Ms. Ehmer, known as Käthe, was a German woman born severely disabled in 1895. At 6 years of age, she was sent to a mental institution where she would live until she died at the age of 26.
“Käthe was among the patients with the most severe mental disabilities who have ever lived in our institution. From birth on, she was seriously retarded. She had never learned to speak a single word. She stared for hours on a particular spot, then she fidgeted for hours without a break. She gorged her food, fouled herself day and at night, uttered an animal-like sound, and slept. In all the time she lived with us, we have never seen that she had taken notice of her environment even for a second,” recounted Dr. Friedrich Happich, who ran the institution.
Käthe suffered from several episodes of meningitis, which were thought to have “destroyed much of the brain tissue required for intelligent reasoning.” She also had tuberculosis, which led to the amputation of her leg and was the eventual cause of her death. She had never spoken a single word.
But, as she lay dying, something unexpected happened. She began singing to herself.
She sang—clearly and in perfect German—a funeral hymn. She sang to herself for a full half hour until she passed away.
“One day I was called by one of our physicians, who is respected both as a scientist and a psychiatrist. He said: ‘Come immediately to Käthe, she is dying!’
“When we entered the room together, we did not believe our eyes and ears. Käthe, who had never spoken a single word, being entirely mentally disabled from birth on, sang dying songs to herself. Specifically, she sang over and over again ‘Where does the soul find its home, its peace? Peace, peace, heavenly peace!’ For half an hour she sang. Her face, up to then so stultified, was transfigured and spiritualized. Then, she quietly passed away. Like myself and the nurse who had cared for her, the physician had tears in his eyes.”
A Puzzling Phenomena
Terminal lucidity is most often seen in dementia patients right before they die. They have a brief period of lucidity in which they come “back to life” and regain the qualities that make them who they are—or were before the onset of the disease.This lucidity can include the ability to recall memories that were thought lost to a disease that slowly destroys the brain, as well as the ability to communicate—something that may long ago have disappeared as a consequence of their illness.
Experiences During Terminal Lucidity
A wide range of things can happen during these episodes of clarity, but there are some characteristics that those who experience terminal lucidity share. According to All American Hospice, the following are common among patients:- Requesting their favorite food or object
- Recognizing or looking for a friend or family member
- Being in a good mood and becoming more verbal
- Reminiscing about good times when they were young
- Looking for or talking to deceased people, pets, or religious figures
- Having unexplained sensory experiences such as seeing lights or hearing sounds
- Talking about traveling or preparing to travel alone
- Predicting the exact time of death
Terminal Lucidity Case Studies
A review authored by Mr. Nahm, Dr. Bruce Greyson, and others collected case reports of terminal lucidity and its occurrence in patients with a variety of conditions.In a case from 1990, a 5-year-old boy dying of a malignant brain tumor had been in a coma for three weeks. During this period, his family members had remained at his bedside. Eventually, upon advice from their minister, the family told their comatose son that although they would miss him, he had their permission to die.
“Suddenly and unexpectedly, the boy regained consciousness, thanked the family for letting him go, and told them he would be dying soon.” He died the next day. (Morse and Perry, 1990)
In another case, a young man was dying of cancer that had spread from his lungs to his brain. At the end of his life, brain scans found that the tumors had destroyed and replaced almost all of his brain tissue, and in the days before he died, he lost the ability to move or speak. However, his wife and a nurse observed that an hour before he died, he “woke up,” said goodbye to his family, and spoke with them for about five minutes before he lost consciousness and died. (Haig, 2007)
“My Lydur, I am going to recite a verse to you.”
According to her son, she then very clearly recited the following verse, which he thought particularly appropriate to her situation (translated):“Oh, father of light, be adored. Life and health you gave to me, My father and my mother. Now I sit up, for the sun is shining. You send your light in to me. Oh, God, how good you are.”
After reciting the verse, the woman laid back down and was unresponsive—remaining this way until she died a month later.Studies of Terminal Lucidity
Terminal lucidity isn’t a new phenomenon, and instances have been recorded in medical literature since the 19th century.The same study cites that other researchers found that paradoxical lucidity in dementia patients typically happens within one to two days before the patients die.
There is also a wide range of variation in how long the episodes last. Another referenced study of 38 cases of people who experienced lucid episodes found that 5 percent lasted several days, 11 percent lasted one day, 29 percent lasted several hours, 24 percent lasted between 30 and 60 minutes, 16 percent lasted 10 to 30 minutes, and 3 percent of the episodes lasted less than 10 minutes.
These episodes are also witnessed by caregivers, nurses, doctors, and hospice and palliative care workers who care for terminally ill patients.
Mysterious Causes
Scientists are still determining what causes terminal lucidity, and the phenomenon is difficult to study because of its unpredictable and transient nature. Studying these lucid episodes during their brief occurrence would also be considered unethical—taking away precious time patients could use to reconnect with their loved ones.Many questions remain about terminal lucidity and its causes.
Helping Loved Ones Cope
For those who witness these lucid episodes, they can be either a positive or stressful experience—and sometimes both. One study published in 2022 asked caregivers to appraise their experiences of these episodes in patients with late-stage Alzheimer’s and related dementias. Seventy-two percent reported them to be “quite a bit or very positive,” 17 percent said they were stressful, and 10 percent said they were a combination of the two.Terminal lucidity can be stressful and confusing for some family members who may think it is a sign that their loved one is recovering and demand a change in care to accommodate this new situation—causing considerable emotional turmoil for family members, friends, and staff who care for the patient.
“Being aware of terminal lucidity can help loved ones understand it is part of the dying process, acknowledge the person with dementia will not recover, and allow them to make the most of the time they have with the lucid person,” they said.
For scientists, terminal lucidity represents an opportunity to reevaluate our understanding of the brain and the perception that the cognitive losses that characterize Alzheimer’s and other dementias are inevitable and irreversible.
For families, these brief episodes of lucidity can be a wonderful gift, allowing the sick person to say goodbye, reconnect with their family and friends, communicate their last wishes, and be an opportunity to ask for or give forgiveness. For loved ones of patients with severe dementia who may not have had any communication with them for many years, this can be a healing experience for everyone involved and a beautiful way to say goodbye.
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