Then, in October 2004 she was admitted to hospital, having collapsed with a urinary tract infection. We visited anyway, sitting with her while she wanted to die. She would just about know who we, her family, were, but for the last couple of years, angry, depressed and confused, she wouldn’t want to see people. Her short-term memory was shot, and the rest of it was patchy. From there, her behaviour began to change – this prim, proper, polite and warm woman, for decades a stalwart of whichever community she was in, had her personality twisted and transformed by dementia, and she became paranoid, aggressive, verbally abusive.
#Hospice nurse explains phenomena before death series#
In the mid-1990s, with her eyesight rapidly going and her memory diminishing, my maternal grandmother, Kitty Lewis, moved into a care home, after suffering a series of mini-strokes and being diagnosed with vascular dementia. Personally, I have no trouble believing it, having witnessed it myself. “Based on the preliminary data that we heard from our grantees,” says Eldadah, “I think it’s safe to say that this phenomenon exists, and it likely exists more often than we expect, or than we would have believed.” From that, six studies were funded, which are getting under way. The workshop resulted in a paper, published in the Alzheimer’s Association journal Alzheimer’s and Dementia, concluding that the study of such lucidity could “provide insight into both underlying neurobiology and future therapeutic possibilities”. “If you’re recruiting people into a research study,” he says, “you probably don’t want to tell them: ‘Hey, we’re going to be looking for this phenomenon that occurs right before you die.’” “If you’re looking for it prospectively, you can’t quite say that.” Also, let’s face it, the terminology might be unhelpful. “To call it terminal lucidity implies that this is a phenomenon that occurs shortly before death,” he says. Eldadah and the NIA research staff had already given it a new name, “paradoxical lucidity”. In 2018 he and his team set up a workshop, inviting key figures to size up what had been learned so far.
Then around 2017 it got pulled out of the files in my mind and I thought: ‘Maybe there’s something that we can do about that.’”Įldadah is supervisory medical officer at the Division of Geriatrics and Clinical Gerontology at the US National Institute on Aging (NIA). “In 2015, I came across a newspaper article that described a situation like this, and I thought it was really interesting,” says Dr Basil Eldadah, who is leading this charge. Now, however, scientists hope a group of studies will change that. Yet despite growing interest and some research (involving surveys and questionnaires) over the past decade, we’re no closer to knowing what causes it. He published an article about it and coined the term “terminal lucidity”.
It’s an experience the German biologist Michael Nahm brought to prominence in 2009, after learning about it from 18th- and 19th-century medical case reports. “These are the last Christmas carols I’ll ever hear.”
“If you were in my position, you’d cry too,” he said. Later that night, nurses told Kay, when children visited to sing carols, tears streamed down Ward’s face. Her surprise wasn’t just at his coherence, but that the tone of this reply was undeniably her father’s dry humour. You’re gonna try to starve me, eh?’ That was like: ‘What’s going on here?’” I suppose the jello’s gonna be my last meal. Red jello.’ And he looked at me, really deeply, and said: ‘So. “Finally I just told them: ‘Bring him jello, he likes jello. “When I went in,” she says of her later visits, “he didn’t know me at all.” That Christmas, he refused to eat. He had been diagnosed with dementia three years earlier he was confused and disoriented and eventually he no longer recognised his daughter, Kay. It was Christmas 1999 in Rapid City, South Dakota, and Ward Porterfield, 83, was in a nursing home.
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