Sparks of Clarity
She changed the way I thought about persons with dementia..
My name is Jason Karlawish. I’m a geriatrician, and I'm the co-director of the Penn Memory Center at the University of Pennsylvania.
And I want to tell you the story about a patient whose family member changed the way I thought about the personhood of persons living with advanced dementia. My standard practice at the Memory Center is to talk to a family member, someone who knows the person well. And I want to tell you a story about a daughter, who I was seeing in the company of her mother -- her mother was my patient. And the daughter volunteered that her grandfather, her mother's father, had Alzheimer's disease, and that he had died of his dementia. And then she tells me the story of how her grandfather was in hospice. It was understood that he was going to die of his Alzheimer's disease.
As she started tell me that story, all the sudden she let forth this great sob, like a wave crashing on a shore, like a sudden cloudburst. And she explained to me how her grandfather was quite ill, he was in hospice. And she walks into the room, and he looks at her, and he reaches out and he takes her hand. He calls her by her name, he tells her how much he loves her, and they talk. And then, he stops. And she tells me it was very peaceful, he knew who she was, and he knew obviously who he was. This moment of just paradoxically lucid connection. And two days later he died. She told me that in the year prior to that, she would visit him regularly, weekly even. And maybe he would speak, sometimes often, not at all. Often didn't seem to really recognize her. But here it was, this moment of complete connection, complete clarity.
Prior to that I had heard rumors about these kind of events that occurred in persons with advanced dementia. Intense connection moments of unusual clarity. Sometimes they occur prior to death I had heard, but oftentimes not. But I'd really not asked about them, they weren't part of my routine assessment when I saw someone with advanced dementia. I didn't ask the family members about them. Worse, the few times that they did come out, but they told me about them, I was really quite dismissive. I paid a little mind, if you will, because I reasoned that these people really didn't have much of a mind. And this was just sort of the unusual behavior that comes from a failing mind.
But this experience, this granddaughter's tears, really changed me. It caused me to question that, and to question my indifference. And so I did what a doctor does. I started to ask about episodes of unusual clarity, unusual lucidity, really good days, moments of intense connection. And things started to happen. I started to discover this hidden world of interconnected minds and mind perception, between these caregivers and these patients with very advanced dementia.
One son spoke of his father's sparks, and how there were these moments where the sparks came. And, for example, when he gave his father the ballot to vote, his Dad was actually able to express what he wanted to do, and why. Another spoke of his mother's shooting stars, where she had intense connection about things she wanted. Some felt these things with their relative hidden inside, almost trapped, and able to periodically to sort of come out. But otherwise sort of locked inside. Some almost thought of them as incantations. Some of them really mourned to these experiences because they've had this glimpse of the way the relative was, And that went away. And they would struggle to do things to bring it out. Some just didn't know what to make of it.
The point was that these weren't in their perception to be just a brain firing mysterious things and failing brains. It was very meaningful connection with people who, if you met that person, particularly if you knew that person before, but even if you never knew them, you would say my gosh how disabled they are. So that one moment with that daughter was transformative. It changed the way I thought about patients with advanced stage dementia, and the way I connected with their family members about their care, and how they perceive them.
The Penn Medicine Listening Lab is a storytelling initiative that embraces the power of listening as a form of care. While the stories featured here aspire to uplift and empower, they may also describe experiences of trauma and suffering. We recognize that listening can be a vulnerable experience and offer resources at Penn Medicine and beyond through our website for those in need of support.
Tags: Compassionate Relationships