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.