific Registry of Transplant Recipients.

If a person had registered as a donor — the option is given at a driver’s license center, among other places — procurement organizations in Pennsylvania and most states have the authority to recover organs even if relatives object. If the person was not registered, coordinators try to persuade the family to donate the organs.

Some people balk at the prospect of organ donation because of fear that doctors will let the prospective donor die to save others waiting in the wings for transplants. While advocates insist that does not happen, procurement organizations have been sued at least twice by those who claim it did.

In 2009, Michael and Teresa Jacobs sued CORE, Hamot Medical Center in Erie, Pa., and several doctors, alleging that their 18-year-old-son, Gregory, who sustained brain injuries in a snowboarding accident, was “intentionally killed … so that his organs could be harvested.” The defendants settled for $1.2 million but contended that they provided proper care.

In 2012, Patrick McMahon, a former coordinator, sued the New York Organ Donor Network, now called LiveOnNY, alleging that the organization pressured him and a doctor to have patients declared brain dead — despite signs of brain activity — so that families could be persuaded to donate organs. In court papers, the donor network denied the allegations. The case is unresolved.

■ ■ ■

A former anesthesia tech, Mrs. Lovich once walked in on organ recovery surgery by mistake and blanched at the sight. Her reservations about organ donation were clear; Ms. Pribik recalled Mrs. Lovich’s silence and negative body language.

But Mrs. Lovich said Ms. Pribik’s promise that the cuts to Colbee’s body would be minimal — no greater than that required for regular surgery — softened her resistance to organ donation. Ms. Pribik’s promise to stay with Colbee until the funeral director arrived for his body — Mrs. Lovich didn’t want him “to just sit in a basement somewhere”— also helped. The thought of Colbee helping others moved her aching heart.

Coordinators are trained to address concerns and answer questions while guiding the family toward donation. Families often make special requests, and Ms. Pribik, who has held donor children in her arms, played their favorite songs in the operating room and kept treasured belongings near them, obliges when she can.

The job — with a starting base salary often in the low $60,000 range, Ms. Miller said — can be physically and emotionally grueling. Shifts of 24 hours or longer are common. Many coordinators, including Ms. Pribik, come from the nursing ranks and have experience with end-of-life care.

Ms. Miller said her training program was founded partly because high turnover signaled a need for better job preparation. Of the 84 who graduated from 2004 to 2014, about 78 percent are still in the field, she said, calling that a “very good” rate.

“I tell them every tough thing about this job,” she said.

Some coordinators are embedded in hospitals, but others travel as needed to hospitals in a procurement organization’s service area. CORE’s territory — encompassing five transplant centers, dozens of other hospitals and 46,177 square miles in Western Pennsylvania and parts of West Virginia and New York — is the 22nd largest in the nation.

Research and experience shape the strategies coordinators use. Ms. Miller said she speaks with her students about the “top 20 objections/concerns families might have” and urges them to ask “probing questions” to get to the root of unspoken fears.

“Then I have a bazillion scenarios, and we role-play, and we role-play, and we role-play,” she said.

A study of Texas cases published last year in the Journal of Trauma and Acute Care Surgery suggested that female coordinators were more effective than males; that a family was more likely to consent to donation if approached by a coordinator of the same race; and that consent rates started to decline after midnight as families became fatigued.

Faced with the loss of a loved one, some families are dazed. Others are angry. “We are prepared for that,” Ms. Miller said.

■ ■ ■

The coordinator may start by reviewing patient data and huddling with the medical team to gain insight into family dynamics. Who are the decision makers? Is there conflict within the family? How are family members coping with the death?

“So far, I’ve never approached two families the same way,” CORE coordinator Wes Washington said.

One coordinator, interviewed for a 2011 article in the Journal of Health Communication, said gathering information about family members from a distance helps to provide important insights “long before they even know who I am.”

The article quoted another coordinator as saying he considers a lab coat a barrier to communication and takes his off before meeting with a family. If he senses that a necktie would create a “class barrier” with a family, he said, he removes that, too.

Families sometimes hesitate about donation because they don’t want further trauma to a loved one’s body. In those cases, coordinators explain that cuts will be as limited as possible and dignified and will not prevent an open-casket viewing. If the loved one died a tragic or unexpected death, the coordinator may point out that an autopsy is likely anyway.

Coordinators often suggest that donation would be a heroic act in keeping with the patient’s good character.

“We don’t ask the family. We offer them the opportunity. I really feel I’m giving them something good,” CORE coordinator Amy Weisgerber said.

Jenna LaSota, a Beaver County native who graduated from the Toledo program in July and works for Kentucky Organ Donor Affiliates, said she has found that families are receptive to the message and “want that good to happen.”

Ms. Pribik said donation also gives a measure of control to families who feel powerless after a tragic, unexpected death.

Some coordinators had used a “presumptive” approach and met a family with the expectation that it will donate after understanding the benefits. Ms. Miller said some in the field consider that approach “too strong” or “somewhat manipulative.” She said she teaches a “sensitive, effective family approach” that allows coordinators to better tailor their strategies to each family.

Some scholars and doctors have criticized coordinators for being too pushy. “Even seemingly caring and compassionate statements — like, ‘Would you like me to give you some time before you make your decision?’ — are discouraged in favor of language that rushes families along the preferred decisional pathway,” Robert Truog, a Harvard Medical School ethicist, wrote in 2012 in the American Journal of Bioethics.

Michael Grodin, a physician and ethicist at Boston University School of Public Health, agreed that coordinators sometimes are overzealous in their quest to keep organs from slipping through their grasp. Better for some organs to go unused than to undermine the public confidence that anchors the transplant system, Dr. Grodin added, calling for more transparent and verifiable standards for diagnosing death-by-brain criteria.

Coordinators say they are committed to ethical treatment of families. “I say, ‘That’s me in there. … What kind of person do I want talking to me and how do I want them talking to me?” CORE’s Mr. Coleman said.

Ms. LaSota said the coordinators she observed during her internships treated families with respect. “They didn’t try to push them or make it a big deal … .”

Some public education campaigns encourage family members to discuss donation so that, in the event of a tragedy, a loved one’s preferences are known and survivors have one fewer decision to make. A sudden death “is not the time to be thinking about organ donation for the first time,” said transplant advocate Kim Harbur of Kansas.

■ ■ ■

After consenting to donation and completing paperwork, family members are encouraged to go home.

But for the coordinator or coordinators — some work in teams — hours of work still are ahead. Organ systems must be evaluated, the data entered into a national database, prospective recipients identified and offers made to transplant centers.

The coordinator also must maintain the condition of a body that, without brain function, becomes unstable. Electrolytes go out of balance and body temperature and blood pressure drop — all changes that can damage the organs.

As soon as possible, procurement organizations give donor families welcome news. Mrs. Lovich learned that Colbee’s kidneys had gone to a man and a woman, both in their late 50s, and his heart valve to an 11-month-old baby.

She has continued to stay in touch with Ms. Pribik and has registered as a donor so that she has a chance to follow Colbee’s example.

“If my son can do it,” she said, “I can do it.”

Complete Article HERE!

October 23, 2015October 23, 2015

Seattle nurse vows to create region’s first hospice for children

By Mark Miller

She pages through a book of photographs filled with the faces of children. And the letters they’ve written.

The images are of young people who lost their battle with cancer, but spent their final months expressing thoughts about life, love and hope.

Suzanne wants to make sure those final months can someday be spent not in a hospital, but in the nurturing environment of a children’s hospice.

“We can do this,” said the oncology nurse, who has worked at Seattle’s top hospitals. “We can set an example and a template for the rest of the country and show them what can happen when a community comes together and cares about their children.”

This has become Suzanne’s mission since she learned years ago that there are only two children’s hospices in the entire country. Not one in all of the Pacific Northwest, not even Seattle.

“Because it makes people feel uncomfortable nobody’s talking about it and therefore nothing is being done,” said Suzanne.

She has more than thirty years of experience taking care of cancer patients, mostly children.

“Somebody needs to do this. I’m somebody,” she said. “So I founded Ladybug House.”

For the past two years Suzanne has dedicated herself to organizing, advocating and fundraising on a quest to transform her idea into reality.

Ladybug House has gained momentum and support, but what the project needs most is $12 million and a 3-to-5-acre plot of land to start build what she envisions to be a state-of-the-art facility serving young people in need of hospice care.

While some families of terminally ill children are able to take their children home, the burden on parents can be overwhelming.

Gienna Njie is a mother who was stunned to learn there was no hospice option for her daughter, Ahmie, who passed away June 14th after battling a rare sarcoma.

“Kids do die and kids do suffer and they need a place where they can go to be happy,” Gienna said. “It’s so important that kids and their families can live in the moment in the last days and do some amazing things and have memories.”

And that, according to Gienna and Suzanne, is the unique setting a hospice can provide. Hospitals, they say, provide excellent care, but the end-stage of life does not have to unfold in a clinical setting.

“Ladybug house will be a place not just about end-of-life care,” Suzanne said. “It’ll be a place where families have a break during the unimaginable, during those hard times. They don’t have to be the caregivers all the time. They can be cared for.”

The hospice will also provide opportunities for children to express themselves through art, to have pets available and to interact with other families going through the exact same experience.

Suzanne’s plan calls for suites where families can sleep overnight for extended periods of time, and communal kitchens where people can cook their own meals or have meals prepared for them.

“It’ll be a place where legacies and memories can be made and where families can celebrate every day,” she said.

Gienna says it was a privilege to be the primary caregiver to her 14-year-old daughter, but the stress of becoming a de-facto home nurse was daunting at times.

“I would not have wanted to be anywhere else, but it was exhausting and it took away from actually being able to spend as much quality time with her, to just be a family without worrying about oxygen tanks and medications,” she said.

Gienna describes her daughter as strong, creative and filled with exuberance for living life to its fullest.

“She was somebody who could walk into a room and everybody would smile and say, ‘who is that beautiful girl?'” Gienna remembers. “Ahmie was well-loved and she was such a phenomenal person and a loving person.”

In the moments when Ahmie was in greatest pain, they would touch their heads to one another and focus on breathing. And then they would talk.

“We started to have conversations about what we could do to help other children that were suffering,” said Gienna. “I said if you’re not here I will make sure that children don’t suffer as much as you have had to suffer.”

Gienna learned about Suzanne’s mission to provide a hospice option to children like Ahmie.

When moments of discouragement or frustration arise, Suzanne finds inspiration in that book of children’s photos and letters.

“When I think I can’t do it any more I look in here and remember that I don’t have a choice,” she says. “This isn’t about me. It’s about them. It’s about them and their families and that they all deserved better.”

Suzanne says the U.S. Is far behind other countries when it comes to providing hospice care for children. There are more than 50 in the United Kingdom, 8 in Canada and 5 in Australia.

The children’s hospices in the U.S. are in California and Arizona.

It is frustrating for Suzanne and her supporters that there are about 3,000 hospice facilities for adults in this country and 400 for pets.

560,000 children across America are currently living with life-limiting illnesses.

Ladybug House has adopted a mission statement: “If we cannot add days to the life of a child, we will add life to their days.”

When you meet and listen to Suzanne Gwynn, you leave believing that she will succeed — that in the near future Seattle will have a hospice that will transform the lives of children and their families.

The following links provide more information about Ladybug House and how people can help. www.ladybughouse.org

Complete Article HERE!

September 29, 2015

I loved my son so much I planned his peaceful death, says brave mum of brain tumour boy

BY STEVE MYALL, SACHA LANGTON-GILKS

David Langton-Gilks died from a brain tumour in August 2012 at the age of 16 but before his death his mum Sacha planned a peaceful passing for him at home surrounded by his family

Death. It’s the final taboo, isn’t it? Especially when it’s a child. We can’t – or won’t talk – about it.

Sacha Langton-Gilks, the lead champion for The Brain Tumour Charity’s HeadSmart campaign for earlier diagnosis of brain tumours in children and young people shatters that taboo.

To help other parents, she talks about how her son David, who died from a brain tumour in August 2012 at the age of 16, had a peaceful death at home surrounded by his family.

She emphasises that, just like we make birth plans, we should make death plans and how being able to die peacefully at home was her last act of love for her cherished son.

Family: David Langton-Gilks before his death with his mum Sacha

Here Sacha tells her story:

Days before he died, the last lucid words my 16-year-old son David, or DD as we like to call him, said were: ‘I love it here.’ He was looking out his bedroom window into the treetops where, at night, owls – one of his passions – would come to call.

It was just a few days before London 2012 Paralympics and for five years, since being diagnosed with an aggressive, cancerous brain tumour at the age of 11, DD had endured everything globally available on the NHS, including 11 brain operations, years of chemotherapy, weeks of radiotherapy, blood transfusions and a stem cell transplant.

His cancer had now spread down his spine and throughout his brain, leaving him with severe dementia. Unfortunately someone’s child has to be in the 25 percent that don’t survive this type of brain tumour, a medulloblastoma .

Three years on, I can honestly say that giving my child a ‘good’ death – without pain, calm and comfortable in his own bed, in the arms of his family with his beloved cat sitting on the bed, will be my greatest life achievement. And it gives me immense comfort in my grief.

I am speaking out to break a taboo because I remember the silence that hung over parents in the children’s cancer ward when a family ‘went home.’

We all knew that meant the child was going to die but no one could say it.

Fear overwhelmed us. If you cannot even say the word, how are you going to be able to discuss what choices best suit your family for end of life care?

Sacha Langton-Gilks, the lead champion for The Brain Tumour Charity's HeadSmart campaign — Mum: Sacha Langton-Gilks, the lead champion for The Brain Tumour Charity’s HeadSmart campaign

With brain tumours being the biggest cancer killer in the UK of children and adults under 40, The Brain Tumour Charity’s feedback from many parents is that they feel completely isolated with no information.

Even doctors do not say the D word because they have been trained to ‘fix’ things and view death as somehow a failure on their part.

But I see my doctors and nurses as geniuses for enabling a fabulous quality of life for my child right up to his death. This taboo about death has to be shattered so that we can improve how we care for our loved ones at the end of their lives.

When I was asked to give a speech to parents and doctors at The Brain Tumour Charity’s first paediatric brain tumour information day about how we managed DD’s death, the process itself, I didn’t know if I could do It. But then I remembered that voiceless fear in parents’ eyes at the hospital.

I call this an ‘ante-mortem class’ – one parent sharing their experience with another parent just as you would at an ante-natal class.

After all, you wouldn’t dream of giving birth without talking to another mum, reading books or going to a class, would you?

Lack of information about end of life care for children breeds fear and stops parents from even being able to articulate questions to their doctors.

David Langton-Gilks before his death with his family — Tough: David before his death with his family

On top of this is our society’s obsession with being ‘positive’ with hope. The fear that somehow by saying the D word means we ourselves might have made it happen by not being positive enough, by giving up hope. It is our punishment for being cowards.

But death is part of life and comes to us all. So how can it be negative or positive? It just is what it is – ceasing to be.

When we ‘went home’ after DD’s final scan in May 2012, which showed his cancer was everywhere and he had weeks to live, we were not doing nothing or stopping treatment – there was a detailed advanced care plan in place.

He was having full palliative care treatment co-ordinated by Southampton General Hospital which included Gold Standards Framework for end of life care at our GP’s surgery and also involved Marie Curie.

It centred on the relief of his symptoms of pain and vomiting to give him quality of life.

It just was not curative treatment as this was no longer possible.

But we still had hope – we had changed that hope from one that DD could be cured to one where he had the best quality of life possible in the limited time he had left.

Some people do a bucket list, but DD just wanted to hang out at home with me and his dad Toby, his brother Rufus, now 17, and sister Holly, now 13.

He didn’t want to spend another second in hospital and wanted to have a party with his friends. So we did.

If we had not faced up to the fact that he was going to die soon, we would have spent hours of that incredibly precious time in hospital trying to convince ourselves that the chemotherapy on offer would cure him.

DD would have hated it and we’d have been traumatised by each successive scan, contradicting what we longed to see.

My biggest agony was knowing that helping my child to suffer less meant I might have less time with him.

Nothing will ever be as painful as letting DD go, but how could I have made him suffer pain on my account? That would have made me the most selfish mother alive and I couldn’t have lived with that.

So the biggest battle was actually me.

In Childhood Cancer Awareness Month, from one parent to others going through the same thing, as a gift from my heart, I am sharing how my son died to shatter the taboo and make your battle less.

Complete Article HERE!

August 3, 2015August 4, 2015

Children and Adolescents’ Understanding of Death

Parents often feel uneasy and unprepared in responding to their children’s curiosity about death. Studies indicate that many parents felt they had not been guided to an understanding of death in their own childhood and as parents either had to improvise responses or rely on the same evasive techniques that had been used on them. It is useful, then, to give attention to the attitudes of adults before looking at the child’s own interpretations of death.

By ROBERT KASTENBAUM

The Innocence of Childhood

Two contrasting developments occurred as a prosperous middle class arose during the Industrial Revolution, which began in the mid-eighteenth century. In the past children had been either economic assets or liabilities depending upon circumstances, but seldom the focus of sentiment. Now both children and childhood were becoming treasured features of the ideal family, itself a rather new idea. By Victorian times (the period of the reign of Britain’s Queen Victoria, from 1837 to 1901), the family was viewed as a miniature replica of a virtuous society under the stern but loving auspices of God. Instead of being regarded primarily as subadults with limited functional value, children were to be cherished, even pampered. Frilly curtains, clever toys, and storybooks written especially for young eyes started to make their appearance. The idea of childhood innocence became attractive to families who had reached or were striving for middle-class success and respectability. Fathers and mothers had to meet obligations and cope with stress and loss in the real world, while it was considered that children should be spared all of that. It was believed that children cannot yet understand the temptations and perils of sex or the concept of mortality and loving parents should see to it that their children live in a world of innocence as long as possible.

Furthermore, Sigmund Freud suggested that in protecting their children from awareness of death, then, parents, in a sense, become that child and vicariously enjoy its imagined safety and comfort.

One of history’s many cruel ironies was operating at the same time, however. Conditions generated by the Industrial Revolution made life miserable for the many children whose parents were impoverished, alcoholic, absent, or simply unlucky. The chimney sweep was one of the most visible examples. A city such as London had many chimneys that needed regular cleaning. Young boys tried to eke out a living by squeezing through the chimneys to perform this service. Many died of cancer; few reached a healthy adulthood. While mothers or fathers were reading storybooks to beloved children, other children were starving, suffering abuse, and seeing death at close range in the squalid alleys.

Children so exposed to suffering and death did not have the luxury of either real or imagined innocence; indeed, their chances for survival depended on awareness of the risks. Many children throughout the world are still exposed to death by lack of food, shelter, and health care or by violence. Whether or not children should be protected from thoughts of death, it is clear that some have no choice and consequently become keenly aware of mortality in general and their own vulnerability in particular.

Children’s Death-Related Thoughts and Experiences

Encounters with death are not limited to children who are in high-risk situations, nor to those who are emotionally disturbed. It is now well established that most children do have experiences that are related to death either directly or indirectly. Curiosity about death is part of the normal child’s interest in learning more about the world. A goldfish that floats so oddly at the surface of the water is fascinating, but also disturbing. The child’s inquiring mind wants to know more, but it also recognizes the implied threat: If a pretty little fish can die, then maybe this could happen to somebody else. The child’s discovery of death is often accompanied by some level of anxiety but also by the elation of having opened a door to one of nature’s secrets.

Child observation and research indicate that concepts of death develop through the interaction between cognitive maturation and personal experiences. Children do not begin with an adult understanding of death, but their active minds try to make sense of death-related phenomena within whatever intellectual capacities they have available to them at a particular time. Adah Maurer, in a 1966 article titled “Maturation of Concepts of Death,” suggested that such explorations begin very early indeed. Having experienced frequent alternations between waking and sleeping, some three-year-olds are ready to experiment with these contrasting states:

In the game of peek-a-boo, he replays in safe circumstances the alternate terror and delight, confirming his sense of self by risking and regaining complete consciousness. A light cloth spread over his face and body will elicit an immediate and forceful reaction. Short, sharp intakes of breath, and vigorous thrashing of arms and legs removes the erstwhile shroud to reveal widely staring eyes that scan the scene with frantic alertness until they lock glances with the smiling mother, whereupon he will wriggle and laugh with joy. . . . his aliveness additionally confirmed by the glad greeting implicit in the eye-to-eye oneness with another human. (Maurer 1966, p. 36)

A little later, disappearance-and-reappearance games become great fun. Dropping toys to the floor and having them returned by an obliging parent or sibling can be seen as an exploration of the mysteries of absence and loss. When is something gone for good, and when will it return? The toddler can take such experiments into her own hands—as in dropping a toy into the toilet, flushing, and announcing proudly, “All gone!” Blowing out birthday candles is another of many pleasurable activities that explore the riddle of being and nonbeing.

JFKsalute — This popular image of the Kennedy family taken during John F. Kennedy’s funeral shows John Jr. paying tribute to his father with a salute.

The evidence for children’s exploration of death-related phenomena becomes clearer as language skills and more complex behavior patterns develop. Children’s play has included death-themed games in many societies throughout the centuries. One of the most common games is tag and its numerous variations. The child who is “It” is licensed to chase and terrorize the others. The touch of “It” claims a victim. In some versions the victim must freeze until rescued by one of those still untouched by “It.” The death-related implications are sometimes close to the surface, as in a Sicilian version in which a child plays dead and then springs up to catch one of the “mourners.” One of the most elaborate forms was cultivated in the fourteenth century as children had to cope with the horrors of the Black Death, one of the most lethal epidemics in all of human history. “Ring-around-the-rosy . . . All fall down!” was performed as a slow circle dance in which one participant after another would drop to the earth. Far from being innocently oblivious to death, these children had discovered a way of both acknowledging death and making it conform to the rules of their own little game.There are many confirmed reports of death awareness among young children. A professor of medicine, for example, often took his son for a stroll through a public garden. One day the sixteen-month-old saw the big foot of another passerby come down on a fuzzy caterpillar he had been admiring. The boy toddled over and stared at the crushed caterpillar. “No more!” he said. It would be difficult to improve on this succinct statement as a characterization of death. The anxiety part of his discovery of death soon showed up. He no longer wanted to visit the park and, when coaxed to do so, pointed to the falling leaves and blossoms and those that were soon to drop off. Less than two years into the world himself, he had already made some connections between life and death.

Developing an Understanding of Death

longfellow square small — The critically acclaimed Longfellow story deals with themes of death and bereavement.

Young children’s understanding of death is sometimes immediate and startlingly on target, as in the fuzzy caterpillar example. This does not necessarily mean, however, that they have achieved a firm and reliable concept. The same child may also expect people to come home from the cemetery when they get hungry or tired of being dead. Children often try out a variety of interpretations as they apply their limited experience to the puzzling phenomena associated with death. Separation and fear of abandonment are usually at the core of their concern. The younger the child, the greater the dependence on others, and the more difficult it is for the child to distinguish between temporary and permanent absences. The young child does not have to possess an adult conception of death in order to feel vulnerable when a loved one is missing. Children are more attuned to the loss of particular people or animal companions than to the general concept of death.

A pioneering study by the Hungarian psychologist Maria Nagy, first published in 1948, found a relationship between age and the comprehension of death. Nagy described three stages (the ages are approximate, as individual differences can be noted):

• Stage 1 (ages three to five): Death is a faded continuation of life. The dead are less alive—similar to being very sleepy. The dead might or might not wake up after a while.
• Stage 2 (ages five to nine): Death is final. The dead stay dead. Some children at this level of mental development pictured death in the form of a person: usually a clown, shadowy death-man, or skeletal figure. There is the possibility of escaping from death if one is clever or lucky.
• Stage 3 (ages nine and thereafter): Death is not only final, but it is also inevitable, universal, and personal. Everybody dies, whether mouse or elephant, stranger or parent. No matter how good or clever or lucky, every boy and girl will eventually die, too.

Later research has confirmed that the child’s comprehension of death develops along the general lines described by Nagy. Personifications of death have been noted less frequently, however, and the child’s level of maturation has been identified as a better predictor of understanding than chronological age. Furthermore, the influence of life experiences has been given more attention. Children who are afflicted with a life-threatening condition, for example, often show a realistic and insightful understanding of death that might have been thought to be beyond their years.

The Adolescent Transformation

Children are close observers of the world. Adolescents can do more than that. New vistas open as adolescents apply their enhanced cognitive abilities. In the terminology of influential developmentalist Jean Piaget, adolescents have “formal operations” at their command. They can think abstractly as well as concretely, and imagine circumstances beyond those that meet the eye. This new level of functioning provides many satisfactions: One can criticize the established order, take things apart mentally and put them back together in a different way, or indulge in lavish fantasies. The increased mental range, however, also brings the prospect of death into clearer view. The prospect of personal death becomes salient just when the world of future possibilities is opening up.

Adolescents have more than enough other things to deal with (e.g., developing sexual role identity, claiming adult privileges, achieving peer group acceptance), but they also need to come to terms somehow with their own mortality and the fear generated by this recognition. It is not unusual for the same adolescent to try several strategies that might be logically inconsistent with each other but that nevertheless seem worth the attempt. These strategies include:

Playing at Death: To overcome a feeling of vulnerability and powerlessness, some adolescents engage in risk-taking behavior to enjoy the thrilling relief of survival; dive into horror movies and other expressions of bizarre and violent death; indulge in computerized games whose object is to destroy targeted beings; and/or try to impersonate or take Death’s side (e.g., black dress and pasty white face make-up worn by “goths”).
Distancing and Transcendence: Some adolescents engross themselves in plans, causes, logical systems, and fantasies that serve the function of reducing their sense of vulnerability to real death within real life. Distancing also includes mentally splitting one’s present self from the future self who will have to die. One thereby becomes “temporarily immortal” and invulnerable.
Inhibiting Personal Feelings: It is safer to act as though one were already nearly dead and therefore harmless. Death need not bother with a creature that seems to have so little life.

These are just a few examples of the many strategies by which adolescents and young adults may attempt to come to terms with their mortality. Years later, many of these people will have integrated the prospect of death more smoothly into their lives. Some will have done so by developing more effective defensive strategies to keep thoughts of death out of their everyday lives—until they become parents themselves and have to deal with the curiosity and anxiety of their own children.

Complete Article HERE!

July 19, 2015

Dollhouse Graves

By By Charlie Hintz

These grave markers are as sad as they are sweet. These dollhouses were built by grieving parents for their beloved daughters, complete with favorite toys and other significant items. Though they are plagued by vandalism through the years, they continue to be kept up and restored when need be.

Dorothy Marie Harvey (1926-1931)

Dorothy Marie Harvey and her family were passing through Medina, Tennessee on their way North to find work. When Dorothy got measles and died, the townfolk helped her family bury her in Hope Hill Cemetery.

Her parents left her behind and continued on.

Vivian Mae Allison (1894-1899)

The dollhouse of Vivian Mae Allison is located in the Connersville City Cemetery in Connersville, Indiana.

Lova Cline (1902-1908)

Lova Cline’s dollhouse memorial is in the Arlington East Hill Cemetery in Arlington, Indiana.

Nadine Earles (1929-1933)

The grave of Nadine Earles is in the Oakwood Cemetery in Lanett, Alabama.

The story goes that Nadine wanted a dollhouse for Christmas. Since she died just before the holiday, her parents built her a dollhouse on her grave and filled it with her toys and personal belongings.

Complete Article HERE!

July 13, 2015July 13, 2015

Do kids belong at funerals?

By Sharon Holbrook

The same feeling socks me in the gut every time I walk into a wake or make a shiva call: “I don’t want to be here. This is sad and uncomfortable.” Then my heart and my head take over, and tell me, “You should be here. Take care of the mourners. Honor the deceased.” And that I know how to do, because I’ve been attending funerals since I was a small child.My children’s great-grandfather passed away last week at age 90. Just as surely as we took our 9, 7, and 4-year-olds to visit him (though not enough – it’s never enough), we took them in hand to Great-Grandpa’s wake and funeral.

Why?

My kids got to see their extended family at its best and closest: telling stories, crying and laughing together, holding hands. The family was a strong, united One over those days, and we were part of that One. My children belong to something bigger than our little family of five.
They have a chance to see their relatives as whole, complex people. They can learn to empathize, and to provide comfort, instead of seeing Nana only as the bearer of fun and gifts. She had a Daddy too. It was hard for my children to see her sad, but it was also inspiring to see her strength.
Children provide hope. Immediately before the funeral, we made our last prayers at the casket and gave Great-Grandma hugs. As my wide-eyed 4-year-old tumbled towards her for an embrace, Great-Grandma exclaimed, “Precious girl!” and she meant it. Sometimes we need to see something whole and young and perfect when there is sadness all around us, and that’s what a (well-behaved) preschooler can offer at a funeral.
They don’t need to be protected — usually. Kids know about crying. Many of them do it every day. Usually we want them to stop, because it’s uncomfortable for us, and we very badly want our children to be happy. But hard feelings are important too, and we can learn to guide kids through feeling sorrow and discomfort and coming out okay on the other side of those emotions. I would think carefully before bringing my children to an especially tragic funeral, perhaps one for a child or a young parent – something that could be truly frightening – but the funeral of an older relative? This sadness they can manage, and it will strengthen them.
They need practice with funerals. Nobody likes them, but they have to happen. Wakes and funerals can be foreign territory with their singular requirements for etiquette, dress, and behavior. Better to get practice early, when it’s someone the child isn’t as close to, than to layer a sea of funeral-manners confusion on top of truly deep mourning. Just a few months ago, my kids stopped with us at the wake of a quiet, kind man our family knew from church, just to quickly pay our respects. The children didn’t really know Elmer, but they learned what to do and say, and because we’d gone to his viewing, Great-Grandpa’s body wasn’t the first one they’d seen in an open casket.
In learning about death, children learn to treasure human life.My kids’ normal experience with death is throwing a dead tree in a brush pile or squashing ants on our kitchen floor. Perhaps some families also have small goodbyes for beloved pets. But the elaborate ceremony and seriousness of human funerals says something else: This is different, and this is big. We are not trees or ants. In respectful loss, we pass to children a reverence for the irreplaceable gift of each human life.
Funerals connect generations, past and future. Great-Grandpa was a World War II veteran, and uniformed Navy came to his graveside and performed a beautifully moving flag ceremony. It ended with a presentation of the flag to Great-Grandma, and the heart-stopping words: “On behalf of the President of the United States, the United States Navy, and a grateful nation, please accept this flag as a symbol of our appreciation for your loved one’s honorable and faithful service.” Afterwards, I reminded my 9-year-old that in 80 years, he will be able to tell his grandchildren the story of honoring his great-grandpa who served in that important, tragic war that will then be 150 years past. He was just as awed as he should have been by this fact.

It’s not easy going to funerals, nor taking kids to them. But it is not our job to make our children’s lives easy, and it is our job to parent and guide through the hard things too. You can do it, and so can they.

Complete Article HERE!

July 11, 2015

This Kid-Friendly Explanation Of Death Will Change How You Think About The World

By Alison Caporimo

The Sharing Place is a grief support center in Salt Lake City where children come to learn about death.

At The Sharing Place, children who have lost parents and other family members come together during bimonthly counselor-led group meetings to talk, heal, and get an understanding of what it means to die.

“I try to explain the cause of death using really basic terms that are developmentally appropriate for the child I’m speaking to,” Jill Macfarlane, development director and child life specialist at The Sharing Place, tells BuzzFeed Life. Toddlers, for example, tend to grieve in energetic bursts because they have short attention spans. Explanations usually need to be short and frequent for them to stick.

When someone dies, they’re not “asleep.”

Referring to dead animals or people as “asleep” can cause some kids to develop a fear of sleeping, and they might worry that they’ll never wake up. “Kids are imaginative thinkers, so they can run wild with the idea of why someone is gone unless you explain it to them,” Macfarlane says.

Also, it’s possible to accurately explain death without sacrificing your religious beliefs. “If you believe in heaven, you can talk about what happens to the soul,” Macfarlane says. “But we think that it’s important for the child to understand that the body isn’t working anymore — and some of them might want to know why.”

Understanding the finality of death is crucial for a child’s grieving process, according to Macfarlane

“In one meeting, I had a little boy who said that he didn’t know anyone who died, but he did know that his grandmother had a heart attack,” she says. “The parents didn’t explain that she had died after the heart attack.”

It’s worth making some distinctions between different types of death and illness.

That could be the difference between choosing and not choosing death, or between contagious and noncontagious illnesses. “We tell the children that someone chooses to murder someone else, but no one chooses to get cancer,” Macfarlane says.

She also works with kids whose siblings have died from the flu. “And while the flu is contagious, it’s important to explain that getting the flu doesn’t mean that you’re going to die,” she says. “Meanwhile, I’ll explain that Dad’s cancer or Mom’s heart attack is not contagious.”

Here’s how Macfarlane explains certain illnesses to young children:

• A heart attack is when your heart stops working and it can’t move your blood through your body.

• Kidney failure is when your kidneys — which are washing machines for your blood — stop working, your blood gets dirty, and it poisons your body.

• Overdose is when you have a sickness in your brain called addiction, it makes you take medicine that’s not good for you, and you take too much of it — but not all medicine is bad for you.

• Murder is when someone chooses to make your body stop working.

• Suicide is when you choose to make your own body stop working — and sometimes a sickness in your brain called depression can make you wish that your body would stop working.

Start talking to your kids about death as soon as possible. It’s easier to explain a dead bug than a dead family member.

“Parents might want to protect their children from the idea of dying, but death is a natural part of life and it’s important that kids understand,” Macfarlane says. When your kid starts to ask about where babies come from, it might be a good opportunity to talk simply about birth and death.

And if your child doesn’t want to talk about it, take a hint. “Some children are satisfied with a basic answer, but others might have more questions,” she says. It takes time for a child to process that someone is gone, so questions might come up over the weeks following someone’s death rather than immediately afterward. Let your child know that they can ask you anything and you’ll talk it through with them.

And if your kid asks you, “What happens if you die?” tell them that someone who loves them will take care of them.

“At a young age, kids think a lot about themselves,” she says. “If your child asks, tell them that you will try really hard not to die, but if you did, then daddy would take care of you, and if something happened to Daddy, then Grandma would take care of you, and so on.” Reassure them that they will always be taken care of.

It’s OK to say “I don’t know.”

“Parents feel like they have to have an answer for everything, but it’s OK if you can’t answer some of your child’s questions,” Macfarlane says. She recommends saying something like: “I’ve never died before, so I’m not really sure. Sometimes bodies just stop working and we don’t know why.”

You can set boundaries that still feel supportive for your child.

“If your child is talking about death with other children in a way that feels inappropriate, talk to them about a safe time and place where you can talk about it together,” Macfarlane says.

Another way to help them understand is by doing this 20-second listening exercise:

w.soundcloud.com / Via WBEZ Chicago’s This American Life: Episode #557, Birds and Bees

You can get more ideas about how to talk about death in this episode of This American Life.

To help a child grieve, be honest, open, and — most importantly — celebrate the person’s life.

Encourage your kid to start an art project or a journal entry that captures something they remember or love about the person who died.

“It’s so hard to remember things from your childhood,” Macfarlane says. “We want to help our kids preserve memories of their loved one so that they can carry those moments with them for the rest of their lives.”

Complete Article HERE!