The Amateur's Guide To Death & Dying

October 19, 2016October 18, 2016

How would you like to die? It’s time to talk about it…

‘You get to die only once, and you have one chance to get it right’

By Alan Kirk

Discussing your end-of-life plans is about making your death less traumatic for your family and loved ones, and having your own wishes respected, as much as possible.

[H]ow would you like to die? Is this a question you ever ask yourself? More importantly, is it a question you ever answer? And, most importantly, is it an answer you share with your family?

For many it seems, the answer is no. Yet, when asked, it is something many of us would like to do. When the Irish Hospice Foundation (IHF) carried out research, they found 60 per cent of people thought there wasn’t enough discussion about death, yet 66 per cent have never discussed what they want around their end-of-life care with family.

“It’s a clear case of what people want versus what people do,” says Sharon Foley, chief executive of the IHF. “You get to die only once, and you have one chance to get it right. It’s so important to think about what you want for yourself at the end of life, now, while you still have capacity, to ensure the proper care and support for you, and less trauma for your family and loved ones.”

>When the doctor asked to talk to my dad and I, and we followed him into a side room, I knew it wasn’t good. All previous conversations had been in the ward corridor. This room had comfy chairs and a box of tissues. The room itself was the opening conversation about my mum’s death. He sat us down and explained that my mum’s stroke had been catastrophic causing significant brain damage, paralysis, double incontinence and that her chances of survival were not good. I had seen enough of my mum to know also that, if she did survive, her chances of living were not very good either.<

The doctor asked us what we wanted to do, if my mum needed to be resuscitated. Neither of us hesitated or even looked at each other to confer. We both said immediately, “Do not resuscitate.” We were lucky. We knew what my mum would have wanted. She had told us often enough. But I often wonder what would have happened if we had looked at each other first, and one of us defiantly had said yes.

But this is what often happens, as the decision over a parent or spouse’s death is left up to family members who are already in a deep place of distress. We know medical science is improving all the time and people are living longer, an obviously positive development. But it is also a challenge to respond to the care needs of an ageing population. While the medical profession has rightly focused on quantity of life, has society focused enough on the issue of quality of life? And, in particular, end of life?

According to Foley, no. “I liken it to the discussions in the 1980s around breast cancer. Women didn’t discuss it with friends. There were whispers about the ‘Big C’ and, as a result, women didn’t get screened, or get any support. Now screening and support are a part of life. We need the same sea change around our wishes regarding end of life.”

Critical conversation

For obvious reasons, thinking about our, or our parent’s death, is an upsetting notion, but, as Justin Moran of Age Action explains, it is critical to have that conversation while you still can. “We all think and prepare for what we leave behind in terms of our house and our legacy, but what about your own death? Thinking clearly about how you might want to be treated – or not – and ensuring decisions aren’t left to those you are leaving behind is about empowering people to make decisions for themselves while they can.”

The Irish Hospice Foundation encourages people to give guidance to family through a a campaign called Think Ahead and Have Your Say campaign, and this year legislation has come out introducing the opportunity for us all to leave a “living will”.

The Advanced Healthcare Decisions Bill gives people the chance to communicate their final healthcare requests when they might no longer be in a position to do so, and to provide healthcare professionals with important information about the patient’s treatment choices. You can also appoint a designated healthcare representative – a close friend or family member – to make healthcare decisions on your behalf if you no longer have the capacity to make those decisions.

A good death

“There is a lot of debate around what a ‘good death’ is,” says Foley. “This is about making death – something already heartbreaking and distressing for all – as respectful to the wishes of the patient as possible.”

Justin Moran acknowledges these are hard conversations to have with our parents or children. “It’s about ensuring that you retain as much control as you can over that part of your life.You don’t want to leave that responsibility to the people you love, who are already going through a tough time.”<

But is it enough? Back in that hospital room, we agreed to a DNR if my mum stopped breathing. But it was another five and a half years before she took her last breath. In the final months, in consultation with doctors, we took a further step to withdraw active life-prolonging treatment after she suffered a series of hospital-admitted infections which caused distress to everyone, especially her. We knew my mum’s wishes. But even at the end all we could do was withdraw treatment and wait and watch for the several weeks that nature took its course. She was never in pain. But she was distressed. She watched us, watching her die.

In many ways my mum had a “good death”. She died in my arms at home, with my dad and brother holding her hands. We had spent the previous two weeks constantly by her side, talking and touching, loving and laughing, holding her tight and letting her go. But, as her daughter, it was a terrible death.

Once we knew she was dying, once doctors confirmed she had passed the point of any recovery, there was nothing we could do but let her linger and languish as her body slowly shut down. She could easily have died when we had nipped to the loo, or gone to put the kettle on. The stress of that fear haunts me still. The conversation about dying has only just begun. But, for now, if we love the life we live, if we love the family we leave behind, if we want to be in control of our living, then as a society and individually, we need to talk more about dying.

Complete Article HERE!

October 18, 2016October 16, 2016

‘I regret not talking to my mother about her death, don’t do the same thing’

The Irish Hospice Foundation wants people to talk about death, dying and grief more openly.

By Órla Ryan

WE WERE AFRAID to say the word ‘death’, afraid that if we faced it she would die. We didn’t want to accept that she was going to die. The outcome of that was very difficult. We didn’t give her a chance to talk about dying.

Rebecca Lloyd’s mother, Christine, died 12 years ago. She was diagnosed with Motor Neurone Disease (MND) eight months previously.

MND is a progressive neurological condition that attacks nerves in the brain and spinal cord. This means messages gradually stop reaching a person’s muscles, which leads to weakness and wasting.

Rebecca notes that MND is often referred to as the “1,000 day disease” as most people diagnosed with it die within that number of days.

“She had much, much less time. It was horrible. She was such a huge part of lives,” Rebecca says of her mother, who was in her early 60s when she died.

“It turned my life, our lives, upside down … MND is a debilitating disease. Diagnosis to death was less than eight months … It changed our lives dramatically.”

Rebecca told TheJournal.ie she was living in California with her husband and baby son when her mother was diagnosed with MND.

They moved back to Yorkshire in England, where Rebecca is from, and were there for the final few weeks of Christine’s life.

‘Grief is just so hard’

While she is grateful she was around to spend time with her mother, Rebecca deeply regrets that she and other family members didn’t talk to her about her death.

“We were afraid to say the word ‘death’, afraid that if we faced it she would die. We didn’t want to accept that she was going to die. The outcome of that was very difficult. We didn’t give her a chance to talk about dying.

Even as an adult grief is just so hard. What I’ve learned since then is that talking about it always makes it easier.

Rebecca praised her father Paul for the “magnificent” care he provided for Christine, enabling her to stay at home until the day before she died.

Her mother’s death had a profound effect on her – in more ways than one. It led to her giving up her job as an engineer and she now works with the Compassionate Communities Project at the Milford Care Centre in Co Limerick.

“I made it my life’s goal to help people who are dying or bereaved.”

Rebecca says a large part of her job is “talking to people who are fit and healthy to get them to talk about planning for death”.

“We can make lots of decisions when we are calm and fine … We are not as good at making decisions when we’re in hospital and crisis has hit us.”

Death charter

With this in mind, Rebecca helped devise the Irish Hospice Foundation’s (IHF) Charter on Dying, Death and Bereavement. The survey aims to gather the views of people in Ireland about death and grief before presenting them to the Government in a bid to help guide the national approach to services and supports for dying and bereaved people.

It has received about 600 responses in three weeks, and the goal is to reach at least 1,000. Rebecca says she has been “blown away” by the reaction.

“It’s notoriously difficult to get people to fill in surveys – you’re normally lucky if you get 20 or 30 people, especially dealing with something people don’t want to talk about. People obviously really do want to talk about it.”

Rebecca says people often avoid talking about death and dying because it’s an awkward topic and they might not know what to say.

She says some bereaved people have told her grief starts when the funeral ends.

We’re brilliant at funerals, the Irish are brilliant at funerals. After the month’s mind [mass] the support disappears. Especially for carers, they’re kind of just left.

Rebecca states that bereaved people often become socially isolated and sometimes people avoid bringing up their loss, noting: “We feel crippled with anxiety that we just don’t know what to say.”

The goal of the charter is to place death and bereavement on the national agenda so people are more comfortable discussing it, and have access to services that will help when they’re in need.

Rebecca notes that Ireland has an ageing population and, according to a previous IHF survey, three quarters of people want to die at home.

“We want the Irish people to say what they want to see happen. The thing is we don’t know what they want.

“Are they afraid of pain? Are they afraid of what will happen to their family? Are they afraid of talking about death?”

‘Very lonely decisions’

IHF chief executive officer Sharon Foley said: “We are asking people to remember and reflect on their own experiences of dying, death and bereavement and re-imagine what it might take to facilitate a good death.

For all of us there will come a time when we will need care through illness and it’s important we understand how people look at death and dying to ensure correct supports are in place.

Campaign supporter Jillian van Turnhout, a former Senator, recently spoke about helping her father have his say at the end of his life.

“Talk about end of life when you are healthy so you really know what your loved ones want.

“My father Michael wished to remain in Clonskeagh community nursing home instead of going to hospital when he was told he had 24 hours to live. Clonskeagh was his home at that point and it was where our family ensured he remained until he passed away a year after the decision.

Very lonely decisions have to be made at end of life and it’s important we feel no guilt in making these choices because we know it’s the wishes of our loved ones. My family and I made sure dad’s wishes were held to the end and that’s what keeps us strong now.

The IHF is currently holding death cafés, where people get together and talk about death and grief over a cup of tea and a bite to eat, in various locations around Ireland. The next one is due to take place on Monday at Dublin City Council Civic Offices on Wood Quay from 11am – 1pm.

“We need to be more honest, attend death café conversations and complete the Irish Hospice Foundation’s survey so we can make a path for the people we love and know what matters to the people of Ireland. Talk in advance and check in with each other, even if it’s only one dinner conversation,” van Turnhout advised.

Complete Article HERE!

October 17, 2016October 15, 2016

Disability and sex are not mutually exclusive

Like many young women, Emily Yates has tattoos, tinted hair, a love of fashion and a great sex life. She also happens to have cerebral palsy

By Emily Yates

Emily Yates: ‘I’m much more than a girl in a wheelchair.’

I think it is fair to say that the Paralympics have changed perceptions for the better in linking disability and sport. We have become used to watching elite athletes win medals and represent their countries in front of large crowds, and they just happen to use wheelchairs or prosthetic limbs, or be of short stature, or have hearing and visual impairments.

But what happens when we change “sport” to “sex”? Does awareness and education exist in the same way?

Inclusive and accessible sex education certainly did not exist when I was at school – apart from, perhaps, putting a condom on a banana. We are aware that disabled women, in particular, are almost three times as likely to be sexually abused than their non-disabled peers and yet those of us with disabilities are still entering lessons and workshops that are not designed for us. There are few, if any, subtitled and audio-described videos, information is usually not easy to read or understand, and the bodies in these videos and photos rarely, if ever, reflect disability of any kind, further alienating those of us classed as less than normal, and often less than attractive.

My twin sister and I were born 10 weeks early with cerebral palsy and I became a wheelchair-user at the age of nine after corrective surgery on my legs.

Like many of my friends, I have been in situations where I felt vulnerable sexually, but one in particular was exacerbated by my disability. I am well able to stand up for myself, but I was in a taxi, with my wheelchair in the boot, and the taxi driver was totally inappropriate and very suggestive. Knowing that my disability hindered me in dealing with his approaches was horrible. I decided to keep talking politely to him in the hope that I could distract him through small talk, which I did, until he dropped me off.

I reported him, but it highlighted the difficult situations you can find yourself in sexually if you have a disability.

Children and teenagers are constantly told to respect themselves and others, but if you are disabled, it is likely that many of the adults in your life might never consider you as a sexual being, meaning that the usual safety advice and strategies are rarely discussed. You are doubly vulnerable if you can’t physically remove yourself easily from an awkward situation.

I have been fortunate enough to have great sex and talk about it, but it wasn’t easy for me. Before losing my virginity pretty late, when I was 19, my main concern wasn’t the act itself, but the positions that would be possible without causing a great amount of pain. I also worried that the passion would totally disappear after a bit of inevitable planning.

There were very few helpful answers on the internet, so that left one avenue: laughing and crying with my auntie and sister on a Sunday afternoon as we went through possible positions together … no doubt a story that will surface should I ever get married.

Although it was a giggle and it helped a lot – thanks, guys – it is also tragic that I had to get myself in such a panic over something that is supposed to be sexy and fun because I simply didn’t know where, or who else, to turn to.

Most people, disabled or not, go through a transition stage in which they are suddenly aware of others’ attraction to them and their desire to be attractive in return. For me, this happened quite late and I tended to leave getting the guys to my sister, who was, I have to say, very successful at it (she is about to get married). Although I’m over the moon for her now, I can see that I was pretty jealous of her victories with boys at the time.

As I have got older, learned that necessary patience and had great sexual experiences, I have also grown in confidence, although I still have some way to go until I am as self-assured as I would like to be when it comes to romance and intimacy.

Some people still think that disability isn’t sexy or, worse, having sex with someone who has a disability is seen as wrong. There is also still a sense that if you have a disability, you are ill or frail, neither of which fit into the traditional idea of what we consider sexually attractive in our society.

But change is coming and I am proud to be a part of that.

My sexual experiences have resulted in an awareness of myself as a woman that no one can take away – and that is a great place to be, disability or not. But it is important to remember that those experiences don’t come easily for young disabled people. For so many years, I have had more important things than being sexy to concentrate on. Other teenagers tend not to have to think twice about whether they are able to go on school trips, or prove they can go to university – physically travel there, rather than just reach the required academic standards, find accessible accommodation and work out travel arrangements.

My confidence has been boosted enormously by taking control of my life, and this has helped me in my job as a travel writer. When I volunteered at London 2012, I sat next to Sebastian Coe at a press conference and asked him for 15 minutes of his time and all the contacts he could give me. He, in turn, mentioned me in his speech at the closing ceremony for saying that the Paralympic Games had “lifted the cloud of limitation” for those with disabilities.

I went on to do a two-year consultancy with MetroRio on accessible underground travel and wrote an accessible-travel guide to Rio de Janeiro with Lonely Planet in preparation for the 2016 Olympic and Paralympic Games. I am the founder and one of the directors of My Purple Compass, a company that encourages people with disabilities to travel far and wide, journeying out of their comfort zones.

I also work with Enhance the UK, which, through the Love Lounge, is providing the sort of information I would have loved as a teenager. Change is slow, but it is happening, and we are able to help others to discuss important issues, such as the positions and pain worry I had years ago, through to whether disclosing a disability on an online dating site is a good idea.

Sex education for disabled children and teenagers must be taught in schools as a matter of course, and parents and other family members can play a big part by making it as important for disabled people as for everyone else. More sexually active disabled people in popular culture would also help to change all those perceptions of disabled people, and illustrate that we enjoy sex as much as anyone.

Although being a disabled woman is currently what my work is based on, I’m much more than a girl in a wheelchair. I have the same tatts, tinted hair and love of fashion as many women my age, and I hope that others see that as well as the wheelchair. I am learning that disability and sex are not mutually exclusive and I love the journey that comes with it.

As told to Joan McFadden

• Help and guidance on sexual matters for people with disabilities is available at enhancetheuk.org/enhance

Complete Article HERE!

October 16, 2016October 14, 2016

Aid in dying doesn’t increase death, it reduces suffering

By David R. Grube

Colorado’s Proposition 106 would allow terminally ill patients to take life-ending, doctor-prescribed sleeping medication.

Re: “No on Proposition 106: Aid-in-dying measure lacks proper safeguards,” Oct. 11 endorsement.

I practiced family medicine in a small town in Oregon for 35 years, retiring in 2012. I cared for many terminally ill patients, and when Oregon’s Death With Dignity law passed some of my dying patients, albeit rarely, would ask me if I could help them achieve a death that they could control. My experience caring for thousands of patients over the years had taught me that death is not the enemy; suffering is the enemy. Their dignity and suffering were not defined by me, their doctor. I listened to my patients.

Colorado’s Proposition 106 is similar to Oregon’s law (in effect almost 20 years).

The concerns published in the Denver Post editorial have been examined and re-examined and have not occurred in Oregon, and will not occur in Colorado.

In Oregon there is no evidence of abuse of the law, no evidence of a slippery slope and no evidence of the “irreversible door” the Post editorial posits. More people do not die in Oregon, but fewer people suffer.

Aid in dying is patient-driven and patient-centered. “Professionalism” means putting the patient first. Medical aid in dying is not suicide, as your editorial inappropriately described it. Someone who commits suicide has, by definition, a mental illness and is “disconnected.” As a doctor, our job is to refer those patients to an appropriate mental health care provider, as we would for any patient with similar symptoms.

A person in the process of dying wants to live but will not. She or he is “connected”; to family, hospice and the medical system which includes doctors, nurses, family therapists, music therapists and others.

Medical aid in dying is a voluntary process. No one who does not agree with it needs to participate, and in fact it has enhanced end-of-life care, palliative care, and hospice care in Oregon, something that all Coloradans should support. I am proud that I live and practiced in Oregon, and that I was able to help my dying patients achieve a compassionate and desired end to their own stories. Proposition 106 should be approved by Colorado citizens.

David R. Grube, M.D., is national medical director for Compassion and Choices in Oregon.

Complete Article HERE!

October 15, 2016October 13, 2016

Aging animals get hospice care at Denver Zoo

by Ashley Michels

Dolly, a 7,000-pound, 51 year-old, female Asian elephant smashed a 450-pound pumpkin at todays 11:30 a.m. Toyota Elephant Passage demonstration. Todays pachyderm pumpkin pulverization kicked off the first day of Denver Zoos two-weekend Boo At The Zoo celebration. The pumpkin was donated by giant pumpkin hobbyist Brian Deevy. It was filled with two of her favorite treats, romaine lettuce and monkey chow, which are biscuits for herbivores made of grasses, vitamins and grains, similar in look and texture to dog biscuits. — Denver Zoo’s beloved elephant Dolly

When you visit the zoo, you visit the animals and take pictures with them, but you never really think about what happens to them later in their lives.

Just like us, animals get older and have to be taken care of. There are several animals at the Denver Zoo that you don’t get to see when you visit because they are under special hospice care until they pass away.

The Denver Zoo has more than 4,200 animals. The majority of them live their entire lives there.

Each animal gets a monthly health screening. But as animals get older, the way zookeepers care for them changes.

“We’re really monitoring a lot of different things about their behavior, about their attitude, how well are they eating, what’s their activity level,” zoo spokesman Brian Aucone said.

Some animals are easy. Take Verde, a South American Quetzal bird. for example. The zoo retired her about 10 years ago when they thought she was getting too old. She has been living in one of the zoo staff offices ever since.

“She started having some health problems, losing her eyesight, but she is still a very healthy bird,” her keeper said.

Verde is now 31 years old and is thought to be the oldest Quetzal alive. Their average lifespan is about 20 to 25 years.

“She’s grandma,” her keeper joked. “We give her a very calm, relaxed life.”

Not every animal ages as gracefully as Verde though.

Rizzo, an 11-year-old pygmy marmoset, is about as old as her species can get.

“She’s super feisty. She’s a little old lady, but she has a lot of spunk,” associate veterinarian Betsy Stringer said.

Rizzo was showing signs of respiratory failure so she was admitted to the Denver Zoo animal hospital for treatment. She has spent many of her senior years in the hospital, hoping to fight Mother Nature with medicine.

There comes a time in every animal’s life, though, where medicine just isn’t an option.

“We love these animals from birth until death,” Stringer said. “And we care for them until their final days.”

That’s where Denver Zoo’s beloved elephant Dolly spent the end of her life. She was a patient in the zoo’s hospice care for weeks leading up to her death in September.

“I have to keep reminding myself that as I get older, they get older,” Dolly’s zookeeper Barb Junkermeier said in August. “I always want to keep them little and young, but OK, reality check. She’s getting older.”

Dolly died at the age of 52, which is about five years older than an elephant’s life expectancy. Dolly was the 10th-oldest elephant in North America.

Junkermeier worked with Dolly every day for almost 20 years. She said she could tell right away when Dolly needed end-of-life care. Dolly stopped eating normally and stopped socializing.

In hospice, the zookeepers give patients a lot more attention than the other animals. They get a lot more health screenings, medicine, supplements and treats. Zoo staff just does whatever they can to keep hospice animals as comfortable as possible.

“You just sit there and bawl for a couple days,” Junkermeier explained.

Zookeepers said taking care of a dying animal is the hardest part of the job. But they want visitors to know that they do it with passion, they do it with love, and they do it until the end.

“We are doing everything in our power to give them the best care. We never take anything lightly when it’s time to make that decision. It’s the hardest thing a zookeeper could ever do,” Junkermeier said.

As hard as it is, life is a circle. Right as one ends, another begins.

“When Whimsy was born we were all very excited to have this new gorilla in our group and she’s super fun to watch grow up,” Stringer said.

Whimsy is an 8-month-old gorilla. She is just one of several babies growing up at the zoo. One day they will have babies of their own, keeping the circle of life going forever.

According to Denver Zoo, about 30 percent of their animal population is considered geriatric.

Here are some of the oldest animals at Denver Zoo and the average life expectancy:

Natasha the snow leopard, 15 years, 4 months (14.3 years)
Rudy the eastern black rhinoceros, 23 years (18.3 years)
Groucho the Asian elephant, 45 years, 7 months (unknown)
Otto the North American river otter, 18 years, 3 months (11.9 years)
Hank the red-capped mangabey, 22 years, 10 months (17.8 years)
Tega the maned wolf, 13 years, 7 months (12.3 years)
Maude the harbor seal, 41 years, 2 months (24.1 years)
Robin the harbor seal, 37years, 6 months (24.1 years)
Dikembe the giraffe, 22 years, 7 months (13.5 years)
Kipele the giraffe, 23 years (19.5 years)
Cliff the Rocky Mountain big horn sheep, 14 years, 3 months (6.5 years)
Ridge the Dall’s sheep, 15 years, 2 months (unknown)

Complete Article HERE!

October 14, 2016October 12, 2016

This Man’s Letter To The Hospital That Cared For His Wife Is Going Viral

He wants to thank the staff for their compassion.

By Claire Hannum

Last month, Laura Levis died at just 34 years old after suffering a devastating asthma attack. Her husband, Boston-based writer Peter DeMarco, has been sharing tributes to Levis on Facebook since her passing. One such tribute was a thank-you note to the staff of CHA Cambridge Hospital in Boston, where Levis spent the final days of her life. The New York Times republished the letter, and it has since gone viral, touching the hearts of thousands of readers.

The letter opens with DeMarco noting that he still remembers the name of nearly every medical professional who cared for his wife in the hospital. “As I begin to tell my friends and family about the seven days you treated my wife, Laura Levis, in what turned out to be the last days of her young life, they stop me at about the 15th name that I recall,” he wrote. “The list includes the doctors, nurses, respiratory specialists, social workers, even cleaning staff members who cared for her. ‘How do you remember any of their names?’ they ask. ‘How could I not,’ I respond. Every single one of you treated Laura with such professionalism, and kindness, and dignity as she lay unconscious.”

DeMarco continued to describe the extraordinary compassion the staff exhibited towards him, his wife, and his family in what was possibly the hardest week of his life. He explained how the doctors and nurses made Levis’ father, a doctor himself, feel involved in the decisions surrounding her care. He expressed gratitude for the staff’s willingness to break hospital rules so that the couple’s cat could pay one last visit to Levis in her room. DeMarco also admired the staff’s thoughtfulness in keeping him company when he needed it most. DeMarco went on to expressparticular gratitude over a night when Levis’ family and friends stopped by to say their goodbyes:

“One special evening, you gave me full control to usher into the I.C.U. more than 50 people in Laura’s life, from friends to co-workers to college alums to family members. It was an outpouring of love that included guitar playing and opera singing and dancing and new revelations to me about just how deeply my wife touched people. It was the last great night of our marriage together, for both of us, and it wouldn’t have happened without your support.

In an especially powerful verse, DeMarco thanked two nurses for providing him with a special final hour alone with his wife. “There is another moment—actually, a single hour—that I will never forget,” he began, before explaining that on the final day of Levis’ life, DeMarco was hoping for some time alone with her. He asked Levis’ nurses, Donna and Jen, if they could help him set up a hospital recliner next to her bed. Instead, the two nurses shifted Laura further to one side of the bed so DeMarco could lay beside her, and gave the two an hour alone together.

“I nestled my body against hers,” DeMarco wrote. “She looked so beautiful, and I told her so, stroking her hair and face. Pulling her gown down slightly, I kissed her breasts, and laid my head on her chest, feeling it rise and fall with each breath, her heartbeat in my ear. It was our last tender moment as a husband and a wife, and it was more natural and pure and comforting than anything I’ve ever felt.” What a beautiful act of kindness by two incredible nurses. The entire essay, which can be read at The New York Times, is full of heartfelt compassion. Our thoughts are with DeMarco and with Levis’ family as they grieve her passing.

Complete Article HERE!

October 13, 2016October 11, 2016

Things not to say to mourners (and some things you can do instead)

by Esther D. Kustanowitz

When friends announce on Facebook that a loved one needs prayers, or is in the hospital, or that they’re going through a hard time, I get a sinking feeling. And while recovery sometimes happens, sometimes, it doesn’t. So when I read, “I am heartbroken to announce …,” my heart breaks, and the pain of my own loss reawakens, in sympathy for the end of a life and for what is to follow for those still with us — a year mourning the loss through text, ritual and the communal embrace that is vital, but stands in contrast with grief’s frequent companion: a stark and searing sense of solitude.

Death is part of the organic fabric of life, our liturgy tells us, arriving sometimes in a timely manner and sometimes in a shocking and unexpected instant years or decades too soon. But regardless of the individual circumstances surrounding a loss, family members and friends are left to mourn and to try to move through the grief to live their lives in a new normal.

Jewish rituals provide a year of structure for rudderless mourners, with customs that encourage communal engagement while acknowledging that the year is one in which the mourner is set apart from and different than the embracing community. While this state traditionally lasts a prescribed year, in emotional reality, it tends to linger. Five years after my mother’s death, when people check in on me, I’m grateful; Judaism says that I have been done with mourning for the span of a college education, but that doesn’t mean I’m back to the me I was before. It doesn’t mean that my mother’s absence from the world doesn’t affect me anymore. It’s just different.

I remember those first few months, and how many people, hoping to utter words of comfort, instead spewed forth words of frustration, anger, pain and even insensitivity. They were probably as appalled as I was, but I know — and I hope they know that I know — that their hearts were in the right place. I believe they were so concerned about saying the wrong thing that they often said something even less appropriate.

Each mourner is different. Each grief circumstance is different. Each person finds comfort differently, in different gestures and phrases. But here are seven things — in honor of the traditional seven days of shivah — that everyone should try to avoid saying, along with a few things you can do or say instead to express your love and concern for someone who is experiencing a loss.

Avoid awkward moments engaging the mourner, conversationally or physically. There’s a tradition to leave the conversational initiative entirely to the bereaved, to wait until he or she wants to speak. Some mourners crave the physical embrace of community, while others prefer a spiritual support and company, but not literal embraces (especially from virtual strangers). While challenging to all of us who love words and fear silence, or who are more inclined toward long and crushing hugs to convey what’s in our hearts, sitting quietly in a room next to someone who is grieving can send a powerful, wordless message of presence and support (even if you don’t touch).

“Read” the mourner and be mindful of your relationship with him or her. Are you a close friend, whose embrace the mourner may be expecting, or are you an acquaintance who hugs as an alternative to conversation? If you’re concerned about the potential awkwardness of your physical or verbal interaction, ask the rabbi or a relative what kind of support the mourner may want. You can also ask the mourners if they would like a hug, and don’t be offended if they say no — not everyone wants to be touched by everyone.

Avoid commentary about the illness or the last moments of the deceased. “At least your loved one’s suffering is over” falls into a category of things that people inside and outside the immediate family may think quietly, especially if the deceased has been through a long or public illness, but should not say. Similarly, “at least s/he didn’t suffer,” or “what a blessing that it happened so fast.” You are not the coroner, so don’t offer your opinion on the cause of death or its nature. Instead, sit quietly with the mourner for a while — if there’s an appropriate opening, gently ask the mourner to share their favorite memories or most memorable moments.

Avoid making comments about the afterlife. In some religious communities, it’s comforting to devout people to think about their loved one being “in a better place,” “taking his place at God’s side” or (as I’ve heard religious Christians say) “going to Jesus.” But, emotionally, most mourners do not find comfort in this concept (especially “God needed another angel”). Is there an afterlife? Heaven? Hell? Olam ha-ba, where you study Talmud all day? No one knows; there are too many theological and emotional potholes in grief’s road to cover over with religious speculation about the afterlife. Instead, focus on this life: “I hope the community is the right kind of supportive when you need it. And I’m always available to help you.” (More on this in the next paragraph.)

Avoid: “Is there anything I can do?” Think about the vastness of the word “anything,” and the one thing it cannot include: the return of the lost loved one. Also, offers to help are something mourners receive in abundance at funerals and at shivah, but as time goes on, the offers trickle down to nothing. A year in, people who haven’t been through a loss themselves may assume you’re “fine.” And while you probably will be functional to some degree, at least, you’re probably not “fine.” Instead, if you’re offering assistance, get specific — grocery shopping, picking up kids from school or activities, baby-sitting so that the mourner can have some personal time. Specific offers give the mourner a chance to say “yes” or “no, thanks,” but without challenging them to think deeply about what they need and what you can and cannot provide. And if you’re a friend who really wants to be supportive, offer assistance even after shivah, or during the year of mourning, or beyond, after the offers have faded away but the need for support remains.

Avoid judgmental commentary about the funeral, the shivah or about how the mourner is grieving.

In many communities, there is variation in how people participate in mourning rituals. For instance, traditionally, shivah is held for seven days (shiv’ah means “seven” in Hebrew) for a close blood relative (parent, sibling or, God forbid, a child) or a spouse, and in a designated year of mourning, traditionally mourners abstain from “celebration.” But some (especially the non-Orthodox) are altering these traditions to fit their lives: sitting shivah for an aunt, uncle or grandparent, or only observing a few days of shivah. People want to connect to Jewish meaning and tradition, but not necessarily in a strictly Orthodox halachic framework. Saying things like “you’re not supposed to” or “not allowed to” grieve in a specific way is counter-supportive: The function of shivah, in particular, is to help the community gather around a mourner for support, not criticize the depth of their feelings or the minutiae of their approach to mourning. So don’t render a judgment as to whether it’s appropriate or halachic. Instead, if you’ve ever been on the inside of a year of mourning, you can offer, “If you ever want to know what helped me, I’m happy to share.” And if you haven’t been, just be there and listen.

Avoid over-empathizing with the mourner’s experience and emotional state. While this comes from a good place, saying, “I know exactly what you’re going through” minimizes the intensity of the mourner’s emotional state and shifts the conversation to being about you. For most mourners, especially at funerals and during shivah, this is not comforting; it’s a negation of their special status in that space. Occasionally, people double down on these kinds of statements, following up with an anecdote about a deceased pet or another “loss” story that isn’t equivalent — because no story of loss is ever really equivalent. Instead, saying, “I can’t imagine how hard this is for you,” or “I know it’s not the same, but I have some experience with loss if you ever want to talk,” is a better approach.

Avoid using shivah as an excuse to badmouth the community or its members. While this might seem a simple enough thing to avoid, the essential awkwardness that people feel when trying to comfort a community member may result in people blurting out things that are unintentionally hurtful. This may include criticizing the eulogies or the funeral service, or gossiping about the community’s failure to let everyone know the funeral was happening. Listen to the mourner. That’s why you’re there, to offer presence, an ear, and words of consolation when you have them. In most cases, that’s enough.

May we all know only simchas. But in the unfortunately inevitable event of a tragedy, let us focus our love and respect on the needs of those who are in the center of the grief circle, and may we as community members take seriously the sacred privilege of helping those who suffer to know that they are not alone.

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