I help terminally-ill parents leave stories behind for their children

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Working with cancer patients makes me more determined to experience all that life has to offer, but sometimes the pain is more than I can bear

By Rachel Smith

Rachel Smith
‘I love to swim in the sea all year round – it makes me feel acutely alive.’

We all have an idea of how life is going to be, but mine has changed radically in the past seven years. I work on a project for children whose parents have cancer, helping them understand the illness and supporting them when their parent dies. I also support parents to communicate with children and, when the prognosis is not looking positive, I help them write books and letters for the family they are leaving behind.

I spend months, sometimes years, getting to know a family and then one day while going about my daily life I will receive a text, often early in the morning saying “he slipped away at 4am” or “Rachel, he’s gone”. Over the past seven years I have experienced so many losses in my work. I try to remain emotionally separate, but I am human, a compassionate human, and it hurts every time. Often I check my work phone just before doing the school run. I drive my two young children to school and then cry as I go on to work. It is not the same gut-wrenching loss as that of a personal loved one, but silent tears in the knowledge that a family’s world has shattered.

As I arrive in work, all the normal things are happening. People in the kitchen are talking about diets, referrals for new families are coming in and I am trying to fathom how I can fit a funeral into my week if the family need me to attend. I often get told by families that I’m the one who remained real throughout everything, and I don’t want to let them down at the end.

When working in end-of-life care the level of intimacy with someone changes completely. Time becomes the most precious commodity and communication is honest. To be able to give someone the chance to convey their dreams is an honour, but it takes its toll.

Recently, a gentleman I worked with died. I had known his family for six years, Ifilmed his eulogy and hours of footage for his family. The magnitude of life and death suddenly hit me. I felt I had reached a limit of sadness and could not take any more. I needed time to think, to feel alive again and to be surrounded by life.

In this job there is no place for burnt-out heroes or martyrs. We all have a limit and I felt like an empty cup. I find that to cope I need to strip life back: I want to feel the world around me, the rain falling on my face and be in places of natural beauty. I need to be with people I love, who understand my job without needing to talk about it. Talking is exactly what I don’t want to do; I want to laugh and be outside. I love to swim in the sea all year round – it makes me feel acutely alive.

When recording books with people a common plea I hear is “I have no regrets, I just wish I had more time”. So I create time in my own life; I breathe, love, hug and do all those clichéd things so that I can go back into work and be useful again. I refill my cup. I think that when working in such a profession, at times we need to bend the boundaries to be human and to understand that is what people need. It is ok to be hurt and show hurt, to put your hands up and say I need a break, I need to go and breathe for a while.

To finish, I shall leave you with words by Fiona, who wrote this for her three children two weeks before she died.

“You are meant to be here. I believe that although I wanted to be here and share your life: the ups and the downs. God needs me elsewhere and you have to stay on Earth. Be a good friend and surround yourself with good friends. You don’t need to be the most popular one, the most strong or the most clever. But always be a good friend to those around you.”

Complete Article HERE!

Everything you ever wanted to know about death but were too afraid to ask

By 

When Ally Mosher’s​ grandfather died, the experience was far from peaceful. His death in hospital after a series of strokes was “chaotic and traumatic and something my grandmother knew she didn’t want for herself”.

After clearly expressing her wishes, Ms Mosher’s grandmother Margaret Butler died quietly at the age of 94 last month. She was in her own bed, in comfort and surrounded by close family members.

“Knowing what she wanted made it a lot easier for us,” Ms Mosher said. “We knew she wanted us to be there when she passed and my mum was holding her hand. It sounds like an odd thing to say but it was a perfect death.”

Ally Mosher, whose grandmother died a few weeks ago, is learning how to deal with bereavement in a positive way.

While we are familiar with the idea of living well, the idea of dying well is relatively new but one gaining momentum in the wider community.

Ms Mosher, a graphic designer from Hazelbrook, uses her own experience to promote “death literacy” although she admits not everyone is comfortable with the subject.

“There is a social stigma about death,” she said. “You can’t talk about death in a healthy, positive way. If you are talking about death you must be weird or morbid.”

Community group The Groundswell Project has spent the past five years creating wider awareness about dying to help overcome reluctance to address the issue.

The group has come up with 10 things people need to know about death, with workshops on the topic to be launched in conjunction with Dying to Know Day on August 8.

The Groundswell Project’s director, Kerrie Noonan, a clinical psychologist specialising in palliative care, found most people sought practical advice about death.

“People really wanted more information about the nuts and bolts stuff,” she said. “What do I need to tell my family? How do I approach the subject with them?”

A report by The Grattan Institute published last year found found that dying in Australia was more institutionalised than the rest of the world, with the majority of people dying in hospital or a residential care facility.

“We’re not around death,” Ms Noonan said. “Death is removed; it takes place in a hospital or a hospice. We don’t have a context for having conversations about death.”

Things to know before you go:

1. Make a plan. Fewer than 5 per cent of people have an end of life plan.

2. Write a will. Only 55 per cent of people who die have a will.

3. Tell someone what you want. Of those who know they are dying, only 25 per cent will have spoken to their families about their wishes.

4. Only 30 per cent of deaths are unexpected. Make a decision about how you want to die while you have time.

5. Doctors don’t die like the rest of us. They are more likely to die at home with less invasive intervention at the end of their lives.

6. Earlier referral to palliative care means living longer with better quality of life.

7. You don’t need a funeral director. DIY funerals are becoming more popular.

8. The majority of Australians choose cremation but there are alternatives including natural burial, burial at sea or donating your body for research.

9. We don’t grieve in stages. Only 10 per cent of us need professional support after a death.

10. 60 per cent of people think we need to spend more time talking about death.

Read more: http://www.smh.com.au/nsw/everything-you-ever-wanted-to-know-about-death-but-were-too-afraid-to-ask-20150730-gij35d.html#ixzz3hNlfhyTU

Complete Article HERE!

I’ve Been There For Hundreds Of Dying People — Here’s What I’ve Learned

By 

Over the past six years, I have watched hundreds of people transition from life to death ­— sitting with them in hospice care or in the comfort of their own homes as they sometimes peacefully, sometimes painfully, drew their last breaths. This was my commitment as a hospice volunteer: to support as many individuals as I could in the dying process. This role is becoming increasingly popular as society lifts the veil of silence that surrounds death.

My path to this calling was unexpected. When I met Coop a little over a decade ago, I was 18, fresh out of high school, and eager to explore what early adulthood was like. I didn’t know then that the redheaded flight attendant and comedian would become my first love — and my first great loss. Our first date began with a disclosure. “I have stage-four lung cancer and it is likely terminal,” she told me. Mesmerized by her presence, I decided to overlook that minor detail. Her fiery hair was intact, she laughed like a courageous hyena, and she was spunkier than anyone I had ever met. I told myself that she was going to be just fine.

We proceeded to get to know one another, though we did things slightly differently than the norm. Instead of going to the movies, we watched movies in the chemotherapy wing of the hospital. Our sleepovers were often spent cuddled up on a hospital bed; we proved two people could fit. Aside from the needles and nausea, we were just two people falling in love.

Frightened by the situation, friends would ask, “How can you do this, fall in love with someone who is dying?” My response was unrehearsed and rather simple: “We don’t choose who we fall in love with. It just happens.”

It definitely happened.

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As I became well-versed in cancer lingo, I slowly morphed into the caregiver for a declining middle-aged woman — who was also my lover. From a radical acceptance of the situation on a Monday to kicking and screaming resistance that Wednesday, we rode the emotional end-of-life roller coaster together. Coop’s wild ride in this life ended on December 7, 2008. My heart broke that day: the day I began my solo ride.

Weighed down and often immobile in a deep pit of grief, my raw heart ached for her return. I was clueless about loss, but I managed to reach out to a local hospice that guided me to their bereavement team. A very caring social worker and chaplain showed up at my door just a few days later. She offered a presence that I was desperately hungry for. The most important gift she gave me, however, was her willingness to listen. I have come to understand now that listening is the most powerful gift you can offer someone who is grieving. Most people feel like they have to fill the space with words, but open space is what gives the other person permission for grief, praise, and healing.

During our meeting that day, the social worker planted a seed. “I don’t normally say this to people who are in your position,” I recall her telling me, “but I feel that once you have healed some, you may consider involving yourself in hospice.” I barely heard her at the time, but after a while, I returned to her words again and again.

Two years after Coop’s death, I found myself volunteering for a hospice organization. A patient I saw frequently brought me an immense amount of healing. Her name was Leslie, also the name of my mother. Diagnosed with schizophrenia and 48 years old, Leslie was actively dying with no family or friends to support her. I will never forget the day I went into her room, expecting to see her frail in bed, when to my surprise, she jumped up, turned the radio on, and danced all around the room. Although she was dying, her spirit soared. I learned a valuable lesson that day: Though someone may be dying, their soul remains whole.

I was blessed with the gift of being with her just moments before she died. I watched the thrombosis in her neck and massaged her feet, which were slowly losing circulation. Most importantly, I let her know that it was safe to let go.

About a year later, my best friend, Sreeja, took her own life. Grief pierced my heart once again and a lot of my old wounds reopened. It was a pivotal point in my life — the moment I made a choice that would change its course. I realized that Sreeja, Coop, and Leslie were catalysts in my life, pushing me to get as intimate as possible with love, spirituality, and death. After Sreeja died, instead of fighting death, this time I welcomed it. I invited it in as a guest. I offered it a cup of tea. Stretching my broken heart open, I discovered that my passion and work in this world resides in end-of-life care and advocacy, in helping people understand and embrace their mortality.

When we have the willingness to truly acknowledge death, we open ourselves to become that much closer to life. As an end-of-life advocate, death has become my way of life. I believe it is meant to break us down, because in the rebuilding, we have a critical decision to make: Can we be open enough to allow the loss of loved one or our own mortality to transform us?

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At the end of last year, I established The Conscious Dying Network, an organization that offers retreat-style workshops and an annual summit on topics of conscious dying, aging, caregiving, and grief. We have a network of teachers and end-of-life pioneers and the message at the core of our work is that we will all die. We don’t know exactly how or when, but we can be 100% sure it will happen. The work, then, lies in getting comfortable with that information, working through our fears, and asking what this truth has to offer each of us in our day-to-day living.

Though they were always painful, over time, my reactions to death morphed from anguish to acceptance. Yes, there was still an ache, but it was accompanied with a bittersweet truth: We will all die. My friend Maitreya has a saying, “Good people die, sick people die, healthy people die, bad people die — we will all die.” She’s right. None of us know when we will go, and it is this moment-to-moment uncertainty that leads me to follow my current path — of reimagining how we approach death — in whatever moments I do have here.

My intention is to continue bringing awareness and presence to the bedsides of those who are dying and those who are living. We will all take the same grand leap one day. Life and death are not separate, but all part of the same journey — and when we find appreciation for the beautiful gift that is our own mortality, we discover that life can be good again after the loss of a loved one. I am living proof.

Complete Article HERE!

We need to talk about death

After cancer returned for a third time David (known as DD) and his family decided to forego further treatment and enjoy life, his mother Sacha Langton-Gilks is keen for other families to think positively about end-of-life preparation and talk of a death plan as we do for a birth plan

Sacha Langton-Gilks’ 16 yr old son David (known as DD) who died of a brain tumour in 2012
By Ruth Wood
It might sound shocking when Sacha Langton-Gilks describes her teenage son David’s death as “absolutely fabulous.” But as his story emerges, it makes perfect sense. David, known as DD, was diagnosed with a brain tumour in 2007 at the age of 11. Over the next five years he endured 20 months of chemotherapy, six weeks of radiotherapy and 11 brain operations – an experience his mother says was a “living hell” for her son.

Then in May 2012, the cancer re-appeared for the third time: it was clear he could not be cured. People advised the family to stay positive and try everything to keep DD alive. However, the teenager and his parents decided to be positive in a different way: by rejecting the powerful medication that might prolong his life by a very short time, and by focusing on enjoying the time he had left.

Sacha Langton-Gilks with husband Toby, son Rufus (17) and daughter Holly (12)

“He’d already suffered high dose chemotherapy and it hadn’t worked,” says his mother. “Rather than trying to prolong his life with all that entailed, we chose maximum quality of life in a shorter time because that was right for our child.”

Mrs Langton-Gilks 47 who lives near Shaftesbury, Dorset, with husband Toby and children Rufus, 17, and Holly, 12, says that without doubt the way her son died “is going to be the single biggest achievement of my life. Instead of going back and forth to hospital hoping he was going to be cured and putting him through more suffering, we focused on keeping him calm and comfortable at home.

“He had a stonkingly good party with all his friends. But mainly we just chilled out and kept things as normal as possible.”

David died three months later at the age of 16. His last lucid words were “I love it here”.

David (known as DD), lying in front, at his final party

Mrs Langton-Gilks is keen to help other families think positively about end-of-life preparation and in May gave a powerful talk about her son’s death at an event for parents run by the Brain Tumour Charity[www.thebraintumourcharity.org/dyingwell]. She is part of a growing movement of professionals, carers and patients who say we should approach death the same way as we do that other universal rite, birth – with ante-mortem classes, groups and end-of-life midwives.

“You wouldn’t dream of giving birth without some idea of what to expect and a birth plan” says Mrs Langton-Gilks. “Yet we face death with no equivalent preparation. We need to get to the point in society where it is as acceptable to talk about a death plan as a birth plan.”

Hermione Elliott agrees. In 2011, the midwife and palliative care nurse founded Living Well, Dying Well, a non-profit training provider for end-of-life doulas; like birth doulas, these are self employed laypeople who provide practical and emotional support to families during this rite of passage, either voluntarily or for a small charge.

Seventy per cent of Britons say they would prefer to be at home when they die, yet half of us spend our final moments in hospital.

Barbara Chalmers is the founder of finalfling.com, an end-of-life planning website

“We handed over death to doctors many years ago,” said Ms Elliott. “Families don’t encounter it in a natural way and lack confidence. A lot of people don’t even know they’re allowed to die at home or they can get funding for adjustable hospital beds or aids that they can use at home to make it easier.

“The kneejerk reaction is often to dial 999 if there are difficult symptoms, but paramedics may be duty-bound to take someone to A&E which is often not the right place for someone who is at the end of their life,” she said.

Others are doing similar work. Susan Court, who works for terminal illness care charity Marie Curie, is running a lottery-funded pilot project in Wales providing “ante-mortem” sessions in which family carers referred by their GPs can get information and support to prepare for the death of a loved one: sessions cover anticipating grief and guilt, dealing with end-of-life symptoms such as loss of appetite and breathing changes, and practical matters such as coping with the sudden end to carers’ benefits after a loved one dies.

“Marie Curie nursing services tend to support people at the very end of their lives,” she said. “But feedback from carers is that there are many things they wish they’d known far earlier. This is very much about building carers’ confidence before any crisis.”

The government is also keen to get people thinking about the end of life. ItsAdvance Care Planning initiative, introduced nationwide in 2008, is similar to a birth plan – only it enables people to communicate their dying wishes rather than what they want for the birth. For example, one person might want to refuse treatment and to die at home with only close family nearby and the cat on the bed; another might want to go and watch Manchester United, have lots of visitors and die in a hospice.

It may sound morbid but US research suggests that making such wishes known may even help us live longer. And in a UK study of almost 1,000 patients in North Somerset, three-quarters of those who had completed advance care plans died in their preferred place, usually home. Just one in 10 died in hospital – significantly fewer than the national average of 50 per cent.

Lis Horwich (green) leading a Death Cafe session

Of course death, like birth, does not always go to plan. All the more reason, then, to make it part of common conversation, says Barbara Chalmers, founder of award-winning website finalfling.com. Here people can get help to get their affairs in order, write bucket lists, upload precious photos, tell their life stories and even plan their final farewells.

“We want to be to death what Mumsnet is to birth,” says Ms Chalmers, a communications consultant whose website gets 8,000 visitors a month. “This is going to be a massive movement within the next 10 years. “

Jon Underwood couldn’t agree more. He is the driving force behind the worldwide Death Cafemovement, which enables people to break the taboo around death over coffee and cake, in local cafes or community centres. Going to a “death café” may seem a world away from meeting your antenatal group for a coffee, but the principle is the same. Only, instead of grappling with the dilemmas of how to bring up baby, the group discusses the end of life – with similar amounts of laughter and tears.

This time last year only 100 cafes had been held worldwide since Mr Underwood co-founded the social franchise in 2011. As of this month the number has skyrocketed to more than 2,000 in 31 countries. Today’s older generation says Mr Underwood, want their lives to be “properly celebrated” as they near the end.

It seems the taboo that surrounds death is set to finally be breaking.

http://www.thebraintumourcharity.org/.

http://livingwelldyingwell.net/

https://www.finalfling.com/

www.deathcafe.com

Complete Article HERE!

California Judge Throws Out Lawsuit On Medically Assisted Suicide

By April Dembosky

Christy O’Donnell, who has advanced lung cancer, is one of several California patients suing for the right to get a doctor’s help with prescription medicine to end their own lives if and when they feel that’s necessary.

Three terminally ill patients lost a court battle in California Friday over whether they should have the right to request and take lethal medication to hasten their deaths.

San Diego Superior Court Judge Gregory Pollack said he would dismiss the case, adding that the issues were beyond his role as a judge to decide and should instead be put to the California state legislature or voters to establish new law.

Plaintiffs vowed to appeal the ruling.

“This is certainly frustrating, but it’s a temporary setback,” said Elizabeth Wallner, a plaintiff in the case, who has been diagnosed with Stage IV colon cancer. “I am optimistic that we’ll prevail in the end. It’s too big of an issue to leave uncovered.”

Wallner began a series of treatments for her cancer in 2011, including surgeries to remove her colon and parts of her liver, radiation, and numerous rounds of chemotherapy. In the midst of this, when her son was 16, she realized that she wanted to have control over her own death.

“I was throwing up in the bathroom and my son was taking care of me,” she said. “I looked over at his face and I saw him absolutely stricken, watching his mother experience this. I thought, that’s enough — my son doesn’t need to see this. I should have the right to make that decision when it’s time.”

The case she and others brought to the court seeks to challenge current California law (Section 401 of the state penal code), which makes it a crime to deliberately aid or advise another person to commit suicide. Wallner and the other patients say the law prohibits their doctors from discussing or prescribing medications that could end their lives; and that prohibition, they say, violates their rights to privacy, liberty, and free speech under the California Constitution.

Attorneys for the plaintiffs — the three patients and a physician — argue that the option to hasten death is an extension of previously recognized legal rights to make end-of-life decisions, including the right to refuse life-sustaining treatments, like a feeding tube or ventilator.

“When you’re suffering, and you know you’re going to die anyway, it should be up to you to decide when enough is enough,” said Kevin Diaz, an attorney and director of legal affairs for the advocacy group Compassion & Choices, which is representing the plaintiffs. “We’ll keep trying anyway we can to make sure this is an option.”

But California Attorney General Kamala Harris, one of the defendants in the case, argued that there is no right to assisted suicide embedded in California law. Health statutes that protect patients’ rights to withdraw treatment, Harris said, do not include a right to provide proactive assistance to end someone’s life.

“No court has ever extended the right to privacy to encompass an affirmative medical intervention to kill oneself,” Julie Trinh, deputy attorney general, wrote in a legal brief.

She wrote that while the court has sympathized in the past with the plight of the terminally ill, it concluded that the question of allowing physician-assisted suicide is a legislative matter, rather than a judicial one.

The judge in this case agreed. He said he would issue a formal ruling on Monday.

A bill that aims to legalize physician-assisted suicide in California (SB 128) has been tabled for the rest of the year, after stalling in the Assembly Health Committee. Several attempts in other states to pass a similar bill this year have failed.

The practice is legal in five states: The courts authorized the practice in Montana and New Mexico; Vermont passed a law in its legislature; and voters approved ballot measures in Washington and Oregon.

There is one other lawsuit pending in California.

The three patients who are plaintiffs in the case dismissed Friday are worried that the legal process will be too slow to provide relief for them. Christy O’Donnell, a single mother from Santa Clarita, Calif., who is dying from lung cancer, explains her situation in the video below, released earlier this year.

O’Donnell broke down in tears after Friday’s hearing. “I don’t have much time left to live,” she said. “These options are urgent for me.”
Complete Article HERE!

Grim Reaper Origin And History

The Grim Reaper or the “Angel of Death” is a conceptual entity that is depicted as pale skeletal figure in a long black cloak with a hood, and scythe in hand. Throughout the history of mankind, the concept of death as an omnipotent entity has had a significant impact on human psyche. This article throws some light on the origin and history of the Grim Reaper and the myths and stories associated with this psychopomp.

The Grim Reaper is a diabolically dark figure that has captured the imagination of many people around the world! Was he the answer that man found to his questions about the death and dying? This entity features in folklore and movies. The scythe that he wields symbolizes the weapon of the harvester or keeper of souls. It is believe that this entity escorts souls of the deceased to the unknown territory of life after death. While some believe that he arrives on an old coach drawn by white horses, others believe he arrives on a single horse, without any coaches. His skeletal face bears a grim expression that successfully haunts a number of people, instilling the never-ending fear of death and departure.

Many religions believe a particular spirit or deity is responsible to look after the souls after the death of a person. The Grim Reaper is considered this psychopomp who performs his duties of carrying souls of the dead to the world of the nonliving. In ancient Greek mythology, Charon was such an entity, who carried the souls of the recently deceased in a ferry across the river that separated the world of the living from the dead. Similarly, there are different mythological and religious entities that come from different cultures and beliefs from all over the globe, that somehow link with the origin of the personification of death in the form of the Grim Reaper.

Legend of the Grim Reaper: Folklore, Myths, and Beliefs

Although there are different accounts of the manifestation of death, the Grim Reaper has become a conceptual personification of death the world over. The presence of this nightmarish entity has captured the imagination of storytellers, writers and artists. The following sections will brief you about some notable instances or entities in history, that will help understand the story behind the emergence of the Grim Reaper.

The Fourth Horseman of the Apocalypse

four-horsemen-of-the-apocalypse
Four Horsemen of the Apocalypse by Albrecht Dürer

As mentioned earlier, Death is identified as the fourth horseman of which the Bible says in the Book of Revelation (6:1-8). The following excerpt has been taken from the English Standard Version.

When he opened the fourth seal, I heard the voice of the fourth living creature say, “Come!” And I looked, and behold, a pale horse! And its rider’s name was Death, and Hades followed him. And they were given authority over a fourth of the earth, to kill with sword and with famine and with pestilence and by wild beasts of the earth.

Although the scripture doesn’t call death, “the Grim Reaper”, nor does it say about it wearing a black-hooded cloak holding scythe, it does act as a link to the depiction of the Grim Reaper riding a pale horse. If you carefully observe the image on the right, you would see the fourth horseman on the extreme left, riding a pale and skinny horse, and is himself quite the same, giving an almost skeleton-like look. However, as mentioned earlier, various artists have depicted this horseman in a skeleton figure, some of them include, John Haynes after John Hamilton Mortimer in his 1784 painting “Death on a Pale Horse”, and Victor Vasnetsov in his 1887 painting, “Four Horsemen of Apocalypse”.

In Mythology and Folklore

ankou
Ankou

Ankou
Figure of Death in Breton Mythology
The ultimate symbolism of the Grim Reaper is death. In Greek mythology, Thanatos is the deity associated with death, who was the twin brother of Hypnos, the god of sleep. The portrayal of Thanatos isn’t scary and intimidating. He is depicted as a pleasant-looking young man with wings and a sword. This simply shows that the Greeks did not see death as something horrific, but accepted it as a part of life.

In Breton mythology, and Cornish and Norman French folklore, death was personified as Ankou. His depiction is quite similar to that of the image of the Grim Reaper today. He is believed to appear as a man or a skeleton who wears a black cloak and wields a scythe. Alternately, some legends also state him to be like a shadow that seems to be of an old man wearing a hat. Legend has it that four black horses pulled his cart which helped him carry the souls of the deceased.

It is believed by some that the Grim Reaper has originated from the legend of Ankou. However, there are others that claim this notion to be untrue, considering that the Grim Reaper is a somewhat recent depiction of death, as explained in the next section.

The Black Death

grim-reaper-cholera-pandemic
French newspaper Le Petit Journal. Front page on December 1st, 1912.

Although life and death are the inseparable and inevitable part of this world’s existence, it was not always that death was personified as a scythe-bearer who wears a hooded cloak and carries souls to the afterlife. If we browse through the medieval history and the events that took place in it, it can be concluded that a lot about the figure of death as a skeleton can be linked with the massive deaths that occurred between the late fourteenth to early fifteenth century―infamously known as The Black Death. The plague came in various forms in different cities, wiping out a significant percent of the population. Because of the plague being highly contagious, priests refused to perform last rites, resulting in unburied death bodies. Considering the frightening environment, where everyone feared being affected with this pandemic, it was only natural for people to view death as a skeletal figure, as the amount of corpses in the vicinity were overwhelming.

This pandemic was named ‘Black Death’ because the victims were covered in mysterious black boils that oozed blood and puss. Also, the skin of the victim became black and gangrenous. Black is also the color that is worn in funerals and deaths. Hence, was natural for the artists of that era to see death coming in the color black. While initially, tools such as crossbow, ax, or dart was shown as death’s weapon, gradually it was replaced with a scythe, and many artists portrayed death, or the Grim Reaper, using this tool to mow souls. This is shown in the image on the right, where the Grim Reaper is shown mowing the souls of people who died due to cholera during the Balkan War. These pandemics in different forms depict that the taker of souls comes in different times, through different means, to take its assignment to deliver souls to their rightful place, at the right time.

The Gender of the Grim Reaper

There has been an ongoing debate of the Grim Reaper being a male or a female. First off, being a symbol of the grim reaper as a womandeath, it is unlikely for it to have a gender. While mostly, this psychopomp is depicted as a male, there have been legends associated with death being a female. For instance, in Poland, death is a female word Śmierć and is believed to be an old skeletal woman, whose appearance is quite similar to that of the traditional Grim Reaper. However, death wears a white robe, not black.

Also, in Scandinavian mythology, death is considered to be an old and ugly woman, who especially came into the picture during the Black Plague. It is said that this old lady came with either a broom or a rake and wore a black robe. The days she brought a broom, all would die in the area, while some would escape death when she carried a rake. A similar belief was prevalent in Lithuanian mythology, where death was called Giltinė who was an old, ugly woman with a long blue nose and a poisonous tongue. In both regions, this depiction of death, later evolved as the Grim Reaper wearing a black robe and holding a scythe.

Well, the whole concept of “Life After Death” is well beyond the realm of physical world, and no one has ever ventured back to tell us whether there is such an entity as the Grim Reaper in reality or not, and the fact if this entity is a male or a female! While some people consider it to be nothing more than a myth, a scary fictional character perhaps, the concept of Grim Reaper is a chilling reminder, and teaches us that the death is a reality that we all must face, and that it might just say hello when we expect it the least.
Complete Article HERE!

Life Is But A Dream – 07/21/15

What does “life is but a dream” mean?

Sometimes when something unbelievable happens, it’s so outrageous (usually in a good way) that it seems like you’re in a dream.

Life is what you make of it. So if you dare to dream, envision what you want it to be – it becomes your reality. It goes right along with the saying “You can be anything you want to be…”

In dreams anything is possible, impossible becomes possible. In life there are limitations with unseen forces that work along with our motives to confuse us more on the path to fulfillment. Life is but a dream – nothing is so easy as to dream it and make it happen right that moment without obstacles standing in way.

Can the end of life be an opportunity for social change?

By SAMANTHA WOOD MCCOURT

Death and grief can nurture compassion, joy and solidarity, creating a revolution in the way we care for others.

death and social change

From the time I saw the film “My Girl” as a child in the early 1990s I had questions about the end of life. What happens when we die? What would it be like to live in a funeral home? How does it feel to lose a parent or a friend?

For obvious reasons I kept these questions to myself. Death wasn’t a topic that could be discussed as openly as what I learned in dance class that day. This was part self censorship and part socialization—I was never taught about death or dying in school (or any type of loss for that matter), so I never felt it was an appropriate topic for public conversation.  I kept these questions under wraps, until my mother was diagnosed with terminal cancer in 2013. She died three months later.

As a woman in her late twenties my questions became much more complex, replacing curiosity with fear and unfamiliarity. That’s the thing about the end of life: despite its universality, it can be sticky and complicated and imperfect.

My recollections of the last six weeks I spent with my mother are incredibly vivid. I can remember every hospital room we stayed in—the smell of her shampoo, our conversations and our disagreements. I remember the nurses who took the time to teach me about wound care and medication management and other gems such how to change the sheets with someone still in the bed. Laura and Kathy, the nurses who found our morbid sense of humour entertaining, were our favourites.

Having transitioned through intensive care and the surgical ward, back home, and eventually to a hospice, we spent over a thousand hours together adjusting to the cycles of the end of life.

When she no longer needed to eat or drink I learned that this was a normal part of dying, and that it was an act of love to resist the urge to encourage her. When she could no longer speak I learned that she could still feel and hear, and that we would need to change the way we communicated with one another. I learned to read her facial expressions for pain and discomfort.

Through caring for my mother I also learned to let go. After she died, I felt a loss of identity. I couldn’t quite re-orient myself as a motherless child, and felt like I had gotten lost in the natural order of things. I still feel this way sometimes when I remember that she’s gone.

To paraphrase mental health researcher Allan Kellehear, grief is a ‘forever thing’ and requires ‘forever strategies’—it’s not a matter of ‘returning to normal’ following a loss. Workplaces may offer a few bereavement days and friends may check in for the first few weeks, but the physical, psychological, emotional and spiritual costs of loss last a lifetime.

As part of my strategies for coping, I began to read personal memoirs about love and loss because it made me feel a sort of comforting solidarity to join the ranks of the bereaved. It also allowed me to become more settled in the reality of my own future mortality. And while I couldn’t change the grief I felt, I knew I could choose how to engage with it, spending many hours exploring the corridors of darkness and light.

I didn’t have a single, all-revealing ‘aha’ moment, but rather a series of insights which began to connect my own experience with the experience of others, and with the broader social, political, cultural and economic order of things. Part of my ‘forever strategy’ has been to look at the ways in which curiosity, compassion and conversation can transform the way we think about the end of life, and about caring for those who are dying.

The heart of the matter is that the universality of death and loss can be a source of connection and solidarity. We have an active role to play in supporting each other in times of grief and mourning, much like we rally together in times of celebration and social struggle. But for that to happen we must change how we think about elder care in fundamental ways.

As the population ages and global disparities in health and wealth continue to rise, we have an ever-greater responsibility to undertake those changes.Throughout the world, the number of people aged over 60 is expected to more than double from 841 million in 2013 to more than 2 billion in 2050. It’s also projected that the number of older people will surpass the number of children for the first time in 2047.

While increased longevity of life has obvious benefits, it also places more strains on health and social services that are already buckling under neoliberal ‘reforms’ which have shifted responsibility away from the state, and onto charities and ordinary people. This has a ripple effect in making it more difficult for families to fund care and take time away from paid work for care-giving responsibilities. Unfortunately, compassionate care benefits and employment insurance for caregivers are often inadequate, and may not be accessible to everyone in need.

Caring for someone with a life-limiting or life threatening illness can take up more time than a full-time job—up to 54 hours per week by some estimates. In my family both my brother and I left our jobs to be actively involved in my mother’s care. This is a decision that many would not have the luxury of making (nor should they have to). But if care could become a fully shared and supported experience these problems would at least be more manageable.

In fact, the emerging connections between social action and the universal experience of loss are already being made in a range of new and inventive mediums, programs and methods of end-of-life care. Many are rooted in Kellehear’s philosophy of “Compassionate Cities:”

“Compassionate end-of-life care approaches are partnership based and emphasise social interrelatedness. They presuppose the care of experiences of dying and loss within communities of people who understand and support one another. Compassionate Cities represent holistic approaches to end-of-life care. In this sense, they include formal healthcare services, but also extend the definition of care and create partnerships with a number of people and organisations in communities that offer skills which serve end-of-life care needs.”

In a conversation that’s still dominated by medical interests, a citizen-centred approach like this is a welcome departure, providing a springboard for collective action that allows communities to define their own unique challenges and solutions to end-of-life issues.

The Dying Matters coalition led by the National Council for Palliative Care is another great example. Comprised of almost 30,000 members across England and Wales, the coalition has successfully connected individuals and organizations from across the National Health Service, faith groups, academic researchers and the funeral sector to “help people talk more openly about dying, death and bereavement, and to make plans for the end of life.” By providing support and resources and engaging the community through awareness events and online forums, Dying Matters has established itself as a transformative presence in the field.

Death Cafe offers another opportunity for people to talk about dying. The concept is simple but powerful: an open space with no agenda in which attendees discuss anything they want pertaining to death and end-of-life care in coffee shops or other non-threatening venues. The Cafe uses a ‘social franchise’ model so that anyone can organize a conversation so long as they adhere to certain guidelines. Since the first Death Cafe there have been over 2,000 such events in countries from New Zealand to the USA.

Even campaigns about funeral poverty can be vehicles for positive change. Quaker Social Action, for example, has established the “Fair Funeral Campaign” to raise awareness about the increasing costs of funerals and to advocate for fairer policies and practices from the funeral industry.

The point of these examples is to show that death can be normalized within the cycles of life, removed from the clutches of commercial interests and the medical establishment, and returned to its place at the center of communities.

On the night my mother died, my brother Alexander and I were sitting in her bed in the hospice. The room was abuzz with a sort of soft electricity that we felt but couldn’t explain. Eventually her breathing slowed, and then it stopped, just as the needle lifted from her favourite Patsy Cline album. Neither of us moved for a long time. We just sat in the space that our mother had left behind.

When I called my husband, Pierre, around midnight to give him the news he said something that came out of left field considering his Irish Catholic upbringing. He started talking about physics and told me to remember that energy cannot be created or destroyed—only change its form.

It’s been nearly two years since my mother died and I’ve thought about that law every day. For me, whatever energy was left behind that night has been transformed into a conscious effort to talk about death and dying in a radically different way, on the off chance that it might encourage others to talk about it too. Loss and grief can nurture compassion, joy and connection, creating a revolution in the way we care for others.

Complete Article HERE!

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!

Planning for end-of-life care

By GINNY SUGIMOTO

speak up

When it comes to planning for end-of-life health care, the first impulse for many people is to avoid the topic. End of life is something many of us would prefer not to think about. But considering your wishes, and documenting them, is one of the most important things you can do.

That’s partly because we all have a different idea of what constitutes the best amount and type of care, and where we want to receive that care. For example, my idea of a good death is one that is not preceded by too many intensive medical interventions. I am influenced in that decision by my work as a doctor, and by my extensive experience with elder care.

Others may want the option of more procedures. Some people want to die at home if possible, while others are comfortable with hospital or hospice care outside the home. People make these decisions based on many factors, including their own desires and beliefs about death, what they think will be easiest for their loved ones, financial circumstances and religious beliefs.

Unfortunately, far too many people don’t make these decisions at all — not even informally. They don’t share their wishes with loved ones. According to The Conversation Project, an organization dedicated to helping people talk about end-of-life care, 90 percent of people say that talking to their loved ones about end-of-life care is important, but only 27 percent have actually done so. As a result, family members often must make multiple health decisions for their seriously ill loved ones without guidance. My husband and I are both doctors, and we’ve seen elderly people — who are unable to make their own decisions — undergo significant, invasive procedures because whoever has control over their health care can’t accept that their loved one is dying, or they fear making the wrong decision.

To avoid such an outcome, I strongly recommend that you make decisions now — whatever your age — and put them in writing in the form of advance directives. These are legal documents that outline your wishes for end-of-life care. Make sure to discuss your wishes with your loved ones and your doctor.

DOCUMENTING YOUR WISHES

The term “advance directives” refers to three documents that can help make your end-of-life choices clear and legally actionable.

1. Durable Medical Power of Attorney for Health Care: This gives someone of your choosing the power to make medical decisions for you if you are too sick to make them yourself. This person must be over age 18 and available and willing to act on your behalf in healthcare-related matters. It is important to have end-of life conversations with this person. (A durable power of attorney for finances is a separate document and can be given to the same or a different person).

2. Living Will or Directive to Physicians: This document states a person’s decision to refuse life-sustaining medical treatment if that person has a terminal illness or injury that leaves him or her permanently unconscious. The directive lets your doctors withhold or stop life-sustaining treatment. Living wills do not apply when medical conditions are not life-threatening. Living wills tend to be very simple, which can limit their usefulness in complicated medical situations.

3. The Washington State Physician Orders for Life Sustaining Treatment (POLST) form is important for residents of Washington state who have an advanced, life-limiting illness and want to limit health care interventions. It’s usually supplied by your medical provider and completed during an office visit. You and your doctor, nurse practitioner, or physician-assistant-certified must sign the document after making specific choices about cardiac resuscitation, respiratory support, use of antibiotics and use of artificially-provided nutrition. The form then constitutes medical orders that guide your medical team in life and death situations. It becomes effective immediately, but if you change your mind about the decisions you’ve made, you can tear it up and it is no longer legal. If you live at home, post this form where paramedics can find it easily such as on the front of the refrigerator, back of the bedroom door, on a bedside table or in a medicine cabinet.

I’ve spoken with patients about why they put off creating these documents. Most often, they simply haven’t set aside time. Sometimes, they fear that signing them means they won’t get treatment when they want it. This is not true. If you state that your goal is to live as long as possible, you will get every intervention. People also worry that if they give someone durable power of attorney for health care, they will immediately lose control of their choices. But this power of attorney only activates if you are unable to speak for yourself. In reality, you lose control when you don’t express your wishes and leave all the decisions to others.

I was recently caring for an elderly patient with a new diagnosis of cancer. I looked back over several years of office visits and saw that we had had three conversations on the topic of advanced directives but he was never ready to make those decisions. I knew my patient could become very ill in the weeks ahead, so we started the conversation anew. We completed the POLST form, and he and his son agreed that they would complete the other documents that week. It felt good to have an honest conversation about my patient’s fears and desires, and to know that his son and medical providers will be able to honor his wishes.

I believe that most people in this country don’t end their lives in the way they would choose. That situation could be very different if we all take the time to share our preferences with our doctors and the important people in our lives.

RESOURCES

Most people aren’t aware of the options for end-of-life care. These resources are helpful in beginning a conversation and making choices.

The Conversation Project has a free starter kit, downloadable from its website, that can help you gather your thoughts and consider how best to have this conversation with loved ones. Find it at theconversationproject.org.

The Washington State Medical Association’s “Know Your Choices, Ask Your Doctor” campaign can provide both forms and guidance. Go to wsma.org or call 1-800-552-0612.

The American Bar Association offers a starter kit for talking about these issues. Go to americanbar.org and enter “Consumer Tool Kit for Health Care Advance Planning” in the search box.

Hospice of Kitsap County offers a Living Will resource called Five Wishes. Order copies at hospicekc.org.

Your doctor’s office is also an excellent place to ask for more information about advance directives.

Complete Article HERE!