Month: April 2021

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Your Guide To Coping With The Loss Of A Loved One

First and foremost: It’s okay not to be okay.

By Perri O. Blumberg

Along with what you’re going through individually, the world is going through collective grief: Amid the coronavirus pandemic, economic insecurity, and racial and political unrest, so many people are struggling to find hope. It’s hard to fathom the 562,000 lives (and counting) that we’ve lost in America alone from the pandemic. Hundreds of thousands of people are dealing with the loss of a loved one due to the virus.

On top of that, family members and loved ones are grappling with added layers of hardship and isolation the pandemic has created in the wake of a loved one’s passing, even if it’s not a COVID-19-related death. “Periods of grief following loss are notoriously isolating and difficult to navigate; grieving during a pandemic where many are socially distanced and unable to participate in traditional rituals of grieving, such as funerals and memorials, can make the process more complex,” says Courtney Bolton, PhD, a psychologist in Nashville, Tennessee.

And for the BIPOC community, it’s a particularly difficult time. “BIPOC communities have been disproportionately impacted by COVID deaths, and this reality is rooted in a long history of racial disparities within the healthcare system in the US,” says Pria Alpern, PhD, a psychologist in New York City who specializes in trauma and loss. Those inequities exist in mental healthcare too, which leaves BIPOC people in distress, less likely to gain access to the mental health services they need to process their grief, Alpern adds.

While navigating the death of a loved one is never easy, there are coping strategies out there that can help you through. Below, explore experts’ advice and steps you can take in dealing with loss.

How does loss affect you mentally and physically?

Can’t lie to you: It’s grueling, life-changing, and awful. “Losing a loved one triggers a grief response, which is a normal psychobiological response to loss. When someone is grieving, they may experience a combination of yearning, intense sadness, along with thoughts, memories, and images of the person who died,” shares Alpern.

Of course, grief is entirely individual, and just like no one reacts the same way emotionally, grief will physically manifest differently for everyone. But Alpern notes that common physiological symptoms of grief may include difficulty sleeping, fatigue, nausea, headaches, and decreased appetite.

What do the “stages of grief” mean and are they true for everyone?

You may have heard of the five stages of grief or the Kübler-Ross model, named after the Swiss American psychiatrist who formulated the theory. These stages consist of denial, anger, bargaining, depression, and acceptance. Some psychologists and researchers also go by a seven-stage model, which also considers shock and guilt, and pain as part of the grieving process. If you’ve lost a loved one and don’t feel like you’ve hit all these stages, does that mean there’s something wrong with you? Not at all.

Again, grief looks different on everyone, and many experts actually steer people away from reading into this definition of grief too heavily. “It’s important that we don’t define the grieving process by these stages, but rather acknowledge that grief varies individual to individual,” says Helen Rogers Pridgen, MSW, LMSW, vice president of programs at the American Foundation for Suicide Prevention. “Grief can be messy. It can be cyclical and linger around important life events, words not said, and memories of the one we lost. We must allow ourselves to feel whatever we feel.”

These stages of grief are often not linear, Bolton adds. You might experience denial and anger even long after you’ve reached a place of acceptance, or you may skip over certain stages altogether.

What are healthy ways to cope with grief?

Know that it’s okay not to be okay. If you are experiencing grief or loss, Dominique Pritchett, PsyD, LCSW, a therapist in Kenosha, Wisconsin, emphasizes that now is not the time to pretend that everything’s fine. “It’s okay not to have all the answers. And it’s okay to ask for help.”

Feel your feelings. We know, it sounds like your friendly meditation app coach, but it’s true. Sometimes, simply telling yourself “I feel sad,” acknowledging it, sitting with it, and observing your feelings and bodily sensations as they arise can help make you feel better.

In certain marginalized communities, being in touch with your emotions can prove especially difficult. “It’s important to keep in mind that based on the role you’re in, you may feel obligated to suppress these feelings because of stereotypes or un-empathetic environments,” says Pritchett. “For example, Black women are typically criticized for appearing angry and aggressive, whereas their white counterparts may be given more empathy and compassion.” Those feelings of anger and frustration can build up over time if they go unexpressed, she adds.

Focus on having a routine and making plans. “While initially, you may not want to do anything, after a couple of weeks of mourning, getting back into a daily routine helps reset our habits and helps our minds move forward,” says Bolton. Routines and goals can be useful when you’re mourning, to reintegrate back into your community and remind you of the meaning in your life, she says.

Don’t stop pursuing your hobbies. Bolton suggests filling your days with small, fleeting pleasures. That could be a hot bath, dinner with a friend, or something as simple as a good piece of chocolate. And whatever you enjoy doing on a regular basis, keep doing it. “Passions, or our hobbies, give us purpose and more fulfilling enjoyment. Both of these are excellent tools to combat the stressful feelings that may arise from loss,” Bolton says.

Honor your loved one’s life. Right now, this can feel challenging with the pandemic limiting in-person gatherings. But there’s still so much you can do. “It’s critical for many people to have a way to say goodbye or commemorate the passing of a loved one,” says Bolton. And currently, people might have to mourn in different ways, but “recalling positive memories and having the opportunity to share those with others helps us reimagine part of the mourning process that we enact in person at funerals,” adds Bolton.

She recommends creating some kind of keepsake about a loved one. That could mean putting together an album, a slideshow, or sharing pictures on a virtual site.

Trust in the passage of time. “Be patient with yourself and know that the process takes time, but the immediate pains will transform,” offers Bolton. “They may catch you by surprise down the road, and that’s okay. Be gentle and take care of yourself.” Time doesn’t heal all, but it can get you to a place where you may be able to look back on memories more fondly rather than being inundated with a surge of pain.

What can you say to someone who is experiencing the loss of a loved one?

It’s never easy to know how to comfort those who are grieving, whether it’s a relative, friend, or co-worker. Above all, sometimes just knowing you’re there for them can make a difference. “It’s important to validate, listen, and ask questions,” advises Alpern, cautioning people to avoid platitudes at all costs. Instead of saying things like “So sorry for your loss” or “That sucks,” try “I’m upset that this happened to you. What can I do to help?” or “It’s not fair that they’re gone. I don’t have words, but I’m here and listening,” she suggests. Or, a simple “How are you doing today?” a few weeks and months after a loved one’s death can really touch someone, too.

Alpern also recommends asking questions about the life and favorite memories of the person who died to create space for the grieving person to talk about the person they lost. It can feel uncomfortable but it supports the person grieving to create that space. “This is an important part of the grieving process. Be prepared to witness searing emotional pain and to sit with it,” says Alpern.

Even years after someone’s passing, on especially tough days, reaching out goes a long way. “Make note [to let someone know you’re thinking of them on] anniversaries of the passing, birthdays, or holidays, as these are often the most difficult times for individuals who are grieving,” Pritchett says.

Know that grief doesn’t just go away.

The experience of losing a loved one endures for a lifetime. Certain dates and even times of year will be hard annually, and even certain locations can be triggering. “The biggest misconception in our society is that grief goes away. Grief doesn’t go away, but it changes,” comments Alpern. “Over time, acute grief transforms and people integrate their grief in a way that allows them to continue living a fulfilling life.”

If you’re feeling consumed by grief and don’t feel you can continue with the routines of daily life, professional support, and in some cases, medication, can be key. “Seek out the support of a professional if you are struggling with your mental health. It can be comforting to share what you are experiencing with a trained professional,” says Rogers Pridgen.

In serious situations, you can also reach out to The Crisis Text Line by texting TALK to 741741 or National Suicide Prevention Lifeline at 1-800-273-TALK, Rodgers Pridgen notes. There are also many grief support groups, so you may want to ask a friend for a local recommendation or consider a virtual bereavement group therapy platform, like Grouport and the Association for Mental Health and Wellness’ COVID-19 Bereavement Support Groups. The bottom line is that you’re not alone, and there are so many people grieving along with you—and resources out there to help you through it.

Complete Article ↪HERE↩!

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‘Death Is But a Dream’

— Partnering to tell stories about the end of life

UB professor Carine Mardorossian has worked with hospice doctor Christopher Kerr on projects that explore end-of-life experiences from the perspective of both patients and caregivers​

By Robert Salisbury

On April 15, the WORLD Channel, carried by public television stations across the U.S., will air “Death Is But A Dream,” a documentary based on a book co-authored by local hospice doctor Christopher Kerr and University at Buffalo Professor Carine Mardorossian.

The book, “Death Is But a Dream: Finding Hope and Meaning at Life’s End,” is the brainchild of Kerr, who over the course of his career noticed a pattern in patients who were near life’s end. He observed that in end-of-life stages, many people began to have dreams and visions of deceased loved ones visiting them at bedside. The dreams and visions often became more frequent as death drew near.

After researching and collecting data for over a decade, Kerr wanted to write a book which archived and told the experiences his patients were having.

The lengthy process of getting the book to where it is now, being published in 10 different languages and sold in 10 different countries, was rough at first. The timeline of how Kerr and Mardorossian came together in writing the book was “quite interesting,” says Kerr, MD, PhD, chief medical officer and CEO for Hospice & Palliative Care Buffalo.

When Kerr and his literary agent began the process, they originally sought out a different author to assist in putting Kerr’s research into meaningful words. The partnership quickly collapsed because Kerr believed that to write about subject, you would have to witness the patients’ experiences in person, which at that time, the prospective writer was unable to do.

Mardorossian, on the other hand, had been friends with Kerr for over a decade as she stabled her horse at Kerr’s barn. In passing, Kerr explained to her that he had given up on the book because finding a writer who saw eye-to-eye with him was hard to accomplish.

Mardorossian, PhD, a professor of English and of Global Gender and Sexuality Studies in the UB College of Arts and Sciences, offered her services. But as an academic writer, her style of writing was not what Kerr was looking for — initially.

“I continually said to Kerr, ‘Let me write it,’” says Mardorossian. “I’m not that type of person, I’m really not. I honestly felt like I was having an out-of-body experience, as I caught myself insisting: I had never written a book for the mainstream, yet I was so determined to write this one.”

Kerr ultimately decided Mardorossian was the right fit, and he again pursued the book. The process of writing soon began and took the duo a year and a half to complete. Kerr says Mardorossian “helped me find a much deeper meaning.”

“I talked to Christopher every single day, and we met up to five times a week, and we would work,” says Mardorossian. “It was a constant back and forth.”

Kerr added, “We took over coffee shops that they should have expelled us from. We could have opened and closed some of them.”

The partnership flourished. The book got picked up by Penguin Random House after what Mardorossian said was “a longer than usual bidding war” between seven companies.

Looking back, Kerr said that there was never an argument or tension throughout the whole process, as their egos were left behind. Kerr admires Mardorossian’s work ethic and determination, and calls the experience of working with her “the most enjoyable process.”

Mardorossian discusses the importance of Kerr’s work in, “As death approaches, our dreams offer comfort, reconciliation,” an article published in The Conversation.

“As hospitals and nursing homes continue to remain closed to visitors because of the coronavirus pandemic, it may help to know that the dying rarely speak of being alone. They speak of being loved and put back together,” Mardorossian writes. “There is no substitute for being able to hold our loved ones in their last moments, but there may be solace in knowing that they were being held.”

Mardorossian and Kerr are now writing another book which will be a “natural extension” from their first one, says Mardorossian. The new project will be from the caregiver’s perspective.

Kerr and Mardorossian want to shed light on these caregivers’ experiences because they believe the grieving process is an important part of someone’s end-of-life experience.

“Family members have to become nurses whether they know anything about nursing or not,” says Mardorossian. “The testimonies Kerr has collected from these caregivers say how it’s the hardest thing they’ve ever done, but also the best thing as well.”

Complete Article ↪HERE↩!

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National Healthcare Decisions Day

The COVID-19 crisis has heightened the awareness of mortality for all of us, not just the elderly or people with underlying conditions. April 16 is National Healthcare Decisions Day, a day created to inspire, educate and empower the public and providers about the importance of advance care planning. It is a reminder to make or update our healthcare wishes, our Advance Care Plans, for the end of life.

Advance Care Planning is a process of reflection, documentation and deep discussion of treatment preferences in the event that you are unable to speak for yourself. This planning involves the completion of your advance directives, most commonly a living will and the appointment of a Power of Attorney to act as your health-care decision-maker. This will help ensure that providers honor your wishes for end-of-life care if you cannot speak for yourself.

Compassion & Choices is a nonprofit organization, dedicated to the expansion of end-of-life planning and options. Free online resources, including the End of Life Decision Guide and COVID-19 Toolkit, available in English and Spanish, and the Dementia Directive, are available at www.compassionandchoices.org. These simple tools can help people open up these difficult yet important conversations about their end-of-life wishes with family, friends and health-care providers.

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Losing a long-term spouse can be deadly, studies show

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.

By Sandee LaMotte

The world has joined Queen Elizabeth II in sorrow over the loss Friday of her husband of seven decades, Prince Phillip, the Duke of Edinburgh, just two months shy of his 100th birthday.

The duo was a loving and close-knit couple. The Queen told guests at a luncheon on their 50th wedding anniversary that Phillip had “quite simply, been my strength and stay all these years.”

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.

‘Widowhood effect’

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.

The AARP (formerly known as the American Association of Retired Persons) also has these suggestions for survivors.

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.

Complete Article ↪HERE↩!

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A Virtual Memorial for Those We’ve Lost

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.

Readers submitted photos of items that reminded them of loved ones who died in the past year.

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.

Complete Article ↪HERE↩!

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You’re going to die.

So now what are you going to do about it?

By Laura Pritchett

My position on death? I’m against it.

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.

Complete Article ↪HERE↩!

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End-of-life doulas prepare people for death in evolving role due to pandemic

By Christine McCarthy

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.”

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