Festival of dying: is your ‘death literacy’ lacking?

Lying in a satin-lined coffin or wearing a bondage hood may help you face up to your inevitable demise


The Sydney Festival of Death and Dying aimed to spark conversations about mortality.
The Sydney Festival of Death and Dying aimed to spark conversations about mortality.


[N]othing could evoke more gut-wrenching melancholy than Syrian musician Adnan Baraké playing the oud in a dimly lit boat shed at a festival of death. At least, that’s what I’m thinking right up until the moment a foghorn bellows ominously from some distant ocean liner, swamping us entirely in a sombre aura of doom.

It’s the opening ceremony at the inaugural Sydney Festival of Death and Dying – and it’s only going to get more macabre.

Held this past weekend, the festival was billed as three days of workshops, lectures, and performances that “do justice to the full spectrum of what is at stake in mortality”. Presented by Dr Peter Banki, he has compiled a line-up of peers such as anti-death-phobia advocate Stephen Jenkinson, designer of posthumous fashion Pia Interlandi, and president of Dying with Dignity NSW, Dr Sarah Edelman.

Together, they aim to illuminate all angles of death and dying: living with grief, dying at home, the afterlife, visions, suicide, and voluntary assisted dying, among others.

Nobody close to me has died, and my “death literacy” is lacking – I have a lot to gain from a weekend like this. In curatorial advisor Victoria Spence’s terms, I’m here to “build muscles in relation to mortality”.

Death is and perhaps always will be taboo, but it’s something we need a lot of help preparing for. Before we become a parent, we have months to get ready: we read books, we go to classes, we shop, we see a counsellor. When someone dies though, it’s often unexpected – but there are ways we can make the process easier, and they usually begin with a conversation. Or in this case, a festival.

Victoria Spence is a civil celebrant, consultant and former thespian. She begins her session – Developing Your Mortality Muscle – by explaining her objectives: to help us be aware of, and understand, our physiological responses to loss.

Death may cause us to fight, flee, freeze or submit, she says, but one response is pretty much guaranteed: shock. We react to death by abruptly drawing in breath; and in the rituals that surround death, we metaphorically hold it in. But if we’re prepared, if we learn to breathe, we can be properly present.

“When somebody dies, you put the kettle on,” she says. “That’s how you be with your dead.”

Having physical proximity with the deceased – being privy to their new smells, witnessing physical changes – activates a physiological response, changing the way we view our dead and encouraging the grieving process.

The Sydney Festival of Death and Dying allowed participants to get up close and personal with the accoutrements of death.
The Sydney Festival of Death and Dying allowed participants to get up close and personal with the accoutrements of death.

Victoria says being physically intimate with death can be crucial: bathing your dead person, or clothing them. Another way to be intimate is through language. We sit in groups to exercise our vocabulary of condolence: “I’m sorry”, “You’ll get through this”, “You will heal in time” – my phrases seem to avoid the moment, while others engage with it: “How does her death make you feel?”

Next we’re given the chance to get up close and personal with the accoutrements of death. I slink into a satin-lined coffin, and as the lid is repositioned I imagine the sound of dirt raining down on me. This experience builds no bridge to death, the same way being wrapped in toilet paper for Halloween brings me no closer to the experience of mummification. But it does make me wonder about alternative burial rites.

In another session, Dr Sebastian Job creates a simulation where participants “face the worst” ahead of time. By inflating a balloon until it bursts we experience a symbolic death, he says, allowing us the opportunity to process death anxiety and life regret. He hopes this jolts us from social paralysis into affirmative action.

Have you ever thought about what song you want played at your deathbed? Peter Roberts is a music thanatologist; he plays music for people who are at the end of their life. In this session he discusses how music can help dying people to let go – and several have during his service.

Tempo tempers breathing, and tone and timbre can quell fear, he explains; his use of vowel sounds, not words, can offer uncomplicated companionship, and provide the dying an opportunity to abandon their pain-riddled bodies and follow with their mind, travelling peacefully with the harp’s melody.


Palliative care physician Dr Michael Barbato has devoted a significant part of his life to the exploration of dreams and visions at the end of life. He believes that we overlook the mystic elements of death and dying simply because they appear too “fringy”.

He quotes a study that found up to 50% of respondents believed their dying loved one was experiencing unusual visions. The study quoted was his own – the Palliative Medical Journal refused to publish it because, he says, it was too fringy. His talk is entertaining and peppered with emotive stories, but it lacks the scientific substance I require to get into the moment.

Dr Peter Banki, the festival director, believes proximity to death can make us feel alive. He says we often use words such as pain, fear and submission when describing death. One of his workshops, Thresholds and Lust, is an intersection of both his festivals – this Festival of Death and Dying, and his prior Festival of Really Good Sex. It is designed to playfully evoke death-related emotions from willing participants.

A bondage hood is placed on my head, suffocating my senses. My partner manipulates my head and body, she runs her hands over my arms and head (submission). I can’t help but wonder what everyone else around me is doing – are they watching (fear)? The heat bakes my gimp head like a potato jacket, while my body is uncomfortably contorted on the pungent floorboards (pain). I tap out.

I’m not yet ready to yield to the vagaries of dying, whether real or imagined, by the festival’s end – but I do notice I’ve begun cultivating a relationship with death that I’m thankful for. Perhaps more importantly, I’ve also observed friendships forming, information exchanged, and future plans being made – the festival of death has facilitated the birth of a community. We are all dying, after all.

Complete Article HERE!

A united family can make all the difference when someone is dying

Siblings Elizabeth H. Moore, left, Samuel P. Harrington, Hannah H. Graziano and Jane H. Coble worked together to fulfill their father’s goal of dying at home.
Siblings Elizabeth H. Moore, left, Samuel P. Harrington, Hannah H. Graziano and Jane H. Coble worked together to fulfill their father’s goal of dying at home.

By Samuel Harrington

The blessings and curses of families are not limited to holiday gatherings, graduations, weddings and funerals. They also exist at the transition of the matriarch or patriarch from life to death.

Like many elderly Americans, my father wanted to die at home. He was clear on that point. But also like many elderly Americans, he gave mixed signals about what treatment he would accept or decline with that goal in mind.

So when at age 92 my father began his decline from aging with grace to decaying from old age several years ago, my sisters and I began creating a plan that would allow him to reach the end as he wished.

First, we reinforced his household help. Then we scheduled a series of periodic days-long supportive, reconnaissance visits. (None of us live near him.) My father told us that he did not want to be resuscitated if he collapsed. But how should we deal with a nonfatal emergency without losing him to overly aggressive care? Would it be possible, in fact, to do nothing?

My siblings deferred to me, the only physician in the group, for medical advice. My oldest sister was the first to visit his apartment in our new rotation. Knowing his desire to die at home, she was anxious about what she should do if something happened, and she peppered me with questions.

“What should I do if he falls and hurts himself?”

“If he is in pain, call 911, then call me.”

“What should I do if he seems to be having a stroke?”

“Call me. And if you can’t get me right away, call 911.”

“What should I do if he gets pneumonia?”

“Call me.”

“What if I find him dead in bed?”

“Wait until he is cold and blue, then call 911.”

“Okay. I get it.”

After digesting my responses and discussing them with our two other sisters, she typed up a plan that carefully explained our reasoning. She (or whoever was visiting) was to call for help if our father was in pain. Whoever was in attendance was not to take action about other medical problems until I had a chance to weigh in.

Most families are not as united as my sisters and I were around the concept of a painless death at home. If the opportunity for such a death arose, we would seize it. This is what his advance directive stipulated, and it is what he frequently verbalized. “I have lived too long” and “I want to wake up dead” were his mantras. We wanted to honor his wishes.

Participation in the slow decline of an aged parent comes with obligations. There are dues to be paid — for example, showing up regularly for visits, no matter how inconvenient, and taking time to check in with siblings and provide detailed updates. Teamwork, coordination and cooperation help smooth this emotion-wrought journey. When family members do not or cannot work through disagreements, the result can end up punishing the person everyone is trying to comfort and protect.

Unfortunately, my experience as a physician and hospice trustee has shown me, an odd sort of competition can crop up in these situations. Some patterns are predictable. The most common is when siblings compete to prove who cares the most. This is frequently seen upon the arrival of an estranged family member at the deathbed, and it has been described in medical journals as “The Daughter From California Syndrome.” Classically, the syndrome unfolds as the guilt-ridden newcomer urges overly aggressive treatments.

Other patterns are less predictable. In some families, a previously restrained sibling will assert dominance as the designated agent or proxy with power of attorney for health care. That one child has been designated as health-care proxy is not to be envied or taken as a sign that he or she is preferred over another.

Sometimes a financially successful sibling will dominate the decision-making, thinking that the managerial skills that built their business will now translate into medical decision-making ability.

Frequently, religious schisms will arise. I have seen, for example, one sibling’s conservative religious belief that the patient should fight on compete with another one’s new age spirituality urging everyone to “let go.”

The fault lines in decision-making that result from any of these scenarios will prolong some aspect of the dying process, usually to the detriment of patients like my father who have asked for a non-medicalized death at home.

Even though a single person (the competent patient or the health-care proxy for an incompetent one) has the technical responsibility and authority to make difficult medical decisions, the choice to accept or decline a high-risk procedure — such as heart-valve replacement or emergency surgery — is usually the result of a discussion among family members during or after a consultation with the treating physicians.

This is because these discussions most often involve a sick, weak, impaired elderly parent or grandparent and a de facto family committee. It is the rare physician who will exclude family members from a consultation and limit the discussion to the one with power of attorney. It is rarer still for a physician, in the heat of urgent care, to parse the advance directive signed by the patient specifying what they do — and don’t — want if an agitated family member is demanding action.

Doctors are most comfortable proceeding with a high-risk treatment or withdrawing life-sustaining technology such as a mechanical ventilator when the family is unified. On the other hand, if the family is fragmented, doctors are more likely to move the conversation toward, and then proceed with, what they think is “best.” Often this will be an expedient combination of what is medically acceptable, legally conservative and reflective of the doctor’s best interpretation of the family’s majority opinion, even if it defies the patient’s wishes. What the doctor thinks best will also likely be influenced by his or her own end-of-life philosophy.

I have seen many families unable to come to agreement. I have seen many patients overtreated or undertreated in defiance of their wishes. I have seen agonizing scenes of dysfunction, such as a son demanding that cardiac resuscitation be performed on his just-deceased mother. This situation occurred because the mother did not include him in her final conversation with physicians, when she changed her status from “full code” — which had instructed them to intercede if her heart stopped or she stopped breathing — to “do not resuscitate.”

Although my family was in good agreement about my father’s wishes to die at home and to take no measures to prolong his life, our tools were limited. He was not yet a candidate for home hospice — that requires a life expectancy of six months or less — and a new type of very specific advance directive (called a POLST order) was unavailable to him.

In the absence of such orders, I could think of various scenarios that would test our teamwork and resolve.

What if our father developed exceptionally upsetting symptoms such as seizures or massive bleeding from the bowels? What if he became unmanageably delirious? What if the “need” for emergency surgery arose because of a bowel obstruction or a fall with a major fracture?

Would the pain compromise his resolve to use such an acute medical problem as an “exit strategy,” a way to die naturally? Would one of us become ­guilt-ridden about our “active passivity” regarding medical intervention? At the very end, the inability to “let them go” is a common development.

Fortunately for my siblings and me, there were no dramatic decisions to make in the two years between our first family consultation and my father’s death at age 94. A year before his death, he had stopped seeing his physicians for checkups. Six months before his death, he enrolled in home hospice, and three months before the end, he stopped taking his non-palliative medications (blood pressure pills, cholesterol lowering pills, water pills, potassium supplements).

“This will be our last visit,” my father said as I kissed him goodbye and left for the airport following a 10-day visit. He was prescient. My oldest sister arrived the next day, and he died two weeks later. I was tempted to return as it was clear the final day was approaching, but there was little point. We had all said our goodbyes. We had all reconciled ourselves. The hospice nurses were visiting him daily, and he was protected, as he wished, from aggressive intervention. The eldest embraced her responsibility to care for him, and the rest of us embraced our obligation not to interfere. We were a team. We were his family.

Harrington, a retired gastroenterologist and former hospital trustee in the Johns Hopkins Medical System, is writing a book about end-of-life decision-making.

Physician Orders for Life-Sustaining Treatment, or POLSTs, are available in about 25 states.

Unlike a traditional advance directive, which expresses wishes in general and requires interpretation by emergency and hospital physicians, POLST orders are developed and signed by the patient’s primary-care physician to expand “Do Not Resuscitate” orders to include options for comfort care only or to set limitations on breathing support, feeding tubes, antibiotics, transfusions, etc. When they arrive in the emergency room with the patient, these orders are immediately implemented and require no interpretation by emergency physicians. They are appropriate for seriously ill or elderly, frail patients.

More information about POLST can be found at polst.org.

Complete Article HERE!

Immortal prose: how writers deal with death

Julian Barnes, Joan Didion, Jenny Diski, Christopher Hitchens, Meghan O’Rourke and more address life’s ultimate question



[W]oody Allen famously quipped “I’m not afraid to die, I just don’t want to be there when it happens.” This resonates with all of us who live in a culture that promotes eternal youth through scalpel or scientific miracle and cold shoulders the icy certainty of death.

Kafka stated that “the meaning of life is that it stops” while Anaïs Nin, a daily diarist, wrote that “people living deeply have no fear of death”. Freud recognised that people sometimes did express fear of death, a condition referred to as thanatophobia. Freud felt that it was not actual death that people feared as our own death is quite unimaginable, and in our unconscious we are all convinced of our own immortality. Beckett wrote that “they give birth astride of a grave, the light gleams an instant, then it’s night once more”. Joan Didion wrote that “we tell ourselves stories in order to live”.

Lately there has been much written about death, narratives and stories that aim to help us negotiate the emotional landscape of grief and death. The novelist Julian Barnes is a self-confessed thanatophobe who sometimes is “roared awake” and “pitched from sleep into darkness, panic and a vicious awareness that this is a rented world”. In his memoir on the fear of non-existence, Nothing to Be Frightened Of, Barnes writes an elegant meditation on death and attempts to address his thanophobia. As an agnostic Barnes doesn’t believe in an afterlife and writes that “I don’t believe in God but I miss him”. He believes that the Christian religion has lasted because it is a “beautiful lie… a tragedy with a happy ending”, and yet he misses the sense of purpose and belief that he finds in a Mozart Requiem or the sculptures of Donatello.

There is a trend over the last few years for a new type of fiction, a genre that moulds memoir with biography to form a literature that feels fresh and hyper-real, a type of reality fiction for the modern reader. David Shields presaged this new trend when in his 2010 publication Reality Hunger he advocated a return to the “real” in literature and he railed against conventional plot-driven fiction in favour of the lyric essay and the memoir.

A memoir of illness and dying is always an emotional read and the pages pulse with life, strife and the emotional intensity of the author’s feelings and predicament. None more so than In Gratitude by Jenny Diski, who died earlier this year of inoperable lung cancer. Diski wrote a series of essays in the London Review of Books about life after her diagnosis with its frailties and sudden fragilities which have been published as this memoir. She writes that she feared the oncologist would find her response cliched after he gave her the prognosis and she turned to her husband and suggested that they’d better get cooking the meth like Heisenberg in the television series Breaking Bad.

Diski’s talon-sharp prose has never harboured a platitude and this memoir touches on her peripatetic early life, abandoned by neglectful parents and in and out of psychiatric hospitals, “rattling from bin to bin”. She was adopted by the writer Doris Lessing for four years as a teenager and shared family dinners with Alan Sillitoe, RD Laing and Arnold Wesker and listened to late-night intellectual discussions about philosophy and psychotherapy which she describes as “a dream come true, but I had to work out how to live it”.

Diski with her unique sense of directness and humour writes that she makes an ideal candidate to play the role of a cancer patient as her lifelong favourite places are bed and sofa and she lives like one of those secondary characters in Victorian literature who constantly languish on the fainting couch. Diski described herself as being “contrary-minded”, delighted at breaking taboos and pushing boundaries. Controversial to the end, she likens having cancer to “an act in a pantomime in which my participation is guaranteed, I have been given this role ….I have no choice but to perform and to be embarrassed to death.”

Christopher Hitchens was on a book tour for Hitch 22 when he experienced the first health crisis that was the beginning of his demise. However, this pugnacious and witty writer was able to channel his experiences into his end of life memoir Mortality, which begins with the line “I have more than once in my time woken up feeling like death”. When the emergency services arrive to collect him Hitchens feels a psychogeographical shift taking him “from the country of the well to the stark frontier that marks off the land of malady”. Hitchens concedes that he has become a finalist in the race of life and quotes from TS Eliot’s Prufrock:

I have seen the moment of my greatness flicker / And I have seen the eternal footman hold my coat / and snicker / And in short / I was afraid

Hitch decided to live dyingly and extolled the consolation of friends who came to eat, drink and converse with him even as these earthly delights become impossible for him as the cancer progressed. His memoir is life affirming, punchy and rich with morbid humour, noting that when one falls ill people tend to send Leonard Cohen CDs. He doesn’t experience rage at a terminal diagnosis as he feels that he has been taunting the Reaper into “taking a free scythe in my direction” and that he has now succumbed to “something so predictable and banal that it bores me”. His wife Carol Blue in the afterword to this memoir writes of the man she admired and loved and ends with the lines that in death as in life Hitch still has the last word.

Joan Didion’s memoir The Year of Magical Thinking begins with the death of her husband of 44 years, the writer John Dunne, and brings the reader on a journey through the land of grief that she entered in the aftermath of his loss. In the opening lines of this poised but passionate memoir she writes that “life changes fast. Life changes in the instant. The ordinary instant.” She writes about the ordinary nature of everything preceding the event and writes that when we are confronted with sudden disaster we all focus on how “unremarkable the circumstances were in which the unthinkable occurred, the clear blue sky from which the plane fell.’’

Didion gives the reader an unflinching account of grief in the year when the shock of Dunne’s death “was obliterative, dislocating to both body and mind”. Despite the unshakeable reality of her husband’s death Joan’s thinking enters the realm of the magical and she writes that “we do not expect to be crazy, cool customers who believe that their husband is about to return and need his shoes”.

Zadie Smith wrote that Didion is essential reading on the subject of death and I have bought many copies over the years for grieving friends who have found comfort in its reading, recognition of their suffering in its pages.

The Long Goodbye by Meghan O’Rourke is an unstintingly honest memoir about the loss of her mother Barbara to colorectal cancer. O’Rourke is an award-winning poet and she writes about the consolation that she finds in reading Hamlet. Shakespeare’s hero holds up a mirror to O’Rourke’s own duality of emotion; emptiness and anger, despair and longing for relief. O’Rourke can understand why Hamlet, who has just lost his father, is angry and cagey. He is told that how he feels is unmanly and unseemly, his uncle greeting him with the worst question to ask a grieving person “How is it that that the cloud still hang on you?”

O’Rourke felt a resonance with Hamlet in her grief state when she felt that to descend to the deepest fathom of it would be unseemly and was somehow taboo. She writes that nothing prepared her for the death of her mother, even knowing that she had terminal cancer did not prepare her. There is a stark unearthing of truths in this memoir. “A mother, after all, is your entry into the world. She is the shell in which you divide and become a life. Waking up in a world without her is like waking up in a world without sky, unimaginable.”

Doctors face death daily and Dr Paul Kalanithi became a neurosurgeon because with its unforgiving call to “perfection, it seemed to present the most challenging and direct confrontation with meaning, identity and death”. When Breath Becomes Air opens with a description by the author of a CT scan that he was examining where the lungs were matted with innumerable tumours, the spine deformed and a full lobe of the liver obliterated. This scan, though similar to scores of others that he had examined over the previous six years, was different, different because it was his own. Kalanithi wrote his memoir in the aftermath of this discovery, fusing his medical knowledge with his love of literature to produce a work that is more than a memoir: it is a philosophical reflection on life and purpose. Kalanithi and his wife have a baby Cady who was eight months old when her father died. His memoir will be his legacy to his little girl as “words”, he writes, “have a longevity I do not”.

The Iceberg: A Memoir by Marion Coutts tells of Coutts’ partner Tom Lubbock’s death from a malignant brain tumour. This account of illness and decline is told with an artist’s eye and in poetic prose that is both razor sharp and suffused with emotion. Coutts writes that there is a filmic quality to their life. A friend suggests that the director is Bergman, “shot flat without affect but deeply charged, with a fondness for long shots, no cuts, ensemble scenes, dark comedy and the action geared always to the man in the bed even though he is frequently off camera.”

Death is the inevitable full stop in the essay of life. Christopher Hitchens quotes this poem by Kingsley Amis in his memoir Mortality: Death has this much to be said for it/ You don’t have to get out of bed for it/Wherever you happen to be/ They bring it to you – free.

The writer Katie Roiphe wrote The Violet Hour: Great Writers at the End in part to sate her curiosity about death and dying. It is an account of how the writer found beauty and comfort in the stories of how her literary heroes faced up to dying. For Roiphe religion has never been consoling and feels like a foreign language. She, like many book lovers finds comfort in novels and poems. As a child recovering from serious illness Yeats’s Sailing to Byzantium resonated with her. She becomes ambushed by the beauty in the deaths of her literary heroes, Dylan Thomas, Susan Sontag, Freud and Maurice Sendak. Sontag “fought her death to the end, believing on some deep irrational level she would be the one exception”.

Roiphe feels that writers and artists are more attuned to death, that they can put the confrontation with mortality into words in a way that most of us can’t or won’t. The last taboo has been dealt with by memoirists, essayists and poets. If, according to FR Leavis, literature is the supreme means by which you renew your sensuous and emotional life and learn a new awareness, then these publications are a gateway to enlightenment.

Complete Article HERE!

Life after loss

Support group helps widows rebuild their lives amid grief

Alice Bishop, left, of Toledo, shares a story while laughing during a support group for widows.
Alice Bishop, left, of Toledo, shares a story while laughing during a support group for widows.

For more than 45 years, it had always been “Edward and Anna.”

People who knew the Toledo couple James Edward and Anna Jones knew them together. But that all changed on Valentine’s Day, 2008, when Mr. Jones died from diabetic complications. Ms. Jones’ grief was so powerful and present that she cannot recall the days that followed his death.

“After his death, for a year I was looking down on the world instead of living in it,” she recalled. “I don’t remember anything from a year after he died. My children said I did stuff and I have no recollection of it.”

They were married 47 years.

She had her family and dog to lean on for various types of support; but not everyone has a big support system. Sometimes widows need more than friends and family: They need someone after everyone has gone home, someone to take their call in the middle of the night or help them clean their house, someone to teach them how to handle the home finances. They may need skills to compete in the job market. They may need a group that keeps them active in life and the community.

Those needs that go beyond emotional support were recognized by Toledoan Marian Idell Watson. She applied her gift of making friends wherever she goes and being a confidant to women to create W.E.S. & I, Widows Empowered Strengthened & I.

W.E.S. & I is a support group for widows named after Mrs. Watson’s husband, Wesley J. Watson. An officer with the Toledo Police Department, he died in 2014 from complications of a liver transplant.

Mrs. Watson called upon her friends, like Ms. Jones, to move her vision of the organization forward. The group was incorporated in 2015 and meets monthly. Mrs. Watson and volunteers are building a community to support widows, assist them in accepting loss, and encourage them to move forward in all aspects of life.

Mrs. Watson was inspired by a revelation she had nine years ago.

“She called me and told me she had a vision; the Lord had given her this vision of the widows club, and she wanted me to be a part of it,” Ms. Jones said.

Mrs. Watson wants to help widows while also contributing to the community.

“We can encourage the widows and lift them up. If they have gifts within themselves, we can encourage them to get back up, to get back to work,” Mrs. Watson said. “It’s not just about widows.”

She and the volunteers are already living by example. Ms. Jones is part of an advisory board charged with reaching out to community leaders and building relationships with sources that can assist widows in the long-run. 

Ms. Jones is a retired business professional. She was an employment supervisor for Owens Corning for 24 years and is familiar with labor laws because of her prior experience working at the Civil Rights Commission. She will apply those professional talents to assisting widows with job searches.

“Helping is healing,” Mrs. Watson said.

Mrs. Watson knows about the dangers of being stuck in sorrow after a significant other’s death. After her husband died, a friend implored her to accompany her to Arizona. Her friend, Teresa Evans, was suffering from a fatal illness, and the trip was helpful to both.

“I had to still continue to help someone else. It helped me heal. It sort of filled a void,” she said. “Whereas I would have been home probably sitting on the couch, or probably alone crying and feeling lonely.”

Ms. Evans died in 2015.

Widows Josephine Cleaves, left, and Aleada Whitehead, right, both of Toledo, hug each other during a support group for widows at Reynolds Corners Library.
Widows Josephine Cleaves, left, and Aleada Whitehead, right, both of Toledo, hug each other during a support group for widows at Reynolds Corners Library.

Following her husband’s death and that Arizona trip, Mrs. Watson was in deep grief and searched for a support group that provided more than mental or emotional assistance. She wanted something hands on. She did not find it, so she created it.

“I didn’t want to go to hospice. I didn’t want to sit in a group where people would pour out their feelings and cry. I wanted to be in a group where we could rise above that pain,” she said. “That’s what I needed. I knew that’s what I needed and I know that’s what God wanted from me.”

The first group meeting was attended by 12 women. Now about 25 to 30 women attend each session. W.E.S. & I is open to all, regardless of faith or background. Mrs. Watson plans to eventually create a group for widowers as well.

As Mrs. Watson has learned, widows are all around us, and after the funeral and burial services are complete, many are forgotten.

“They just come. They are just here. They are just hurting,” she said.

Dr. Tufal Khan, chief medical officer at Mercy Health’s Behavioral Health Institute, has provided psychiatric care to many people, including widows. During a phone interview, he cited the 2011 U.S. Census, which found “in the age group 65 and above, 40 percent of the females are widows. In that population it is [only] 13 percent males.”

He said the ages of his patients vary.

“The main thing is getting adjusted to the new life without their spouse. … It is a big change. Basically your whole world changes,” he said.

The timing of the grief process is dependent on how someone died. For example, in dealing with a loved one’s terminal illness, where death is expected, the grief process begins while the loved one is still alive.

“You start grieving beforehand, as opposed to someone with an unexpected or sudden death, after the death you start grieving,” he said.

Grief presents itself in multiple ways, he explained. The reaction to loss could include emotional components of sorrow, anxiety, loneliness, guilt, and anger; physiological symptoms which could affect sleep and appetite; cognitive signs such as problems with attention, decision making; and behavioral changes, such as withdrawal, loss of interest, or hopelessness.

“We say that loss is forever, but grief is not. It definitely takes time to adjust to a new life without your spouse, but you need to put your life back together,” said Dr. Khan, adding that helping others does help one to heal.

He typically recommends starting with the basics. 

“Take care of yourself. Take care of your diet, exercise, sleep, go out with your friends, or spend time with family. If you don’t have family or friends, find a grief support group, because talking your way through grief helps,” he said.

He said a group like W.E.S. & I can help widows put their lives back together. W.E.S. & I also emphasizes social assistance to widows, planning fun events like dinners and bowling; a world cruise may be in the future.

The psychiatrist said it is important to identify the difference between the normal grieving process and complicated grief, which would require the care of mental health practitioners in addition to support groups. 

Complicated grief typically is when someone has a pre-existing psychiatric disorder or condition, compounded by a tragic loss. The person may already be diagnosed with post-traumatic stress disorder, bipolar disorder, or major depression.

It could also include someone who suffers a prolonged grief process where loss of appetite and sleep begin to affect physical health. A complicated grief may also include someone who cannot return to work after a reasonable amount of time. Medical attention is needed in that situation.

The degree to which the grief affects a person depends on many factors, Dr. Kahn said, including the role of faith in their lives. He said they should eventually be able to move forward without any setbacks.

“But a group like this will help them get on their feet and will help them be functional and reintegrate into their normal lifestyle,” he said.

Complete Article HERE!

A father learns how to live after loss

By Adrienne Wichard-Edds

Neal and Jennifer

On Feb. 24, 2014, 39-year-old mom of three Jennifer Bush-Lawson was hit by a truck that was passing too close to her parked minivan; at the time, she was buckling her toddler into her car seat outside her oldest child’s elementary school in Arlington, Va.

This horrific event caused an entire community to catch its collective breath and catalyzed a network of friends, neighbors, family and co-workers who had all been touched by Bush-Lawson’s gentle and generous spirit. But it was her husband, Neal Lawson, suddenly a widower with three young children at the age of 41, who had to shoulder the burden of every family’s nightmare.

For the past 2½ years, Lawson has been managing his own loss and grief while balancing the emotional needs and daily schedules of his growing children. When I ask Lawson how he’s been able to get through the unthinkable while still being present as a dad without just throwing his hands up and saying I quit, he laughs at my perception. “Sometimes you do just throw your hands up — but not for long.”

From a position of experience and wisdom he’d never hoped to have, Lawson shares his thoughts and advice on dealing with profound loss — whether managing your own grief or helping a friend through a particularly tough time.

Don’t be too proud to ask for help. “It sounds like common sense, but it’s harder to do than you realize,” admits Lawson. In striving to keep a sense of normalcy in his children’s lives, Lawson says he leans heavily on friends and family for everything from sports and birthday party car pools to last-minute child-care favors. And shortly after the accident, Lawson’s parents moved in with him and his children for nearly a year; his in-laws are frequent visitors.

“I can’t do everything,” says the full-time tech entrepreneur and single dad. “Even when there were two of us, we couldn’t do everything.” He prioritizes his kids’ busy schedules by continually asking himself: When do I have to be there? When would it be good to be there? And when is it okay to let someone else help me with that? “You’re actually doing better for the kids by shoring up your support system with friends, family and child care so that they can continue to live as normal a life as possible without a mom. They still need to play sports, have play dates, be reprimanded and be enriched.”

Be practical. In the wake of tragedy, everyone wants to drop off food, but there are many ways to help take daily stresses off a grieving family’s plate. “One family gave us paper goods,” remembers Lawson. “It seemed odd at the time, but we used every bit of it and were thankful when we didn’t have to worry about doing the dishes.”

Sites such as SignUpGenius or SignUp.com (formerly VolunteerSpot) help organize the supporting community and allow people to sign up for things that are most needed: play dates for kids, rides to doctor’s appointments, grocery store runs. A close friend or family member can set up and monitor the activity so that it doesn’t need to be managed by the grieving party. And when friends do drop off meals, consider requesting that they be delivered to a neighbor’s house to avoid awkward invasions of privacy or bad timing.

It’s okay to say no. Not every offer of help is actually helpful. “Everyone wants to help, but people can’t always appreciate other factors that may make their timing less than ideal,” Lawson says, graciously. “Don’t be afraid to turn down an offer if it’s not helpful at that time.” But, he adds, let that person know that you appreciate their offers of help, even if their timing isn’t spot-on.

You can also say “no, thank you” to an offer to help but suggest another way or time in which you might need assistance. For example, maybe you don’t need dinner delivered because your freezer is overflowing with lasagna, but it might really help you to have someone walk your dog while you’re at your kids’ soccer tournament.

Create something good. As a way to honor Jenn’s life and work through his own grieving process, Lawson and his family members founded the Jennifer Bush-Lawson Foundation, which helps economically vulnerable mothers and infants get access to lifesaving pre- and postnatal care.

“This is a matter that was near and dear to Jenn’s heart,” her husband explains. All three of Bush-Lawson’s pregnancies were complicated, and all three of their children were born prematurely. “We had given to organizations that supported those needs in the past, but establishing this foundation in her name was a way to formalize the legacy of her generous spirit.”

This Saturday, Nov. 19, 2016, the foundation will host its second annual 5K and family fun day. “This is also a way for the kids to get involved with carrying on their mom’s memory. In the weeks before, we hand out fliers to neighbors on the race route, we put out yard signs, the kids ask to ‘train for Mommy’s race’ with me. It gives them opportunities to ask questions and talk about Mommy, and it’s a positive way to keep her memory alive.”

Be a great listener for your kids — and don’t shy away from answering tough questions. Lawson points to fostering open communications with his kids as probably the most important thing he can do for them. “I don’t ever want them to feel like they can’t come to me with questions. I answer them honestly, but in a way that won’t scare them,” says the single dad. “I want to give them a safe space where they can talk about anything from having a sad or emotional time to telling me that they’ve done something wrong. I still want them to understand that actions have consequences, but that actions accompanied by ownership and accountability can lead to a less severe level of consequences.”

Lawson credits modeling that behavior himself with helping him establish the groundwork for open communications with his kids — stepping out in front of his emotions, for example, or saying, Hey, I made a mistake when I came home after a bad day at work and blew up at you, and I shouldn’t have, and I’m sorry. “It’s so important that they be able to trust me,” says Lawson. “Because they’ve only got one parent to go to, they need to be able to go to that parent.”

Understand that you will always be grieving but that the grieving process will change over time. Grief doesn’t have an expiration date, notes Lawson. “It’s important to acknowledge that it will constantly be part of our lives, and that it will come and go in waves — and that’s okay. You need to observe it, listen for it, and put the resources and tools in place to get through it.”

Lawson also says he’s discovered that the grieving process changes as his kids mature. He compares it to reading “Harry Potter” at age 5 and then again at age 12. “The kids are going to understand it in a lot more depth at age 12,” he observes.

Keep traditions alive, but allow them to evolve. Every year, the Lawsons spend the holidays in Colonial Williamsburg as a family. “That’s a tradition that won’t change,” says Lawson. This year, however, they skipped their traditional fall trip to the pumpkin patch. “I really wrestled with this,” Lawson confesses. “I was thinking Jenn would have taken these kids pumpkin-picking, but we just didn’t have time.” Instead, they grabbed pumpkins from a nearby shopping center and spent the day carving them. “We ended up having a blast. And in some ways” — and here Lawson chokes back tears — “maybe it allows them to hold on to the memories that they have of their mom even more.”

If it doesn’t serve you, let it go. I asked Lawson if the nature of his wife’s accident influences the way he protects his kids. He admits that while he dealt with bouts of anxious fear at first, it wasn’t long before he realized they couldn’t live their lives in a bubble.

“I try to focus on the things I can control and make the best decisions I can along the way. Just like Jenn — she didn’t make any bad decisions that day. It wasn’t her fault. It was just a terrible, terrible tragedy.”

Lawson says that his faith has helped him through much of the past two years but that not having any lingering hate or anger has also helped keep him more even-keeled. “At some point I was even questioning why I didn’t feel angry, but really I was just so thankful that I didn’t. It could have taken me down a completely different path.”

Lawson also quite intentionally chooses how to focus his energies. “If I decided to live in fear, anger or hate, it wouldn’t make anyone any better, and it certainly wouldn’t create an atmosphere where the kids could thrive. I focus on the positive and draw energy from things that will lead me to an uplifting place.” Here he pauses, as if in gratitude, then continues: “I think if you choose other emotions to dwell on, they’ll redouble themselves. I try to be purposeful in the ones I choose to focus on and then ride the others out.”

Complete Article HERE!

Q: How can I learn more about advance directives/advance care planning?

Cecelia Clayton, MPH, is the executive director at Karen Ann Quinlan Hospice.

Q: How can I learn more about advance directives/advance care planning?

Cecelia Clayton

A: During National Hospice Month it’s important to know your options. All adults can benefit from thinking about what their health care choices would be if they are unable to speak for themselves. These decisions can be written down in an advance directive so that others know what they are. Advance directives come in two main forms:

Proxy Directive (Durable Power of Attorney for Healthcare)
A proxy directive is a document you use to appoint a person to make healthcare decisions for you in the event you become unable to make them yourself. This document goes into effect whether your inability to make healthcare decisions is temporary because of an accident or permanent because of a disease. The person that you appoint is known as your “healthcare representative” and they are responsible for making the same decisions you would have made under the circumstances. If they are unable to determine what you would want in a specific situation they are to base their decision on what they think is in your best interest.

Instruction Directive (Living Will)
An instruction directive is a document you use to tell your physician and family about the kinds of situations you would want or not want to have life-sustaining treatment in the event you are unable to make your own healthcare decisions.

You can also include a description of your beliefs, values, and general care and treatment preferences.

This will guide your physician and family when they have to make healthcare decisions for you in situations not specifically covered by your advance directive.

Advance Directive: Your Right to Make Health Care Decisions
You have the right to:

  • Ask questions about your care.
  • Completely understand your medical condition.
  • Accept or refuse any treatments.
  • Make future decisions by completing an advance directive.
  • If you have a life-limiting illness — you have the right to choose the hospice of your choice.

Karen Ann Quinlan Hospice has ready-made packets with current Living Will information available at no charge. The packets can be picked up at the desk at the hospice office at 99 Sparta Ave, in Newton, or call the hospice at 973-383-0115, or at 800-882-1117 to have one mailed to you.


Free seminar

More information will be available at the “Ask An Elder Law Attorney” seminar that will be held from 10:30 to 11:30 a.m., Dec. 8 at the Pike County Public Library in Milford, Pa.

The event is free to the public and light refreshments will be served.

Attendees will be able to ask questions about elder care, estate planning, living trust, last will and testament, advance directives and more. For more information, visit www.KarenAnnQuinlanHospice.org/Seminar.

Here is a checklist to consider to plan ahead or if you need help now.

  • Get the information you need to make informed choices about end-of-life care.
  • Get to know end-of-life care services that are available, such as hospice and palliative care providers.
  • For information, visit the National Hospice and Palliative Care Organization’s website: www.nhpco.org
  • Discuss your thoughts, concerns and choices with your loved ones.
  • Talk to your doctor about different treatments.
  • Establish advance directives (a living will and medical power of attorney) for your state.
  • Talk to your healthcare agent, family and doctor about your choices.
  • Discuss your choices often, especially when your medical condition changes.
  • Keep your completed advance directives in an accessible place.
  • Give photocopies of the signed originals to your healthcare agent, alternate agents, doctor, family, friends, clergy and anyone else who might be involved in your healthcare.
  • Assess your financial situation, create a financial inventory and determine what end-of-life goals you want to accomplish that involve money.
  • Learn about the cost of end-of-life care, how medical bills and expenses will be paid for if you are not able to.
  • Make financial decisions such as how you want to give your money and possessions to others upon your death.
  • Prepare for the time when you cannot handle money matters; appoint a durable power of attorney.
  • Plan your funeral/memorial service.

The living will is a direct result of the Karen Ann Quinlan landmark case won by Joseph and Julia Quinlan in 1976 on behalf of their daughter, Karen Ann.

Complete Article HERE!

Hospice nurse Renee Beccue helps ease patients’ last days

Hospice care provides a team of physicians, nurses and other professionals to help manage the spiritual and emotional aspects of end-of-life care.

Renee Beccue

Renee Beccue helps ease the process of dying.

She is an on-call registered nurse with Lower Cape Fear Hospice in Wilmington. Beccue, originally from Buffalo, N.Y., had primarily worked in intensive care units with burn patients.

She had accompanied doctors when they announced deaths of patients to their families and saw that this experience could allow her to transition into hospice nursing.

“Hospice and palliative care is a growing field,” said Beccue.

Part of what hospice care provides, is in-home equipment for patients, such as hospital beds, so they can spend their last days in the comfort of their own home. There is also a team of physicians, nurses and other professionals to help manage the spiritual and emotional aspects of end-of-life care.

And while hospice doesn’t provide in-home, around-the-clock medical care, it does have providers on call to help manage medical needs.

That’s where Beccue comes in.

Beccue doesn’t have a fixed caseload of patients, but she receives calls at night when hospice patients are in need of medical care that the family or caregiver feels is outside their capability. Beccue travels to a few counties for on-call needs, including Onslow and Pender as well as New Hanover.

The calls she receives can be anything from discussing fall prevention to pronouncement of death. Part of the medical care received in home is to help the patient remain in the home with fewer trips to the hospital.

“We try to prevent readmission to the hospital,” Beccue said.

Her care as a hospice nurse is twofold, therapeutic listening and education. Education consists of teaching the family or caregivers the basics of caring for a sick person who will continue to decline. Beccue calls this the “palliative care mindset, not curative.”

She teaches the family to change the bed and bathe the patient while he is still in the bed. Beccue says the care needs of hospice patients are constantly changing because they continue to get sicker. She also teaches the family what they can expect to see from the patient depending upon his disease.

Beccue also helps patients understand what they are experiencing. She consoles them and emphasizes the importance of “judgment-free” care as a hospice provider. Beccue realizes that many people are not familiar with the medical terms being used and she sincerely tells families and patients to call her with any questions.

Beccue primarily tends to the patients’ medical needs, but in the process of dying, people often work through a life review. Many patients do not truly grasp their prognosis for a variety of reasons until Beccue arrives at their home. She sometimes helps patients face the truth that she has been assigned to them because they have a prognosis of six months or less left to live.

“That’s when they cry,” Beccue said.

She tries to be the voice of reason and help them to understand that the feelings they are experiencing are normal. She can assist with adjusting medication when anxiety is overwhelming and to help mitigate physical pain.

Beccue says it’s important to allow patients to feel. “You can’t make a stage 4 diagnosis nice,” Beccue said.

She has seen patients move through bitterness, anger and unresolved issues and hospice does provide social workers to help counsel the patient through that process.

While death is frightening for many people, Beccue sees it as a part of living. And death isn’t all scary and sad. Many times she turns on music for patients, helps them sit by their favorite window and watch the birds they’ve enjoyed their whole lives. Also, the presence of beloved pets is important to comforting patients.

Some patients want to sit and look at the garden they worked in for years. Beccue says one patient asked to sit by the window and watch the golf course every day.

After years of being with hospice patients Beccue has learned a few tips about working with the dying. She recommends being upfront and honest about prognosis, allowing honest feelings about that prognosis and ultimately finding peace and joy in death, which is the ultimate rite of passage for all of us.

Complete Article HERE!