Month: February 2020

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The Emotional Wallop of My Friend’s Green Burial

What I learned about the realities of this new, but old, practice

By Janet Siroto

My friend Carla saw almost everything in life as a creative challenge — a moment to brainstorm and make a statement.

If there was a potluck brunch, no way was she picking up a dozen bagels. Instead, she’d find a recipe for pear-ginger coffee cake, go buy some fresh yeast and get baking.

Any home-improvement project triggered a deep dive into materials, colors and a discussion of what kind of light bulb would cast the right glow.

So when she was telling me about some fabric she’d found — “It’s moss green velvet and looks like the forest floor in a fairytale,” Carla said — the enthusiasm was familiar, but the circumstances very surprising.

Carla had heard about the concept of a green burial and had gone all in. Even though she was in her 60s and in good health, the idea spoke to her; her love of nature, her love of doing things a little bit more individualistically. The fabric she was describing would be her burial shroud.

Getting Back to Basics

A green burial is an “everything old is new again” practice: After death, no chemicals are used to preserve the body. No heavily shellacked coffin is placed in the earth. Rather, one’s burial is done as naturally as possible so the body can return to and nourish the very earth beneath our feet. Everything that goes into the soil must be biodegradable — and the velvet Carla found fit that bill.

This closer-to-nature concept is in sync with society’s growing concern for the planet. Before the advent of the modern burial, when loved ones died, their bodies were wrapped in a shroud and put in the ground. But by the time we reached the early- to mid-1900s, a very different, non-eco-friendly tradition had taken over.

According to Scientific American, “funerals [in the U.S.] are responsible each year for the felling of 30 million board feet of casket wood, 90,000 tons of steel, 1.6 million tons of concrete for burial vaults, and 800,000 gallons of embalming fluid. Even cremation is an environmental horror story, with the incineration process emitting many a noxious substance, including dioxin, hydrochloric acid, sulfur dioxide, and climate-changing carbon dioxide.”

About 50 years ago, our collective consciousness and conscience about burial began to change. “American sensibilities about environment shifted, with Rachel Carson in the ’60s and the launch of Earth Day and the formation of the EPA in 1970,” says David Charles Sloane, an urban planning professor at the University of Southern California and author of Is the Cemetery Dead? “We’ve become a much more aware society about environmental impact.”

That awareness enveloped end of life, and the idea of a good death and green burial began to be entwined and gain interest. Last year, a study found that 54% of Americans were actively considering this option, and 72% of cemeteries reported an increased demand (many are responding with green zones on their premises).

Another reason why green burials are catching on: the lower price. Joyce Foley, who owns Cedar Brook Burial Ground in Limington, Maine, where Carla chose her plot, says green burials typically cost $3,000 at the very most, versus $5,000 and up for traditional burials.

Being There: At a Green Burial

But no matter how much one may read about green burial in principle or how many statistics one might absorb, little can prepare you for the actual experience. So, back to my friend Carla.

Picking the green velvet was just one facet of her creative expression. She also hunted for a natural headstone. Many green cemeteries offer local stones, but Carla wanted something special — and somewhere, somehow found a petrified tree stump that could be engraved with her name and the dates of her life when the time came. (Foley, the burial ground’s director, approved of the choice given how well it harmonized with nature.) Because the stump was so heavy, it stayed in the back of Carla’s car for at least a year, as she researched who could engrave it.

As blithe as Carla seemed about the prospect of her green burial, things took a serious turn a few years later. Her increasing fatigue led to tests, more tests, and a diagnosis of a rare blood cancer. A bone-marrow “perfect match” was found, but alas, after the procedure, graft versus host disease destroyed the hope of recovery. In her final days, Carla would say, “I hope you’ll come picnic by my spot in Maine. I’ll be helping the trees grow. The cycle of life.”

Just shy of her 70th birthday, she died in a hospice not far from her home in Cambridge, Mass., and plans were quickly made for her burial. My family — myself, my husband and our two college-age sons — joined about 10 other dear friends that day. We drove into, and then walked across, what looked very much like every nature preserve I’d ever visited. Trees everywhere. Quiet. Bird song. Rustling leaves. A gray-blue winter sky.

There were none of the manicured lawns and stately tombstones in regimented rows as you’d see at most cemeteries. We assembled at the gravesite, which had been hand-dug prior to our arrival, and barely noticed the other plots nearby, so subtle were the markers. A bunch of dried flowers or perhaps a small pile of stones revealed them to us.

The bottom of Carla’s grave had been covered with boughs to make it a soft resting place. A hearse pulled up and the driver asked my husband, sons and a couple of other men to assist. And then came the shock of seeing a plain wood board pulled from the back of the long car with my friend’s shrouded body on top of it.

I may have gasped a bit, as this was so unexpected and so far from the “avert your eyes” nature of death and burial I had grown up knowing. For a moment, I felt like a child recoiling from a scary movie.

My friend’s shrouded dead body was right there in front of all of us. We could see Carla’s silhouette — her long, slender body; her aquiline nose. There was no coffin to shield us from the truth that her incandescent spirit had left this world and only her remains were now here. It was quite an emotional wallop.

How often are any of us in the presence of a corpse, let alone one about to be put into the soil? How often do we have this kind of unmediated, unmedicalized contact with someone who has departed this realm?

Before Carla was lowered into the ground, a few of us placed a hand on the contour of her shoulder (yes, you could make it out) and said our goodbyes. The board with her body was then lowered via straps into the grave by the men in the group. Some people tossed in loose flowers. Carla’s friend Louie had brought his guitar and sang her favorite song, “Here Comes the Sun.”

Carla’s daughter said, “This is exactly what she wanted. It’s all so beautiful.”

The Simple Truth

It’s been a couple of years since that day, and I have visited only once, when I was heading to Maine for a wedding. I spent a bit of time by Carla’s gravesite and that stump tombstone and thought about the gift of her friendship and how much I wished she were still here.

The green burial was one of the gifts of her friendship. She showed those closest to her a path of possibility, different from the mainstream.

My family and I still talk about the raw beauty of the burial, of how we felt so close to Carla and so intimately involved with her transition to whatever may be ahead. My husband and sons still talk about the visceral experience of transporting and then lowering her body — feeling its weight — so Carla could become one with the earth and “feed a tree,” as she said.

It was a jarring experience in the moment, to be sure — but one I will always remember. It connected me to Carla at the end of our time together and also to the most elemental way of saying goodbye to the dead, as our ancestors had done for generations. It brought a simplicity and meaning to one of life’s hardest passages.

Complete Article ↪HERE↩!

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Are we just too busy to grieve?

Do we just not have time to grieve anymore? Not expressing how we feel and holding in our grief affects our wellbeing, jobs, relationships and life. In today’s world, everyone busy- work, social life, family, social media, events.. the to do list is endless! Ask anyone you haven’t seen in a while how they’ve been […]

By Juliette Mullen

Do we just not have time to grieve anymore?

Not expressing how we feel and holding in our grief affects our wellbeing, jobs, relationships and life.

In today’s world, everyone busy- work, social life, family, social media, events.. the to do list is endless!

Ask anyone you haven’t seen in a while how they’ve been and they’re likely to answer, “okay, busy!”. This isn’t surprising to hear, but something that I didn’t expect in the midst of our very busy lives is how many people who have recently suffered a loss are just too busy to grieve.

Let’s face it, we all have bills, responsibilities and commitments so, for some, taking the time to grieve and heal, to find support may feel like a luxury. Not only from a financial perspective, but also time- they have so much to keep up with.

With life moving so fast and so many things to do, and in a lot of cases, so many people to take care of, do we really give ourselves the chance and time we need to grieve?

There are many reasons we may not allow ourselves time to grieve- and they may not always be what you’d think. Work, responsibilities, being a parent, avoidance, lack of awareness and not realising we need support, sometimes even stubbornness.

We all need to ask ourselves, (and answer honestly!) is it actually about not having the time, space, money or is it a case of not making the time? Some find it easier to throw themselves into a project, to the kids, to work.. as it is “easier” than facing the grief and the emotions that come up. I’m sure “easy” is the last word most people who have experienced a loss would use, but let’s reflect on that. If we are always moving, always busy, and always worried about everyone and everything else, then there just isn’t time to think about our self, our own needs, our emotions or our pain.

I recognise this dilemma all too well. When I suffered my own loss in life, the loss of a baby, the loss of a parent, the loss of a marriage. The loss of dreams, hopes and a part of me. Grief is both real and measurable, Scientists now know that loss changes us forever. Whether its the death of a parent, or a child- it is one of the most emotional and universal human experiences. Yet, loss is something that we all inevitably face at some point in our lives.

However, ungrieved losses takes it toll on our hearts and can make us feel disconnected from life. We think we can avoid it by being busy but over time, we shut down our emotions, little by little until we are so out of alignment with ourselves, that in some cases we don’t even recognise ourselves anymore.

It’s important to recognise our own needs, asking our self what we really need and recognise how important self care is. Often people suggest grievers eat well, go for walks, get rest, have a cup of tea. Of course, the act of self care itself (whatever it is) can be pleasant in itself, but these quiet activities allow for just that: PEACE and QUIET -and a time to reflect and take that inner journey to allow us to sit with our emotions and heal. It’s something every griever needs, but the busy griever just doesn’t seem to get enough of.

Complete Article ↪HERE↩!

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Mourning From the Closet

When you lose a parent before you come out, you grieve twice.

By Madeline Ducharme

The day after I saw my dad for what would turn out to be the last time, I surprised myself and told someone I’m queer.

It was first-year move-in day at college. I had just left behind the breezes of Southern California for the 90-degree temperatures and relentless humidity of late August in New York City. Soaked in sweat but giddy, I took a break from sorting out storage bins and dorm décor to sit on the floor and get to know my three new roommates. Early into our conversation, I suddenly said, “I’m pretty sure I’m bisexual.”

I remember inelegantly shoving it into our early introductions, unprompted. To my roommates, I’m sure this brief declaration was as laid-back as the tie-dyed crop top I was wearing that day. (It said “stay rad” across it. I know.) But for me, it sparked a moment of exhilarated panic as my mother and aunt—both of whom did not know about my recent self-discovery—returned to my room. As the two of them struggled to help me organize my life in our itty-bitty shared space, I whispered from the floor: “Don’t mention what I said earlier. I’m not out to them.”

Actually, I wasn’t out to anyone, except a few close friends. My mom and sisters were largely progressive, but I had also been raised in a Catholic home and attended Catholic school through eighth grade. My father, meanwhile, was a kind of atheist, nonvoting libertarian, often hellbent on defending his own political apathy. In one of the very last conversations I ever had with him, he kept trying to press my buttons. As he drove my mother and me to the airport to begin my college journey, he shared tongue-in-cheek admiration for “our future female president”: Carly Fiorina. (This was 2015.) He laughed and I rolled my eyes, but it felt clear I couldn’t tell him what I was realizing about myself.

In the latter half of my high school years, I hadn’t quite come out to myself either. I consistently explored the now virtually nonexistent corners of queer Tumblr. (Remember #girlskissing? No?) After I used every silly, drunken senior-year Model U.N. party as an opportunity to kiss my girlfriends, my own sexual fluidity started to become a little clearer. I had come to see historically women’s colleges as queer havens (thanks, also, to Tumblr), so I chose one for myself. I decided that a journey of coming out could be safely relegated to college, and maybe—just maybe—if I got a girlfriend, I would have reasonable enough “proof” to open the conversation at home, with my mom and, somehow, my dad.

Less than two weeks after I arrived at my dorm room, my dad died of a sudden heart attack. I had just finished my first week of classes.

My immediate grief saw me fluctuating between long days in bed and spurts of typical freshman social energy. I felt most alive after campus activities related to the queer community. I joined a Facebook group called “HELLA GAY MOVIE NIGHTS.” I attended monthly LGBTQ dance parties. I performed in our musical theater society’s Rocky Horror Picture Show shadow cast.

I emerged more fully out of the closet, but I still hadn’t come out to family. In fact, I felt like I was living a double life: one part of me idle and in mourning and the other, out. The thrill of that felt so distinct from my grieving self that it was almost as if the openly queer part of me was unburdened by my loss—so separate and distinct that my old life, and its sudden tragedy, began to feel less real.

Returning home for breaks during the school year shattered that illusion. My grief ruled me. I came to a realization: While I wanted to share my new self, my new life, with my mom and sisters, I felt a devastating relief that I wouldn’t ever have to come out to my father. I had no way of knowing how he would react, but I took comfort in knowing I’d never have to face even the slightest disapproval, criticism, or judgment from him. It was a dark kind of consolation.

Then I met my first girlfriend. I fell in love with her. I envisioned a future with her. In a few clumsy, emotional conversations, I finally shared my secret—and my relationship—with my family. They were awkward, but ultimately happy to embrace this part of me.

When you lose a parent in your teens, you immediately imagine all the milestones you’ll hit without them: graduation, a first job, a wedding, and a family of your own. But I also started to realize that my father might not even recognize me anymore, not only because of how I had aged but also because of who I’d become.

I began to have recurring dreams where he came back to life and I was tasked with welcoming him back to our world, back to our family, and to the new me. I would update him on all he had missed. It took this chimerical notion to make me rethink my relief: If any of these dreams ever took place on my wedding day, it’s possible that my father would look right past me, because I might be next to a woman.

Nearly a year later, that realization launched a kind of second mourning. I lost him first, then, later, lost the opportunity for him to ever know who I am. To know me at my happiest. I felt intense guilt and shame about the comfort I had initially taken in avoiding the conversation.

Around that time, I realized something else. I wanted to tell my most elderly family members who I was before they were gone too. This presented obstacles. My living grandfather is an octogenarian from the Middle East. My living grandmother and her sister are 92 and 100 years old, respectively. These two women live in my family’s home. They are all deeply Catholic.

Last May, my grandfather was set to visit New York City for my commencement. A few weeks prior to the ceremony, my mother mentioned to me over the phone that if my then-girlfriend would be celebrating with us, I owed him a conversation before his trip “to avoid any surprises.” Before I could gather the will, my girlfriend and I broke up, and my grandfather’s lymphoma kept him in California.

Soon it’ll have been another year since then. I still haven’t come out to any of them. I’ve worried that I’ll experience the same parallel grief when their times come. After college, I stayed on the East Coast, so perhaps I really fear being absent in the last years of their lives. Perhaps I don’t want to trouble them with an exasperated conversation in their old age. Perhaps I want to spare myself the pain of rejection.

Another part of me believes they already know. They don’t comment on my short haircut or my unshaven body hair when I’m home, and they’ve stopped asking me about my romantic prospects. Maybe there’s a mutual, unspoken understanding between all of us.

When I think back on the dark nights scrolling through Tumblr or that steamy move-in day with my quiet coming out, I look fondly on a person who was finally allowing herself to live the life she wanted. I don’t judge her for hiding before. I don’t scoff at her past fears. Instead, I respect her for waiting for the moment to be right for her.

More than a half-decade later, I’ve discovered a different side of that person. The side that accepts the person her father knew when he died. And the side that, when it comes to revealing her full self to the rest of her family’s elders, gives herself permission to be OK with what they may never know.

Complete Article ↪HERE↩!

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A Chaplain on How to Talk About the Right to Die and Death With Patients

By Diane Rehm

Martha Kay Nelson has had a long career in hospice work. Rather than choosing hospice work, she believes hospice work chose her. Her training was at Harvard Divinity School. She did a yearlong internship as a hospice chaplain during her graduate work. The year after she graduated, she managed to combine her career as a chaplain with her work in hospice. She is in her mid-forties, with short hair and hazel eyes. Her warm, open face, earnest manner, and easy smile help me understand why she is so good at her work. We sit together in her office at Mission Hospice & Home Care in San Mateo, California.

DIANE: How do you feel about California’s “right to die” law?

MARTHA: Well, I have many feelings, and they could vary depending on the day or the hour. It depends on whom I’m talking to, and what her or his experience is. My overall sense about the law is that people have a right to make their own health-care decisions, whether it’s at the end of life or at any time up to that point. I know people have a hard time having these conversations, particularly early on, before they’re even sick. And then they get sick and it’s crisis time, and those decisions have to be made quickly. The End of Life Option Act to me is part of a spectrum of all those decisions and conversations that come at the end. It’s a new end point on that spectrum.

D: You’ve been in a leadership position here at Mission Hospice, not only learning, but teaching. Tell me what have been the elements of transmitting this information to others.

M: It’s been an interesting learning curve. I think even seasoned hospice professionals have had to adjust to a new option for patients, stepping into that terrain. The elements that have been important in teaching staff members, working with health-care partners, have been to get folks to acknowledge at the outset that this is a challenging topic, this is new terrain, there are profound implications, and not to shy away from it.

Some folks here at Mission Hospice didn’t want to participate, but the majority did, to have their questions answered or share some of their thoughts, their concerns. We’ve done this regularly enough that people felt they could talk freely about the End of Life Option Act. We didn’t want it to be whispered about awkwardly in the corner, that this law is coming and our patients are going to have the right to choose the option. As an agency, we’re not advocates for the law, we’re advocates for our patients, and we won’t abandon them. Having said that, any of our employees, if they’re not comfortable, don’t have to participate. They can opt out if they need to, and they would be fully supported.

D: What kinds of questions did you get from staff? What kinds of issues did they raise?

M: At the outset, a lot of general questions about details of the law, how it works, how are we supposed to communicate with our colleagues around it, what can we say to the patient and what can’t we, those kinds of things. Questions arose about accessibility to the law. If I have patients who are saying they just want to end it all, and they’re saying this a lot, but they’re not specifically asking about the law, then can I bring it up with them or not? We have a policy here at Mission Hospice that we let the patient lead. If a patient is inquiring about his or her options, then we will be there.

That’s one kind of question. Other clinicians have asked about folks who haven’t had the chance to be educated about medical aid in dying, or don’t have access to resources where they might have learned about it. What if it’s something they’d like to avail themselves of ? There’s kind of a social justice question there. There are also questions arising from specific cases. Every case is different.

D: Can you give me an idea of how many patients have actually come forward and asked you about the right to die?

M: We’ve been tracking some of these numbers, and to date, we’ve served around forty-five people since California’s law went into effect, which was a lot more than we anticipated. When back in 2016 we set out to draft our policy and prepare ourselves, we thought maybe we’d have four or five people in the first year. We had twenty-one. And about that same number inquired about the law, but never went all the way through the process. Either they actually died before they had a chance to use the law, or they changed their minds. I would imagine that it was split evenly.

D: Tell me about the process. So a patient comes to you and asks about the process, the law. How do you respond?

M: My initial response as a chaplain would be one of curiosity. I’d be interested in learning more about their thoughts and why they’re asking. It’s a big thing to ask about. Sometimes people are afraid to even inquire. They’re afraid of being shamed or judged. So I’d want to let that person know that I’m glad they’re asking. And then we’d have a conversation, whatever they would wish to say at that time. Next, I would contact the doctor and the rest of my interdisciplinary team members and would let them know the topic had been broached. Then a doctor would probably go and make a direct visit, which would be considered the first formal request, if the decision was made to pursue that course.

We really encourage the other team members to make sure they keep talking to one another—the social worker, the nurse, the spiritual counselor, home health aides, and volunteers who might also be involved. Through a team effort, we would need to have clarity on how much privacy the patient would want. Patients have the right under the law to not tell anyone but the doctors they’re working with, not even family members. Our experience has been that that’s not often the case. Usually there is communication with family.

D: Who makes the initial judgment that the patient has six months or less to live?

M: The attending physician on the case. And if the patient inquires about the law, and his or her doctor says, “I’m not comfortable being involved with this,” that’s one way we might get involved. Or it might be a hospice patient already on our service.

D: I saw in your waiting room a brochure for Death Cafes. Can you tell me about them?

M: The Death Cafe movement started several years ago in England. It’s basically having a conversation over coffee and cakes in a public venue. Anyone is welcome to attend, and the purpose is open-ended. The goal is to talk about death in any way you wish. There does need to be a facilitator, someone who is able to establish ground rules in etiquette so folks aren’t talking over one another. Folks that host them tend to have some level of experience in end-of- life care, in thanatology, but anyone can sign up. I’ve led a couple of them.

D: How successful do you think Death Cafes are as teaching tools, as comforting elements in the whole discussion of death?

M: I think Death Cafes are successful in meeting the needs of folks who already want to talk about death. If you show up at a Death Cafe, there’s something in you that is already ready to speak and to hear what other people are thinking. It can serve as a cross-pollination of ideas and thoughts, and normalization. The cafes meet a kind of thirst that we have in our culture to speak about these things openly and not be afraid. How you get people to Death Cafes is another question. I’ve had some people say they’re offended by that name, or they don’t want to attend a Death Cafe because it sounds morbid.

D: What is the best way to reach people? How do we get the conversation started even before we’re sick?

M: There’s no one best way. It’s about being creative and really getting to know your community. In my family, I’ve been lucky in that we’ve always talked about death openly. I have ongoing conversations now with my father. He’s about to turn eighty-three, and I really value the kinds of discussions and ruminations we have.

It’s wonderful. We’ve started kind of reflecting theologically, talking about, wondering together, what happens after we die. To be able to have that in a father-daughter kind of way. I’m well aware of what a precious opportunity it is to hear his thoughts. As he comes into the “lean and slippered pantaloon” time of his life, as he might say—some of his last chapters— I feel really blessed that he’s willing to discuss it openly.

D: How do you open that discussion for the general public?

M: I think it takes courage and a conscious decision to ask a question of someone in a moment when you feel there’s an opportunity. Someone speaking about her or his health, some decline, or illness, grief, and you ask, “How would you like things to be?” And perhaps even being a bit persistent if you get an initial brush-off, which often happens, but trying again, and saying, “ Really, I would like to know.”

I also think reaching children is important. I think that in our death-denying culture, children are really shielded from all things involved with death. Things happen at the funeral parlor, no longer at home, and we try to protect children in all kinds of ways. But if you don’t allow children who want to be involved in a loved one’s illness or death, I think you’re doing them a disservice. You’re keeping them from something that is integral to life for all of us. The earlier you can start to have those experiences and wonder about them and ask the questions, the more skills you will have as you age to meet them openly.

D: Have you decided what you want for yourself at the end?

M: I have no idea. I do know that I would like to have the right and the option to choose. I understand that even just knowing that the option is available can bring a lot of comfort to people. I haven’t faced a terminal illness that might cause me great physical pain or suffering, or mental or spiritual suffering. There’s one area that gives me pause, which is when folks choose medical aid in dying because they’re used to being in control in their lives. They might not have physical or mental or spiritual suffering, but they want to have personal agency. I think they entirely have the right to do that. But I also believe we’re in a culture that distorts the degree to which we think we’re in control. So on a soul level, on a much deeper level, I wonder, Are we messing with something there? How is it that we’re making such a profound decision from a place of a distorted need for control? And then I think, Well, what do I know about their journey and what they need? Maybe this is the one time they’ve ever made a strong, solid decision for themselves, and who am I to say what it is they need to learn?

D: But isn’t pain, intractable pain and suffering, and the inability to care for oneself, a sufficient reason to respect someone’s decision in terms of his or her final say?

M: Absolutely. I think clinicians have more trouble when they can’t observe visible intractable pain, when they can’t see physical or emotional suffering. It’s harder for clinicians to get their heads and hearts around that. Why is someone making this choice? And so I do a lot of counseling with staff about that, exploring how to meet the needs of the person when we don’t see them suffering, at least not on the surface. And we have to remind ourselves, clinicians need to express those feelings and concerns, so that when they’re dealing with patients directly, they can be respectful and meet them on their own terms.

Complete Article ↪HERE↩!

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There’s No Right Way to Mourn

The ‘grief police’ wield lamentable shaming tactics.

By Sian Beilock

When Kobe Bryant died on Jan. 26, there was an outpouring of grief for the legendary N.B.A. champion. Sports fans placed bouquets of flowers at his high school and held a vigil outside the Staples Center. Shaquille O’Neal, his friend, rival and former Lakers teammate, cried on TV while giving an emotional tribute.

Much of this grieving also took place on social media. His widow, Vanessa Bryant, wrote a powerful tribute on Instagram that was “liked” by more than nine million people. So did Carmelo Anthony and Chris Paul. Grief is no longer private these days, which lets us mourn together. But doing so also allows people to publicly shame how others deal with loss.

“Cancel the games. Cancel the Grammys.,” one person wrote on Twitter. Another criticized those who brought up the rape allegation against Bryant in their commemorations: “Some people have no respect for the dead.” This is part of a broader phenomenon. These “grief police” enforce murky standards of who should be sad, when they’re allowed to be and to what degree. They insist that our grief must be overwhelming and ubiquitous, and for all parts of our lives to be put on hold. This isn’t just problematic in the moment; introducing guilt into the grieving process can negatively impact others’ ability to heal.

Something similar happened at Barnard College where, in December, we were forced to grieve in the media spotlight after one of the newest members of our community, the first-year student Tess Majors, was murdered. I have spent my career researching anxiety and worry, and I was struck by a commonality among people on campus: Amid their feelings of heartbreak, members of our community were worried about how others would perceive their specific form of grieving.

I wasn’t aware of students policing others’ grief, but the perception that this was happening still had an effect, especially given the media attention around the tragedy. One student told me that, in the midst of her deep sorrow, she also felt guilty about feeling eager to write her final papers and was worried she would be judged for not mourning in the “right” way. Another student mentioned that she didn’t know Tess Majors personally and was feeling all right, even looking forward to a long-planned family trip over break, but was going to keep this thought to herself.

I bet some of the N.B.A. players who were eager to play in the wake of Bryant’s death also had mixed feelings — because they are being judged. LeBron James was skewered online for not immediately posting about his friend and mentor: “Why are you not posting Kobe? I never liked LeBron because he is always FULL of himself,” one person wrote on social media.

Public grieving doesn’t happen in a single community where there are shared social norms for how to react, like sitting shiva or walking in a second line. If bereaved players are slow to comment publicly, should we call them out? Must everyone who has ever met Bryant say something in public? When people with vastly different lived experiences come together around a public death, there is no real shared understanding of what is appropriate; this is why the grief police wield such power in calling people out.

Unfortunately, introducing blame into the grieving process causes people to question whether they are dealing with loss the right way and to feel guilty about what they do, say and feel. Recent research has linked guilt in bereavement to a wide range of mental and physical difficulties, including depression. So how, in the age of communal and public mourning, do we grieve and not let the grief police undercut how we feel? How do we continue to perform at our best with heavy hearts?

Everyone responds to death differently, and it’s psychologically healthy to focus on parts of our identity that are not touched by tragedy. It is O.K. for a grieving athlete to play an important game; the same goes for a student who wants to take her finals in the wake of a campus tragedy. Research on resiliency shows quite clearly that people who express (and value) different aspects of who they are tend to be psychologically stronger. For example, their role as an athlete, student or parent provides another outlet to express themselves if they experience a setback or loss in one aspect of their life, or if one of the ways they identify themselves is called into doubt.

Embracing the fullness of our identities in no way represents a lack of respect or a blindness to the gravity of a tragedy. Quite the opposite: It is only through this process that we can effectively take care of one another, including those who have been most affected.

Despite my expertise in this subject, I have had to force myself over the last month to realize that, even in mourning, I have to juggle life as a college president, a researcher, a mother, an athlete and a friend — not only for my own health and mind-set, but also for the well-being of those around me. When the grief police arrive, we need to give ourselves license to express positive emotions and affirm other aspects of ourselves that we value outside of the tragedy. Doing so means we will feel more in control and cope better down the line.

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Anticipatory grief is real.

Here’s how to get help.

By Mary Chaput

I feel like I barely made it through the holidays in one piece. The family was all here; we celebrated with all of our usual traditions and yet I am so incredibly sad. Although my husband is still with us, he has dementia and I could often see confusion and anxiety on his face despite the love and support the family provided. I wish I could just be happy that I still have him next to me instead of feeling sad that things aren’t the way I always imagined they would be.

Grief is a universal response to loss; grief is a normal process. Caregivers often also experience ambiguous grief when, like your husband, the care recipient is physically present but psychologically or emotionally absent. The losses experienced in dementia are incremental and are not generally clearly defined making the mourning process rather complex. Handling these continuous losses over time can be emotionally exhausting.

Anticipatory grief when caring for someone with a terminal illness, such as dementia, is also not uncommon; we are may experience sorrow for the losses we anticipate in the future – plans to travel, plans to grow old together – as well as reconciling the fact that there will be a final physical loss. Caregivers may face fears of their own loss of independence and socialization as well as the fear of being alone. Anticipatory grief can be just as intense as the grief we feel when someone dies and, while not discussed as much as the grief felt after a death, it is a normal process for caregivers.

These types of grief are often difficult to acknowledge but they are a normal response to a caregiver’s situation. The grieving process is fluid, varying from person to person. There is no right way or wrong way to feel.

If anticipatory grief is affecting your day-to-day well-being, reach out to your support network or to a support group. Find a way to express your emotions such as through meditation, journaling or exercise. Make the most of the time you have with your husband and, most importantly, take care of your own emotional and physical health.

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Diagnosed With Dementia, She Documented Her Wishes.

They Said No.

Susan Saran was diagnosed with frontotemporal dementia, a progressive, fatal brain disease. After suffering two brain hemorrhages, Saran signed an advance directive for dementia, a controversial new document that instructs caregivers to withhold hand-feeding and fluids at the end of life. She wears a chain bearing instructions that she not be resuscitated.

By JoNel Aleccia

When she worked on the trading floor of the Chicago Board Options Exchange, long before cellphone calculators, Susan Saran could perform complex math problems in her head. Years later, as one of its top regulators, she was in charge of investigating insider trading deals.

Today, she struggles to remember multiplication tables.

Seven years ago, at age 57, Saran was diagnosed with frontotemporal dementia, a progressive, fatal brain disease. She had started forgetting things, losing focus at the job she’d held for three decades. Then tests revealed the grim diagnosis.

“It was absolutely devastating,” said Saran, 64. “It changed everything. My job ended. I was put out on disability. I was told to establish myself in a community before I was unable to care for myself.”

So Saran uprooted herself. She sold her home in 2015 and found what looked like an ideal place: Kendal at Ithaca, a bucolic retirement community in rural New York whose website promised “comprehensive health care for life.”

And now, she’s fighting with that community over her right to determine how she’ll die ― even though she has made her wishes known in writing. Such a fight could ensnare millions of Americans with dementia in coming years.

In 2018, after two brain hemorrhages, Saran conferred with a lawyer and signed an advance directive for dementia, a controversial new document created by the group End of Life Choices New York that instructs caregivers to withhold hand-feeding and fluids at the end of life to avoid the worst ravages of the disease.

“It’s not something that I am willing to endure,” she said. “I don’t want my life prolonged beyond the point where I’m participating in life.”

But when Saran submitted the document to Kendal at Ithaca, the New York continuing care retirement community where she has spent more than $500,000 to secure her future, officials there said they could not honor her wishes.

In a letter, lawyers told Saran that the center is required by state and federal law to offer regular daily meals, with feeding assistance if necessary.

There’s no provision, the letter said, for “decisions to refuse food and water.”

It’s a cruel quandary for Saran and other Americans who have turned to a crop of dementia directives created in recent years. Even when people document their choices ― while they still have the ability to do so ― there’s no guarantee those instructions will be honored, said Dr. Stanley Terman, a California psychiatrist who advises patients on end-of-life decisions.

“It is, in my opinion, a false sense of security,” Terman said.

That may be especially true for the 2.2 million people who live in long-term care settings in the United States. People with dementia are most likely to die in nursing facilities, according to new research from Duke University and the Veterans Affairs Boston Healthcare System.

“If you’ve got the resources, where you’ve got family and paid caregivers at home, you’re all set,” said Dr. Karl Steinberg, a California geriatrician and hospice physician who has written extensively about dementia directives. If you’re living in a facility, he added, “it’s not going to happen.”

One key question is whether patients with dementia ― or those who fear the disease ― can say in advance that they want oral food and fluids stopped at a certain point, a move that would hasten death through dehydration.

It’s a controversial form of what’s known as VSED ― voluntarily stopping eating and drinking ― a practice among some terminally ill patients who want to end their lives. In those cases, people who still have mental capacity can refuse food and water, resulting in death within about two weeks.

Many states prohibit the withdrawal of assisted feeding, calling it basic “comfort care” that must be offered. Only one state, Nevada, explicitly recognizes an advance directive that calls for stopping eating and drinking. And that’s via a little-known law that took effect in October.

Critics of such documents, however, say they could lead to forced starvation of incapacitated people. The directives may be biased, reflecting a society prejudiced against age, disability and cognitive change, said Dr. James Wright, medical director of three long-term care facilities in Richmond, Va.

He’s the lead author of a recent white paper advising facilities not to honor dementia directives. Based on his years of clinical experience, Wright said many people with dementia become content with their situation, even when they never thought they would be.

“To enforce an advance directive on someone who may have had a complete turnaround on what they think of a life worth living is unethical and immoral,” Wright said.

The dementia directives published in the past few years are aimed at filling what experts say has been a major gap in advance-care planning: the gradual loss of capacity to make decisions about one’s care.

One version, published in 2018 by Dr. Barak Gaster, a professor of medicine at the University of Washington, has been downloaded 130,000 times after it was mentioned in a New York Times story and continues to be retrieved about 500 times per week.

“This is an issue that people have really thought a lot about,” Gaster said. “They worry about it a lot. They’re so eager and excited to have a structured opportunity to make their wishes known.”

Traditional advance directives focus on rare conditions, such as a persistent vegetative state or permanent coma, Gaster said. “And yet the No. 1 reason a person would lose ability is dementia,” he added.

In addition to Gaster’s document, directives drafted in New York and Washington state have drawn hundreds of users. The aid-in-dying advocacy group Compassion & Choices released a dementia directive this month.

As the U.S. population ages, more people ― and their families ― are grappling with dementia. By 2050, nearly 14 million Americans aged 65 and older may be diagnosed with Alzheimer’s disease.

“We are right now experiencing the very first upswing of the giant wave of dementia that’s heading our way,” Gaster said.

Saran is on the crest of that wave. Divorced, with no close family, she turned to Kendal ― with its 236 independent units and 84-bed health center ― as her final home. During her four years there, she has noticed some decline in her mental clarity.

“Even some of the simplest mathematical problems, like even seven times seven, I can’t think of it now,” Saran said.

Still, she is able to manage her affairs. She cooks her own food and cares for her three cats ― Squeaky, Sweetie and Pirate, a one-eyed tabby. A longtime Buddhist, she often drives to a nearby monastery to practice her faith.

In late summer, Saran invited visitors to her small cottage at Kendal, where tapestries hang on the walls and bookshelves are filled with tomes on religion, death and dying.

Frontotemporal dementia affects about 60,000 people in the U.S., and patients often die within seven to 13 years, but Saran’s disease appears to be progressing more slowly than expected.

“I think I have great capacity,” said Saran, who wears her silver hair long and favors jeans, linen shirts and turquoise jewelry.

She chain-smokes, lighting up the Seneca cigarettes she buys for $3 a pack from a nearby Indian reservation. She thought about quitting but decided it wasn’t worth the effort and continues to indulge her habit. “If you had my diagnosis, wouldn’t you?” she said.

When Saran was hospitalized after her strokes, she suddenly understood what losing her abilities might mean.

“I realized, oh, my God, I might get stuck in a situation where I can’t take any independent action,” she recalled. “I better make sure I have all my paperwork in order.”

She was stunned to learn it might not matter, even after her local lawyer, Chuck Guttman, drafted health care proxy documents and a power of attorney.

“I thought this was it,” she said. “I thought I’d move here and everything was taken care of, everything was settled. And now it’s not.”

Laurie Mante, Kendal’s executive director, declined to comment on Saran’s situation, even when Saran authorized her to do so.

“We recognize the great complexity in balancing our residents’ wishes with what is required of us,” Mante wrote in an email. “We have a dedicated team who works to balance those interests, and, when appropriate, work with our residents and their families to seek alternative paths.”

Saran said no one from Kendal has reached out to discuss an “alternative path.”

Not all dementia directives include instructions about assisted feeding. Gaster said he and his colleagues had “heated conversations” before deciding to leave that issue off their popular document.

Instead, he said, his option helps more people by addressing general goals of care for each stage of the disease. The most important thing, he said, is for people to consider their choices and share their desires with their loved ones.

The debate, Gaster said, boils down to whether assisted feeding is “basic support” or “a medical intervention that can be declined in advance.”

“There’s still a very wide perspective of viewpoints on that,” he said.

Backed by statute and practice, facilities say they are bound to offer food to all residents willing to eat, and to assist with hand-feeding and fluids if a person needs help.

The controversy centers on the definition of those terms.

Wright says late-stage dementia patients who show any interest in food ― a flick of the eyes, grunting or gestures, opening the mouth ― should be fed until they refuse it. Steinberg and others contend the default should be “don’t feed unless they ask for it.”

It’s always going to be “somewhat of a guess,” Wright acknowledged, about whether hand-feeding someone is help ― or force.

“I’ve not seen any guidelines that can faithfully give good, unbiased guidance,” he said. “I feel that I personally can determine when food means something to my patients and when it doesn’t.”

The new crop of dementia directives was inspired, in part, by high-profile cases of dementia patients who were spoon-fed against their apparent wishes. In Oregon and  British Columbia, courts ruled that food and water were basic care that could not be withdrawn.

But so far, there’s been no court case that says a clear advance directive for VSED “may or must be honored,” said Thaddeus Mason Pope, a professor at the Mitchell Hamline School of Law who studies end-of-life decisions.

Pope said he has heard of many people who move out ― or their families move them out ― of long-term care facilities to avoid assisted feeding in the last stages of dementia.

Saran has considered that, too.

“I should probably just leave,” she said, although that would mean losing the nonrefundable investment she’s already made. “I think about that every day.”

But then what? Hospice might be a solution, but only if there’s room when she needs it, she said.

Saran said her situation should be viewed as a cautionary tale. She wishes she’d asked more questions, insisted on answers about exactly how she would die once her dementia progressed.

“I didn’t realize I was signing away my right to self-determination,” she said. “I am appalled that my future demented self takes precedence over my competent current self.”

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