Category: COVID-19

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How COVID-19 Is Changing End-of-Life Care

Some hospice agencies have been reluctant to go into homes lately

Entrepreneur Mika Newton with his wife Nuray, his daughter Ava and his mom, Raija

By Sherri Snelling

It was a decision Mika Newton had been dreading, but he knew he needed to stop seeing his mom.

For nearly three years, Newton, an entrepreneur in cancer care advocacy and patient support with his startup xCures, had been taking care of his 79-year-old mother, Raija, who lives near him in Oakland, Calif. When his father passed away, Newton took over caregiving duties for Raija, who suffers from mid-stage dementia and was recently diagnosed with terminal lymphoma. As the coronavirus pandemic exploded in March, Newton’s wife, Nuray, a nurse at Concord Medical Center at John Muir Health, was treating the sudden influx of COVID-19 patients. That meant a halt in Newton’s daily visits to his mom to protect her from any virus transmission.

“I wasn’t able to see her for eight weeks which was hard. But we spoke on the phone every day and I had peace of mind she wouldn’t die alone, because we have full-time home care and hospice for her,” said Newton.

Hospice in the Time of Coronavirus

According to a 2019 National Hospice and Palliative Care Organization report, nearly 1.5 million Medicare beneficiaries currently receive hospice care, defined as compassionate care that replaces treatment for patients who have a terminal condition with less than six months of life expectancy.

However, a National Association for Home Care & Hospice (NAHC) survey conducted in May 2020 found that 95% of hospice agencies have had existing patients refuse visits due to fears of contracting the virus  And while two-thirds of hospice agencies are taking COVID-positive patients, they have lost overall clientele, forcing them to reduce direct-care staff. Some staff concerned about their own health and their families’ health are reluctant or even refusing to help any COVID-confirmed patients.

“The agency said they couldn’t risk staff getting the virus and having to be quarantined and out of commission. That was a blow.”

Rebecca Bryan, a journalist for Agence France-Presse based in Los Angeles, realized that hospice care can be a blessing when her father spent eight months in hospice in 2004. But things were different when her 89-year-old mother, Margie, needed hospice before passing away during the pandemic.

“Hospice is a wonderful program, but I never realized how hands on my mom must have been for my dad since I was only home the last month of his life,” said Bryan.

When her mother was recently diagnosed with late stage leukemia and given three to six months to live, Bryan spent two months in Dallas caring for her.

“Mom made a decision not to proceed with blood transfusions, so we secured hospice care for her at home,” Bryan said. But while the small agency in Dallas helped deliver a hospital bed and did an initial inspection, it refused to send any staff to Bryan’s mom’s home when she showed an elevated temperature.

“She had just tested negative for COVID in the hospital and because of her cancer, she had not been outside. She was only at home alone but the agency said they couldn’t risk staff getting the virus and having to be quarantined and out of commission. That was a blow,.” said Bryan.

Bryan said she and her sister learned how to turn her mom to avoid bed sores, put on adult diapers, administer morphine and other paraprofessional caregiving tasks without any instruction.

“That was hard, I wish we had more guidance, because you are constantly asking yourself, ‘Am I doing this right?’” said Bryan.

Hospice Telehealth

Robin Fiorelli, senior director of bereavement and volunteer services for VITAS Healthcare, a provider of end-of-life care, believes in-person hospice care can never really be replaced but that telehealth has become a solution to some hospice challenges during COVID-19.

“We can conduct a virtual tour of a home hospice patient’s living area so our nurses can assess whether a hospital bed, walker, patient lift or bedside commode should be delivered to the home,” said Fiorelli.

“COVID has magnified the strain on family caregivers, there is no relief.”

She also added that face-to-face conversations about goals of care are being replaced by video chats in which physicians, patients and family members explore care-related wishes and document difficult-but-necessary decisions about ventilation, do-not-resuscitate orders and comfort-focused care. This proves especially valuable for family members who live far away from the patient and who can be part of those conversations remotely.

The Centers for Medicare and Medicaid Services (CMS) has waived certain requirements for hospice care at home due to the pandemic, such as allowing health care professionals to recertify patients for another six months of hospice care via a telehospice visit, foregoing the mandatory two-week supervisory visit for home health aides and waiving the mandatory hospice volunteer hours, which normally have to meet 5% of total hospice hours delivered.

“COVID has magnified the strain on family caregivers. There is no relief,” said Vic Mazmanian, a dementia care expert who operates Mind Heart Soul Ministry to train faith-based organizations, provide support group services for senior centers and memory care communities and work with hospice chaplains.

“Not being able to take a loved one to adult day care or a senior center so you can get a break is accelerating the stress and impacting the health of caregivers,” said Mazmanian. “The 24/7 nature of hospice care, with most, if not all, the work being done by the family member without help from professionals or volunteers, is being derailed by the pandemic with many caregivers feeling increased anxiety, depression and loneliness.”

From Grief to Gratitude

Mika Newton feels he’s been lucky. In addition to the daily home care for his mom, hospice workers come three times a week. But now that he has resumed his visits, he realizes the stress of not seeing her regularly like before has taken its toll on both of them.

“She’ll ask me why I’m wearing a mask and get angry about it because she doesn’t remember what is happening in the outside world,” said Newton. “Or she’ll forget she has cancer and I have to remind her. I realized the cancer may be killing her, but the dementia is slowly taking her soul.”  

Rebecca Bryan advises family caregivers facing hospice for a loved one to ask a lot of questions such as, “If my loved one tests positive for COVID or has one of the virus symptoms, does that affect your ability to come care for them?”

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“In the beginning of the pandemic, many of our patients and their families did not want our professional staff coming into the home. But that has eased up more recently,” said Dr. Kai Romero, chief medical officer for Hospice By the Bay, affiliated with UCSF Health in San Francisco. “We’re proud that throughout this entire experience we have continued to provide needed end-of-life care to everyone on our service and we’ve kept our direct care workers safe with strict testing, PPE and other guidelines. Not one of our staff has tested positive for COVID-19, even though we have had twenty-seven patients who have had the virus.”

COVID-19 Sparks ‘The Talk’ For Families

When Next Avenue asked readers on our Facebook page how the pandemic has affected care for their loved ones, one shared that she recently lost her mom after home hospice care and worked hard to make sure COVID-19 wouldn’t be part of the end of her life.

“Eighty percent of people don’t make a will or have the family conversation about long-term care because they are afraid if they do, they will die,” said Scott Smith, author of “When Someone Dies — The Practical Guide to the Logistics of Death.” Smith, who is CEO of Viant Capital and sits on a hospice board, advises families to have “The Thanksgiving Talk” where older family members share not just their wishes but where all the important legal and financial documentation can be found. 

Mika Newton said losing his dad galvanized him and his brother, Timo, to get all his mom’s end-of-life plans settled now, while she’s still alive. “My mom was able to participate in the conversation. which I’m really grateful for. And my dad did a great job making sure she would be OK financially, so it wasn’t a huge burden. I’m glad we went the route with hospice, I feel at peace with it.”

Complete Article ↪HERE↩!

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How to survive a pandemic

— by a gay man who’s lived through one before

By

From the number of complaints I’m hearing of pandemic fatigue and the widespread resistance to simple precautionary measures such as wearing a mask at the grocery store, it’s clear to me that many people don’t fully appreciate what the gay community has been dealing with for the past 40 years and don’t understand how we survived the AIDS epidemic.

At the risk of over-sharing, here’s a snapshot of what it was like to have come of age in the midst of a sexually transmitted and deadly virus.

We learned how to protect ourselves and one another by practising safer sex. We started using condoms, for which gay men had previously had no use.

And we did so not just for a few short months, but for decades.

Over the years I’ve had boyfriends and lovers and one-night-stands with men whose names I’ve long since forgotten, and I used condoms with all of them.

I had casual sex with strangers in bathhouses and in the backrooms of leather bars and I used condoms. I had sex in parks and parked cars and I used condoms.

I had sex when I was sober and I had sex when I was too drunk to stand up or even see straight, and nonetheless I somehow managed to use condoms.

I had sex with men who warned me that they were HIV-positive and with men who assured me that they were HIV-negative, and in either case I used condoms. I worked on the assumption that anyone and everyone might be infected – myself included – and I used condoms.

“We did this because we knew that unprotected sex could be fatal”

I had sex with the same man hundreds of times over the course of a 20-year relationship and we used condoms every single time, except for a very brief attempt at monogamy after 15 long years of endlessly discussing trust and testing and accountability, after which we decided that it would be easier and less stressful not to talk about it anymore and to just go back to using the damn condoms.

Occasionally condoms broke or came off, or I slipped up and put myself at risk, after which I lived in a state of anxiety for up to six months waiting for reliable antibody test results.

Then I renewed my promise to myself to be more careful, to do better.

We did this because we knew that unprotected sex could be fatal. We did this as we mourned and buried friends and co-workers and ex-lovers and attended more funerals than any young person should ever have to.

Whenever I needed a reminder of the importance of safer sex, all I had to do was look at the photograph that my older lover kept taped to his fridge, of a dozen of his closest friends at a birthday party in the early ‘80s. All of them so young, all of them so handsome. All of them dead by the time we met.

An entire generation of vibrant, talented men cut down in their prime, caught off guard by an emerging disease, wiped out by an invisible enemy.

‘We educated ourselves and the community’

We suffered from survivor guilt, wondering how and why we survived when so many had perished. We experienced anticipatory grief, wondering which of us would be next. At times we were nearly paralyzed with fear. Still we soldiered on.

We transformed our fear and grief into action by volunteering and fundraising. For years on end, every social event and drag show and gay bingo night involved selling raffle tickets and passing a bucket to scrape together donations.

We delivered meals to people too weak to cook for themselves and we visited the dying in hospices and palliative care wards and we stitched memorial quilts to commemorate those we’d lost.

We organized an annual AIDS Walk to support people living with HIV and we marched in the annual Pride Parade to remind ourselves and the world that we were still here and that we deserved the same rights as everyone else.

We educated ourselves and the community. My colleagues and I attended national and international AIDS conferences and created educational materials and conducted sexual health workshops. I coordinated a small group of dedicated volunteers who distributed literally millions of free condoms wherever men met for sex.

We were on a mission: every location and every interaction was another opportunity to promote HIV prevention.

“We trusted doctors and scientists”

We made weekly rounds of smoky bars with a skateboarding drag queen dressed as a nun and we sat in steamy bathhouses and talked to naked strangers about their sexual activities.

Late at night after the bars closed we cruised public sex environments with a bagful of condoms and a fistful of referral cards. We educated closeted men cheating on their wives and girlfriends, referring them to anonymous HIV testing sites and confidential counseling services.

We distributed condoms and clean needles to street kids and hustlers and transgender sex workers and injection drug users, and we collected untold thousands of used syringes for safe disposal.

We spoke to students of all ages and to young offenders in juvenile detention and we sat in healing circles in maximum-security penitentiaries with convicted rapists and murderers and encouraged them to keep each other safe.

We trusted doctors and scientists, even as the findings and recommendations changed. For years we used condoms and lubricants containing Nonoxynol-9 because health authorities told us that it might help prevent the spread of HIV, and then we stopped using it when studies showed that it actually increased the risk of infection.

We didn’t freak out or give up or give in to conspiracy theories and stop trusting science; instead we adjusted our behaviour as new and sometimes contradictory data became available.

‘To stay safe, to stay strong’

We told each other to stay safe, to stay strong. We put up posters encouraging everyone to “Be Here for the Cure.” Those of us with HIV took highly toxic pharmaceuticals for years and willingly participated in clinical drug trials until more effective and less damaging antiretroviral therapies eventually transformed HIV into a manageable illness.

Those of us who were as yet uninfected signed up for Phase III vaccine trials, allowing multinational pharmaceutical companies to inject us with experimental vaccine candidates, putting our bodies at risk for the greater good.

We told each other to be patient, that an effective vaccine would be available within a few years, never imagining that decades later the world would still be waiting.

We did all of this with insufficient government funding, with insufficient media attention and with insufficient support from our families of origin, while politicians largely ignored our plight and religious leaders preached that we got what we deserved and hateful bigots picketed our funerals with signs saying “God Hates Fags” and most people were simply oblivious to what was happening because it wasn’t happening to them.

“Normal wasn’t what we wanted; we wanted things to be better“

We didn’t whine about the inconvenience the virus was causing. We didn’t demand that the government tell us exactly how much longer the pandemic would last, or complain that we just wanted everything to go back to normal. Normal wasn’t what we wanted; we wanted things to be better.

We took to the streets to demand civil rights and adequate research funding and more effective treatment options, not to demand that hairdressers and nail salons re-open.

I’m 53 years old and I have been successfully managing to avoid contracting and spreading a potentially deadly virus not just for the past few months, but for my entire adult life.

I first heard about AIDS when I was an adolescent, back when it was tentatively known as GRID: Gay-Related Immune Deficiency. I saw a small story in the local newspaper about gay men in San Francisco and New York dying from a mysterious new illness, and even though I had never been to San Francisco or New York and even though I was too young to have had sex and had no one to talk to about being gay, I thought to myself: I better pay attention to this. I better take this seriously. Or it might kill me.

“I took it seriously”

I’ve done things in my life of which I’m not proud, but this is not one of them: I paid attention. I took it seriously. I didn’t let it kill me. Nor did I let it stop me from having an active and adventurous sex life, but I took precautions. I stayed safe, I stayed strong.

I lived to tell the tale.

So please: wear a mask in public, especially indoors. Avoid crowds and wash your hands frequently. Listen to public health officials. Trust the science and follow the recommendations, even as they might change.

This is the new normal; it might continue for years. Prepare yourself to be in this for the long-haul. Ignore the risks at your peril, or learn from the experience of the gay community in how to effectively respond to a pandemic with no end in sight: do your small part, protect yourself and take care of each other, work together for the common good. Stay safe. Stay strong.

Adapt and survive.

Complete Article ↪HERE↩!

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How Can We Bear This Much Loss?

In William Blake’s engravings for the Book of Job I found a powerful lesson about grief and attachment.

By Amitha Kalaichandran

If grief could be calculated strictly in the number of lives lost — to war, disease, natural disaster — then this time surely ranks as one of the most sorrowful in United States history.

As the nation passes the grim milestone of 200,000 deaths from Covid-19 — only the Civil War, the 1918 flu pandemic and World War II took more American lives — we know that the grieving has only just begun. It will continue with loss of jobs and social structures; routines and ways of life that have been interrupted may never return. For many, the loss may seem too swift, too great and too much to bear, each story to some degree a modern version of the biblical trials of Job.

I thought of the biblical story of Job last month when I was asked to speak to the National Partnership for Hospice Innovation. How would I counsel others to cope with losses so terrifying and unfair? How could those grieving find a sense of hope or meaning on the other side of that loss?

In my research I found myself drawn to the powerful rendition of the Book of Job by the 18th-century British poet, artist and mystic William Blake, in particular his collection of 22 engravings, completed in 1823, that include beautiful calligraphy of biblical verses.

Job, of course, is the Bible’s best-known sufferer. His bounty — home, children, livestock — is taken cruelly from him as a test of faith devised by Satan and carried out by God. He suffers both mental and physical illness; Satan covers him in painful boils.

Job is conflicted — at times he still has his faith and trusts in God’s wisdom, and other times he questions whether God is corrupt. Finally, he demands an explanation. God then allows Job to accompany him on a tour of the vast universe where it becomes clear that the universe in which he exists is more complex than the human mind could ever comprehend.

Though Job still doesn’t have an explanation for his suffering, he has gained some peace; he’s humbled. Then God returns all that Job has lost. So, the story is, in large part, about the power of one man’s faith. But that’s not all.

The verses Blake chooses to inscribe on his illustrations suggest there’s more. In the first engraving we see Job’s abundance. Plate 6 includes the verse: “Naked came I out of my mother’s womb, and naked shall I return thither: The Lord gave, and the Lord hath taken away.”

So, the Book of Job isn’t just about grief or just about faith. It’s also about our attachments — to our identities, our faith, the possessions and people we have in our lives. Grief is a symptom of letting go when we don’t want to. Understanding that attachment is the root of suffering — an idea also central to Buddhism — can give us a glimpse of what many of us might be feeling during this time.

We can recall the early days of the pandemic with precision; rites that weave the tapestry of life — jobs, celebrations, trips — now canceled. In our minds we see loved ones who will never return. Even our mourning is subject to this same grief, as funerals are much different now.

In Blake’s penultimate illustration in this series Job is pictured with his daughters. Notably Blake doesn’t write out this verse from Job; instead he writes something from Psalm 139: “How precious also are thy thoughts unto me, O God! How great is the sum of them!” In the very last image, however, God has returned all he had taken from Job — children, animals, home, health and more. Here, Blake encapsulates Job 42:12: “So the Lord blessed the latter end of Job more than his beginning: for he had 14,000 sheep, and 6,000 camels, and 1,000 yoke of oxen, and 1,000 donkeys.”

Blake intentionally didn’t make the last image a carbon copy of the first, likely in order to reflect new wisdom: an understanding that we are more than just our attachments. The sun is rising, trumpets are playing, all signifying redemption. Job became a fundamentally changed man after being tested to his core. He has accepted that life is unpredictable and loss is inevitable. Everything is temporary and the only constant, paradoxically, is this state of change.

So, where does all of this leave us now, as we think back to how our attachments have fueled our grief, but perhaps also our faith in what’s to come? Can we look forward to a healthier, more just world? Evolution can sometimes look like destruction to the untrained eye.

I think it leaves us with a challenge, to treat our attachments not simply as the root of suffering but as fuel that, when lost, can propel us forward as opposed to keeping us tethered to our past. We can accept the tragedy and pain secondary to our attachments as part of a life well lived, and well loved, and treat our memories of our past “normal” as pathways to purpose as we move forward. We still honor our old lives, those we lost, our previous selves, but remain open to what might come. Creating meaning from tragedy is a uniquely human form of spiritual alchemy.

As difficult as it is now, in the midst of a pandemic, it is possible — in fact, probable — that after this cycle of pain we feel as individuals and collectively that we might emerge with a greater understanding of ourselves, faith (if you’re a person of faith), and our purpose.

The word “healing” is derived from the word “whole.” Healing then is a return to “wholeness” — not a return to “sameness.” Those who work in hospice know this well — the dying can be healed in the act of dying. But we don’t typically equate healing with death.

Ultimately, to me, that’s the lesson offered by Blake’s Job: understanding his role in a wider universe and cosmos, transformed in his surrender, and the release from the attachments to his old life. Job had the benefit of journeying across the universe to understand his life in a larger context.

We don’t. But we do have the benefit of being his apprentices as we begin to emerge from this period, and begin to choose whether it propels us forward or keeps us stuck in pain, and in the past.

Complete Article ↪HERE↩!

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How death doulas are helping people process grief during the pandemic

By Tracey Anne Duncan

Like so many people, I have spent much of this pandemic grappling with grief. I’ve lost people I love, and even now, people I care about are ill. Even if you haven’t personally lost someone, you’re likely tapped into the collective sense of mourning. It’s hard to know how to comfort people who are dying or the people who love them under any circumstances, but when you can’t be together, it makes it even harder.

That’s where death doulas step in. In case you aren’t familiar with the term, a death doula is like an end of life midwife. They help dying people by guiding them and their families through the dying process. They help people plan out their death experiences. They can aid in navigating the practical parts — like wills and funeral planning, and also the emotional aspects — like helping people figure out what kind of rituals will make grieving cathartic.

Many of the usual ways that dying people and those who love them deal with death — deathbed visits, meetings with spiritual advisors, grief counseling — are not available to us right now. We may not get to have much, if any, contact with a person dying of coronavirus. In this pandemic of mass uncertainty, death doulas can help us through the grieving process.

“Doulas are professionals who provide support and guidance to individuals and their families during transformative life changes,” Ashley Johnson, an Atlanta-based death doula and founder of Loyal Hands, a service that matches people with end-of-life doulas, tells me. These doulas can train family members in some of the practical aspects of caregiving, help people create support plans, and counsel those who are dying and the people who love them, Johnson tells me.

Death doulas are also educators, in a way. Most of us spend a lot of time trying not to think about death, and we aren’t well-versed with the death process. Most of us aren’t even aware that death is a process that can be charted. Death doulas help folks get familiar with the normal and natural stages of dying, Johnson tells me. In the terrifying and confounding moments when grieving people are wondering what happens next and how they can deal with it with dignity, death doulas can step in to fill in the blanks.

There’s kind of a new-age, woo-woo stigma surrounding the work that death doulas do. They aren’t priests and they aren’t psychiatrists, so their professional world is kind of murky spiritual-ish/life coach-ish territory. But some psychologists do think that death doulas can play an important role in helping people cope with grief. “A doula could help people figure out how they want to mourn,” says Aimee Daramus, a Chicago-based psychotherapist.

Daramus adds that people should be mindful that many doulas aren’t trained therapists, but because they are familiar with managing grief so they are generally able to tell when a clinical professional is necessary. For people who are spiritually inclined, but not formally religious, this middle ground can be a comfortable place to mourn without devolving into either over-medicalized melancholy or eccentric science-shunning spiritualism.

“A doula should be able to recognize when someone’s thinking or behavior is starting to go beyond the normal range of mourning experiences.” In this way, death doulas can be a touchstone for figuring out if a person is having a healthy grief response or if they may benefit from another type of help. There is no one right way to grieve, of course, but some people can sink into depression if they don’t process their grief as it’s playing out.

One of the benefits of working with a death doula is that you can shop around to hire someone who fits your needs and understands the cultural specifics of your background. “A professional should work to understand the unique cultural practices relevant to that individual or family,” says Thomas Lindquist, a Pittsburgh-based psychologist and professor at Chatham University. This is especially important, he says, during important life milestones.

A lot of folks in the hospice and funeral industries will likely have a passing knowledge of many kinds of death practices, but you can find a death doula who shares your beliefs, or who literally speaks your own language. Grieving, while it is a universal experience, isn’t generic, and Linquist says that it’s important for a family or person’s religious beliefs to be incorporated into their care plan.

But how can a doula help someone die with dignity if they can’t even be in the same room with them? “As doulas, we have had to get really creative about the ways we meet with people,” says Christy Moe Marek, a death doula in Minneapolis/St. Paul, and an instructor at International End of Life Doula Association (INELDA). Marek says that she has met with the families of dying people on their decks and porches, but that she has had to meet with most dying people via Zoom. It’s not ideal, she says, but adds, “it is opening up such possibilities given the constraints of the pandemic.”

Death doulas are finding new ways to support people. “So much of the way this works right now is in helping both the dying and their loved ones to manage expectations, reframing what they hope for, and to shift focus onto how the ways we are connected whether we are able to be together in person or not,” Marek says.

Marek says that helping people accept the reality of difficult experiences is really the whole point of her work. “During the pandemic, what is actually happening is different than we could possibly imagine and we may not like it. We may actually hate it with our whole being, but it won’t change what is. So we work with that,” Marek says, “And that is what ends up being the mark of a good death.”

Complete Article ↪HERE↩!

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‘These Are Real People Dying’ —

Why an Artist Filled His Yard With Flags

Plastic flags, each representing a Texan who died from Covid-19, outside the home of Shane Reilly, an artist in Austin

Shane Reilly plants a flag for each Texan who dies of the coronavirus. As the national death toll nears 200,000, The New York Times used an image of his memorial to illustrate the staggering scale of loss.

By Will Wright

In May, when Shane Reilly, an artist in Austin, Texas, started planting one flag in his yard for every Texan who died from the coronavirus, the state had fewer than 1,000 deaths.

Now, Texas is approaching 15,000 people dead, and the nation will soon hit 200,000.

For passers-by and those who have seen pictures of the memorial, including an image featured on the front page of Monday’s New York Times, Mr. Reilly’s yard serves as a sobering reminder of the losses so many American families have endured this year.

I spoke to Mr. Reilly recently to ask how his project started, and where it stands today. Portions of our conversation have been edited for clarity.

Take me to the beginning. What made you want to do something so public? And how did you land on flags as the way to tell this story?

I’ve got an immunocompromised son, so when the coronavirus hit, I started paying close attention to it. We live on a corner, so I see people walking by every day and I would notice that they just weren’t wearing masks, and I thought, something’s not hitting home with them.

These are real people dying, real Texans dying, and I’ve got a kid in quarantine here at home and people are acting like this is almost a vacation.

So I thought, what could I put out there that would wake people up and make them say, “Oh, this is real, this is something we should pay attention to”?

Where do you get the flags?

I started getting them from Lowe’s and Home Depot. Lowe’s carries orange and pink, and Home Depot carries red and white. When I started this project we were at 850 deaths here in Texas. I thought, “Wow, 850 flags in this yard is really going to wake people up.” So I bought 1,000 just to be on the safe side.

And now we’re at roughly 15,000 deaths.

As I’m talking to you I see a guy and a girl outside, taking photos of my yard. I get a lot of that. I get a lot of people walking by and taking photos.

Coronavirus Schools Briefing: It’s back to school — or is it?

The response has been pretty amazing. I’ve had several handwritten letters in my mailbox, no name on it, no return address. Just, “Thank you for doing this, I’m a first responder and I’ve seen a lot of deaths from this.” Or, “My mother died of this, thank you so much.” Other people have left bundles of flags outside. It’s been pretty touching.

For people who haven’t seen this in person, can you explain how your yard has changed over time?

In the beginning I was trying to space everything out in an even pattern. I thought that would have more of an impact, to see this uniform field of flags.

Now I’m at the point where there are so many flags I just kind of walk in between rows until I can find a large enough space, and I just plop a bunch of them down. When I hit 3,000, I had people telling me, “You’re going to run out of space.”

What started just in the corner now covers the entire front yard and the entire side yard. I put flags out about every other day, but there were certain times when Texas was spiking that I couldn’t wait two or three days because there would be 1,000 more flags I would have to put out if I waited that long.

Now that you’ve been doing this for so long, does it still carry the same emotional weight?

I never lose sight of the fact that these are people’s lives. That stays with me every time. The other day I put out 300 flags and, you know, that hits you. But also I’m looking out at this sea of flags and it seems never-ending.

I can’t keep carrying that weight like I did earlier in this project, so I’m starting to build a callous. That sounds awful, but I do have to remind myself sometimes that this was someone’s mom, this was someone’s lover, this is real.

As the nation approaches 200,000 deaths, how are you grappling with that?

My first emotion is anger. There was a plethora of information out there to suggest that we could have done things differently, but people in charge chose not to. They actively went in the other direction.

I squarely place a lot of these deaths on them. Proper leadership could have saved tens of thousands of lives.

It’s shocking and saddening and infuriating. And every day, people walk by my house still not wearing masks.

Complete Article ↪HERE↩!

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The Upside Of Virtual Grieving

By Caitlin Stall-Paquet

I attended my first Zoom funeral this past June. My husband Aaron’s aunt Maria, who lived in Pennsylvania, died of breast cancer, but her passing was still defined by the pandemic. Sitting in front of a laptop at the dining-room table in my mom’s house in southeastern Quebec, Canada, we, along with a dozen or so others who couldn’t be there in person, watched our American family gather for the small service.

Despite a few to-be-expected technical issues — people not knowing how to mute or talking over each other — it was incredibly moving. I could see the faces of all the other online participants at once, noticing their collective grief more than I ever would have in person, a mournful mosaic. Towards the end, the funeral organizer asked if anyone joining remotely wanted to share a story. Everyone in attendance turned towards the laptop screen and the grief of the absent unexpectedly took the spotlight. Though I didn’t share, I felt more visible than I ever have attending a funeral, aside from when I delivered my father’s eulogy. It was unlike any service I’ve been to, in a good way.

COVID-19 has forced us to reassess everything in our lives these past few months, but especially our relationship to death and grief. It’s the great force hanging over this pandemic, the thing we fear, what we’re fighting to stave off, while it’s simultaneously thrust in our faces on a daily basis via news reports and press conferences. Though this proximity to loss is a new experience for those who have been luckily shielded from saying goodbye to a loved one, we can all use it to become better at handling grief beyond the pandemic. There have been a lot of calls for not returning to “normal” post-COVID, and the way we mourn deserves to be part of that change.

In part, because many of us aren’t great at dealing with death.When my father died from cancer when I was 29, barely anyone knew how to talk to me about it. (Though it comes from a good place, “I’m sorry for your loss” can start feeling impersonal after a while.) Three-and-a-half years later, I’ve gotten used to my sadness being awkwardly side-stepped or ignored.

There are a few who are willing to dive into the grief weeds with me, who ask questions about my dad and understand that, though the years pass and the pain changes, it never goes away. But many people act like even mentioning someone I love who has died is a faux pas, turning the individuals themselves into taboos. Though grief will always be a personal experience, it doesn’t need to be an isolated one. I’ve never met anyone who wants to be forgotten after they’re gone, so it’s no stretch to assume that the dead want their names in our mouths, shared times in our minds, and swells of feelings in our hearts.

Many of us aren’t great at dealing with death. When my father died from cancer when I was 29, barely anyone knew how to talk to me about it. Though it comes from a good place, ‘I’m sorry for your loss’ can start feeling impersonal after a while.

This loneliness we feelwhen faced with death can be exacerbated by the way we mourn. Although Christianity has been on the decline in the US, our society’s handling of grief has been largely shaped by that faith’s solitary and stoic traditions. For many, grief is seen as something best talked about behind closed doors, and if you’re lucky, in therapy. We’re told to “stay strong” and have been taught to treat mourning as a disease to cure ourselves of within a tidy time frame. After that, we’re mostly silent about our pain rather than reflecting on its shape-shifting, life-altering nature.

This was partially why the Zoom funeral felt so important. It reminded me that, though they’re held to honor the dead, funerals are mostly for the living, one of the few times we’re allowed to mourn openly. The virtual service drove home the importance of coming together even though physical distance felt more impassable than ever. There was also something surprisingly reassuring about attending a funeral at home, surrounded by familiar comforts, with the option of turning off the camera or stepping away from the screen if we needed a moment. It’s unique to be forced to grieve in this new way, so privately and publicly at once. It was something I didn’t realize I’d needed.

For years, I’ve been envious of people who participated in Mexico’s Día de Muertos (Day of the Dead), the holiday that honors those who’ve passed, year after year, long after they’re gone. The celebration reminds me of a trip I took in 2015 to central Bali, just before the one-year anniversary of my uncle John’s death. My visit in the mountains coincided with a Hindu-Balinese cremation ceremony known as ngaben: It started with a long procession through the village for which people wore bright clothes adorned with tons of flowers, and it culminated in an outdoor cremation.

The closest I’ve come to that communal celebration of death was when I was nine years old and my family held a haphazard shiva after my zaida died. As per the Jewish week-long mourning tradition, we covered the mirrors in his Montreal apartment, and people dropped by to sit in uncomfortable chairs. But more importantly, I had a lot of time with my extended family during which zaida’s passing could settle in and move us through a spectrum of emotions, tears, and jokes, solidifying our relationships in the process. That’s the thing about mourning, when it’s shared openly, it brings people together.

Taking the time to let grief sink in feels natural in a pandemic when we’re alone with so much time on our hands.During quarantine, I got more recognition for my sadness than I have in the past, too. Maybe that’s because we were mourning all sorts of things — the normalcy of our lives, our lost connection to each other, the tenuous future. With our everyday fast-paced routines stopped in their tracks, it became painfully obvious how much we craved the contact we’ve taken for granted. Isolation also seemed to make many better at paying attention to what truly matters. On what would have been my father’s 66th birthday, my friend Catherine left me flowers on my doorstep. Another friend left me a voicemail playing one of my father’s favorite songs in its entirety, a gesture that made me laugh-cry like I never had before, and I felt closer to both of them for it.

It’s a cliché that death is the great unifier, but COVID-19 has given us the opportunity as a global population to reflect on what that means and empathize like never before. We can use our times of solitude — as we might have to go back into isolation periodically — to contemplate and appreciate the lives we get to live, while paying our quiet dedication to those who are gone. Allowing the loss to redefine us while also moving on is surprisingly healing, and that in the end is the greatest tribute we can give.

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This year, Rosh Hashanah is a time of mourning

By Elliot Kukla

Yesterday, the sun did not rise in my Bay Area home. My toddler who usually wakes at dawn, slept until 9am and woke up confused, pointing to a dark umber colored sky, obliterated by clouds of smoke from wildfires billowing all over the West Coast. Even the hummingbirds and bees in my backyard were disoriented.

This fall, we are not approaching an ordinary New Year. I will celebrate Rosh Hashanah in my living room, connected by video conference technology to my community, as California burns, hurricanes threaten the southeast, and the entire country faces a lethal virus. Everything is changing. We can no longer even depend on the sky to be blue.

We have all faced so much loss in the year that passed, but have we taken time to grieve?

Some of the losses of the past year have been obvious and clear: Precious people have died, countless homes and habitats have burnt down, and jobs have been lost. Other losses are more amorphous. We don’t know yet what we will get back of the world of 2019: Will our kids ever get to play freely again? Will we have predictable seasons in the future?

I am a rabbi who offers spiritual care for grieving and dying. I have learned from my clients that grief is essential; without naming the loss we are unable to draw together and comfort each other and we remain isolated in our suffering. There is a cavernous absence of public grieving for the momentous losses we all are facing in 2020.

Just consider the scale of resources given to grieving the 3,000 lives lost in 9/11, versus the 190,000 people (and counting) who have died in the COVID-19 pandemic in this country. Where are the large national memorial services, the plans for monuments, the presidential condolence visits? Much of this disparity is linked to who is dying (at least in the public imagination), and the prevailing belief that “only” old, sick, and disabled people die of COVID-19.

Mourning is humanizing, and its absence cracks open the door to atrocities.

My Jewish ancestors were snatched off the street by SS officers and buried in mass graves; my queer ancestors were denied funerals out of fear and bigotry as they died of AIDS. My disabled ancestors were warehoused in institutions, and often buried without names on their graves. My trans ancestors are left murdered in alleys, their cases growing cold, as I write this.

Despite this lack of official lamentation, they found ways to mourn and be mourned by each other. Grief has always been a way for disenfranchised people to claim our value.

After surviving the Holocaust in Belgium, my great-grandmother Rivka moved to England. Before she died, she took my father out to the coal heap behind their home: “Swear on this mountain,” she said to him, “that you will mourn for me.” To this day, I feel bound by this oath made by my nine-year-old father long before I was born, to grieve for this woman I never met, whose face looks so much like mine.

My friend, Stacey Park Milbern, died on May 19th, 2020, her 33rd birthday. She did not die from COVID-19, but from battling for care in the beleaguered medical system as a disabled activist and a person of color in an era of pandemic. I attended her funeral from my living room. I picked white geraniums and purple thyme from my garden and held my partner close. The internet was flooded with what Stacey taught us.

Disabled activist Alice Wong wrote an obituary on loving Stacey and the radical world of love and care she had built. Wong’s post was filled with Stacey’s own words on her legacy: “I do not know a lot about spirituality or what happens when we die, but my crip queer Korean life makes me believe that our earthly bodyminds is but a fraction, and not considering our ancestors is electing only to see a glimpse of who we are.”

Reading Stacey’s words and Wong’s tribute, I felt my own sense of self-love as a disabled person, restored by mourning for Stacey, at the same time as aching against the unfairness of it all.

Rosh Hashanah is the beginning of the new year, but it is also a time to say good-bye to the year that past. Our ancestors, like us, lived in times of chaos and change. Tears are a central High Holy Day theme. All the traditional Torah and Haftarah readings for Rosh HaShana speak of weeping.

The Shofar itself is a symbol of tears. Our sages teach that the ram’s horn we blow on Rosh Hashanah must be kakuf (bent) to reflect our own bodies bent over in grief; while shevarim (the broken blasts of the shofar) are meant to echo the sound of our own tears, they are always surrounded by tekiah (whole sounds). This teaches us that even though our heart has been broken it has the capacity to be whole again and, in fact, more complete for having encompassed brokenness.

Grief is transformative: When we name the immensity of loss, we also claim the depth of our capacity for love.

Complete Article ↪HERE↩!