With the loss of what the Queen called her husband’s “constant love and help,” attention has now turned to the Queen’s well-being. The death of a loved one is a blow at any time, but losing a spouse after many years of togetherness can be especially difficult.
Studies have shown that surviving spouses can suffer from sleep disruption, depressive episodes, anxiety, impaired immune function, and overall poorer physical health.
For those concerned about the Queen in her time of great personal loss, many may be wondering if there is medical evidence of grief impacting one’s health.
Broken heart syndrome is real
Known as stress-induced cardiomyopathy, “broken heart” syndrome is a documented medical condition.
Broken heart syndrome occurs when the heart is stunned by sudden, acute stress and its left ventricle weakens. Instead of contracting into its normal arrowlike shape, the left ventricle fails to function, creating a more rounded, potlike shape.
First described in 1990 in Japan, a broken heart looks so much like a Japanese octopus trap called a takotsubo that doctors began calling the condition Takotsubo cardiomyopathy.
“The heart actually changes shape in response to acute emotional disruption, such as after the breakup of a romantic relationship or the death of a loved one,” New York cardiologist and author Dr. Sandeep Jauhar told CNN in a prior interview.
In most cases, however, when the acute emotional stress dissipates, the heart recovers and goes back to its normal shape, Jauhar said.
“But I’ve had patients who have developed acute congestive heart failure, life-threatening arrhythmias, even death from this condition,” Jauhar said. “I think it’s the clearest example of how our emotional lives directly affect our hearts.”
The syndrome is most commonly experienced by women (90% of cases are in women), by people with a history of neurological problems, such as seizures, and by people with a history of mental health problems.
There is another medical reality that can occur when a long relationship ends, studies have shown.
“The increased likelihood for a recently widowed person to die — often called the “widowhood effect” — is one of the best documented examples of the effect of social relations on health,” wrote Dr. Nicholas Christakis, who runs the Human Nature Lab at Yale University and coauthor Felix Elwert, a professor of sociology at the University of Wisconsin, Madison, in a seminal 2008 study.
The risk of an elderly man or woman dying from any cause increases between 30% and 90% in the first three months after a spouse’s death, then drops to about 15% in the months that follow. The widowhood effect has been documented in all ages and races around the world.
Christakis and Elwert followed a representative sample of 373,189 older married couples in the United States from 1993 to 2002 and found that “widowhood does not raise the risk of all causes of death uniformly.”
When a partner died a sudden death, from say an accident or infection, the risk of death by the surviving spouse rose, the study found. The same was true for chronic diseases such as diabetes, chronic obstructive pulmonary disease (COPD) and lung or colon cancer that required careful patient management to treat or prevent.
However, if a spouse died from Alzheimer’s disease or Parkinson’s disease, there was no impact on the surviving partner’s health — possibly because the spouse had adequate time to prepare for the loss of their partner.
Regardless, “the death of a spouse, for whatever reason, is a significant threat to health and poses a substantial risk of death by whatever cause,” Christakis and Elwert wrote.
What can be done
Support is key to how well someone may cope with the death of a spouse. Many people find that grief counseling can help, according to the US National Institute on Aging.
In the United Kingdom, people can obtain psychological therapy without a referral from a general practitioner. The UK’s National Health Service suggests reaching out if you have had a low mood for more than two weeks or the methods you’re trying yourself are not helping.
Don’t put on a brave front: Surround yourself with people for whom you don’t have to pretend to be OK. “Grieving is an act of great courage and strength; it is not for the weak,” the AARP said.
Be kind to yourself: Try to get enough rest. “The more significant the loss, the more profound it is and the longer the recovery process,” the AARP said.
Expect a range of emotions, not just grief: According to the AARP, “your feelings may run the gamut from sad to mad to despair to occasional glimpses of happiness — and back again. If you are able to feel only sad, you will get stuck in perpetual despair.”
Don’t hide from people: “Grief is a lonely enough process without also isolating yourself,” the AARP said. Try your best to connect to friends and family and let them help. “When caregivers embrace the idea that seeing friends makes them hardier, then they no longer suffer guilt over having fun,” the association said.
The special project “What Loss Looks Like” presents personal artifacts belonging to those who have left us and explores what they mean to those left behind.
By Jaspal Riyait
As the art director of the Well desk, I’ve spent the last year looking for images to reflect the devastation of the pandemic and the grief it has wrought. As the crisis has stretched on, I’ve thought of all the people who have lost loved ones to Covid-19 — not to mention those who have lost loved ones, period — and how they were cut off from the usual ways of gathering and grieving. Watching the numbers rise every day, it was easy to lose sight of the people behind the statistics. I wanted to find a way to humanize the death toll and re-establish the visibility of those who had died.
To help our readers honor the lives of those lost during the pandemic, we decided to ask them to submit photographs of objects that remind them of their loved ones. The responses were overwhelming, capturing love, heartache and remembrance. We heard from children, spouses, siblings, grandchildren and friends — people who had lost loved ones not only to Covid-19 but from all manner of causes. What united them was their inability to mourn together, in person.
Dani Blum, Well’s senior news assistant, spent hours speaking with each individual by phone. “It’s the hardest reporting I’ve ever done, but I feel really honored to be able to tell these stories,” she said. “What struck me the most about listening to all of these stories was how much joy there was in remembering the people who died, even amid so much tragedy. Many of these conversations would start in tears and end with people laughing as they told me a joke the person they lost would tell, or their favorite happy memory with them.”
The photographs and personal stories, published digitally as an interactive feature, was designed by Umi Syam and titled “What Loss Looks Like.” Among the stories we uncovered: A ceremonial wedding lasso acts as a symbol of the unbreakable bond between a mother and father, both lost to Covid-19 and mourned by their children. A ceramic zebra figurine reminds one woman of her best friend, who died after they said a final goodbye. A gold bracelet that belonged to a father never leaves his daughter’s wrist because she is desperate for any connection to his memory.
For those who are left behind, these items are tangible daily reminders of those who have departed. These possessions hold a space and tell a story. Spend time with them and you begin to feel the weight of their importance, the impact and memory of what they represent.
Museums have long showcased artifacts as a connection to the past. So has The New York Times, which published a photo essay in 2015 of objects collected from the World Trade Center and surrounding area on 9/11. As we launched this project, we heard from several artists who, in their own work, explored the connection between objects and loss.
Shortly after Hurricane Sandy, Elisabeth Smolarz, an artist in Queens, began working on “The Encyclopedia of Things,” which examines loss and trauma through personal objects. Kija Lucas, a San Francisco-based artist, has been photographing artifacts for the past seven years, displaying her work in her project “The Museum of Sentimental Taxonomy.”
“Saved: Objects of the Dead” is a 12-year project by the artist Jody Servon and the poet Lorene Delany-Ullman, in which photographs of personal objects from deceased loved ones are paired with prose to explore the human experience of life, death and memory. And the authors Bill Shapiro and Naomi Wax spent years interviewing hundreds of people and asking them about the most meaningful single object in their lives, gathering their stories in the book “What We Keep.”
As the pandemic continues to grip the nation, the Well desk will continue to wrestle with the large-scale grief that it leaves in its wake. Other features on this topic include resources for those who are grieving, the grief that’s associated with smaller losses, and how grief affects physical and psychological health. As for “What Loss Looks Like,” we are keeping the callout open, inviting more readers to submit objects of importance, to expand and grow this virtual memorial and provide a communal grieving space.
That said, I will concede I lose that argument, and that moreover, my opinion has never even mattered. Die I will.
And I am not alone in this — you will die, too. After all, death, darn it, just happens. Globally, about 65 million people die each year, 180 per day, 120 each minute. 108 billion people have walked the planet, and then died. That’s a lotta dying, and while it’s incredibly difficult and tragic — this last year especially so — that doesn’t mean we shouldn’t talk about it. Avoidance is not a solution.
Indeed, I’d argue that death is a grand mystery — sacred and important — and this last physical act of our lives can either go pretty well, like a graceful well-rehearsed piano solo or free-throw, or it can go pretty darn badly. Some of how it plays out is beyond our control, but not all of it. Some of it we can prepare for — and if anything deserves our full attention, some preparation, or some renewed clarity, death might be it.
So, the deal is: Tax Day is April 15. But I’d argue the real task — and probably the less miserable one — is to get our stuff in order for Healthcare Decisions Day, which is April 16.
I know: no one wants to do it.
I know: you’re probably starting to X out this essay, or skim it, or scowl at it.
But I’m begging you — and so are your peeps — to take a few hours now in order to save them potentially hundreds of hours. Yes, hundreds of hours. And possibly a lifetime of regret or heartache.
Getting basic and important documents done, and your simple wishes on paper, can literally be your great parting gift.
We all knew someone who left behind a mess — and we all promised ourselves not to be that person. Which means we have to set aside some time and get this stuff done.
First, there’s the medical and legal stuff – Advance Directives and a will – and making sure they’re done, signed, and accessible (they’re really no help if no one can find them). Plus, heck, just leave a note with a trusted person about where some of your stuff is and what you basically want done with it. A great place to start is The Conversation Project.
But in my death-positive work (stemming from my book Making Friends with Death: A Guide to your Impending Last Breath), I advocate writing an ethical will, too — what you stood for, your best and worst times, any reckoning or forgiving or venting or whatever you need to do.
Basically, it’s a “Goodbye letter to life,” if you will. My guess is that doing so will bring you a lot of peace, and will provide peace to those around you, too. Ideally, you don’t want to write this when you’re under duress – write it when you’re feeling great, write it on a lovely spring day, write it on April 16!
Finally, our last task is to advocate simple and direct communication about end-of-life care with those that will likely be involved with it. What looks good to you? What do you want to avoid, if possible? Get clear on what “a good death” looks like for you. Me? I’ve come to believe that a good death is simply one that has been claimed, to the extent possible. For me, that will involve: My medical wishes and decisions being respected (such as my DNR wishes being followed); I would like to die outside, or with a view of nature; I’d like to be with my children and loved ones, if possible; I’d like to be as fully informed about what’s going on, to the extent possible; I want people to be honest with me and I want to be honest with them; and I wouldn’t mind the smell of vanilla or sage and a taste of good whiskey on my lips. Such wishes are written down in about 10 different places, all accessible; my children roll their eyes when I bring it up and say, “Yes, yes, we know, Mom.”
What does yours look like? And who have you told?
Completely bizarre to me is this: A recent Pew Research Center study on end-of life issues found that less than half of people over 75 had given much thought to the end of their lives, and incredibly, only 22% of them had written down or talked to someone about medical treatment at the end of their lives. However, the same Pew study finds a sharp increase in all adults putting something in writing (six in 10 of us) and thinking through our deaths, which indicates that percentage-wise, it’s the slightly younger folks who are preparing now. Attitudes are shifting, too: an unprecedented 66% of us now think there are instances in which doctors should allow a patient to die (instead of doing everything possible to save a patient’s life). A tipping point, it seems to me, has been reached—and we’d like a more mindful, respectful death. We are reclaiming the ancient art of dying.
But there is much to be done. Indeed, though our culture is death-avoidant and confused, I am heartened by the increasingly popular “Death Cafés” and new movements such as “Slow Medicine,” and I’m grateful for April 16, which is the day we should all admit that our life belongs to us, but it also belongs to everyone we interact with, and we owe them the gift of directing an honest gaze at our demise.
But best of all, spending some time now might leave us thinking of death as more of a friend rather than a spooky stranger. With our newfound peace, we can then spend our precious time really living.
In a field that is quickly growing but evolving due to the coronavirus pandemic, death doulas are providing comfort for the terminally ill and helping their family members grieve.
Similar to how a birth doula supports an expectant mother through the process of bringing a life into the world, an end-of-life doula – a trained, non-medical professional – guides a person through the final stages of life.
Mariah Riess, a certified end-of-life doula, often receives calls from new clients following terminal diagnoses.
Riess helps them navigate all aspects of death, from making legal, financial and funeral arrangements to deciding where and how they want to die.
“Death, in some ways, it’s the biggest event in our lives, and for many it’s the most disappointing to think about or have to experience,” Riess said from her Dover home. “There’s maybe a way to bring grace to this process and also information and understanding to this process of dying.”
Riess’s goal is to eliminate the stress and fear of one’s own mortality, providing comfort before and during their death and supporting their grieving loved ones after. Her work with each client can span days, months or years.
Riess believes the isolation many are experiencing during the pandemic has led clients to services like hers.
“I’ve seen quite an uptick in my practice, because I’m not sure there are places where people can talk about what’s going on with them when they’re facing the death of another or their own imminent demise, decline, diagnosis,” Riess said.
Terry and Melinda Sortwell began working with Riess last June. The Maine couple had been referred to Riess, who also provides nutrition and wellness services, as Terry struggled with digestive issues and gaining weight.
Terry, now 71, had been diagnosed with bile duct cancer in 2018 and had undergone extensive surgery and six months of chemotherapy before another cancer scare.
While further testing showed the cancer had not returned, his wife, Melinda, 66, experienced her own cancer scare. She, too, would receive good news, but considering their own mortality had been eye-opening.
“The fact is, we’re all going to die,” Terry said by Zoom. “We all think as human beings, ‘Oh, no. It’s not going to happen to me now. It’s not going to happen to me.’ Everything’s fine until it isn’t, and everything comes to a screeching stop. So you might as well plan for it.”
When the couple, married for 45 years this September, discovered Riess provided end-of-life services, they began working with her regularly, meeting virtually.
“It’s wonderful to think you can do it all yourself. But emotionally, there’s so much going on when you think you’re leaving your body, or you’re letting people down,” Melinda said. “The last thing you need to think about – or all the things you haven’t thought about – paperwork-wise and what are your desires and wants at the end of your life.”
Between Riess’s appointments, she asks her clients to complete assignments. For Terry, she instructed him to visit a hospice center so he can make his own plan for how he wants to spend his final days.
“[Riess’s] field and what she does, it takes all the worry away – a lot of the worry away,” Melinda said. “This is an important step and important support system for us and our family.”
Interest in end-of-life services has been increasing, even as doula work evolves due to the COVID-19 pandemic, according to Henry Fersko-Weiss, co-founder and executive director of the International End of Life Doula Association (INELDA), a non-profit that trains and certifies death doulas as private practitioners.
“I see people much more open to talking about death and dying,” Fersko-Weiss said by phone Wednesday. “The pandemic has made us all more conscious, aware and engaged with facing dying. That’s something that’s happening universally.”
Some death doulas have temporarily stopped providing services during the pandemic, while others, like Riess, have converted in-person meetings to online or telephone appointments.
While she already serves clients across the country remotely, Riess will soon resume appointments at her home with local clients, as she has now been fully vaccinated.
“Dying is a very intimate experience. So, I know it’s much richer and better if a doula can be physically present,” Fersko-Weiss said. “But it’s better to have a doula virtually than not to have a doula at all.”
While Terry undergoes scans and bloodwork every few months, he and his wife are stable and feeling well. Still, the couple feels their sessions with Riess are important, to prepare for their final days, whenever that may be.
“The point is to have these conversations when you’re feeling good,” Terry said, “so that you’re able to make decisions and talk to our children and think about things rather than try and solve these problems or make these decisions when you’re in a crisis mode.”
For Riess, her job is more of a calling – the most fulfilling role she could imagine.
“It’s such a privilege for me to be in the lives of the people that I’m in the lives of and to see the courage and the love,” Riess said. “And the opportunity for me to be involved with these families at the most personal, really profound time of life – I look forward to going to the end of my own life doing this.”
Renee (a pseudonym) closed her eyes, lay her head in her brother’s arms, and gently drew her last breath. Minutes before, she had chugged a bitter concoction of Seconal and juice, while the loved ones encircling her offered their final blessings and softly sang her out of this world.
This carefully choreographed scene was exactly the way Renee had imagined her death after months of careful planning. She had endured a grueling course of cancer treatments several years prior. When the cancer recurred and metastasized, she was quickly drawn to the possibility of a medically assisted death. As a resident of Vermont, she became one of the roughly 1 in 5 Americans legally permitted to end their lives when faced with a terminal illness.
As the pandemic has made avoiding the subject of death all but impossible, planning for death has taken on new urgency. Palliative care experts have urged people to document end-of-life wishes in advance directives, while end-of-life startups have tapped into the market potential of death. These developments align with what has long been a strong motivation for terminally ill people seeking MAID: to control and carefully craft the scene of death.
I am a medical anthropologist who has spent the past five years studying the implementation of Vermont’s 2013 Patient Choice and Control at End of Life Act. I interviewed over 140 patients, health care providers, caregivers, activists, and legislators to collect their stories and experiences. I also attended medical conferences and advocacy events where MAID was being discussed.
While I learned a lot about what drives people to MAID, I was particularly fascinated by what MAID does to death. The option transforms death from an object of dread to an anticipated occasion that may be painstakingly planned, staged, and produced. The theatrical imagery is intentional: An assisted death is an event that one scripts, a matter of careful timing, with a well-designed set and the right supporting cast. Through this process, death becomes not just something that happens but also something that is made.
The four friends I interviewed about Renee’s life and death all used similar words to describe her: independent, stubborn, strong-willed, even a bit of a curmudgeon. She loved being a crone, what some people define as a woman who has gone through menopause and stands in her power and wisdom. She never married nor had a significant romantic relationship, which was a source of sorrow for her. Still, her life was rich with friendships, meaningful work as an artist and teacher, and a devoted spiritual practice.
Renee was also dignified. A friend recounted how, during a spiritual retreat, a group was doing a silent meditation while walking outdoors. They stumbled upon Renee, up to her breasts in snow, waving calmly.
“She had fallen through a spot and was literally stuck in the snow up to her chest, but she was just like, ‘Um, excuse me,’” her friend recounted. “Where other people might be thrashing around or screaming for help, she was just like, ‘Hello.’ And that’s a really good way of describing her.”
As her cancer progressed, Renee was in constant pain. She rejected strong pain medications to avoid a foggy brain. Fluid built up in her chest, affecting her breathing. An intensely private and independent person, she did not want to depend on others for care at the end of life. And she did not want to be stuck in her body longer than it could be useful to her.
Renee loved her life, but she knew where her illness was headed. When she reached the limits of what she thought she could bear, MAID offered an enticing pathway out.
Historically, humans have largely been passive witnesses to their own deaths. Since the middle of the 20th century, however, technological developments in medicine have offered increasing possibilities for human control over one’s own death. These changes have led to heated debates about what counts as death and altered the kind of event we take death to be.
MAID renders not only the time of death but also the broader landscape of death open to human control. MAID allows terminally ill patients to choreograph their own deaths, deciding not only when but where and how and with whom. Part of the appeal is that one must go on living right up until the moment of death. It takes work to engage in all the planning; it keeps one vibrant and busy. There are people to call, papers to file, and scenes to set. Making death turns dying into an active extension of life.
Staging death in this way also allows the dying person to sidestep the messiness of death—the bodily fluids and decay—what the sociologist Julia Lawton has called the “dirtiness” of death. MAID makes it possible to attempt a calm, orderly, sanitized death. Some deliberately empty their bladder or bowels in advance, or plan to wear diapers. A “good death,” from this perspective, has not only an ethical but also an aesthetic quality.
Of course, this sort of staging is not without controversy. For some, it represents unwelcome interference with God’s plans. For people like Renee, however, it infuses one’s death with personal meaning and control.
Renee set the weekend for her death to avoid another hospitalization to drain fluid from her chest, a procedure she had undergone several times. Determined not to face hospitalization again, she bought a plane ticket for a spiritual mentor who lived in another state and invited a small group of family and friends to gather at her home.
It was an emotional but humor-filled weekend. “She didn’t want us to be all sad and heavy about it. She wanted to have a good time,” one friend recalled.
Medical aid-in-dying transforms death from an object of dread to an anticipated occasion that may be planned, staged, and produced.
Her friends were amused by the incongruously frenetic pace of her dying. All weekend, Renee shuffled around the house, shredding papers and making lists and phone calls. Her friends made up a playful song, “Follow the Little Blue Hose,” set to the tune of “Follow the Yellow Brick Road” from the film The Wizard of Oz, which they sang as they watched her scurry around trailed by an oxygen tank.
Renee was very organized about dying. She had thought about which people she wanted to inherit her dog, her journals, and her art. She ordered dry ice for her in-home wake and wrote a check to the crematorium and clipped it to the relevant paperwork. She even finished her taxes. She left detailed instructions for her postmortem care and funeral in a file to be opened after her death. A pine casket, constructed by a friend, had been sitting in her shed for months. The only matter left to attend to was her actual death.
Renee had never been certain she would take the lethal dose of Seconal. (In Oregon, only about 64 percent of people who obtain the medication go on to ingest it.) Initially, she hoped she might avoid it by willing herself to die. A natural death was more aligned with her worldview and spiritual practice. Her friends performed an “unbinding” ceremony in an effort to untether her soul from her body.
But she couldn’t make herself go. And if she didn’t die, her friends would need to go home, and she would be expected at the hospital on Tuesday, which had become, for her, a fate worse than death.
When Renee went to bed Saturday night, she had not yet made up her mind about what she would do. During the night, her intense coughing echoed throughout the house. Finally, she got up at 4 a.m., grabbed her laptop, and went back to her bedroom to pen love letters to friends. At 6 a.m., she emerged and announced she was ready to go.
While Renee said her goodbyes, four friends sat in a circle and prepared the medication with a makeshift ritual ceremony. Using beautiful pottery and sacred chalices, they emptied 100 capsules—the number of Seconal pills required to form a lethal dose—singing while they worked, and carefully mixed the powder with juice. They all piled on the couch for a final photo shoot. Renee laid across their laps in a favorite leopard print and purple velvet outfit.
Then, in her signature no-nonsense style, Renee got into bed and started directing everyone on where to stand. They surrounded her as she drank, chanting softly. Ten minutes later, she was dead.
Some health care providers I’ve talked to worry over the portrayal of deaths like Renee’s. There is a danger in suggesting that death should be clean and orderly, they rightfully suggest, when most deaths are far from it. Media accounts of glamorized assisted deaths may set up unrealistic expectations for what death should look like.
And some MAID deaths fail to follow the plan, as I learned from my research. There was the woman who took hours and hours to die, scaring her children when she repeatedly turned blue, then miraculously started breathing again. There was also the man who swallowed a dose of morphine that “should have killed a grizzly bear,” according to his physician, yet who nevertheless awoke the next morning.
In my experience, however, most of the bereaved remain deeply satisfied with their loved one’s medically assisted death. They tend to view supporting a loved one’s wishes for MAID as an ultimate form of care and being by their side as a consummate honor.
After she died, Renee’s friends quickly got to work implementing her plans. They called the hospice nurse to pronounce her dead. They notified people, following a list Renee had annotated with her characteristic wit: those to be nice to, those she really didn’t give a shit about but should probably know that she had died. Three women washed and anointed her body with meticulous care. The coffin was set up in the living room for a three-day in-home wake. Renee’s funeral was held in the same room, then a friend drove her body to the crematorium, followed by a caravan of other friends.
Hilarity frequently punctured the somber mood. “It was just like a comedy of errors,” a friend recalled. “The dry ice all melted, like a day or three days earlier than it should have, the casket almost didn’t fit in the car. … Right until the last minute, we were like, ‘Thanks, Renee,’ you know, like, ‘good planning on that one.’”
Despite these hiccups, the friends who participated in Renee’s death felt extraordinarily honored to be present. They saw her final act as brave and dignified, very much aligned with the way she lived her life. “It takes personality, at least that’s my impression,” one friend said. “It’s hugely courageous to go, ‘All right, in this minute, I’m gonna be here, and the next minute, I’m not. Here I go to make that happen. I’m gonna make that happen right now.’”
This comment captures an important feature of MAID: For observers, there is something startling about going from being fully alive one minute, and then, suddenly, willfully dead. Aside from suicide, this is not how we’re taught our own deaths happen.
But MAID is shifting the stakes of what we think death might be—transforming death into something we make.
Swans do it, chimps do it; even elephants and whales do it. They fall in love and then after their beloved dies, they grieve. Human beings differ only to the extent that we have inherited rituals that help us deal with a shattering emotion. But what happens when those rites must be relinquished or reinvented during a plague year?
This question started to haunt me when a member of my cancer support group, Barbara, dropped out of our Zoom meetings. Hospice nurses had been helping her at home and now she was actively dying from ovarian cancer. How could our group continue to connect with her? I left messages with my name and phone number on her answering machine. I sent an email with that information — perhaps her two adult sons would access her account — but received no response.
In the past, I had sat by the bedside of dying group members and later attended religious services or life celebrations. Now, I found myself grieving the sorry fact that I had not been able to say goodbye to Barbara. After news of her death reached us, I grieved that I did not even know how to reach her family to tell them what a compassionate companion she had been.
The experience made me appreciate if not the curative then at least the consoling value of vigils, wakes, burials, funerals and memorials, each in its own way an event staged to help us stay attached and then begin loosening our ties to the ever-receding dead person. While sitting by a deathbed holding a hand, while standing in a cemetery as a coffin or urn is lowered into the earth with a prayer or a poem, while hearing a memory recalled at a funeral, we treasure the person who had been and gain comfort from others who share our sorrow. Most of these ceremonies have been canceled during the past year.
A new book on grief by the psychologist Dorothy P. Holinger is useful in thinking about the impact of the termination of mourning rituals, although it was written before the pandemic. The book, “The Anatomy of Grief,” looks at how grief can wreck the brain, the heart and the emotions of the bereaved, a word that signifies those who feel robbed.
“Grief,” Dr. Holinger explains, “is the price we pay for love.” To be bereaved is to be robbed of the loved one and of the world and the self that had existed when they were alive.
Dr. Holinger’s book made me consider how normal or resilient grief differs from pandemic grief. The distinction reminded me of the bifurcation Sigmund Freud made between mourning — a healthy coming to terms with loss — and melancholia — a dysfunctional passage mired in misery. For in pestilent times, as Shakespeare put it, “grief lies all within.”
At any stage of history, to be sure, grief can destroy the world of survivors who cannot eat, sleep, think clearly, or go about their daily business. Grief can also obliterate identity. Who are we when we are no longer our parent’s child, our child’s parent, our sibling’s brother or sister, our partner’s partner, our friend’s friend? During a lockdown that isolates us by forbidding physical proximity, grief finds no outlet. We are deprived of the last moments in which we can see, touch, hear or speak to the beloved as well as subsequent days and months when we can cry, laugh, hug and reminisce with friends and family.
Dr. Holinger provides a taxonomy of different types of grief — some 17 varieties in all — many of which plunge the mourner into lingering preoccupation with the lost loved one. To use some of her terms about troubled forms of grieving, in a pandemic grief that cannot be made manifest may be “anticipatory” (death is expected), “disenfranchised” (mourners may not be acknowledged), “postponed” (sorrow remains unexpressed) and “forgotten” (loss goes unacknowledged).
When Judy Woodruff, the anchor of the PBS “NewsHour,” pauses each Friday night to memorialize five people killed by Covid-19, she acknowledges that she uses these individuals as representatives of a much larger population. In doing so, she encourages us to entertain the unimaginable fact that more than 500,000 Americans have died from the coronavirus, leaving innumerable widowed, orphaned and heartbroken survivors.
Those who mourn people who died during the pandemic but not from it are also affected. Like many survivors, the members of my cancer support group devised a way to communicate our grief over Barbara’s death. Each of us wrote a letter to her family that we collected and gave to Barbara’s oncologist, who forwarded the packet to her sons.
A few weeks later, I confronted a more fraught death. My former husband, a very dear friend, died unexpectedly, probably from a heart attack. It was a shock to his intimates but especially to our two daughters, neither of whom lives where he did. With travel an impossibility, how could we honor his memory? How could we find solace in each other? How could we bury his remains or sort through his things or close down his apartment?
These challenges have taught me how feeble and how effective electronic solutions can be. In an attempt to join together, the girls organized a series of Zoom shivas, the weeklong condolence calls in which many Jewish mourners engage. But our online meetings felt desiccated without an influx of visitors bringing food, drinks, flowers and a steady supply of embraces, kisses, jokes and tears. Yet a month or so later, the photographs, music and storytelling at a Zoom memorial arranged by the girls did console us as well as many of their father’s far-flung relatives and friends.
Still, there is nothing virtual about death. Perhaps families like ours can gather together on future anniversaries of the death, what in Yiddish is called the yahrzeit.
If, as after other national catastrophes, public memorials are erected to commemorate the suffering inflicted by the pandemic, they will need to honor the dead as well as all the mourners bereft of their bereavement.
These new films show the fear and loss that come with dementia
BY Fran McInerney
Two new films explore the fear of forgetting, loss of control, and other complexities that accompany a dementia diagnosis. The Father and Supernova , both released this month, grapple with the challenges confronting people living with dementia and those who love them.
Dementia is the seventh leading cause of death worldwide , and the second leading cause of death in Australia . The media has an important role in shaping public understanding of poorly understood conditions such as dementia , and it is pleasing to see it considered thoughtfully in both films.
We watched these films through our lenses as a clinician and a neuroscientist. The different causes and conditions that make up the umbrella term of dementia mean the experiences of people living with it — and their loved ones — can differ widely. These films illustrate this well.
Marching through the brain
Because different parts of the brain control different functions, the type of dementia is defined by its pathology, origin in the brain and progression .
In Supernova, directed by British filmmaker Harry Macqueen and starring Colin Firth and Stanley Tucci, we see a fairly accurate representation of frontotemporal dementia. Specifically, this is the type where certain language skills are impaired, known as semantic dementia.
The Father, meanwhile, directed by French playwright Florian Zeller and based on his play of the same name, centres on a protagonist, Anthony (played by Anthony Hopkins), with Alzheimer’s disease, the most common cause of dementia.
Owing to the neurodegenerative nature of dementia, people with this diagnosis experience a progressive deterioration of memory, thinking and behaviour, and gradually lose the ability to perform daily tasks and other physical functions, ultimately leading to death.
‘I don’t need her or anyone else. I can manage very well on my own.’
Both films accurately reflect many of the key early features of these forms of dementia and provide insight into the varied presentations and issues associated with the conditions.
Whereas The Father focuses more heavily on the experience of the individual living with dementia, Supernova gives more attention to shared grief and loss.
Caring and sharing
In Supernova, Tusker (Tucci) and Sam (Firth) take a roadtrip through stunning northern England. We soon learn the journey is as much an adventure to visit Sam’s family, as it is an exploration of their own mortality.
‘You’re still the same person, Tusker,’ says Sam. ‘No I’m not, I just look like him,’ his partner responds.
Unlike many other illnesses, those living with dementia frequently show no outward physical signs of their condition until late in its course, and Tusker appears in good physical health.
We witness Sam’s panic when Tusker and their dog Ruby go missing. Impulsivity and spatial disorientation are common phenomena experienced in dementia. Later, Sam masks his distress (as carers often do), attributing his tears to cutting an onion while preparing dinner.
‘Can you tell? That it’s gotten worse?’
Dementia is a condition that affects the person progressively and globally; we initially only see subtle symptoms of Tusker’s language loss, for example, when he can’t find the word ‘triangle’. Later we note his loss of instrumental function: needing two hands to guide a glass to his mouth, negotiating which arm goes into which sleeve while dressing. Sam tenderly maintains Tusker’s dignity while helping him dress.
When Sam finds Tusker’s notebook, the writing in it has deteriorated across the pages to an indecipherable scrawl. The last pages are blank.
Tusker declares he is dying — dementia is a terminal illness — but how long he has left is unknown. The median time from dementia diagnosis to death is five years. For a previously high-achieving person like Tusker, the loss of his cognitive ability feels more profound to the viewer.
While The Father may appear to be an imagined horror story, it masterfully presents the disorientating and frightening reality for a person living with dementia.
Anthony is a powerful and compelling character who draws us into his internal chaos – unaware that he is losing his sense of self in place and time. We learn he has been an engineer and father of two daughters, and lives in a comfortable dwelling in a leafy London suburb. He is by turns irascible and charming. Like Tusker, he appears physically fit, well-groomed and fed.
The early narrative tension revolves around Anthony refusing home help. He denies verbally abusing a recent carer and accuses her of stealing his watch; when this is shown to be false he shows no insight or remorse. Those living with dementia may strive to make sense of things they cannot remember by imaginatively filling in the gaps .
People with dementia are altered by the disease, but it’s important to remember that who they are as a person still endures. IMDB
Seeing the world through Anthony’s eyes is a masterful plot device as we the viewers are not quite sure of what is ‘real’. At some early points we wonder if Anthony is being abused or gaslighted as we are drawn into his perceptions; later we learn that the lens through which we see Anthony’s world is distorted, but a terrifying reality to him.
Like all of us, Anthony is capable of harshness and tenderness, of charm and cruelty. Those experiencing dementia often have diminished control over their emotions and behaviours and this can be exacerbated by stress.
A small weakness of the film is that we gain no real sense of Anthony’s earlier life. Anthony’s temper may indeed be an enduring part of his personality, though it’s more likely a consequence of his serious disease. This is an important point for carers to understand. When his son-in-law challenges him to stop ‘getting on everyone’s tits’ we have some sympathy for Anthony, who we begin to realise is behaving fearfully rather than deliberately.
Eventually Anthony is reduced to sobs: ‘Lost all my leaves. Branches. Wind. Rain’. As he moves from the moderate to advanced stage of dementia , the need for tender and humane care is clear.
A key theme with many films exploring dementia, is the end — not just the end of the story, but the end of life.
In The Father we are drawn into Anthony’s agonising reality, the quiet chaos of tomorrow. In Supernova, we understand that Tusker chooses to write the end of his own story. Individuals living with dementia may be altered by the disease process, but it’s important to remember that who they are as a person endures.
The nihilistic vision of these films, while powerful and thought-provoking, is not the only possible construction of dementia. Though we must come to terms with the fact that dementia is a terminal disease, the end point does not negate the imperative to respond to the needs of the person; indeed, it highlights the need for empathy.