Human Composting for a Greener Afterlife

By Gemma Alexander

No matter how sustainably you lived, modern funeral practices ensure that you make one last giant carbon footprint when you die. The biodegradable pine box of past generations is no longer an option. In most places, regulations require the use of toxic, persistent chemicals for embalming and burial; cremation produces as much CO2 as a flight from London to Rome. Until recently, natural burial choices were mostly limited to environmentally friendly uses for cremated ashes. Now there is a new option for a greener afterlife – natural organic reduction (NOR) – better known as composting.


If the idea of human composting brings to mind images of bug-filled waste piles behind a barn, or worse, scenes from a crime thriller, rest easy that natural organic reduction is a clean process. It is equally respectful of the deceased and the planet that sustained them in life. The chemistry of NOR is the same as all composting, and the proof of concept is agricultural (farms dispose of the bodies of large livestock through composting).

But NOR facilities compost human remains individually in hyperbaric oxygen chambers. These honeycomb-like cells (called “cradles”) control the temperature and oxygen level inside, slowly rotating a clean, efficient mixture of organic materials (including straw and wood chips) tested by the University of Washington. When composting is complete, the compost is screened to remove any nonorganic materials like dental fillings and pacemakers. The final result is indistinguishable from garden topsoil. Families can choose to collect the soil for their own use, but most choose to donate it. From funeral to garden, the entire process takes about six weeks.

Health and Safety

NOR composting takes place inside a controlled environment. So many of the problems that can be associated with composting – like odors or incomplete decomposition – are avoided. Under the authority of the Puget Sound Clean Air Agency, Recompose’s permit requires air filters and no visible emissions or detectable odors from the facility. Independent review by a third party is required every three months.

Washington state requires the resulting soil to receive third-party testing for pathogens like fecal coliform and salmonella. It must be tested for heavy metals like arsenic, lead, and mercury as well. The state also prohibits people with tuberculosis or prion infections from undergoing NOR.

The History

Katrina Spade was a graduate student in architecture 10 years ago when she began researching funerary options and found no practical, ecological alternatives. She wrote her master’s thesis on composting as an urban form of natural burial. But she didn’t give up on the idea after graduation. Instead, she worked with Western Carolina University and the University of Washington to produce feasibility studies. Then she helped push to change laws in Washington state to permit NOR. ESSB 5001 took effect on May 1, 2020, in Washington state, making it the first state in the U.S. to allow composting of human remains. Finally, in December of 2020, the first bodies were “laid in” at Recompose, Spade’s composting facility located in the suburbs of Seattle.

The Options

Recompose in Washington state, with 10 composting vessels, remains the largest active operation. They are currently only accepting prepaid clients through their “Precompose” plan. Herland Forest, a nonprofit natural burial cemetery in the Cascade mountains, has extremely limited capacity, with only a single composting cradle in operation. A third facility, Return Home, plans to begin operation in the Seattle area in April 2021. All three companies can accept bodies from out-of-state. But the carbon impact of transportation may significantly reduce the environmental benefit of composting relative to cremation.

Even with only three options available in the U.S., NOR pricing varies a lot. Ranging from $3,000 to $5,500, the three companies each offer somewhat different services. Herland, with its solar-powered cradle, may be the most ecological. They also have the lowest prices, but they cannot provide funeral services. Recompose has the highest price, but provides an all-inclusive service. As with cremated ashes, families can choose to collect the resulting soil. For those who do not, Herland can use the soil to plant a tree in their permaculture forest; Return Home offers to donate soil to “regional park departments, land trusts and the like for ecosystem restoration,” and Recompose donates soil to the ecological restoration project at Bells Mountain near Vancouver, Washington.

This variability is typical of the funeral industry. In King County, where both Recompose and Return Home are located, a 2020 price survey found cremation prices ranged from $525 to $4,165 while burial prices ranged from $1,390 to $11,100.

In February of this year, California introduced legislation to legalize NOR. As they decide whether to pass it, California, and the rest of the country, will be watching Washington’s NOR facilities closely. With their success, NOR could be normalized as a standard death care option for environmentally minded families within a few years.

Complete Article HERE!

Behind Closed Doors

— ‘the Difficulty and the Beauty’ of Pandemic Hospice Work

Javier Urrutia, a home hospice music therapist, celebrating Josniel Castillo’s 11th birthday in Queens.

“I did not really understand when people would ask, ‘Why me and why my family?’” a hospice chaplain said. “Now I was asking the same questions.”

By James Estrin

This year was different.

The coronavirus pandemic dramatically changed Ms. Saoui’s work as a home hospice nurse in New York. Safety precautions created a physical distance between her and her patients and even cut some of her hospice colleagues off from their clients’ homes altogether last year. It deprived families and caretakers of ways to grieve together, and confronted hospice workers, however familiar with death, with a staggering scale of loss.

Through all the pressures, Ms. Saoui and other workers continued to provide solace and even moments of happiness to dying patients and their families.

“You sit down and you listen,” she said. “They express their fear, they express their emotions, and you guide them and tell them what to expect.” After a patient dies, she added, “I often want to hug the family members, but I cannot do that now.”

Instead, Ms. Saoui said, “I pray and do the best I can.”

More than half a million Americans have died from the coronavirus, and many have died in pain, isolated from their families. Ms. Saoui contrasted those conditions with what she called a good death: “peaceful, pain-free, at home and surrounded by their loved ones.”

While nurses have continued in-person home visits, some chaplain, social work and therapy sessions moved online because families preferred it. By August, most of that care switched back to in-person visits but with strict precautions, including wearing full P.P.E. at times and keeping six feet apart whenever possible.

Ms. Saoui examining Pedro Torres, while his wife, Gloria, and his son, Darron, look on.
Ms. Saoui examining Pedro Torres, while his wife, Gloria, and his son, Darron, look on.

Though a vast majority of Ms. Saoui’s patients in the last year did not have the coronavirus when they entered hospice, challenging restrictions have been placed on all patients and caregivers. Home hospice care can last for many months, and workers often develop close relationships with patients and their families.

But the pandemic has meant fewer occasions for families — and hospice workers — to mourn together in person at funerals or memorial services. For over a year, the size of those gatherings has been strictly limited by many states to try to stem the spread of the virus.

Nurse Hanane Saoui visits Diane Wilcox at her home in Queens.
Nurse Hanane Saoui visits Diane Wilcox at her home in Queens.Credit…

When hospice patients die, their caretakers often work through their own grief and loss in weekly staff meetings and gatherings with colleagues who shared the same client. These staff meetings are now online, but the loss of being able to hold each other and shed tears together has deeply affected hospice workers, said Melissa Baguzis, a social worker who specializes in pediatric cases. She has developed her own ways to handle the loss of her young patients.

“I take a moment, light a candle and read their favorite book or listen to their favorite song,” she said. “I have my own time for them. We do become connected with their families, but when I’m in their houses, that is their grief and I’m going to support them. I need to process my own loss outside of that.”

A nurse, Ozail Bennett, dressing in protective equipment before going to see a home hospice patient that has the coronavirus. Mr. Bennett also contracted the virus last April.
A nurse, Ozail Bennett, dressing in protective equipment before going to see a home hospice patient that has the coronavirus. Mr. Bennett also contracted the virus last April.

The hospice workers in the MJHS Health System, a nonprofit that covers New York and Nassau County, are comfortable around death in a way that many Americans are not. But the pandemic has put an extra weight on them and their patients, Ms. Baguzis said. “We all share in each other’s grief now more than ever,” she said.

The Rev. Christopher Sigamoney, an Episcopal priest who is a hospice chaplain, said he has tried to be there for his patients “even with their frustration, anger, hopelessness, depression and anxiety.”

Father Christopher Sigamoney talks with Joseph Lai.
Father Christopher Sigamoney talks with Joseph Lai.

He often told patients’ family members that it was “OK to be angry at God” over the loss of their loved one. But he said that the death of a beloved cousin from the coronavirus had changed his understanding of his work.

Father Sigamoney and his family were unable to be with his cousin, a retired doctor visiting from India, during the three days while she was on a ventilator in the hospital at the end of her life. He and a handful of relatives said “a few prayers” in the funeral home, he said, but they were unable to have a “proper burial” or ship the body home to India because of virus restrictions.

Father Christopher Sigamoney prays with patient Diane Wilcox at her home in Queens.
Father Christopher Sigamoney prays with patient Diane Wilcox at her home in Queens.

“I did not really understand when people would ask, ‘Why me and why my family?’” he said of the time before his cousin’s death. “Now I was asking the same questions. I said to God, ‘Now I’m angry at you, and I hope you can forgive me.’” Father Sigamoney said he was slowly recovering through prayer and helping his patients.

Last month, Josniel Castillo was hooked up to a battery of medical machines and monitors, surrounded by his parents and a multitude of stuffed animals, as Javier Urrutia, a music therapist, and Ms. Baguzis entered his cramped bedroom. Despite his declining medical condition because of a rare genetic disease, this was a happy day. It was Josniel’s 11th birthday.

Mr. Urrutia launched into “Las Mañanitas,” a traditional Mexican birthday song. Josniel’s mother and father, Yasiri Caraballo and Portirio Castillo, joined in. Ms. Caraballo wiped away tears. They were, she said, “tears of joy” because she had not expected her son would live to be 11.

She requested another tune, and played tambourine as Mr. Urrutia launched into “Que Bonita Es Esta Vida.” They sang the final chorus together, part of which can translate to:

Oh, this life is so beautiful

Though it hurts so much sometimes

And in spite of its sorrows

There’s always someone who loves us, someone who takes care of us.

Afterward, Mr. Urrutia said most people are “unaware of what’s happening behind closed doors, both the difficulty and the beauty.”

Melissa Baguzis, a MJHS hospice social worker, visiting Josniel Castillo on his 11th birthday.
Melissa Baguzis, a MJHS hospice social worker, visiting Josniel Castillo on his 11th birthday.

This year in countless homes, there has been “a lot of pain and suffering, it cannot be denied,” he said. But in hospice work, he said, “you also see all of the heroes out there doing the simple things of life, caring for each other. The husband taking care of his wife or the mother taking care of her son.”

“Dying is a part of life,” he added. “Only living things die.”

Complete Article HERE!

Does Marijuana Have A Place In Hospice?

Marijuana is used in hospice care to ease spiritual and existential suffering, with some studies showing an important therapeutic role for patients faced with the despair of a terminal illness.

BY Kate-Madonna Hindes

As Americans continue to age, hospices are exploring new ways to bring peace and calm to the often slow and painful process of end-of-life care. According to the CDC, in 2015, an estimated 1.4 million individuals on Medicare were patients in a hospice setting.

Quadrupling in size in the last 20 years, hospices are investing in creating a patient-centric approach that dismantles beliefs that hospices are cold, and unfeeling institutions. From massage to aromatherapy, some hospices are offering new additions to their programs including music and integrating family into meaningful experiences. While many hospices are focused on offering a thoughtful quality of care, many end-of-life-care specialists are also advocating for marijuana.

A MorseLife Hospice and Palliative Care study focused on advances in hospice care found changing attitudes on medical marijuana. They cited that, “87% of Americans support the use of medical marijuana as a treatment option for terminally ill patients, with nearly three in five Americans (58%) expressing strong support.”

The American Academy of Hospice and Palliative Medicine recently shared a video on how hospices can integrate medical marijuana into care, heralding more change in the market to accepting marijuana as a part of a patient’s care plan.

Pathways Home Health advocates for marijuana in hospice care, stating:

“Marijuana is used in the hospice care setting to ease spiritual and existential suffering, with some studies showing an important therapeutic role for patients faced with the despair of a terminal illness, as well as the loss of function that accompanies it. A mild euphoria or sense of well-being can ease a patient’s mind, body and spirit as they come to terms with their fate.”

Not Telling Your Doctor About Marijuana Use Can Hurt You

Stuck in political limbo

While some hospice programs are embracing medical cannabis, some are facing uncertainty about whether or not to allow medical marijuana, even when it’s legal inside their particular state. With an ever-expanding list of states that allow marijuana both medically and recreationally, hospices are taking an evidence-based, risk-management-forward approach to ensure they comply legally and ethically.

Changing attitudes are allowing for researchers to gain more insight and information regarding the role cannabis and CBD can both play in hospice and palliative care settings. Published in the Journal of Palliative Medicine, an October 2019 study focused on the responses of over 300 palliative care professionals from over 40 states on the use of medical cannabis. The study found “overwhelming support” for the use of medical cannabis in a hospice setting:

Regardless of legal status, hospice staff members were overwhelmingly in agreement that MC (medical cannabis) is appropriate for hospice patients to have access to and use.

Citing barriers such as legal status, clinical safety, and societal influence, the study believes opportunities exist to better support hospice providers and patients with education, research and policies that elevate the use of medical cannabis.

With new patients entering hospice every day and both clinicians and doctors looking to supplement old pain medicines with newer more effective treatments, marijuana will remain a top topic for years to come.

Complete Article HERE!

Every time one of my patients dies I buy a plant in their memory

Every time a patient passed away, I’d go to the garden centre and search either for a plant with their name or for a plant I thought represented them

By Katie Hodgkinson

When I started work as a doctor two years ago, I was living alone with one sad succulent and a pot of thorn-filled roses my boyfriend had given me.

I’d always liked plants, but I’d never been able to keep anything alive longer than a few weeks – in fact, my dad had been watering our fake one for years!

On my first rotation, I started on a combined cardiology and stroke ward, which, as you can imagine, sees quite a few patients with life-changing conditions. I’d made friends with one of the hospital palliative care sisters and she often came to help us with patients who were experiencing breathlessness, pain and agitation.

The first woman I met in a hospice, when told she’d have weeks to live, was insistent that the only thing she wanted to achieve in her remaining time was to ‘see the flowers bloom in spring’.

The staff bought her bulbs, and I’m told she lived long enough to see the first ones flower. It really struck me that after a lifetime in this world, the thing that mattered most to her was seeing the colours and life that comes with a new season – I’d never really thought of plants in that way before.

In my first few weeks, I started to develop relationships with some of our longer-term patients. There was one woman who I took blood from every morning and for whom I requested countless tests, scans and meetings.

Her family weren’t local, and we’d often share a giggle over the comings and goings of other women in her bay; I ended up being her most regular visitor.

One weekend I checked her blood results to see what we’d really been hoping not to see – she’d grown a nasty bacteria in her blood, and would need at least a further five weeks of antibiotics.

Sadly, we never managed to get on top of the infection. We gave her stronger drugs, blood transfusions and called her family in to be with her. She passed away peacefully, and that evening I went with the palliative care sister to a garden centre.

It was meant to just be an escape from long days on the ward and my first close patient death, but the centre had named all their plants – and when I saw one with her name on, it felt like some sort of sign. It was a bright and bold Calathea, with vibrant pink stripes that cheered me up instantly. I took it home with me.

Naturally in a busy city hospital, more of my patients died despite our best efforts. We brought in families, arranged a wedding for a terminally ill patient, and I even smuggled in someone’s new puppy inside my jacket (infection control approved, of course.)

I was 24 and seeing more death than most people see in a lifetime – but although it was horrible, it was also an honour to be a part of a team that could help these people have a good death.

No one wants to think of their life coming to an end, everyone wants to be comfortable and surrounded by the people they love, and it was so rewarding to be able to offer that.

Every time a patient passed away, I’d go to the garden centre and search either for a plant with their name or for a plant I thought represented them. I wanted to remember them.

I became better at looking after the plants in my flat. I developed a watering schedule, bought plant food, repotted them into pretty jars I’d found in shops, took them for showers if I thought they were dry – anything I could do to emulate the kind of care I was trying to give to my patients.

Most doctors have something they do to remember the people they’ve cared for – whether it’s lighting a candle, a quiet moment at the end of the day or debriefing with friends. I’ve heard of people planting trees – but I think individual plants might be one of the more unusual coping mechanisms!

When the pandemic hit, I was working in elective orthopaedics and my ward was the first to start accepting Covid-19 patients. Despite all the research, the treatment plans were often simple – oxygen, more oxygen, steroids and if needed, machines to take over breathing when patients became too tired.

We sent patients to ITU, and those who deteriorated we made comfortable. We took over the role of the families who weren’t allowed in, lest they put people in danger.

We held hands with patients while they passed away and we held up screens so their families could be there until the end. It was devastating knowing that pre-pandemic, we’d have had crowded side rooms filled with loved ones, and yet because of the risks they had me in full PPE, unable to even hold a hand without horrible sweaty gloves.

When I started my Covid-19 work I had about 15 plants and a watering can made out of an old sauce jar. Then garden centres closed in the first wave, but I ordered more plants online.

After eight months, I started to run out of room in my flat, and my friends suggested buying one plant per week rather than per patient. It didn’t feel right – not the level of acknowledgement I wanted for these people who had lived such full lives.

I started planting seeds, lighting, candles – anything I could to still feel like I was acknowledging the loss of so many people. I asked for help on Twitter, and people suggested planting trees, donating plants, getting an allotment – but none have felt quite right just yet. 

Thankfully I live alone, so the ever-expanding wave of greenery wasn’t too annoying – but I have started letting my fiance choose where we put some of them! It’s lovely to be surrounded by so much new life and I get so excited whenever I see a leaf start to unfurl – I am reminded every time to appreciate it by the woman who wanted to see the flowers bloom in spring. I like to think she’d be just as thrilled.

Now I work in a different hospital, and thankfully fewer people are dying. I’ve been able to propagate my existing plants to grow smaller baby plants for my friends.

I still have a plant for every patient who passed away while I was their doctor; it looks like I live in a jungle, with more than 60 plants, but I’m starting to prune and take cuttings so that other people can share the joy.

For some of my paediatric patients, I’ve decorated pots with stickers of their favourite things – Peppa Pig, octopi, even one covered in fingerpaint.

The time I spend looking after my plants has become the time when I can reflect on everything that’s happened and all the people I’ve cared for.

Sometimes it’s a sad experience, and sometimes it’s a more joyful process where I can think of those that got to go home.

I think of all the things I have yet to learn, how far I’ve come, and how many more patients I will get to meet. I think I’ll always dedicate a plant to a lost patient; I just might need to move to somewhere with a garden.

Complete Article HERE!

Plague & Prayer

— In the Midst of Pandemic Life, Religion is a Mixed Blessing


The coronavirus pandemic has now ravaged the globe for more than a year. It has brought with it myriad difficulties; despite the fact that many have been spared from the virus itself, no one has been immune to its economic and social consequences. This dimension of the pandemic’s impact has unmistakably revealed the disproportionate distribution of privilege and hardship in societies around the world, drawing much-needed attention to the ways in which COVID-19 has been experienced very differently by racialized and ethnic minorities, the socioeconomically disadvantaged, and women.

But despite the factual relevance of race, gender, and socioeconomic status, these not the only factors with the potential to complicate pandemic life for people. In the Western world, where religion no longer plays a central role in public life, not much attention is paid to the experience of religious communities. Yet, faith has proven to have a powerful role in shaping pandemic life for believers worldwide, and while it has been a comfort to many, it is arguably a mixed blessing.  

Risks and rewards 

Given the communal aspect of most faiths, many believers have found themselves facing a difficult choice between honouring their sense of religious duty and following public health guidelines to protect their health and safety. Obviously, the degree to which this has become a reality for religious believers varies based on different religious customs regarding congregation, but, having to choose between one’s faith and, potentially, one’s life is no easy decision.

In some cases, religious communities have found ways to adapt to restrictions by holding faith services online. Religious researchers have noted that roughly two-thirds of practicing Christians in the United States are attending virtual church services during the pandemic. However, they also recorded a decline in religious participation among the same group: approximately one in three practicing Christians have stopped attending church during COVID-19. Some of those who continue to worship practices struggle with the inadequacy of online services, but nonetheless express a drive to “keep going.”

However, practitioners of certain other faiths — particularly Islam and Judaism — have, in many cases, struggled with an incompatibility between their religious practices and social distancing requirements. Measures implemented in response to the coronavirus have deeply disrupted Muslim rituals surrounding death and burial rites. Likewise, social distancing regulations conflict with many practices central to (ultra-)Orthodox Jewish life. In Orthodox communities in New York and Israel, devout Jews have defied gathering restrictions in order to attend the enormous wedding and funeral ceremonies that represent a foundational part of their culture and heritage. Attendance at such gatherings is, for many, both “a religious and personal duty.” 

Orthodox Jewish communities have been hit particularly hard by COVID-19, and many have struggled to reconcile the congregation-centred aspects of their faith and culture with public health guidelines. “Man walking beside red wall photo

A UK study showed that coronavirus death rates were highest among Muslims, followed by those who identified as Jewish, Hindu, or Sikh. Christians had a significantly lower risk, while non-religious individuals had the lowest death rate of all surveyed groups. The researchers noted that these risk disparities could be largely attributed to differences in geographical location, socioeconomic status, and demographic and ethnic factors already linked to higher risk of COVID-19 mortality, and that these considerations could not provide a complete explanatory picture. It seems possible that differences in faith practices could perhaps play at least a minor role. Religious communities whose traditions tend to require mass gatherings could conceivably be more vulnerable to contagion and death.

Furthermore, there’s yet another risk — that of prejudice and division. The perception among the rest of society that members of religious communities are selfishly endangering others by defying restrictions in order to perform rites and duties of faith can breed resentment and deepen social divides. In New York, the government’s handling of the pandemic has largely failed to show sensitivity to the particular needs of the insular Orthodox Jewish communities there, deepening their distrust in civic administration. Efforts by these groups to uphold religious obligations and community life in spite of the pandemic has led to clashes with local government and resentment from fellow citizens. Meanwhile, in India, an outbreak of the virus at an Islamic religious conference in 2020 was followed by an outbreak of Islamophobia. Muslims became the increasingly ostracized targets of fake news claiming they were actively attempting to spread COVID-19. 

Yet, although religion has demonstrated the potential to complicate the pandemic life of its adherents in these various ways, it also brings courage and comfort to many in facing the hardships that the coronavirus has brought. For example, many religious Buddhist communities in Southeast Asia are turning to rituals, magical rites, prayer, and talismans to protect themselves against the virus. Turning to faith-based methods in combination with public health guidelines has provided comfort and relief from anxiety in the midst of the pandemic: for millions, faith can assuage fear and inspire hope and courage. There is also increasing research that supports the idea that faith can have powerful, positive effects on health, especially mental health.

Furthermore, while some like Esau McCaulley lament the loss of community and the irreplaceable experience of in-person worship, others voice enthusiasm for virtual services. A Lutheran pastor replied to McCaulley in The New York Times by pointing out that online worship can indeed provide a sense of unity and community, with the power to alleviate the isolation and loneliness most of the world currently finds itself in. Another reader celebrated the increased attendance her synagogue experienced after switching to online services. For some, the effort to find their version of divinity even in the absence of a tangible community may strengthen and deepen their sense of devotion both to their faith and to their fellow believers.

The responsibility of faith leaders

Given the ways in which religion can have an enormous impact on pandemic life, it’s clear that faith leaders have a lot of power and responsibility in terms of the guidance they offer to their followers during this troubled time.

Where religious leaders misuse their power, society at large suffers as a result. For instance, some evangelical ministers in the United States have established a reputation for denying or downplaying crucial information about the virus, encouraging their followers to put their faith in God rather than in scientific and medical experts, and refusing to suspend in-person services while denigrating those who have done so in compliance with social distancing guidelines. In-person religious gatherings can turn into super-spreader events, infecting not just religious believers, but also other members of society they may come into contact with afterwards.

The Dalai Lama is among the religious leaders who have shared messages of hope, compassion, and unity during the pandemic. “The Dalai Lama speaks at the NIH

However, other faith leaders around the world– including the Dalai Lama and Pope Francis— have demonstrated an understanding of the responsibility that rests on their shoulders, and have shared uplifting messages of courage, hope, and compassion with their followers while also praising medical workers and encouraging their communities to be patient, heed guidelines, get vaccinated, and listen to science. An interfaith conference of religious leaders in Indonesia demonstrated a heartening logic of cooperation in the face of challenges and awareness of faith’s powerful impact on society’s experience of pandemic life. While almost everyone has recognized the vital role played by political, scientific, and medical authorities as the world struggles to tackle the virus, perhaps we should also acknowledge that similarly, religious authorities have a significant impact. The messages they send to their followers play a role in determining whether and how the faithful will adapt their worship to comply with public health guidelines. Thus, while faith has a hand in how believers suffer and overcome the hardships of navigating an isolated world, it also affects public health, as the choices religious congregations make have far-reaching effects beyond their own communities. In one way or another, faith has the potential to affect believers and non-believers alike at this fraught moment in human history.

Complete Article HERE!

The Costly, Painful, Lonely Burden of Care

Health care in the U.S. relies on an “invisible army” of caregivers — mostly women. For many, stunted careers, lost earnings and exhaustion are part of the fallout.

By Mara Altman

— Kate Washington, the author of “Already Toast: Caregiving and Burnout in America”

In 2015, Kate Washington’s world changed. Her husband, Brad Buchanan, was late for family dinner. She found him in the bathroom, coughing up blood — a lot of it. She handed him a bucket and asked the neighbor to watch their two young daughters while she drove him to the emergency room.

Doctors found that a tumor had ruptured in one of his lungs and he urgently needed chemo. As her husband became critically ill, Ms. Washington, a freelance writer, was thrust into the role of nurse.

After Mr. Buchanan’s first round of chemo, the tumor shrank too quickly, causing his lung to collapse and then fill with thick, toxic fluid that put him at high risk for infection. Before he could continue treatment for cancer, he was sent home to recuperate.

Ms. Washington found herself performing high-level nursing tasks, like administering antibiotics three times a day through a PICC line — a thin tube that leads from veins in the arm to the veins near the heart. “My hands were shaking,” she said as she remembered apprehensively pushing in the drugs for the first time and feeling the weight of keeping her husband alive.

But that weight would only become heavier when Mr. Buchanan had a stem cell transplant that left him with graft-versus-host disease, a condition that occurs when donated cells attack the body.

After spending four months in the hospital, becoming temporarily blind and unable to walk, eat, dress or use the toilet on his own, he was given his discharge papers. A doctor told Ms. Washington that her husband would need 24-hour care and “could not be left alone for even a moment.” When she explained that she had two children who also had needs, he said, “Well, usually family steps in, and it works out fine.”

Ms. Washington felt the burden of responsibility, but also the sting: The U.S. health care system relies on and takes for granted the “invisible army” of people — mostly women — who keep the system functioning by performing home care for the many people who are “too well for the hospital” but “too sick for home,” as well as for those on end-of-life care.

In 2017, AARP found that about 41 million family caregivers in America perform roughly $470 billion worth of unpaid labor a year. Since then, the number of caregivers has increased to 53 million, meaning that more than one out of five Americans are caregivers, according to AARP’s latest report.

Depending on the analysis, between 61 and 75 percent of caregivers are women, and they tend to do more personal care tasks like helping patients bathe and use the toilet than their male counterparts, who are more likely to oversee finances and arrangement of care.

Female caregivers put in more hours — 22 to men’s 17 — and they are also more likely to stand by their partner through a serious illness. According to a study in the journal Cancer, women living with brain tumors or multiple sclerosis were seven times as likely to be abandoned by their spouses as men with similar diseases.

Many people who take on caregiving roles experience negative health impacts, but women are especially at risk of the fallout from caregiver stress. Female caregivers are also 2.5 times more likely to live in poverty as non-caregivers, with many leaving the work force to do care work. A 2011 study found that women who left their jobs to care for a parent lost an average of $324,000 in wages and benefits over their lifetimes.

Ms. Washington was able to dip into savings and a recent inheritance to help pay for supplemental in-home care, but it was still a struggle, causing stress, resentment and lost income.

Her book, “Already Toast: Caregiving and Burnout in America,” published by Beacon Press and on shelves this week, details the day-to-day challenges of caring for a partner with severe illness, but it also examines how the health care system must change to better support caregivers. “If society wants us to keep caring for others,” she writes, “it’s going to have to show a little more care for us.”

In Her Words spoke with Ms. Washington over phone and email. The conversation has been edited for length and clarity.

If we go with the metaphor that cancer is a battle, then you call yourself “collateral damage.” Explain.

I was compelled to enter this new life where the center of it was caring for someone else, and even though I love that person very much, it was a hard loss. It was hard to have my life put on hold. Everything kind of slipped away.

As you became “collateral damage,” what was lost?

I lost a sense of who I was. I was going to pick up a prescription for myself, the only prescription I had when my husband was sick, and the pharmacist asked for my date of birth, and I gave his date of birth. I was so used to picking up things for him, I spaced on the fact that I also had needs. For a few years, I essentially stopped having a professional life. There was this feeling of erasure — that my needs and desires were no longer important.

What was the fallout of not feeling seen for so long?

I got angry. That sense of being unseen became literal because Brad had lost his vision, which is not to blame him for that at all, but it made a metaphor an actual, concrete thing. The things I was doing for him were being taken for granted or were invisible to him. That started to create resentment. I wanted to be acknowledged for how much I was giving up of the life I normally would have been leading.

What could have helped you feel acknowledged?

A culture shift to valuing care isn’t really a quick fix exactly, but that would be nice. From the medical establishment? Not taking at-home care for granted.

There is also a longstanding gender stereotype that women are the caring sex. There’s a lot of pressure on women to conform to and stick with these roles and to not raise their voices about all the difficulties they face. Just because women are expected to do the caring, doesn’t mean it comes easier to them.

You express in your book that a disservice to caregivers is equally a disservice to those receiving the care. Can you explain this idea?

If there is too much responsibility on caregivers, the patient can suffer. Burnout can undermine the sense of empathy, the sense of love and the sense of providing good care.

This can impact practical outcomes, like how quickly the person can recover, but it can also be damaging for the relationship between caregiver and the recipient of care, which is less quantifiable, but also hard to contend with.

There was a powerful quote in your book from Evelyn Nakano Glenn’s “Forced to Care.” She wrote that our society views family caregiving as both “priceless and worthless.”

There is a narrative that the caregiving work we do is invaluable and the gift of caring is its own reward, but the flip side of something being priceless is that you paradoxically strip it of all its value. It’s so valuable that we can’t put a monetary price on it, which then takes away the economic worth.

People talk about how it’s the most important job in the world, taking care of our children or taking care of our vulnerable elders, and yet those are some of the worst paid jobs. How much is a quarterback paid versus someone who is doing care for a vulnerable elderly person?

How did care work become so undervalued?

The historical roots are complex, but as Evelyn Glenn puts it in “Forced to Care,” Western culture has long framed care work done by women as a moral duty or obligation, rather than an economic activity.

Whereas in preindustrial times, women’s domestic work was understood to contribute to a household financially, the Victorian era saw a gendered split between the domestic sphere and the economically productive public sphere. Family caregiving fell into the realm of women’s work and — like child care and other domestic labor — became economically invisible and not counted in GDP. In turn, the association between care and women’s free or compelled labor has produced stigma and low wages for professional care work — a vicious circle of devaluing.

You write that taking on the role of unpaid caregiver, a role that often isn’t a choice, can have generational impacts. Explain.

If your earnings are lower than they would normally be because you’re busy caring for a family member, and you can’t save and pay into social security, it can lock whole families into a cycle of lower wealth and economic instability.

How can people best help their caregiver friends and neighbors?

There is a reason that taking people a meal is a classic, because it is super helpful. If you do that, always bring disposable containers so that the person does not have to return them. Offering to help with errands or with child care is great, and if the situation permits, offer to sit with and stay connected to the person who is ill. When Brad could be more in touch with his community, it eased some of the pressure on me.

And what should someone not do?

Don’t tell someone to stay positive. For me, there was no staying about it, because I didn’t feel positive to start with. It brought up this feeling: My time isn’t my own, but surely my emotions can be.

Complete Article HERE!

Death-oriented doc finds poetry amid pandemic

New Orleans’ famed jazz funerals a casualty of COVID-19

The documentary Death Is Our Business looks at how the pandemic altered jazz-funeral traditions in New Orleans.

By: David Zurawik

As we reached the one year mark this month of life under COVID-19, there has been no shortage of articles about how the virus has changed us. One of the most striking and still underappreciated ways it has done so is in our thinking as a society about death.

Prior to the pandemic, we were not a people who thought a lot about dying. I believe one of the primary reasons for that is that our popular culture, at least when it came to television, has generally avoided it.

One of the primary reasons for that: The commercial networks believed death was bad for business. I know that because multiple network executives have told me so over the years as if it were a truth handed down from a mountaintop on stone tablets, even though no one could supply research supporting that claim.

Death and destruction caused by COVID-19 have changed that situation dramatically, and I believe we are better for it. Existentialism says an awareness of death leads to a fuller and more authentic life. But you don’t have to be an existentialist to appreciate the way thinking about death can at least lead to a more thoughtful and focused life, driven by the awareness that our time on earth is limited.

I have written these past 12 months about several death-oriented, life-enriching shows, ranging from the Netflix series After Life, starring Ricky Gervais as a middle-aged journalist whose wife dies young, to Elizabeth Is Missing, a PBS movie starring Glenda Jackson as a woman with early-stage Alzheimer’s disease trying to solve the disappearance of her only friend. Both rattled around in my brain long after the final credits played. And now comes a Frontline documentary, Death Is Our Business (PBS, tonight, 9 p.m.), which has had the same kind of effect on my psyche. Images from it danced through my dreams earlier this week and I have been thinking continually about some of its themes.

The documentary by filmmaker Jacqueline Olive (Always in Season) looks at the way in which COVID-19 has changed centuries-old Black funeral practices and rituals in New Orleans. That includes horse-and-carriage processions, jazz musicians and the second line of dancers. The power of the film is found in both the poetry of its imagery and the deep, cultural context and analysis it offers of the African-influenced rituals that have branded New Orleans internationally and provided its Black citizens with a wealth of tradition on which to draw at times of sorrow and loss.

The film opens with a series of images carefully edited to the words sounded in voice-over by New Orleans psychiatrist Dr. Denese Shervington.

“New Orleans is this very complex combination of suffering and joy,” Dr. Shervington says.

On the word “suffering,” the screen fills with stark images of workers in masks handing out bags of clothing and food. On “joy,” images of young musicians dancing in sync on the street as they play their drums overtake the screen.

“Katrina forced us to think a lot about what it means to heal,” Dr. Shervington continues. “I think we’re having a similar experience with COVID and this pandemic. How do individuals come back from extreme loss, loss of family members, loss of what was normal? How do you find your way back?”

Dr. Shervington’s words immediately contextualize this community’s response to COVID-19 within the history of Hurricane Katrina, an event of disproportionate suffering by Black citizens in New Orleans. She also introduces the notions of resilience and healing in asking how to rebound from events like that.

In the film, jazz trombonist Delfeayo Marsalis, a member of the famed musical family of New Orleans, offers a concrete way one of the funeral rituals of the city helps survivors come back from the loss of a loved one.

“The idea of the jazz funeral is actually to help the family,” he says in the film. “And the journey from the church to the burying ground is a process where you can not only reflect and think, but you have people who are there to support you.”

Olive says the jazz funeral has served multiple functions in Black life.

“One, it’s a way of transitioning the soul of the dead,” she says in an interview. “So, you have this sombre moment and then that turns into almost a street-festival celebration. That’s a way of cutting the body loose so it can transition to the other side.”

It also helps those left behind “to be able to deal with their grief collectively,” she says.

“They have people whose shoulders they can literally lean on,” she explains. “You see in the footage, folks hugging each other and supporting each other physically. But it also means people are sharing food and sharing space and stories about their loved ones.”

Marsalis felt the loss of that ritual at a personal level when his father Ellis, the patriarch of the family and an internationally celebrated jazz figure, died at the age of 85 last year as the pandemic worsened.

“He was buried April 4th,” Marsalis says in the film. “We had about 10 people there,” he adds, because of limits on how many mourners were allowed at a funeral at that time to stop spread of the virus.

It’s a much different look than prior to the pandemic.

“There would have been a second line and a jazz procession,” says Jasminne Navarre, director of client services for the D.W. Rhodes Funeral Home.

Louis Charbonnet III, CEO of Charbonnet, Labat-Glampion Funeral Home has similar sentiments: “We’re a jazz-funeral town, and it’s hard to tell people you can’t have a jazz funeral. But we have to.”

Even though the pandemic denied the Marsalis family the kind of grand New Orleans send-off residents wanted to give the pianist, there is a poignant moment in the film where Olive brilliantly creates a cinematic memorial for him.

She starts with the image and sound of Delfeayo Marsalis and two other musicians standing in a cemetery amid tombstones playing a slow, particularly mournful version of A Closer Walk With Thee. The music plays underneath the reciting of an excerpt of a poem written by Reynold Verret, president of Xavier University of Louisiana, in the wake of Marsalis’s death.

“Last night, Ellis Marsalis went away,” Verret says. “No second line. No coming home of acolytes, the many musician daughters and sons. None may return to ring the bell, to celebrate, to mourn. In solitude, we remember.”

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Olive brings the music, images and words together in a perfectly distilled cinematic brew that makes your heart ache at the loss of this musical giant’s life. This moment alone would make the film worth going out of the way to see.

“There would have been literally at least 15,000 people lined up for the Ellis Marsalis funeral,” Olive says.

The film goes well beyond memorializing Marsalis or any one New Orleans figure, though.

“When I finished filming, I really came to understand that this film is a memorial to all those folks who died during the pandemic in which their lives weren’t acknowledged in the way they often deserved,” Olive says.

Death Is Our Business is a tribute, too, to the power of the rich Black funeral traditions of New Orleans and the funeral directors who, like jazz musicians, have been improvising the last year to keep bits of music, dance and celebration into their services, as difficult as that has been in the face of COVID-19.

Complete Article HERE!