For over a decade, former Chicago Sun-Times photographer Bob Ringham helped care for his wife Peg as her health declined due to Lewy body dementia. Sun-Times columnist Neil Steinberg went to their home in North Carolina to document her final days.
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.
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.
“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 University of Chicago Hospitals. “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.”
The Ringhams actually do own a dog, Lyla, a pit bull mix who hovers in the background — getting food into Peg’s mouth can be a challenge, and Lyla has dibs on any muffin or splashes of baby food that end up on the floor.
Bob has been dealing with his wife’s illness for over a decade. It started with the usual things a person might begin to forget with age. Where did I put my purse? My car keys? Suddenly, she couldn’t remember passwords she needed at her job, managing the payroll at a construction company. Eventually, the workplace that loved her had to let her go.
“She was smart,” Ringham says. “She was an accountant.”
The details of what’s happening with Lewy body dementia — a protein malfunctioning on a fold of the brain — are not that important. Besides, definitive diagnoses of dementia are speculative while patients are alive.
What is certain at this point: Peg can no longer walk unaided, or use the bathroom, or feed herself. Either Bob or Clare, 21, or both of them, must guide her to perform all those daily necessities, assisted by a home health aide who comes twice a week to bathe Peg. A hospice nurse also visits, coming once a week to check on her condition. A social worker stops in once a month for half an hour.
Otherwise, they’re on their own, feeding Peg, cleaning up after her, moving her from the chair to the bed and back. Making the Ringham household an outpost of not one but two expanding frontiers in American healthcare: the rise of dementia among an aging population and the demands that it and other chronic ailments place upon family members to act as caregivers.
“She’s down to about 130 pounds,” says Ringham, who took up weight-training after dropping her once over the summer. “I try to put her in the wheelchair, but that’s getting a little challenging. There’s a lot of challenges. You can’t leave her alone. She’s not going to get up and walk around, but you just don’t know what’s going to happen. Wet the bed. Every four days, we have to put a suppository, give her an enema.”
This care accounts for a vast, hidden health-care system. Think of all of the hospitals and all the nursing homes in the country. The bulk of health care doesn’t take place there: It takes place in private residences like the Ringhams’: 80 percent of all care occurs at home, according to the Caregivers Action Network. Often, it is done at the end of life: hard work, climbing a mountain toward tragedy.
“There’s no happy ending,” says Bob, who was a photographer for the Daily Herald and then the Chicago Sun-Times for 20 years before leaving be the photo editor of the Courier-Post in Cherry Hill, New Jersey. After Peg went into decline, he was surprised to find certain friends were reluctant to step in their house. They’d stop by, drop off food, extend their best wishes but refuse invitations to come in.
“Everyone’s afraid of it,” he says.
Lewy body has a surreal element. As Bob and Clare help Peg through the routines of daily living — changing her absorbent undergarments and bedding in the morning, then brushing her hair and teeth, spooning baby food into her mouth, washing her body and hair, going to the bathroom — she talks. Sometimes, eyes closed, carrying on half a conversation with someone who isn’t there. Sometimes, she speaks to the people on the TV, responding to their questions. Sometimes, she talks to Bob and Clare, conversations that veer from perfect sense to complete gibberish, punctuated by jarring shifts in emotion and occasional profundity.
“I have something to talk to Bob about,” Pegs says, as Bob struggles to move her on her hospital bed.
“What would you like to talk to Bob about?” he asks.
“I don’t know, what is it?” she replies. “You are the berriest. What’s a bing-bong?”
“You have to lift your butt to get your pads underneath,” Bob says, trying to get her to move her hips. “Can you do that?”
“I have no idea.”
“C’mon. Lift your legs up.”
“I did.”
“Lift them now. One, two, three, go.”
“I don’t care. Oh, no!” She utters the last two words in utter alarm.
“How you feel now?”
“Hey!” says Peg, now serene. “Did you follow your heart?”
Bob gets her out of bed and onto an adult potty seat. He begins to brush her hair.
How much of her condition affects Peg is an open question. She knows her name and that she has a husband Bob. But she usually seems to think her husband is always somewhere else and has hired this man to care for her.
“Where’s Bob?” her husband often asks, to test her and amuse himself.
“How the hell should I know?” she answers.
“She thinks Bob hired me to watch her because Bob is out shooting pictures,” he says later.
Once, over the summer, Peg looked closely at him and asked, “How come you and I never got married?”
“We’ve been married for 46 years,” Bob replied.
She scoffed.
“I wouldn’t marry an old man like you!”
LEARN MORE, GET HELP
• The Lewy Body Dementia Association has information on research, resources online at https://www.lbda.org.
• So does the National Institute on Aging at https://www.nia.nih.gov/health/what-lewy-body-dementia.
• VeryWellHealth has a guide to differences between Alzheimer’s disease and Lewy body dementia — two most common causes of dementia — at https://www.verywellhealth.com/difference-between-alzheimers-and-lewy-body-dementia-98749.
• The book “A Caregiver’s Guide to Lewy Body Dementia” by Helen and James Whitworth has advice for anyone tending to a loved one with the ailment.
