This piece has an unusual backstory. Bob Ringham was a photographer at the Sun-Times. In the mid-1990s, we took a road trip downstate to cover the Mississippi floods, and got to know each other better. Jump to late last year. He asked me to call him so we could talk about blogs—he reads this one, and thought of doing his own about his wife, who was dying of a lesser-known form of dementia. I gave him what advice I could, and then asked him if he were documenting her end, photographically. He said he really couldn't: he was the primary caregiver, and his hands were full. I asked him if he wanted me to come down, hang out for a few days, maybe take some pictures he could then use on his blog. He said he did. At that point, it struck me that there might be a story here, and I went to the paper's editor Chris Fusco, who said, "Do it."
Clare Ringham prepares a simple dinner: linguini with broccoli and chicken.
She sets the table in the comfortable house she shares with her parents in a pine-studded suburb of Raleigh, North Carolina. Festive green-and-red pasta plates for herself, her father Bob and mother Peg — at Peg’s place setting, she puts special weighted silverware. Peg’s hands tremble with palsy, so the heavy silverware makes it easier for her to eat — or would, were she to use them.
But Peg won’t be joining her family for dinner tonight. She hasn’t for over a month, and she never will again.
Making the bed that morning, Bob plumps Peg’s pillow, even though she does not sleep with him. She sleeps in a hospital bed in the living room where the mattress alternates pressure to avoid bedsores. With death near, she sleeps most of the time now.
“Alzheimer’s disease essentially takes the main stage,” says Dr. James Mastrianni, director of the Center for Comprehensive Care & Research on Memory Disorders at the UChicago Medicine. “People don’t hear about a lot of the other forms.”
Mastrianni says doctors have studied Alzheimer’s for over a century. Lewy body has been recognized for perhaps 25 years.
“That’s a pretty short time when you think about understanding these disorders,” he says.
Hundreds of researchers are studying Lewy body dementia, which you might think of as Alzheimer’s-plus. An Alzheimer’s patient might forget he has a family. With Lewy body, he might forget the family and also invent pets.
“With Lewy body dementia, one of core features is hallucinations and visions,” Mastrianni says. “They will often see animals or birds flying around the house. I had one patient who put a cup on the floor with water so the dog could drink. But they don’t own a dog. Your perception is completely unreal.”
This is the Ringham household routine in late January: holding onto what they can of the past with Peg, coping with a demanding, almost overwhelming present and adjusting to a grim, inevitable future.
“A year ago, 2017 Christmas, she went to the mall, got me a shirt,” Bob says. “This year, she didn’t even know it was Christmas, and she can’t even walk. It’s a terrible, terrible disease, a steady progression.”
The disease is Lewy body dementia, a common though little-known brain disease like Alzheimer’s, combining the mental decline of that condition with the physical decay of Parkinson’s disease. A million people in the United States are thought to have it.
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