Making death conversations fun!

“Arriving at an acceptance of one’s mortality is a process, not an epiphany.”
– Atul Gawande

By Althea Halchu

Imagine a group of old (mature) friends gathered for a “girls” weekend in balmy Florida. The friendships started in grammar school and have continued for the better part of 50 years. These women have met at least once a year for more than 25 years and shared life’s ups and downs. On this trip, one of the women pulls out a deck of cards called Talk of a Lifetime, and the play begins. I don’t have to imagine, they were my cards and my friends, and we spent the evening sipping wine, taking turns uncovering questions from the deck, discussing end-of-life topics, and laughing! We learned much about each other’s life and end-of-life goals that night. Who would have thought talking about death could be so much fun?

Conversations with loved ones and providers are crucial to the advanced care planning process. In a recent AARP survey of 2,000 adults, “54 percent had not completed a medical power of attorney or advance care directive, and a whopping 62 percent of those said they had not gotten around to it; 15 percent said they did not know how; and 13 percent said they did not like talking about these things.”

Here is a fun solution for those who have their head in the sand. The following games are designed to help people have those conversations in a painless and fun way. Try them out over the mashed potatoes or wine at your next family gathering.

1. Talk of a Lifetime. Created by the National Funeral Directors Association offers 50 cards with 50 questions to help you learn more about your loved ones. Players share stories about life, the things that matter most, and how they want to be remembered.

2. Hello Game is the easy, non-threatening way to start a conversation with your family and friends about living and dying and what matters most to you.

3. Go Wish gives you an easy, even entertaining way to talk about what is most important to you. The cards help you find words to talk about what is important if you were to be living a life that may be shortened by serious illness.

4. The Death Deck is a party game that lets you explore a topic we’re all obsessed with but often afraid to discuss, DEATH. With a playful tone and a sense of humor, The Death Deck is a game and tool that allows friends and family members to open up and share thoughts, stories, and preferences about life and death in a non-threatening and surprisingly fun way. Players partner up to guess answers to deep, funny, and sometimes weird questions on death. With 112 cards and numerous ways to play, The Death Deck encourages lively conversations and life-changing dialogue.

5. Heart to Heart Cards game is designed to make it easier for a family member, a caregiver, or a health provider to understand what a loved one wants through the EOL. Each card is in English and Chinese and is designed to help reach Chinese-speaking community members. However, they can be used by healthy individuals who want family members or friends to know what they would like when their lives may be threatened by injury or disease.

6. Heart2Hearts: Advance Care Planning cards provide 52 conversation starters about advanced care planning. Be prepared to have the most meaningful conversation of your life. Playing, completing the innovative workbook, and discussing it with your loved ones will give them a priceless gift…peace of mind. They will know your wishes and can follow them if you cannot make health care decisions yourself.

7. Elephant in the Room is a set of 96 cards in 4 categories of scenarios and questions for discussion. Each individual can confirm their preferences, enhance communication with their family and health care team, provide time for family and other loved ones to understand decisions, and relieve uncertainty or guilt about decision-making. These are personal conversations, not medical consultations, and they will require a loving commitment of time and attention from all involved.

8. Death Conversation Game facilitates open thinking and conversations on death in safe, respectful environments of chosen friends, family, students, clients, colleagues, or strangers. The depth and breadth of the conversation depend on you. Whether it’s death-related theology, ideology, metaphysics, bookish details, relationship considerations, bereavement, and a number of other subjects. Available online only through Apple or Android.

9. GraveTalk from the Church of England offers 50 unique cards for use in small groups, each with a thought-provoking question to start the end-of-life conversation.

Life: What is important in your life? How would you like to be remembered?

Death: What experiences of death have you had so far? What do you think death means?

Funerals: What will happen when you die? Do you need to make any plans or choices now?

Let the games and conversations begin!

Complete Article HERE!

Can we choose the moment we die?

— So many stories of dying people holding on until a loved one reaches the bedside or leaves the room make some think we may have some control over when we pass away

by Eve Glicksman

The man had promised his betrothed daughter he would walk her down the aisle. So, at the recommendation of the doctor treating him for advanced lung cancer, the wedding date was moved up by two months.

“He was a man of his word,” says Charles von Gunten, the oncologist treating him. It took enormous energy for his bed-bound patient to dress for the occasion, held in a hospice facility, and accompany his daughter down the aisle in a wheelchair, von Gunten says.

That evening, after the reception, the father of the bride died.

You may have heard a version of this story before. A parent hangs on to life until a child arrives. Or against all medical odds, someone lives to see the birth of a grandchild. Or family members sit by the bedside for two days and the loved one dies when they step out for lunch.

Can people choose the moment they die?

Lizzy Miles, a hospice social worker in Columbus, Ohio, sees it all the time. Miles’s own great aunt died “the very second her chaplain walked in the room,” she said. Her great aunt, of strong faith, had been nonresponsive and inexplicably alive for days. In hindsight, the family believes she was waiting for the chaplain.

“All these things happen [often] enough that those who work in the field aren’t surprised,” says von Gunten, a pioneer of palliative medicine in the 1990s and editor in chief of the Journal of Palliative Medicine.

One theory is that a hormonal stimulus may enable us to hang on until a special event or loved one’s arrival. “What people will do for one another in the name of love is extraordinary,” von Gunten says. “I think of it as a gift when it happens.”

But there are limits. To be clear, no scientific evidence exists that we can control the moment we die. If we could will our death, there would be no right-to-die movement or legal battles over euthanasia.

‘Just done living’

Felice LePar, an oncologist with Alliance Cancer Specialists in the Philadelphia area, also believes that people may have some sway over the timing of their death. LePar cautions families that patients sometimes die quickly after deciding on hospice; this, despite no change in their medical condition.

“We can’t fully understand it,” she says. “Some people decide that they are just done living.” Other times, when reviewing lab tests, she wonders how a patient can still be alive.

“My rule of thumb is that when someone says ‘I think it’s soon,’ I listen,” von Gunten says. “They tend to know more than I do” about when they’re dying.

Few scientific studies have explored our last moments of life. Protectiveness and respect for the deceased figure into that. Dying is seen as sacred across all cultures and getting approval from ethical review boards for such studies is difficult, von Gunten says.

Questions about potential harm to participants and intrusiveness arise, Miles add. “Do we bother people while they’re dying to ask questions?” she says. “This is a tender moment for people.”

Sociologist Glenys Caswell in Nottinghamshire, England, a self-described death studies scholar, has studied people who have died alone and stresses that it is not always sad.

“We all want different things in dying as we do in our living,” Caswell says. “Some [who are dying] don’t want people fussing over them or want to be alone when they aren’t feeling well. Others don’t want to distress their family.”

The hospice-at-home nurses whom Caswell interviewed during her research believe we have some measure of control over death after watching many patients die after loved ones left the room. “Hearing voices may be what was holding them on to life,” Caswell says. When the family leaves, they are able to relax and let go, she says.

Protective gesture

Waiting to die until people leave the bedside can be a protective gesture to spare loved ones who might not cope well, Miles says.

“It seems to happen most often when the patient is a parent,” she writes in one of her Pallimed blog posts. Her mother died when Miles took a short break to shower. The social worker says she felt guilty about that for years but learned to respect what seemed like her mother’s choice and personality. “Don’t project your own beliefs about what makes a good death,” Miles says she advises others who experience this.

LePar says people with a terminal illness often think more about the people they are leaving behind than about themselves. They do what they think their family wants, she says, and do not want to be a burden.

That’s why standard advice often includes giving permission to a loved one to die. “That reassurance can help people on both sides let go in peace,” von Gunten says.

“ ‘You’ve done what you need to do. We’re all right,’ ” Caswell suggests as an example of what to say.

Miles sees it differently, however: “If it is fear that is keeping a patient lingering, telling them it’s okay to let go may put unnecessary pressure on them to go before they are ready.”

An awareness of surroundings, people

How much do people in a nonresponsive state know about what’s going on around them? Researchers used electroencephalography to measure the brain response of dying hospice patients to voices and sounds, before and after they lost consciousness.

The study found evidence of the brain responding to sound stimuli, supporting the idea that patients may know when someone is in the room. The researchers could not confirm, however, whether the patients understood what they were hearing or were able to identify voices.

Hospice workers refrain from saying people are “unconscious,” preferring the term “nonresponsive,” Miles writes on her blog. Even actively dying patients seem to have an awareness of what’s going on in the room, she says. Minute gestures — the fluttering of an eye, a swallow or a head turn — can be a response. One patient started breathing along with the music she put on, “almost like he was conducting,” she recalls.

I am convinced my father could hear me while dying despite his deep-sleep appearance. He squeezed my hand once and there was an upward head tilt when I said I’d take care of my mother. Then, a funny, bemused lift of the brow when I said I would write about him.

More convincingly, I had been updating my father regularly on my brother and sister-in-law’s journey to be there as I received word in texts — the flight delay, rental car line, traffic. Within 15 minutes of my brother’s arrival, my father died after holding on, nonresponsive, for 16 hours.

Death is not well-understood

“It’s impossible to know, let alone prove or disprove,” says Sam Parnia, about whether we can influence our time of death. Parnia is an expert in the scientific study of cardiac arrest and death and associate professor of critical care medicine at New York University Grossman School of Medicine.

What Parnia is sure about from his research is that death is not a fixed moment and that it is not well understood. Parnia has studied thousands of testimonies from people who were resuscitated after being considered dead. They consistently described feeling conscious, lucid and aware of what was going on after their heart stopped.

“Calling the time of death when the heart stops beating and the body and brain stop functioning reflects social convention rather than the science of what is happening to the body biologically,” Parnia says. “Studies have shown categorically that our brain cells do not die for many hours after we die.”

Von Gunten advises people to behave around the dying the same as always — not being afraid they will break if you hold them, for example.

“You don’t have to keep children quiet and lights don’t have to be dimmed,” he says. “Whispering outside the door is the worst thing you can do if that person always wants to know everything.”

Ideally, the dying person will have talked to family and friends about their end-of-life wishes beforehand, Caswell says. Who do you want at your bedside, or do you prefer solitude? Do you want to listen to a cherished symphony during your last hours or have someone read a favorite poem? It’s a hard conversation to have but everyone benefits from that openness, Caswell says.

Dying is the last thing you do in life. Why shouldn’t it be exactly as you want it, and maybe even the moment you want it.

Complete Article HERE!

What ‘old age’ actually means as a cause of death

By Gabriella Ferlita

The Queen’s cause of death has been announced, and people are now wondering what it really means.

After spending more than 70 years on the throne and dying at age 96, the cause of the Queen’s passing has recently been announced as that of ‘old age’.

While it’s very common to hear that somebody has died ‘of old age’, the phenomenon in itself is extremely rare from a medical perspective.

While we often mean that an older person has died of complications attributed to their age, like pneumonia, or as a result of a heart attack, it should only be provided as the sole cause of death in ‘very limited circumstances’ by a coroner on somebody’s death certificate.

The Queen’s cause of death has officially been announced. Credit: Graham Hunt / Alamy Stock Photo
The Queen’s cause of death has officially been announced.

Ageing, in itself, cannot cause somebody to die. There is, however, a condition called ‘Geriatric failure to thrive’, which medical professionals have studied which ‘describes a state of decline’ in older patients who may experience ‘weight loss, decreased appetite, poor nutrition, and inactivity.’

According to GP notebook, there are few situations in which ‘old age’ can be penned as somebody’s cause of death by a medical professional – including having ‘personally caring for the deceased over a long period (years, or many months)’ and ‘observing a gradual decline in your patient’s general health and function.’

Other situations which would allow such a prognosis includes a lack of awareness around ‘any identifiable disease or injury that contributed to the death’, and being ‘certain that there is no reason that the death should be reported to the coroner’.

'Old age' is rarely used as a cause of death on a medical certificate. Credit: Unsplash
‘Old age’ is rarely used as a cause of death on a medical certificate.

They also add: “It is unlikely that patients would be admitted to an acute hospital if they had no apparent disease or injury.”

Doctors are also advised to also mention ‘as appropriate, any medical or surgical conditions that may have contributed to the death’ alongside ‘old age’.

Doctors are also advised to also mention ‘as appropriate, any medical or surgical conditions that may have contributed to the death’ alongside ‘old age’.

Complete Article HERE!

Funerals can cost a fortune.

— Here’s how to keep prices in check.

By Kevin Brasler

Grieving for a loved one is acutely difficult. The last thing anyone wants to do just after the loss is sit across from a salesperson in a high-pressure, time-sensitive situation making important and expensive choices.

Funeral homes provide important services, but they are also businesses trying to maximize each sale. Staff may try to sell products and services you do not want or need or that you can’t afford. Most funerals and burial arrangements in the United States cost between $7,000 and $10,000. There is nothing wrong with an expensive funeral if that’s what the family wants. But many families that might prefer a simple, dignified ceremony end up with something lavish and costly.

The nonprofit Consumers’ Checkbook collected ratings from local consumers on funeral homes they had used. Checkbook also evaluated funeral home prices by having undercover shoppers collect their fees and casket prices. Until Oct. 31, Washington Post readers can access Checkbook’s ratings of funeral homes free via Checkbook.org/WashingtonPost/funerals.

Protect yourself from overspending

If you are planning a service, do not go to a funeral home alone. Take along a less-involved companion who can assure you that sensible cost-saving decisions are okay.

Specialized organizations can help with this as well. Nonprofit funeral consumer organizations, also referred to as “memorial societies,” provide consumer education and resources regarding rights and options for burial and cremation. The Funeral Consumers Alliance (funerals.org) is the national umbrella group for affiliated societies. The Washington area has two organizations: the Funeral Consumers Alliance of Maryland and Environs (mdfunerals.org), which also serves the District; and the Memorial Society of Northern Virginia (memorialsocietyva.org).

And while it can be difficult, preplanning your own funeral is sensible and gives valuable input to your survivors when they are forced to make many decisions on short notice. Write down and share your preferences with loved ones, and include them in the process to make sure their emotional needs are met.

What to consider

When discussing options with a funeral home, start by asking for its general price list (GPL). The Federal Trade Commission requires funeral homes to provide a copy of their prices if you ask. Many GPLs are long and confusing, so also request a written itemized quote for services you’re considering.

Some funeral directors may encourage you to come in because “these matters are too complicated to discuss over the phone or via email,” or “we will surely be able to work something out between us.” Checkbook’s advice: Deal only with funeral homes that readily supply detailed pricing information to potential clients without requiring an in-person appointment.

There are several options for disposing of remains. Most families select burial with a traditional funeral, immediate burial or cremation (with or without a funeral).

Burial can be done directly, with no viewing or ceremonies, or with any combination of viewing, ceremony and graveside service. It usually requires a casket; cemetery plot; fees to open and close the grave; cemetery endowment (upkeep); and a marker, monument or headstone.

In Checkbook’s survey of local funeral homes’ prices, costs for a traditional funeral with oak casket ranged from $7,290 to $26,575, with an average of $12,867. Cemetery costs will add thousands to those amounts.

Immediate burial is far less costly if an inexpensive casket is selected. A funeral home files the necessary paperwork, places the unembalmed body in a casket and takes the remains to a cemetery for burial, usually within one day. On average, families will save $5,000 to $6,000 compared with a traditional funeral.

Cremation is an increasingly popular choice. Like burial, it can be direct or after a funeral. Cremation also allows flexibility on the timing and location for services; many families now hold memorial services in their homes or at the deceased’s favorite place.

Cremated remains may be scattered, kept at home, buried in a cemetery or interred in a columbarium. Burial or interment adds to the cost. In Checkbook’s price survey, funeral homes’ fees for direct cremation (no funeral) ranged from $1,295 to $7,595, with an average of $3,343.

The casket is usually the most expensive item in funerals. Casket prices range from less than $1,000 for a wood box to $25,000 or more for elaborate models. The markup on a casket is often three to five times wholesale, so be leery. A funeral director’s advice — and even the design of the selection room — may lure you to pay too much. Most people choose midrange steel or hardwood models for $3,000 to $6,000.

The least expensive containers — cardboard containers or pouches — are adequate for cremation or direct burial. Some funeral homes have rental caskets that can be used for viewing, allowing you to buy a less expensive one for burial.

Checkbook’s undercover shoppers found the least expensive way to buy caskets is to shop online. For example, for an oak casket, the average price quoted by area funeral homes was $3,782; shoppers found a comparable model online for $1,200. Online sellers ship caskets overnight, and by law, funeral homes must use them, if requested.

You also need to choose between a religious and secular service, held at a funeral home, religious establishment, residence or elsewhere. Consider whether you want a traditional funeral, with the casket open or closed, or would prefer a memorial service with no body present. Memorial services, church services and graveside services usually cost less than conventional funerals.

How to pay for it

Check on resources that might help pay for funeral costs. Because many people are not aware of the benefits available for final expenses, money often remains unclaimed. Most death benefits are not automatically sent to survivors and must be applied for.

A lump-sum Social Security death benefit of $255 is available to a surviving eligible spouse or dependent child (under 18).

In April 2021, the Federal Emergency Management Agency launched a reimbursement program to help those who lost loved ones during the coronavirus pandemic. Anyone with covid-related funeral expenses may be eligible for a reimbursement of up to $9,000. You cannot apply for funeral reimbursement money online; you must call FEMA’s covid-19 funeral assistance helpline at 844-684-6333 (TTY: 800-462-7585). There is no deadline for requesting this benefit.

Honorably discharged veterans and their spouses may be entitled to burial in one of 155 national cemeteries in 42 states (and Puerto Rico), with a grave marker and a flag for the casket. Other benefits may be available if the death occurred during active duty or during hospitalization in a veterans’ facility. To check, contact Veterans Affairs’ Veterans Benefits Administration (800-827-1000, benefits.va.gov).

Other possibilities include payments from fraternal organizations, lodges, clubs, union welfare funds, retirement plans and employers.

Many funeral homes push plans that let you prepay for your funeral. These agreements represent major financial commitments, and many unscrupulous places have embezzled customers’ prepaid funds; others have gone out of business without protecting their customers’ prepaid assets. A better arrangement is to open a joint savings account with a likely survivor who will get immediate access to the funds upon your death.

Complete Article HERE!

Dementia in Prison Is Turning into an Epidemic

— The U.S. Penal System Is Badly Unprepared

Older prisoners will make up a third of the prison population in a decade, and many of them will develop dementia

By Sara Novak

Terrell Carter remembers one prisoner in particular. They had both been seeking commutations of their life sentence so they could eventually apply for parole. But Carter says that in the midst of the process, his fellow inmate became so debilitated with dementia that the man could no longer function well enough to complete the paperwork.

Within a few months, Carter says, this prisoner was incapacitated, lying in bed with arms outstretched over his head, calling for help. Carter, an inmate who volunteered in the hospice ward of State Correctional Institution Phoenix in Collegeville, Penn., says that his fellow prisoner languished and eventually perished in prison because he was too mentally impaired to file for forgiveness. “By the end, he didn’t know the crime he was charged with committing,” Carter says

In the October 2021 issue of Northwestern University Law Review, Carter, along with Drexel University associate professor of law Rachel López, argue that the current sentencing structure all too often locks people up and throws away the key. A former commissioner on Pennsylvania’s sentencing board, López is especially concerned with the number of elderly people who are incarcerated. “It’s all part of the legacy of the ‘tough on crime’ era,” she says.

A survey by the Pew Charitable Trusts found that the number of inmates age 55 or older increased by 280 percent from 1999 to 2016. Three-strikes laws and mandatory life sentences without the possibility of parole expanded during the 1980s and 1990s, and many of these laws are still on the books today. As the number of aging prisoners balloons, so, too, do instances of dementia. An article López authored in the June 2020 issue of Federal Sentencing Reporter projected that between 70,341 and 211,020 of the estimated 400,000 incarcerated elderly in 2030 will develop dementia. Alzheimer’s disease is the most common diagnosis, but dementias that involve Lewy bodies, the vascular system and Parkinson’s disease are also on the list.

Prison may also accelerate aging and the possibility of developing the disease, according to a January 2022 article published in the journal Health & Justice. Study author Bryce Stoliker, a researcher at the University of Saskatchewan, says that the high risk is because of challenges faced in prison life—and inmates’ experiences before incarceration. Prisoners are often marginalized members of society with less access to health care, poorer diet, issues with alcohol or drug misuse, mental health problems and potential traumatic brain injuries—all factors that increase the likelihood of developing the condition. “Once behind bars, a lack of stimulation and an overall poor quality of life magnifies the problem,” Stoliker says.

Prisoners with dementia are also vulnerable to abuse. Their erratic behavior and inability to follow directions is aggravating to other prisoners and to the staff in an already tense and sometimes violent environment, says Tina Maschi, co-author of the book Aging Behind Prison Walls: Studies in Trauma and Resilience.

A 2012 study she authored in the Gerontologist found that those with dementia are increasingly vulnerable to “victimization.” If they become aggressive toward staff or can’t stay in line, they’re more likely to be reprimanded. “They’re no longer in touch with the prison rules, and as a result, it appears to staff, who often aren’t trained in dealing with dementia patients, that they’re acting out,” Maschi says. Additionally, according to the study, they can become victims of sexual assault by other prisoners because they can’t defend themselves.

With strict sentencing practices still in place, the problem could get worse. The American Civil Liberties Union projects that in a decade, prisoners age 55 and older will make up one third of the U.S. incarcerated population. And prisons, López says, don’t have the resources to tend to this highly vulnerable population. Still, there may be some relatively available short-term solutions. Older prisoners are often housed together, but senior structured living programs that include daily stimulation such as puzzles, knitting and cognitive exercises may help to reduce the risk of elderly prisoners who get dementia later on.

True Grit, a program at Northern Nevada Correctional Center, is described in a review published in the December 2019 issue of Health & Justice. It teaches inmates older than age 55 skills such as latch rug making, crocheting, painting, jigsaw puzzle making and beading, as well as emphasizing the importance of physical exercise. The program has been shown to increase inmate quality of life, reduce medication use and behavioral problems, and enhance overall health and well-being.

Compassionate release is another tool that is largely underutilized, according to experts. Also called “geriatric parole,” it’s currently used once patients get to the end of their life. But for the program to reduce the elderly burden on the prison system, it would have to be used before inmates are so ill that they can no longer be integrated back into society. Once prisoners are too far gone, says Ronald Aday, author of the book Aging Prisoners: Crisis in American Corrections, it’s much harder for them to find “a place to land” outside of prison, and nursing homes are unlikely to admit a felon. Still, a 2018 report from Families Against Mandatory Minimums (FAMM) found that the program is rarely used and that, in many states, it presents aging inmates with a troubling “number of barriers” to getting out.

When inmates do develop dementia, prison workers, at a minimum, need to be provided with basic training to deal with the disease. “Correctional staff and those in direct daily contact with older prisoners need to understand both their vulnerability to other inmates and their inability to understand orders,” Aday says.

Looking ahead, dementia wards in prison may be needed to house prisoners with cognitive problems. One such memory ward opened in 2019 at Federal Medical Center Devens in Massachusetts. The facility staff is specially trained to take care of those with dementia.

But building dementia wards in prisons shines a spotlight on a larger issue: prisons are not properly equipped to house these patients because this was never their purpose in the first place. “The original intent of prison was to rehabilitate,” Aday says. “Correctional institutes were meant to ‘correct people’ so they could go back out and work.” Somewhere along the way, he adds, we’ve lost our purpose, and as a result, 10-year sentences have tripled, and life in prison without the possibility of parole is all too common. If we don’t get ahold of our out-of-balance sentencing structure, Aday says, we’ll never be able to really address the issue.

Carter, now age 53, feels lucky that he made it out “by the skin of his teeth.” After graduating from Villanova University and spending years taking care of elderly inmates, he was able to commute his sentence to life with parole for a robbery that he says went terribly wrong when he was 22 years old. Last July he was released after spending three decades in maximum-security prison.

Still, Carter is haunted by those he left behind, especially in the hospice ward. He says by the end of their life, most of them don’t even realize where they are, let alone what got them there. “You gotta wonder what kind of punishment it is if you don’t even know you’re in prison,” Carter says.

Complete Article HERE!

This is how Claire is preparing her family (and herself) for her death

Claire Romeijn was 29 when her doctor gave her life-altering news.

Claire says she didn’t want to overload her daughters with ‘disastrous news’ when she found out she was terminally ill.

By Tahnee Jash

She had been experiencing severe abdominal pain three weeks after having a baby, but it wasn’t until her daughter was eight months old that she decided to find out what was wrong.

“When I finally had a colonoscopy and endoscopy, they couldn’t get the cameras through because the tumour was so large,” Claire says.

“It was a big shock to everybody.”

Following a diagnosis of bowel cancer, she underwent surgery and chemotherapy and for a period was cancer free — until she was back to see the doctor again.

“I got the second diagnosis that it was back, and I was now stage four,” Claire, who is now 33, says.

Without a cure and the cancer spreading to other organs in her body, Claire is now going through her last chemotherapy treatment available.

She spoke to ABC podcast Ladies, We Need to Talk about how she’s coping.

Talking about death with your children

As Claire was still processing the news, she knew she had to figure out how to tell her five daughters — in particular her eldest, who was 10.

She says she didn’t want to overload anyone with “disastrous devastating news” around being terminally ill.

So, the Sunday after receiving her diagnosis, Claire made fresh pancakes and told her children gently over breakfast that she was starting chemotherapy again.

“I said, ‘Mummy’s going to have to do chemo again’.

“My oldest was at the end of the table and she was very, very quiet, just processing it. [Then] she says, ‘Does that mean your cancer’s back?’ And I said, ‘Yes’.”

Claire says it’s been especially hard for her children and partner to process her diagnosis.

“[My eight-year-old] was crying [one] night and I said, ‘What’s wrong? And she said, ‘I don’t want a new mummy’,” Claire says.

“I said, ‘I will always be your mummy, that’s never going to change’.”

Clinical psychologist and director of the Death Literacy Institute, Kerrie Noonan, has spent her career helping people feel more comfortable talking about death.

She says it can be hard to explain it to children, especially when they’re young, but her advice is to talk openly.

“For young children, grasping death as a permanent thing is an important part of their grief,” Dr Noonan says.

Religion or spirituality can be a source of comfort when it comes to grief but helping children grasp the physical process is just as important.

“Often our inclination is to say to kids, ‘When I die, I’m going to heaven’,” Dr Noonan says.

“It’s not concrete enough for a young child to kind of understand.”

“So, [instead you might say], ‘When I die, my body stops working, I won’t have any pain anymore and my body will be buried’,” she says.

Claire’s still trying to work out the best way — and time — to tell her kids she’s terminally ill and says it’s been an overwhelming experience preparing her family for her death.

One thing that is helping her is creating special keepsakes for her daughters to cherish.

“My big girls will remember, I know they will but the five, three and one-year-old is a different story of what memories they’ll hold on to,” she says.

“I want to write a letter to them all individually, about how much I love them [and] funny little things their dad might not remember.

“I want to write a list of ‘Mummy’s advice’, for when they are older, but I’ll definitely be putting the aunties on the ‘period talk’ because I don’t trust their father,” she says, laughing.

Talking about death with your partner

Claire also worries about her husband and how he’s coping with all the changes.

“He’s not someone to dwell on the negative, so it’s really hard to get him to open up,” she says.

“We’ve had moments where we will grieve together, [but] he doesn’t talk about it, not even with mates.”

Avoiding discussion is a common way some people cope, but Dr Noonan says the best way through it is trying to being open with each other.

“I guess the first thing is to acknowledge just how bloody hard it is,” Dr Noonan says.

“[We think] ‘Oh she’s got enough to worry about, I can’t talk to her about how scared I am about the future, so I’ll just suck it up and keep going and same [goes] the other way’.

“Everyone’s protecting everyone, but no one’s actually talking and that can be one of the biggest barriers.”

After going through intensive treatments like chemotherapy, intimacy is often the last thing on a couple’s mind, but Dr Noonan says it could provide the comfort and sense of relief that the relationship is longing for.

“People may not want to feel like having sex as such, but they may really still have that great need to touch, connect and have comfort from that touching and connecting,” she says.

Claire and her husband find it hard to talk about the future, but something that’s helping them is focusing on the present.

“We focus on making memories,” she says.

“My husband gets through it by planning extravagant trips in his mind … he bought his own calendar to write down where we’re going and put [down] every country.

“[He] is super optimistic and it really kind of keeps me together,” she says.

‘I allow myself to be sad, but I don’t let it overcome me’

Claire’s been given a life expectancy date by her doctor, and she says there are days where she feels anxious about it.

“My oncologist ended my appointment with a ‘you better make holidays this year’ and that’s a real downer but it’s also a reality,” she says.

To help ease some of the anxiety, she takes antidepressants, but it’s her family who help her through those difficult days.

“I allow myself to be sad, but I don’t let it overcome me,” she says.

“I’ve got ive girls who need me, and they are the ones who make me get out of bed and try to keep [life] as normal as possible.”

Complete Article HERE!

My Grandfather’s Death Party Was a Final Gift to His Family

The end of life is often invisible, shut away in nursing homes or intensive-care units. There’s another way.

By Sara Harrison

My grandfather liked to stage a scene. He moved to California in 1935 to work in Hollywood, becoming a director for B-list movies and TV shows like “77 Sunset Strip” and “The Mickey Mouse Club.” Despite his work, he didn’t particularly care for film and didn’t own a TV until 1964. Even then he mostly used it to watch Dodgers games. What he liked was the process of making a show: reworking the script, setting the angles, being in charge.

Like so many in his generation, he was a multipack-a-day smoker; a Philip Morris cigarette hangs from his lower lip in nearly every photograph I have of him. He lived with emphysema for decades, maintaining his last sliver of healthy lung tissue through a combination of lap swimming, walking, Scotch and luck. But at 97 years old, he had flagging energy. No longer able to walk from his bedroom to the kitchen without stopping to catch his breath, he rigged up an oxygen tank that allowed him to roam the length of his home. Tubes followed him up and down the corridor.

For a brief moment, at my grandfather’s party, I got to slow down the inevitable, to be with the people I grew up with, in the place we held sacred and dear.

Death is, famously, one of the few certainties in this life. It’s also a reality that doctors, patients and families tend to avoid. In a recent report, The Lancet Commission on the Value of Death notes that today death “is not so much denied but invisible.” At the end of life, people are often alone, shut away in nursing homes or intensive-care units, insulating most of us from the sounds, smells and look of mortality.

Not so for my grandfather. Though he didn’t rush headlong into the hereafter, he didn’t want to wait for his faculties to fail one by one. He wanted to die with a modicum of independence, with hospice care.

Sign up for The New York Times Magazine Newsletter  The best of The New York Times Magazine delivered to your inbox every week, including exclusive feature stories, photography, columns and more.

On an unseasonably warm Los Angeles day in May 2011, a cast of characters — his children, grandchildren and friends — assembled at his home, ready to play their part in the last act of his life. I was a college junior at the time, required to read Coleridge’s “Kubla Khan” for class that week. I found it in an English poetry collection of my grandfather’s and read sitting on a sagging couch, intermittently distracted by family members who, one by one, came in and asked what I was doing. They’d smile and recite the opening lines: “In Xanadu did Kubla Khan/A stately pleasure-dome decree:/Where Alph, the sacred river, ran/Through caverns measureless to man/Down to a sunless sea.”

What ensued was a five-day tropical vacation. My grandfather couldn’t stand the air-conditioning, so we wore bathing suits most of the day and paged languidly through withered photo albums. I floated in the sacred waters of my childhood — the swimming pool — and harvested lemons from the prolific backyard tree. When 6 o’clock rolled around, my grandfather would ask, “Who’s pouring me a Scotch?” Cocktails, cheese, olives and stale water crackers appeared. We listened to classical records and told stories and took turns cooking dinner. But just as Coleridge’s vision faded, interrupted by a person from Porlock, our reverie was splintered by closed-door meetings with hospice nurses and conversations with doctors, who could attest my grandfather had a sound mind and a failing body and was eligible for end-of-life care.

However perverse it may sound, that death party — as my sister and I came to call those five days — remains one of the most profound experiences of my life. For a brief moment, at my grandfather’s party, I got to slow down the inevitable, to be with the people I grew up with, in the place we held sacred and dear. Amid that joyful reverie, I had time to sober up and confront the simple reality that my grandfather wanted to die and that everything would change. I saw that the man who had commanded movie sets and TV crews now rarely left his house. That his sweaters hung loose on his stooped shoulders, and that his rosebushes withered with neglect. That things were already changing, whether I was ready for it or not.

People often talk about death as if it’s the worst thing that can happen to someone. As if it’s something that must be avoided at all costs. Better to age, however painfully, however diminished, than to ever admit that we are mortal. But at the end of a long, full life, my grandfather was done. He died with power and agency, love and support. To have that death, he had to acknowledge and embrace his mortality. At our death party, he gave his family a chance to accept that fact, too.

More than a decade later, my parents are discussing their own plans, debating whether to be cremated or buried. My dad calls to talk about what I want. Would I visit their grave sites? Would that be meaningful? There are no monuments for my grandfather, whose body was eventually cremated and scattered at Evergreen Cemetery in Los Angeles. When I miss him most — when I married, or when my nieces were born — I pay homage with a cocktail, a toast and a memory. I think about one evening during the party when, as the room hummed with humans, he held my head in his hands. A few days later, he had his usual Scotch, went to bed and died. In my memory, this moment — the moment when we looked at each other, when we said I love you and when we let each other go — lives on. It comforts me when I pass through caverns of sadness and am marooned in sunless seas of grief. I tell my parents I don’t need them to have a grave site.

Complete Article HERE!