— 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
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.”
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One of the most devastating elements of the coronavirus pandemic has been the inability to personally care for loved ones who have fallen ill.
Again and again, grieving relatives have testified to how much more devastating their loved one’s death was because they were unable to hold their family member’s hand – to provide a familiar and comforting presence in their final days and hours.
How does one come to terms with the overwhelming grief and guilt over the thought of a loved one dying alone?
I don’t have an answer to this question. But the work of a hospice doctor named Christopher Kerr – with whom I co-authored the book “Death Is But a Dream: Finding Hope and Meaning at Life’s End” – might offer some consolation.
At the start of his career, Dr. Kerr was tasked – like any and all physicians – with attending to the physical care of his patients. But he soon noticed a phenomenon that seasoned nurses were already accustomed to. As patients approached death, many had dreams and visions of deceased loved ones who came back to comfort them in their final days.
Doctors are typically trained to interpret these occurrences as drug-induced or delusional hallucinations that might warrant more medication or downright sedation.
But after seeing the peace and comfort these end-of-life experiences seemed to bring his patients, Dr. Kerr decided to pause and listen. One day, in 2005, a dying patient named Mary had one such vision: She began moving her arms as if rocking a baby, cooing at her child who had died in infancy decades prior.
To Dr. Kerr, this didn’t seem like cognitive decline. What if, he wondered, patients’ own perceptions at life’s end mattered to their well-being in ways that should not concern just nurses, chaplains and social workers?
What would medical care look like if all physicians stopped and listened, too?
The project begins
So at the sight of dying patients reaching and calling out to their loved ones – many of whom they had not seen, touched or heard for decades – he began collecting and recording testimonies given directly by those who were dying. Over the course of 10 years, he and his research team recorded the end-of-life experiences of 1,400 patients and families.
What he discovered astounded him. Over 80% of his patients – no matter what walk of life, background or age group they came from – had end-of-life experiences that seemed to entail more than just strange dreams. These were vivid, meaningful and transformative. And they always increased in frequency near death.
They included visions of long-lost mothers, fathers and relatives, as well as dead pets come back to comfort their former owners. They were about relationships resurrected, love revived and forgiveness achieved. They often brought reassurance and support, peace and acceptance.
Becoming a dream weaver
I first heard of Dr. Kerr’s research in a barn.
I was busy mucking my horse’s stall. The stables were on Dr. Kerr’s property, so we often discussed his work on the dreams and visions of his dying patients. He told me about his TEDx Talk on the topic, as well as the book project he was working on.
I couldn’t help but be moved by the work of this doctor and scientist. When he disclosed that he was not getting far with the writing, I offered to help. He hesitated at first. I was an English professor who was an expert in taking apart the stories others wrote, not in writing them myself. His agent was concerned that I wouldn’t be able to write in ways that were accessible to the public – something academics are not exactly known for. I persisted, and the rest is history.
It was this collaboration that turned me into a writer.
I was tasked with instilling more humanity into the remarkable medical intervention this scientific research represented, to put a human face on the statistical data that had already been published in medical journals.
The moving stories of Dr. Kerr’s encounters with his patients and their families confirmed how, in the words of the French Renaissance writer Michel de Montaigne, “he who should teach men to die would at the same time teach them to live.”
I learned about Robert, who was losing Barbara, his wife of 60 years, and was assailed by conflicting feelings of guilt, despair and faith. One day, he inexplicably saw her reaching for the baby son they had lost decades ago, in a brief span of lucid dreaming that echoed Mary’s experience years earlier. Robert was struck by his wife’s calm demeanor and blissful smile. It was a moment of pure wholeness, one that transformed their experience of the dying process. Barbara was living her passing as a time of love regained, and seeing her comforted brought Robert some peace in the midst of his irredeemable loss.
For the elderly couples Dr. Kerr cared for, being separated by death after decades of togetherness was simply unfathomable. Joan’s recurring dreams and visions helped mend the deep wound left by her husband’s passing months earlier. She would call out to him at night and point to his presence during the day, including in moments of full and articulate lucidity. For her daughter Lisa, these occurrences grounded her in the knowledge that her parents’ bond was unbreakable. Her mother’s pre-death dreams and visions assisted Lisa in her own journey toward acceptance – a key element of processing loss.
When children are dying, it is often their beloved, deceased pets that make appearances. Thirteen-year-old Jessica, dying of a malignant form of bone-based cancer, started having visions of her former dog, Shadow. His presence reassured her. “I will be fine,” she told Dr. Kerr on one of his last visits.
For Jessica’s mom, Kristen, these visions – and Jessica’s resulting tranquility – helped initiate the process she had been resisting: that of letting go.
Isolated but not alone
The health care system is difficult to change. Nevertheless, Dr. Kerr still hopes to help patients and their loved ones reclaim the dying process from a clinical approach to one that is appreciated as a rich and unique human experience.
Pre-death dreams and visions help fill the void that may otherwise be created by the doubt and fear that death evokes. They help the dying reunite with those they have loved and lost, those who secured them, affirmed them and brought them peace. They heal old wounds, restore dignity, and reclaim love. Knowing about this paradoxical reality helps the bereaved cope with grief as well.
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.
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.
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You call out to your best friend, but there’s no response. You shake them and gently nudge their shoulder before it dawns on you that they’re not sleeping. They’re lifeless. Dead. You reach for them again but the distance between you grows until they become one with the fog.
You wake up with a profound sense of loss yet strangely unburdened. You’ve had a common dream about someone dying — but in all likelihood, it has nothing to do with your friend or literal death.
Read on as we take a closer look at dreams about dying, what they mean, and if there’s reason for concern.
It’s not uncommon for terminally ill people to dream about loved ones who have died, according to a 2016 studyTrusted Source done in India. And a small 2014 surveyTrusted Source found that it’s not unusual to dream of someone you’ve recently lost.
Most people reported these dreams to be pleasant or both pleasant and disturbing. A few respondents said they were purely disturbing.
Such dreams may be part of the mourning process or a reflection of the fact that you miss someone who’s no longer in your life.
If you aren’t terminally ill or mourning a loved one, however, your dream may not really be about death at all. Instead, death may represent change or a period of transition.
When trying to interpret a dream, it helps to focus less on specific details and more on the way it made you feel. Consider how these feelings relate to what’s going on in your life.
For example, if you woke up feeling scared and anxious, you might consider whether you’re stressed out about changes in your life or fearing the unknown.
If you woke up feeling good, perhaps you’re accepting that something in your life is ending and you’re embracing a new beginning.
While it can be upsetting to dream about death, remember that dreams aren’t predictions and shouldn’t be taken at face value.
Things we dream about are often symbols for other things. So, dreaming about death could be part of the bereavement process or a representation of great change in your life.
Dreams about falling are fairly common and may represent:
- insecurity or lack of self-confidence
- feeling out of control
- letting go or setting yourself free
The symbolism of falling may go hand-in-hand with symbolism of dying — both can represent an ending, a beginning, or both.
Death can show up in many types of dreams. Whether it’s your own death or someone else’s, there’s a good chance your dream is really about unresolved issues.
Dreams about family members dying
A 2018 study on childhood nightmares found that common themes include:
- threats to family members
When you dream about a loved one dying, it might be due to changes — whether perceived or actual — to your relationships.
Dreams about you dying
Dreaming about yourself dying could mean that you’re in a major life transition.
It might be a symbolic goodbye to a relationship, a job, or a home. It could represent a part of you that is dying or something you’d like to escape.
It could also be that you’ve been putting your own needs on the back burner in favor of everyone else. Part of you feels neglected and is vying for attention.
Dreams about celebrities dying
When a celebrity dies in your dream, it’s probably not about the celebrity. The meaning may lie in who or what that particular celebrity represents to you.
Dreams about pets dying
You may dream about your pet dying if they’re old or sick and you’re genuinely concerned about them.
But your pet may symbolize something else, such as:
And dreaming of your pet dying might symbolize your fear of loss of these three qualities.
Dreams about friends dying
Dreaming about the death of a friend could signify concern for that person. It could also mean that your friendship is undergoing change or that you’d prefer to be free of this person.
Keep in mind the meaning behind the dream may not have anything to do with that friend at all. Instead, it might relate to what that friend represents in your life.
Dreams about deceased loved ones
The aforementioned small 2016 studyTrusted Source found that end-of-life dreams are common. Terminally ill people reported dreaming about loved ones who’ve already passed on.
These dreams tended to be nonthreatening, and the people in the dreams were seen as they were in their prime of health. This could be a coping mechanism.
“The goal ultimately may not be to avoid having such dreams, but rather approach them with curiosity to better understand them,” Dr. Alex Dimitriu, of Menlo Park Psychiatry & Sleep Medicine in California, told Healthline.
Recurring dreams about death can be the result of ongoing stress and unresolved issues. Try to identify the cause of stress in your waking life. Confronting the issue may help stop the dreams.
You can also ease into a more peaceful sleep by scheduling wind-down time before you go to bed. Make sure your bedroom is free of glowing electronics and other sources of light.
If you wake up in the night, use deep breathing or other relaxation exercises to get back to sleep. If that doesn’t work, get up and do something relaxing until you’re sleepy again.
If you’re having a hard time dealing with recurring dreams or ongoing stress, talk with a doctor or mental health professional. A qualified therapist can help you work through anxiety dreams.
Dimitriu, who’s double board certified in psychiatry and sleep medicine, says dream content can be:
- leftover remnants of the day’s thoughts and events
- an ongoing subconscious theme or feeling
- just random
“In my work, after thoroughly exploring conscious and subconscious explanations of dream content, sometimes we are left with no clear answer,” Dimitriu said.
He noted the importance of letting the person experiencing the dream draw conclusions, rather than plant ideas in their mind. It’s a process that can take time.
“In the case of dreams with intense content, such as dying, it is worth noting there is a lot of emotional energy to such a dream,” Dimitriu said.
“Lastly, sometimes, a cigar is just a cigar, and some dreams are truly random,” he added.
Dreams of someone dying can be unsettling, but they shouldn’t be taken literally. Death in a dream may symbolize the end of something and the beginning of something new.
Dreams provoke emotions — and those emotions can help you connect a dream to events in your life. But dreams can’t always be deciphered.
If you’re troubled by frequent stress-related dreams, it may help to talk things out with a qualified therapist.
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