Jason Karlawish is a physician and writer.
He researches and writes about issues at the intersections of bioethics, aging, and the neurosciences. He is the author of The Problem of Alzheimer’s: How Science, Culture, and Politics Turned a Rare Disease into a Crisis and What We Can Do About It and the novel Open Wound: The Tragic Obsession of Dr. William Beaumont. His essays have been published in The Wall Street Journal, The New York Times, Forbes, The Hill, The Los Angeles Times, The Philadelphia Inquirer, STAT, and The Washington Post. His STAT column Neurotransmissions examines the vast problem of dementia. A Professor of Medicine, Medical Ethics and Health Policy, and Neurology at the University of Pennsylvania, he is co-Director of the Penn Memory Center, where he cares for patients, and executive producer of the Age of Aging, a podcast that examines how to live well with an aging brain. He lives in Philadelphia.
Ambiguous Loss
In this reading, Jason Karlawish shares his poem on the quiet grief of dementia. Published in JAMA and featured in The Age of Aging, the poem gives language to the long goodbye.
Ambiguous loss: a peculiar kind of grief in dementia care
Dementia leads to a grief known as ambiguous loss. American medicine and culture need to talk about it.
I was at the close of my interview with Muriel, wife and caregiver of my patient Jim, who has dementia caused by Alzheimer’s disease. Jim was in the waiting area so I could have a candid conversation with Muriel.
I’d asked her about his cognitive symptoms, mood, and behavior, and how they impact his ability to perform daily tasks. I reviewed their living situation, his medications, and his medical history. I’d inquired about her. How are you doing? Is there anything you need? Now, it was time to ask my closing question:
“What is it like to be Jim?”
She hesitated, wrung her hands, shrugged, and then she said, “I … I, to be honest, I really don’t know.”
Muriel recognizes the person called Jim — she could point him out in the waiting room if I asked her to — but she doesn’t know him.. Because of his impairments in memory, language, initiative, and the ability to judge and respond to her emotions, she struggles to know how her husband experiences the world.
This feeling of strangeness is quite common, and it has a name: ambiguous loss. The most extreme experience of it is summed up by Brian, whose wife, Nancy, regards him not as her husband but as a friendly stranger. After he moved her to a residential long-term care facility, he wrote me a summary of her terminal stage of dementia caused by Alzheimer’s disease. His conclusion: “It is an existence, not living.”
Nancy is alive, but in a sense, she is also dead….
Click on “READ THE LATEST COLUMN” and learn how the more America recognizes ambiguous loss and talks about it, the better we can advance our understanding of the illness experience of dementia and how we ought to care for patients and caregivers.
The ACED tool
Why have thousands of psychologists, physicians, caregivers and social workers from all over the world requested a copy of the ACED? Because they know that to promote the well-being and dignity of a person with marginal capacity, the person needs an assessment of the capacity for everyday decisionmaking.