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.

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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!

Final moments of life have one thing in common

— Three professionals who work with death and dying have described the one thing they all have in common.

By Bek Day

Woody Allen famously said “I’m not afraid of death, I just don’t want to be there when it happens,” and whatever you think of the scandal-plagued filmmaker’s behaviour in life, it’s a sentiment many can agree with.

“We live in a death-denying culture,” says Dr Merran Cooper, who is also trained as an end-of-life doula and physiotherapist. “By denying the possibility we might die, and having conversations about it, we deny ourselves the opportunity to have the most important conversations of our lives with the most important people.”

But just what are those all-important final moments like for people? Is death really as frightening as we think?

News.com.au spoke to three professionals who work with death and dying and their descriptions all had one major thing in common: it’s usually more peaceful than you might expect.

Camilla Rowland, CEO of Palliative Care Australia

“My experience has been that usually as the different organs start to shut down, people come in and out of a semiconscious state, and it is usually very peaceful,” Camilla explains, adding that the feeling of someone’s ‘spirit’ ‘energy’ filling the room is also common.

“I’ve had that experience, and also many other members of my palliative care team have said that as well, that they felt the spirit of the person around them. And that’s not necessarily a religious thing, it’s just a feeling that occurs. I’ve had people from all walks of life and all different belief systems say the same thing.”

Patsy Bingham, Death Doula

“Peace, calm, relief, hysteria – there could be any one of these feelings depending on who died, how they died and whether they were too young to die,” explains Patsy.

“But for everyone, it is a defined moment in time, and I have a habit of looking at the clock when someone takes their last breath, as family members don’t, and then ask later.”

Dr Merran Cooper, CEO of Touchstone Life Care

“Everyone dies differently but most commonly, when death is expected, a person begins to sleep more, and breath more shallowly until it is very hard to tell whether they are breathing or not,” Dr Cooper explains.

“It can be a peaceful thing to watch. There are noises that worry the person watching, and even bleeding which is distressing to watch, but for the person dying, they slowly move to a place of deeper and deeper unconsciousness until they do not take the next breath.”

Complete Article HERE!

Green Burial Options Can Spur End-of-Life Conversations

A ‘gradual goodbye’ process can ease caregiver stress, aid acceptance

By Lee Woodruff

It used to be that end-of-life discussions — specifically those around final wishes for burial sites and memorials — were limited to a few choices. Does my loved one want a traditional burial or does he want to be cremated? Is there a family plot? Should we opt for a burial spot central to all? These topics, while difficult and sometimes awkward, are critical. And advance planning is one way to ease the anxiety and unknowns that arise in the wake of death and loss.

Sometimes those early discussions can lead you in a surprising direction. For the Groves family, it was choosing a green burial.

Pamela Groves-Gaggioli, 69, of Northfield, Minnesota, started the conversation with her brother Steve Groves, 67, of Stillwater, Minnesota, after their mother asked the siblings to help her find a burial plot where the entire family could visit. Maxine Groves, 92, of Hudson, Wisconsin, had grown up on a farm. And while this remarkable woman was hale and hearty, the Groves family wanted to get what they called “a head-start on the end-of-life conversation.”

“We began looking at some of the cemeteries around our homes and they just didn’t feel right, for one reason or the other,” says Pamela, who had recently lost her own husband of 26 years, Fred. She’d taken Fred’s ashes to Italy and spread some in a gorgeous place in the woods, but she also was determined to find a spot near home where she and her daughter, Maggie, could go and feel close to him.

A growing memorial

A friend told Pamela about Better Place Forests’ St. Croix Valley location, in Scandia, Minnesota, a memorial forest where family members choose a tree and have their cremated ashes mixed with local soil and spread around the tree as a final resting place for themselves and future generations.

Pamela investigated. As she visited the forest, she spotted a red maple with seven branches, the exact number of her extended family members.Maxine Groves was gifted a chainsaw for her birthday from her kids.

Suzy Oswald Maxine Groves was gifted a chainsaw for her birthday from her kids.

Suzy OswaldSomething about the tree struck her. Instead of looking for a plot in the ground, what if, in death, they could all be part of something growing and living, like this tree?

Pamela shared the concept with her brother, Steve; he was all in. As executor of the will, he knew they had to start making some decisions before their mom died, especially with five siblings. When their father had passed away 13 years earlier, nothing had been planned and it had been a scramble during an already sad time. He was determined that the family not repeat that experience.

“We’re a positive, outgoing, nature-connected and close-knit family,” says Steve. “The idea of making our final resting place all together in a forest, each with our own branch, was extremely appealing. For us, it was everything that a traditional cemetery wasn’t.”

The whole family traveled to see the spot. “It was a spectacular day, and we all felt really good about the excursion; upbeat, not sad,” Steve recalls. “My mom could not have been happier. Making this decision and standing around the tree, it was like a 1,000-pound rock had been lifted off our backs.”>

Groves Family
Maxine Groves was gifted a chainsaw for her birthday from her kids.

Connecting to nature

Places like Better Place Forests are part of a macro trend of “green end-of-life options” that offer a personalized and eco-friendly solution to end of life. According to the National Funeral Directors Association’s 2022 Consumer Awareness and Preferences Report, 60.5 percent of the Americans surveyed would explore green funeral options for their potential savings and reduced environmental impact. Many of these new options connect people more closely to nature in death, whether it’s planting ashes under fruit trees, a “gentler” water-based cremation like the process used at White Rose Aqua Cremation in California, choosing biodegradable caskets or even using remains to become part of rebuilding vital coral reefs.

Micah Truman, 51, CEO and Founder of Return Home in Auburn, Washington, says “human beings were designed to be returned to the earth.” His company has developed a process called terramation that uses microbes in the body to gently convert human remains into soil. The 60-day process involves placing the body into a vessel with alfalfa, straw and sawdust. Once the terramation process is complete, the families may use the soil in any way they see fit, sharing with others and planting trees or flowers in beloved places.

“It’s so important to begin talking about the dying process and yet it’s still a conversation that most of us are hesitant to have,” he notes. 

Over Return Home’s 15 months of operation, Truman has witnessed some unexpected and wonderful moments of connection, conversation and acceptance around death. “People will come to our facility and visit the vessel, sit by it and talk to their loved one,” says Truman.  “They decorate the vessel with important keepsakes, and at the start of the terramation process [they] place flowers, food or even letters in the vessel. This gradual way of saying goodbye has been beautiful to observe.”

Less stress, more peace

Being in nature eases pain and grief, says John Collins, CEO of Better Place Forests.

“Even having an end-of-life conversation when surrounded by trees is certainly less stressful engulfed by green leaves and birdsong,” he says.  “Unfortunately, for the past century or so, death and end-of-life care have been treated more transactionally and with some remove, as if dying were taboo. … We encourage people to start the conversations here and use the trees as a way to think about their own end of life story.  It makes it so much less stressful on both the caregivers and family members.”

Pamela is all for less stress. For her that means making the hard end-of-life choices now. “My daughter Maggie is my only one,” she explains. “I know from personal experience that when the end comes, you’re grieving, and I don’t want to leave her alone trying to make all these tough decisions.  I want everything to be easy for her. Out in nature is where I feel closest to God.”

Members of the Groves family say they are happy that the overall cost of their decision of a family tree was less expensive than a traditional burial and family plot, but are also placated by the fact that by being in a protected forest means that no one will ever be able to build there. Steve and his siblings also love that the organization donates trees to areas that have been devastated by forest fires.

“Mom gave us our love of the outdoors as kids going up to the farm, and this decision is a real extension of that,” says Steve. “How can you argue with the fact that you’re being kind to nature and at the same time you’re making everyone happy? That’s priceless to me.”

End-of-Life Conversations

AARP family caregiving expert Amy Goyer offers tips on how to make ongoing discussions go smoother:

Start early. Bring up the topic in “some day” terms. Don’t wait until a health crisis.

Watch words. Use language the family member is comfortable with: death vs. end of life; funeral vs. memorial service.

Use a conversation starter. Ease into the discussion by mentioning an article, book or movie that deals with end-of-life issues.

Discuss a recently attended funeral. Say, “What did you like? What do you want for your service/burial?”

Most important: Remind your loved one this is their chance to have their wishes fulfilled. By making these decisions now it will help you and others during a time of sorrow.

Complete Article HERE!

Shift in Child Hospice Care Is a Lifeline for Parents Seeking a Measure of Comfort and Hope


Hospice nurse Raul Diaz checks Aaron Martinez’s vital signs. Despite his mom’s seemingly healthy pregnancy, Aaron was born with most of his brain cells dead, the result of two strokes and a massive bleed that occurred in utero.

By Bernard J. Wolfson

When you first meet 17-month-old Aaron Martinez, it’s not obvious that something is catastrophically wrong.

What you see is a beautiful little boy with smooth, lustrous skin, an abundance of glossy brown hair, and a disarming smile. What you hear are coos and cries that don’t immediately signal anything is horribly awry.

But his parents, Adriana Pinedo and Hector Martinez, know the truth painfully well.

Although Adriana’s doctors and midwife had described the pregnancy as “perfect” for all nine months, Aaron was born with most of his brain cells dead, the result of two strokes and a massive bleed he sustained while in utero.

Doctors aren’t sure what caused the anomalies that left Aaron with virtually no cognitive function or physical mobility. His voluminous hair hides a head whose circumference is too small for his age. He has epilepsy that triggers multiple seizures each day, and his smile is not always what it seems. “It could be a smile; it could be a seizure,” his mother said.

Shortly after Aaron was born, doctors told Adriana, 34, and Hector, 35, there was no hope and they should “let nature take its course.” They would learn months later that the doctors had not expected the boy to live more than five days. It was on Day 5 that his parents put him in home hospice care, an arrangement that has continued into his second year of life.

The family gets weekly visits from hospice nurses, therapists, social workers, and a chaplain in the cramped one-bedroom apartment they rent from the people who live in the main house on the same lot on a quiet residential street in this Inland Empire city.

A photo shows two nurses attending to 17-month-old Aaron Martinez while his mother, Adriana Pinedo, holds him.
Adriana Pinedo holds her son, Aaron Martinez, during a visit with hospice nurses Raul Diaz (left) and Shannon Stiles. Pinedo describes the weekly hospice visits from nurses, therapists, social workers, and a chaplain as “our lifeline.”

One of the main criteria for hospice care, established by Medicare largely for seniors but also applied to children, is a diagnosis of six months or less to live. Yet over the course of 17 months, Aaron’s medical team has repeatedly recertified his hospice eligibility.

Under a provision of the 2010 Affordable Care Act, children enrolled in Medicaid or the Children’s Health Insurance Program are allowed, unlike adults, to be in hospice while continuing to receive curative or life-extending care. Commercial insurers are not required to cover this “concurrent care,” but many now do.

More than a decade since its inception, concurrent care is widely credited with improving the quality of life for many terminally ill children, easing stress on the family and, in some cases, sustaining hope for a cure. But the arrangement can contribute to a painful dilemma for parents like Adriana and Hector, who are torn between their fierce commitment to their son and the futility of knowing that his condition leaves him with no future worth hoping for.

“We could lose a life, but if he continues to live this way, we’ll lose three,” said Adriana. “There’s no quality of life for him or for us.”

Aaron’s doctors now say he could conceivably live for years. His body hasn’t stopped growing since he was born. He’s in the 96th percentile for height for his age, and his weight is about average.

His parents have talked about “graduating” him from hospice. But he is never stable for long, and they welcome the visits from their hospice team. The seizures, sometimes 30 a day, are a persistent assault on his brain and, as he grows, the medications intended to control them must be changed or the doses recalibrated. He is at continual risk of gastrointestinal problems and potentially deadly fluid buildup in his lungs.

Adriana, who works from home for a nonprofit public health organization, spends much of her time with Aaron, while Hector works as a landscaper. She has chosen to live in the moment, she said, because otherwise her mind wanders to a future in which either “he could die — or he won’t, and I’ll end up changing the diapers of a 40-year-old man.” Either of those, she said, “are going to suck.”

While cancer is one of the major illnesses afflicting children in hospice, many others, like Aaron, have rare congenital defects, severe neurological impairments, or uncommon metabolic deficiencies. 

“We have diseases that families tell us are one of 10 cases in the world,” said Dr. Glen Komatsu, medical director of Torrance-based TrinityKids Care, which provides home hospice services to Aaron and more than 70 other kids in Los Angeles and Orange counties.

A photo shows Aaron Martinez sleeping in a crib.
Aaron Martinez sleeps in the bedroom he shares with his mother and father in Pomona, California.

In the years leading up to the ACA’s implementation, pediatric health advocates lobbied hard for the concurrent care provision. Without the possibility of life-extending care or hope for a cure, many parents refused to put their terminally ill kids in hospice, thinking it was tantamount to giving up on them. That meant the whole family missed out on the support hospice can provide, not just pain relief and comfort for the dying child, but emotional and spiritual care for parents and siblings under extreme duress.

TrinityKids Care, run by the large national Catholic health system Providence, doesn’t just send nurses, social workers, and chaplains into homes. For patients able to participate, and their siblings, it also offers art and science projects, exercise classes, movies, and music. During the pandemic, these activities have been conducted via Zoom, and volunteers deliver needed supplies to the children’s homes.

The ability to get treatments that prolong their lives is a major reason children in concurrent care are more likely than adults to outlive the six-months-to-live diagnosis required for hospice.

“Concurrent care, by its very intention, very clearly is going to extend their lives, and by extending their lives they’re no longer going to be hospice-eligible if you use the six-month life expectancy criteria,” said Dr. David Steinhorn, a pediatric intensive care physician in Virginia, who has helped develop numerous children’s hospice programs across the U.S.

Another factor is that kids, even sick ones, are simply more robust than many older people.

“Sick kids are often otherwise healthy, except for one organ,” said Dr. Debra Lotstein, chief of the division of comfort and palliative care at Children’s Hospital Los Angeles. “They may have cancer in their body, but their hearts are good and their lungs are good, compared to a 90-year-old who at baseline is just not as resilient.”

All of Aaron Martinez’s vital organs, except for his brain, seem to be working. “There have been times when we’ve brought him in, and the nurse looks at the chart and looks at him, and she can’t believe it’s that child,” said his father, Hector.

A photo shows a nurse giving 17-month-old Aaron Martinez medicine via an oral syringe.
Hospice nurse Shannon Stiles gently administers Aaron Martinez an oral medication. Many hospice organizations are reluctant to take children, whose medical and emotional needs are often intense and complex.

When kids live past the six-month life expectancy, they must be recertified to stay in hospice. In many cases, Steinhorn said, he is willing to recertify his pediatric patients indefinitely.

Even with doctors advocating for them, it’s not always easy for children to get into hospice care. Most hospices care primarily for adults and are reluctant to take kids.

“The hospice will say, ‘We don’t have the capacity to treat children. Our nurses aren’t trained. It’s different. We just can’t do it,’” said Lori Butterworth, co-founder of the Children’s Hospice and Palliative Care Coalition of California in Watsonville. “The other reason is not wanting to, because it’s existentially devastating and sad and hard.”

Finances also play a role. Home hospice care is paid at a per diem rate set by Medicare — slightly over $200 a day for the first two months, about $161 a day after that — and it is typically the same for kids and adults. Children, particularly those with rare conditions, often require more intensive and innovative care, so the per diem doesn’t stretch as far.

The concurrent care provision has made taking pediatric patients more viable for hospice organizations, Steinhorn and others said. Under the ACA, many of the expenses for certain medications and medical services can be shifted to the patient’s primary insurance, leaving hospices responsible for pain relief and comfort care.

Even so, the relatively small number of kids who die each year from protracted ailments hardly makes pediatric hospice an appealing line of business in an industry craving growth, especially one in which private equity investors are active and seeking a big payday.

In California, only 21 of 1,336 hospices reported having a specialized pediatric hospice program, and 59 said they served at least one patient under age 21, according to an analysis of 2020 state data by Cordt Kassner, CEO of Hospice Analytics in Colorado Springs, Colorado.

Hospice providers that do cater to children often face a more basic challenge: Even with the possibility of concurrent care, many parents still equate hospice with acceptance of death. That was the case initially for Matt and Reese Sonnen, Los Angeles residents whose daughter, Layla, was born with a seizure disorder that had no name: Her brain had simply failed to develop in the womb, and an MRI showed “fluid taking up space where the brain wasn’t,” her mother said.

When Layla’s team first mentioned hospice, “I was in the car on my phone, and I almost crashed the car,” Reese recalled. “The first thought that came to mind was, ‘It is just the end,’ but we felt she was nowhere near it, because she was strong, she was mighty. She was my little girl. She was going to get through this.”

About three months later, as Layla’s nervous system deteriorated, causing her to writhe in pain, her parents agreed to enroll her in hospice with TrinityKids Care. She died weeks later, not long after her 2nd birthday. She was in her mother’s arms, with Matt close by.

“All of a sudden, Layla breathed out a big rush of air. The nurse looked at me and said, ‘That was her last breath.’ I was literally breathing in her last breath,” Reese recounted. “I never wanted to breathe again, because now I felt I had her in my lungs. Don’t make me laugh, don’t make me exhale.”

Layla’s parents have no regrets about their decision to put her in hospice. “It was the absolute right decision, and in hindsight we should have done it sooner,” Matt said. “She was suffering, and we had blinders on.”

A photo shows Adriana Pinedo sitting at home and feeding her son, Aaron, with a bottle.
Adriana Pinedo spends much of her day alone with her son. She has chosen to live in the moment, she says, because otherwise her mind wanders to a future in which either “he could die — or he won’t, and I’ll end up changing the diapers of a 40-year-old man.”

Adriana Pinedo said she is “infinitely grateful” for hospice, despite the heartache of Aaron’s condition. Sometimes the social worker will stop by, she said, just to say hello and drop off a latte, a small gesture that can feel very uplifting. “They’ve been our lifeline,” she said.

Adriana talks about a friend of hers with a healthy baby, also named Aaron, who is pregnant with her second child. “All the stuff that was on our list, they’re living. And I love them dearly,” Adriana said. “But it’s almost hard to look, because it’s like looking at the stuff that you didn’t get. It’s like Christmas Day, staring through the window at the neighbor’s house, and you’re sitting there in the cold.”

Yet she seems palpably torn between that bleak remorse and the unconditional love parents feel toward their children. At one point, Adriana interrupted herself midsentence and turned to her son, who was in Hector’s arms: “Yes, Papi, you are so stinking cute, and you are still my dream come true.”

Complete Article HERE!