The bereaved experience: Kerr excerpt #21

Dr. Christopher Kerr writes of dying patients having dreams or visions of renewing friendships with deceased friends and relatives:

The human grief experience is multidimensional, flexible, and personal. Bereaved family members and caregivers learn to adjust to a world without the deceased in myriad ways. What remains a constant, however, is 1/ the higher level of acceptance achieved by the dying and the bereaved alike when they get to witness the life-affirming, material, and transformative effects of end-of-life experiences 2/ the triggering of their own richer emotional and spiritual inner experiences. In our studies, the bereaved describe deriving peace and reassurance from the knowledge that their family member felt at ease and loved in their last moments. For example, the elderly sister of one of our patients shared that “when he told me that he saw his favorite sister (deceased) hold out her hands to him, it made me feel comforted because I knew it comforted him.” Caregivers repeatedly and explicitly use words that denote contentment rather than mourning: “He did find comfort talking to and seeing people who passed before him. He was not afraid or scared – he had told me.”

Many bereaved family members make sense of their dying relative’s end-of-life dreams and visions by drawing on their belief in the afterlife, God, angels, or heaven. That is what the rather agnostic Michele did after her daughter Ginny’s last conversation with God. But how each family caregiver chooses to make sense of their loved one’s end-of-life dreams and visions matters little. What is remarkable is how the meaning making sometimes develops independently of one’s interpretive framework, since Michele was originally agnostic and was swayed by her daughter’s ELDVs. These experiences help the dying and their loved ones alike work through the pain of loss by creating continuity and presence across time and death.

The therapeutic quality of end-of-life experiences extends to the bereaved in ways that can never be fully accounted for if we merely approach them as representations or memories. It embodies, for caregivers as much as for the dying, the possibility of being reunited, and it allows them to adjust to life without their loved one while maintaining a continuing bond. The desire and need for connectivity remain a constant across dying and grieving, death and bereavement.

Michele and Kristin both responded to their child’s death with the same paradoxical disregard for the separation death supposedly entails. They both still talk about and to their respective daughters on a daily basis. They dream about them. They both continue decorating their homes for the holidays for their little girls’ sake. They do it because “Ginny expects it” and “Jess would be upset with me if I ever skipped a year”.

Like Michele, it is in her daughter’s last end-of-life experience that Kristin finds the comfort she needs. In particular, Jess’s vision of her mother’s deceased friend Mary, whom she identified as “an angel”, is what provides Kristin with the reassurance that her little girl’s transition transcended the emotional and physical toll of death.

Michele worked through the pain of grief in ways that echo Kristin’s emotional trajectory. She too was awed and comforted by her daughter’s rich inner world and by the extraordinarily soothing quality of her end-of-life experiences. “She is always teaching me something”, Michele said two days before Ginny’s passing when her daughter was no longer responsive. This too was an extension of the remarkable effects of Ginny’s end-of-life experiences. Michele was left to question her own belief system. “Who knows?” she concluded, throwing up her hands in surrender, “Maybe there is a castle. I no longer know what not to believe.”

Like Kristin, Michele is now moved by mementos, pictures, and toy animals that recall her daughter’s presence. A rainbow appears and makes her smile. Heart shapes in clouds, rocks, and water drops are evidence of Ginny’s presence. She often takes refuge in Ginny’s room which she has left untouched. Bereavement has become a steady and gentle companion, a process and extension of the continuity that Ginny’s end-of-life experiences represented.

In the midst of immense tragedy, Michele has found solace and meaning in the same love and evidence of consciousness that permeated her daughter’s end-of-life experiences and whose cascading influence will sustain her until the day, she says, she too finds her way to Ginny’s “castle.”

As our study on the dreams of the bereaved suggests, patients’ end-of-life experiences seem to find a reflective counterpart in their loved ones’ dreams. Our quantitative study conducted at Hospice shows that many recently bereaved individuals experience vivid and deeply meaningful dreams themselves that feature the presence of the deceased. Prevalent dream themes included  pleasant past experiences, the deceased free of illness or at the time of death, in the afterlife appearing comfortable and at peace, and the deceased communicating a message. These themes overlap significantly with previous models of bereavement dream content. As with ELDVs, the specific effects of these dreams on bereavement processes include increased acceptance of the loved one’s death, comfort, spirituality, sadness, and quality of life, among others. These results support the theory that dreams of the deceased are highly prevalent among and often deeply meaningful for the bereaved who have them. Again, as with ELDVs, a positive growth or transformation in the person have them hinges on the continued presence of predeceased loved ones.

While this study does not assess whether or how the dreams of the bereaved are related to or different from ELDVs, the coincidence in content and effect is remarkable and noteworthy. For example, one participant wrote ‘‘[the dream] put my mind at peace about my brother’s death. I miss him very much, but I know he is in God’s hands and happy.’’ Others described how their dreams helped them to retain a connection with the deceased: ‘‘I feel closer to mom than at the time of her death. At the time I felt cut off. Now feel as if I was reconnected in at least a small way.’’ Some explained how their dreams intensified their feelings of grief (‘‘My sister and I cared for our mother around the clock. The dreams just make me sadder and I miss her when I wake up’’) or support (“My mother speaks to me while I dream. She tells me things about situations in my life and how to handle them. I get to hold my mother in my dreams and get to feel her warmth and love’’). Another participant had a dream of her [deceased] mother walking on the beach and holding the hand of a small boy named Eric. Her parents had previously lost a baby and named him Eric “who had died before Jane was born. Eric was to be our last of three children, but when he died, we had Jane.’’

Like ELDVs, the dreams of the bereaved bring back the departed in moments of transcendence where the consciousness of the recently departed is summoned to bring peace, sometimes resolution, and always love. 

Christopher Kerr, “Experiences of the Dying: Evidence of Survival of Human Consciousness,” an essay written for the 2021 Bigelow Institute for Consciousness Studies in response to the question: “What is the best evidence for survival of consciousness after bodily death?” Dr. Kerr, MD, PhD, is the Chief Medical Officer and Chief Executive Officer for Hospice & Palliative Care Buffalo. The full text with notes is available at https://bigelowinstitute.org/contest_winners3.php.

Autistic man's ELDVs: Kerr excerpt #20

Dr. Christopher Kerr writes of dying patients having dreams or visions of renewing friendships with deceased friends and relatives:

For patients suffering from Alzheimer’s and other dementias, the line between the ELDVs in sleep versus wakefulness is even more blurred than the reality they cannot share. And because people with dementia exist within an unshared world, their dream experiences ultimately remain their secret. Yet these patients also frequently undergo inner changes as part of the dying process. It may be that they heal old wounds, reveal what’s lost or reclaim distant love. We may not be able to collect evidence to prove it, at any rate not of the kind that would withstand scientific scrutiny, but I have seen the process unravel again and again. I have witnessed patients with severe cognitive loss paradoxically experience a vibrant and rejuvenating end of life. Again, we see that regardless of age or cognitive status, one’s sense of self and one’s existence expand as the body and even the brain, fails.

Physicians such as Oliver Sacks have noted that those with dementia have an emotional intelligence that can be unlocked with the right key, such as music for instance. This underscores the error commonly made in evaluating patients and consciousness based on a capacity to reason rather than feel. Their minds may be lost to us, but they still resonate within themselves. Nor can they be separated from their heart and its capacity for love.

Autism too is one of the conditions that often lead to misconceptions about how affected people process the larger meanings of death and dying. Assumptions are made about how they may or may not respond to a terminal diagnosis and what information should be shared. I don’t presume to have answers to these questions, but I have witnessed in such patients a remarkable resilience; an ability to cultivate peace as well as find meaning within their illness.

End-of-life experiences in particular have the potential to help the dying reach emotions that may not otherwise be accessible. This was the case for a patient named Andre, a man with autism, who provided yet another powerful reminder that conclusions and conjectures surrounding end of life can only be accurate if they draw on patient testimony.

Andre was a high-functioning autistic man who had worked as a bag boy at a local grocery store for most of his life. After his parents died, he was cared for by his cousin Lisa’s parents, and years later, when she became a mother of three, he was integrated into her family. Andre would live with Lisa’s family for the next thirteen years until his death at 75, and his purity of heart and joyfulness grounded his strong and easy identification with their children. Lisa’s son Hazen was 3 years old when Andre moved in, and the two connected instantly. They became inseparable, the best of friends, playing nerf guns around the house, communicating with walkie-talkies from different rooms, dressing up for Halloween, carving pumpkins, and hiding under piles of leaves in the yard. Andre loved family trips and Easter egg hunts. His family described him as “childlike’ but also respected his strong sense of independence. He could put together breakfast, make his own lunch for work, buy things in the store with little to no help.

In May 2017, Andre, then 74, was diagnosed with congestive heart failure and bladder cancer. The doctors estimated that it would be his heart not the cancer that would eventually cause his death. None of this was shared with Andre, who went on to live happily and unencumbered until his stroke on December 1st, 2017. Lisa and her husband Merle focused on helping Andre each day to the fullest. At this time, he was using a walker, and had a catheter bag 24/7, but he always smiled and met each day with a sense of wonder. He lived without a full awareness of his terminality. This is why it was so moving to Lisa when a month before he died, he started seeing what she later identified as deceased relatives. It was always during the daytime hours, and she could tell when it occurred because he would stare at the window with big, open eyes. In these moments, Merle noted that Andre seemed to “perk up” with an “excitable curiosity” that he immediately wanted to share.

The first time, it was a man with a hat. Andre didn’t recognize who that was, but it was a friendly presence who waived at him. The next time, it was a man and woman. Lisa would go through old photos with Andre, and he thought the woman he had seen looked vaguely familiar... maybe like a grandmother. His description, however, fit those of her long-lost relatives to a T. The "visits" happened almost daily. He once saw another man taking pictures, which also happened to be his favorite hobby. On another occasion, it was Lisa’s deceased mom who was in the room and whom he pointed to while talking to his second cousin. She was sitting on his suitcase, Andre exclaimed with a laugh. Like over two thirds of our patients, his ELDVs included themes of “preparing to go”, either through travel or packing.

To Lisa, Andre’s most moving vision was the one he had of her nephew Lucas as a boy. Lucas had died at almost 6 years old from an aggressive form of leukemia. He was the same age as Lisa’s daughter Gabrielle with whom he had grown up. The two kids were inseparable, and their favorite thing in the world was to catch butterflies. It was fitting Andre’s inner experiences would reflect his fondness for children.

Andre’s vision included a child chasing butterflies. But it meant so much more than a snapchat of a past attachment. It also carried a message which he matter-of-factly relayed to Lisa in the following words: "He told me that he had died". This was how his end-of-life experiences most effectively familiarized him with the imminence of a death he had not been told about, by making mortality as conceivable and harmless as chasing butterflies. Andre lived these pre-death experiences as if they were natural extensions of his everyday life. He never paused to wonder whether he was dreaming. He didn’t ask who these people were. He was not worried about what this could possibly mean. He just knew at an intuitive level that these were real and positive experiences that made him feel good. He felt secure, surrounded, loved. And he giggled.

For Lisa and Merle, being able to share Andre’s end-of-life experiences, sometimes through the photo albums and pictures in which he recognized a face, was an unforgettable time of togetherness. Their daughter Gabrielle was similarly moved; they allowed her to revisit her pre- teen years with her beloved cousin Lucas without reliving his unexpected and tragic loss. The whole family found comfort in knowing that Andre was blessed with end-of-life experiences that helped him transition with what he cherished most, his sense of belonging. Lisa commented that while “so many are on drugs for pain at the end, Andre was not”.Andre’s last inner experiences were not only comforting to him but, in Lisa’s words, also “welcoming”. He was “fully awake” up until two days before death.

Whereas most of us exist with clear definitional boundaries between what we perceive as reality and what our inner life and unconscious tell us, Andre moved seamlessly between the two, through the consciousness of relatives who came back to soothe him in his ELDVs. For him, pre- death dreams were less about a new, emerging consciousness that had to be reconciled with his surroundings than an extension of the love and supportive people that had always defined his life and relationships. Andre’s inner experiences represented a continued reflection of who he was through consciousnesses that merged with his. His persona never varied with circumstance and his disposition remained as beautiful as it was true. His was a journey through grace.

That patients with cognitive impairment have as lucid and meaningful ELDVs as neurotypicals not only speaks to our inherent humanity, but it also suggests that consciousness exists regardless of the cognitive differences that surround it. 

 

Christopher Kerr, “Experiences of the Dying: Evidence of Survival of Human Consciousness,” an essay written for the 2021 Bigelow Institute for Consciousness Studies in response to the question: “What is the best evidence for survival of consciousness after bodily death?” Dr. Kerr, MD, PhD, is the Chief Medical Officer and Chief Executive Officer for Hospice & Palliative Care Buffalo. The full text with notes is available at https://bigelowinstitute.org/contest_winners3.php.

 

 

Dementia recedes at end-of-life: Kerr excerpt #19

Dr. Christopher Kerr writes of dying patients having dreams or visions of renewing friendships with deceased friends and relatives:

Although it is true that the details and facts of much of their earlier lives may be lost, the defining emotional richness of having lived often persists in the inner world of those with brain disorders. It is not uncommon for an Alzheimer’s patient to remember the color of the gown they wore to their high school prom and not recall what they ate for breakfast. That is because dementia impairs the ability to form new memories. The disease is unusually cruel for people like my colleague and friend Dr. John Tangeman, whose mother suffered a traumatic early life and was therefore cursed to relive a painful past rather than her more hopeful and forgiving present. 

 

Gerd Vaagen was born in 1925 in Aalesund Norway to a Sea Captain and a housewife. She had an idyllic childhood, which included Alpine skiing on magnificent mountain ranges in winter, and aquatic sports and sailing in the fjords during the summer. Gerd was a freshman in high school when the Nazis invaded Norway on April 9th, 1940. The 5-year occupation by the Wehrmacht led to German-imposed food shortages, the wide censorship of the press, and a blatantly improbable Nazi propaganda that tried, for instance, to rebrand the well-known “heil” salute as an ancient Norwegian tradition dating back to the Vikings. Gerd witnessed horrors that would haunt her for the rest of her life. She saw her school principal being summarily executed when he was caught with a radio transmitter. She lost numerous friends who had become involved in the Resistance. Her family suffered from what bordered on famine. 

 

Tragically, Gerd’s life was marked by continued trauma and loss after the war. She married her high school sweetheart Rolph only to lose him, shortly after their marriage, to a sailing accident. In 1954, in an effort to leave the past behind, Gerd left her family and friends to travel to the United States, where she eventually remarried and settled in Buffalo where she had two sons, the younger of whom, Thomas, died of leukemia at age 3. When she turned 52, Gerd’s second husband died unexpectedly, and the family that was once four was now two. 

 

Gerd’s second son, my colleague John, remembers to this day his mother’s lifelong grief as well as her anger and bitterness toward the war and those who waged it. Family gatherings used to begin with pleas to limit the reliving of Nazi atrocities. The trauma of the war consumed much of her identity and only worsened with the loss of her husband, John’s father. Early on in the course of her dementia, Gerd became ever more obsessed with memories of the war, so much so that she believed Hitler himself was directly to blame for any frustration that occurred during the day, from a meal served cold to a lost TV remote. 

 

Dementia is particularly challenging for close family members who progressively lose the person they once held dear and no longer recognize. They watch powerlessly as their relative gradually becomes a shell of their former self. John could not help but feel a sense of abandonment in his mother’s absence. He felt robbed of his relationship with her, so much so that he began grieving his parent’s loss long before her death. As the years past and death neared, an unusual transformation took place that gradually erased the bitterness and anger that had so dominated Gerd’s life. Hitler’s ill-doings were forgotten, and the terrors of the war gave way to an extraordinary sense of composure. Gerd also became uncharacteristically pleasant and demonstrably affectionate with those providing care. Instead of living within the confines of past anguish, she now spent hours staring lovingly at the portrait of her deceased son Thomas. John would often find his mother blowing kisses to his late brother’s picture, recalling the good years, and professing her undying love. Gerd was reclaiming long-departed son.

 

As her dementia progressed, the burden of her life’s memories were lifted and she seemed to be the person she was before her lifetime of trauma. Her transformation was so complete that she would become frightened at her own image in the mirror, which she referred to as the “Crazy Lady”. John would eventually have to cover the mirror with a cloth. She was now so anchored to a distant past that she could no longer recognize her own 85-year-old self’s reflection, or maybe she rejected what she saw as a representation of her damaged soul.

 

Several weeks later, Gerd died, peacefully, within a distorted notion of reality, but returned to the one memory that had released her from anguish and brought her closer to a less damaged sense of self. Parts of GERD’s story is captured in episode five of the Netflix docu-series Surviving Death [https://www.netflix.com/title/80998853]. 

Christopher Kerr, “Experiences of the Dying: Evidence of Survival of Human Consciousness,” an essay written for the 2021 Bigelow Institute for Consciousness Studies in response to the question: “What is the best evidence for survival of consciousness after bodily death?” Dr. Kerr, MD, PhD, is the Chief Medical Officer and Chief Executive Officer for Hospice & Palliative Care Buffalo. The full text with notes is available at https://bigelowinstitute.org/contest_winners3.php.

Research on dementia: Kerr excerpt #18

Dr. Christopher Kerr writes of dying patients having dreams or visions of renewing friendships with deceased friends and relatives:

The sample cases we have so far discussed show that, regardless of the types or length of lives led or experiences had, humanity’s final moments do not merely consist of a passive disintegration of the flesh. Instead, the course of dying is transformed by resurrected consciousnesses that inhabit the inexplicably heightened awareness and cognition of the dying. But what about people whose minds function differently? Those with cognitive or perceptual impairments, those categorized or labeled as mentally ill, demented, disabled or “neuro atypical,” and whose voices and stories are often hidden and marginalized in life? Do the labels and preconceptions that so often limit them in life, also do so at the end to prevent them from partaking of the complex spiritual transformation we have identified in others? Our research shows that dying people with cognitive and developmental conditions have rich and vibrant inner processes that include their loved ones returning to usher them peacefully into death.

Many patients whose cognitive impairment is severe, arrive at the end of life without the kind of alignment of inner and outer self that others achieve. Instead, these patients are estranged from their core self. The loss of cognitive functioning, often referred to as Alzheimer’s dementia, is an extreme example of that condition. The disease separates us from ourselves or from what Oliver Sacks refers to as the “inner state” in profound and irremediable ways. Unlike other afflictions, Alzheimer’s dementia creates a world where cognition unravels, yet emotions and senses remain the same.

People with dementia are typically excluded from formal research studies that depend on informed consent and therefore intact cognition. Yet, they should be considered if we are to do justice to the full range of human experiences at life’s end. And of course, disentangling the world of those suffering from dementia also entails considering the caregiver on whom they depend to navigate an unrecognizable world.

The descent into dementia typically leads to a disproportionate clinical focus on the patient’s challenging behaviors and their management to the detriment of the person’s buried psychological states of being. The clinical world may also inadvertently obscure the subjective world of those with dementia by only considering the loss of measurable cognitive abilities. The clinician may be continually drawn to observable behaviors and evidence of defectiveness. This clinical nomenclature becomes the currency through which we discuss patients, as we become overly reliant on assessing people’s inability to repeat numbers or recall the names of past presidents. In so doing, we ignore the view from inside, the richness within the subjective states of dementia. We fail to consider the lived experiences of people with dementia because we let our awareness of their condition obscure their personhood and consciousness. 

Christopher Kerr, “Experiences of the Dying: Evidence of Survival of Human Consciousness,” an essay written for the 2021 Bigelow Institute for Consciousness Studies in response to the question: “What is the best evidence for survival of consciousness after bodily death?” Dr. Kerr, MD, PhD, is the Chief Medical Officer and Chief Executive Officer for Hospice & Palliative Care Buffalo. The full text with notes is available at https://bigelowinstitute.org/contest_winners3.php.

Vision of deceased aunt: Kerr excerpt #17

Dr. Christopher Kerr writes of dying patients having dreams or visions of renewing friendships with deceased friends and relatives:

No words can adequately describe the relief on the face of a parent who watches their dying child go from fear of the unknown to acceptance. For Michelle, it was her daughter Ginny’s last dream that made her realize that, while the end was near, it would be a peaceful one. Indeed, it was following her pre-death dream about God that Ginny stopped calling out to Michele every five minutes and started sleeping soundly. It was also in its wake that Michele herself felt inexplicably calm and settled, so much so that she finally found the strength to inquire about funeral arrangements that would honor her daughter’s legacy.

Ginny told me about the shadows she’d sometimes see flitting around her when she woke up at night. They used to frighten her, but after one particular dream
experience, she started finding them comforting. The shift occurred during an MRI when Ginny fell asleep inside the pulsing machine and had a vision of her beloved Aunt Mimi, who had recently died. Like Jessica, Ginny did not have or need a complex vocabulary for dying, so she imagined a new reality based on the language and imagery she had at hand. In her dream, she saw her aunt in a castle “with a baby in the window, and you can see the sun through it.” Ginny described her castle as ‘a safe place’ for Aunt Mimi as well as for Grandma Rose, who had also died not long ago. Ginny could feel Mimi hugging her and whispering in her ear, ‘You’ve got to go back down there and fight.’ When she woke up after the MRI, she was almost euphoric and proclaimed to her mother: “I’m going to be okay, I’m not alone.”

Both Ginny and Jess were met with loved ones who provided them with what their actual world could not – the opportunity to be made whole again. They knew that they would be leaving the reality of the living but only insofar as the living fail to recognize the connectivity that imposes itself as real through ELDVs. In their alternative world, the one that encompasses both the living and the dead, the knowledge of impending death is seamlessly integrated within the certainty of love, and continued life.

Children may lack language for death or a full understanding of mortality, yet they innately have deep inner processes at life’s end that not only inform and guide them but enlighten and expand their sense of existence, both present and beyond. All this suggests that consciousness is not only inherent but vibrant regardless of age and years of physical existence prior to physical death. The cases illustrate that the consciousness of children is rich in sense, perception, resonance, memory and emotion; like that of adults, it can accommodate the departed and give them voice and countenance, sometimes in ways we don’t expect, all the while ensuring that the dying child is still living vibrantly even as her body fails. 

Christopher Kerr, “Experiences of the Dying: Evidence of Survival of Human Consciousness,” an essay written for the 2021 Bigelow Institute for Consciousness Studies in response to the question: “What is the best evidence for survival of consciousness after bodily death?” Dr. Kerr, MD, PhD, is the Chief Medical Officer and Chief Executive Officer for Hospice & Palliative Care Buffalo. The full text with notes is available at https://bigelowinstitute.org/contest_winners3.php.

13-year-old girl's ELDVs: Kerr excerpt #16

Dr. Christopher Kerr writes of dying patients having dreams or visions of renewing friendships with deceased friends and relatives:

The power the resurrected consciousnesses in ELDVs have in facilitating the dying process as well as the grief of those left behind is at no time more resonant than in the case of the passing of young children, whose innocence defies understanding. Children have an intuitive ability to understand when death is imminent, including when the reality of it is kept from them. It is often in the show-not-tell of their dreams and visions that they get informed and inform us.

I remember meeting thirteen-year-old Jessica. As I walked into her room, trying to be the doctor I thought she would want me to be, I quickly realized that no level of experience would match her innocence, or the innocent wisdom reflected in her ELDVs. Her consciousness was not clouded by any of the considerations that often darken an adult one. She dreamed in distinct tones and textures, which not only created awareness of her impending death but also secured her in love. The knowledge of death that adults first experience as grief and sadness was to Jessica an intuition reframed by her ELDVs into sensory images of joy, color, warmth, and security; what we perceive as separation, she experienced as a loving reunion. Whereas we obsess about the border that separate the living from the dying, Jessica did not so much as see a distinction between her immediate world and the imaginary one of her dreams and vision. (Link to Jessica Interview Video: https://www.youtube.com/watch?v=qCMtnkoxgs0.)

Where I was bracing myself for an excruciating conversation, I instead encountered a bright-eyed little who was eager to chat about her day, her mom, her pets, and her dreams. Jessica did not pause to mourn the life she would not get to live, or to talk about the career or kids she would not have.; she had no regrets to mull over, or could-have-beens, or missed opportunities to work through. She was too busy living in the now, and her ELDVs were part of that present, an extension of the life she was living and where the dead roamed as freely as if they were visible to all.

Children’s end-of-life experiences, like those of other patients, feature ‘loved ones’ who come back to them. The difference is in the lack of questioning and of the boundaries with which we preoccupy ourselves. Recurring dreams are lived as certainties, as if they are actual visions, visible in this world as well as in theirs, because the two worlds are one. It is not that they cannot tell which is which but that they know they are inseparable, an extension of one another. It is not a matter of failed perception but of a transcended one.

Jessica went on to dream about Mary, her mother’s best friend who’d died at 35, when Jessica was only 8: “Mary is one of my mom’s best friends who passed away from leukemia. I think I was pretty close to her, and she was very close to my mom. I liked her. She was very nice. I’d seen her in my mom’s room. Coming up the stairs, I was going into my room and stopped when I saw from the corner of my eye something playing with my mom’s curtains. She had her favorite shirt on, my mom told me that it was. Because I told my mom it was a grey and blue, checkered flannel shirt.” 

Jessica was the only child of a single mother, which left one last uncertainty once her concern about dying had been resolved: ‘What will I do without my mom?’ The vision of this mother surrogate, her mother’s best friend, in her mother’s room, brought tremendous peace to her. She felt “relief and happiness”. She continued, “Mary was a very strong person, and I know that I am strong, and my mom tells me all the time that I was, am like her.” Kristin, who never left her daughter’s side, reminded her that “You told me all the time that: ‘Mom I saw an angel,’ and then you were able to go to sleep.” “Yes,” Jessica nodded, “I was able to go to sleep... it was really comforting, and I was not afraid of it at all.” Again, ELDV’s typically address our individual needs or the wounds that need tending.

Until Jessica, I could not imagine that children would have access to their own set of tools during the dying process. I assumed that a young mind was not fit to handle a conversation about life’s end, and I failed to appreciate the sophisticated ways in which they may already have had one. Jessica had an understanding of death that exceeded anything I could have imagined; she created connections we could not have given her, in details she should not have remembered.

A child’s innocence goes infinitely deeper than ignorance. Unbeknownst to her, Jessica’s ELDVs were teaching her, as well as her caretakers, how to cope with the inconceivable. Most importantly, for her mother, they helped initiate the process she could not consciously accept, that of letting go. But it was not of her daughter that Kristin had to let go—she could never do that--it was of denial.

Mother and daughter shared an unspoken language and a spiritual bond that have carried over to this day. Six years after her daughter’s death, Kristin still feels Jessica’s presence. She still decorates her house to fit the themes of each coming holiday because “Jess would not have it any other way”. She still cares for her little girl’s spoiled and overweight orange cat Lulu, who continues to wear the silly ornament Jess once attached to its collar. She still smiles at the memories and the presence she continues to feel alongside her. 

Christopher Kerr, “Experiences of the Dying: Evidence of Survival of Human Consciousness,” an essay written for the 2021 Bigelow Institute for Consciousness Studies in response to the question: “What is the best evidence for survival of consciousness after bodily death?” Dr. Kerr, MD, PhD, is the Chief Medical Officer and Chief Executive Officer for Hospice & Palliative Care Buffalo. The full text with notes is available at https://bigelowinstitute.org/contest_winners3.php.

Dying 98 year-old waits for son: Kerr excerpt #15

Dr. Christopher Kerr writes of dying patients having dreams or visions of renewing friendships with deceased friends and relatives:

Those who were loved and lost and come back through end-of-life dreams and visions help fulfil each patient’s unique needs, whether it is the need to be forgiven, to be loved, or to be granted peace. For many, their longing is so overwhelming that it affects not just ELDV content but also their external reality. We often hear of dying patients who wait for a particular anniversary, birthday or visitor before taking their last breath. Prior to working at Hospice, I assumed this phenomenon to be part of the lore that was passed around hospitals and whose origin may have been as nebulous as the evidence evoked to support it. Then I met Maisy, a 98-year-old matriarch, who simply refused to pass before her son Ronnie made it to the hospital.

Maisy had not seen her son in 8 years. This may have been due to an interpersonal conflict or just time’s swift passage. I was not about to inquire. She had stopped eating several days earlier and was no longer verbal, so we knew her to be teetering at the threshold of death. Her relatives had gathered around and were talking freely, not with her, who had seemingly lost consciousness, but certainly about her, the woman who had taken in over 100 foster kids in her lifetime. They didn’t know that she could hear them. Someone mentioned that they had had the police track down her biological son Ronnie in Oregon, and that he had booked a flight to Buffalo. They were now worried he would not make it in time to see her. The next day Maisy opened her eyes, sat up in bed, and cried out her husband’s name: “Amos! My Amos!” she said, followed by “I can’t come to you now. My son’s coming.” Ronnie arrived on the same day, and 24 hours later, Maisy closed her eyes for the last time.

As a scientist, I could give a protracted explanation for what happened to allow Maisy to stall a process over which she seemingly had no control. It would have to do with sleep patterns and their relation to the dying process. I could explain that dying is progressive sleep, and that to sleep deeply one must be able to relax and let go. I could go on providing evidence about the biological processes involved in not yet dying, but that would not do justice to what I and others commonly witness. It would not even come close. Maisy’s mind was unable to find peace until Ronnie arrived. In the final analysis, dying, like living, is about love and consciousnesses that endure no matter what, and that finds a way to persist within and beyond the confines of our existence. 

Christopher Kerr, “Experiences of the Dying: Evidence of Survival of Human Consciousness,” an essay written for the 2021 Bigelow Institute for Consciousness Studies in response to the question: “What is the best evidence for survival of consciousness after bodily death?” Dr. Kerr, MD, PhD, is the Chief Medical Officer and Chief Executive Officer for Hospice & Palliative Care Buffalo. The full text with notes is available at https://bigelowinstitute.org/contest_winners3.php.