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.
Hear Neil Steinberg discuss his story with WBEZ’s Jenn White
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 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.”
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 in 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,” Peg 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.”
“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.
“I wouldn’t marry an old man like you!”
Bob Ringham is 69 years old. He grew up in Indianapolis and enlisted in the military at 18, hoping to be made a photographer.
The Marines handed him a rifle and put him in the infantry. In 1968, while crouched with four other soldiers in a trench at Hill 881, a Vietcong shell exploded amongst them. A direct hit. One man was instantly blown apart. One was struck in the chest. Another suffered a devastating concussion. The fourth lost his nose.
Bob was the only man wearing a helmet and flak jacket, but his left arm and leg were sprayed with shrapnel. He was in a hospital in Okinawa for four months, learning to walk again. He thought he’d be sent home. Instead, he was shipped back to patrol duty in Vietnam — with 37 pieces of shrapnel in him.
They’re still there. Ask Bob which experience is more difficult, being wounded in Vietnam or the life he is leading now, caring for Peg, he does not hesitate before replying.
“This,” he says. “Yeah. I would take being wounded over this. Because I was a Marine, and mentally you’re prepared for that. You know it could happen. You could die. You’re trained. I’m not trained for doing this. Watching somebody that I’ve been with for 46 years … I don’t think anybody could be trained for this.”
Still, he credits his Marine background for the calm and dedication he exhibits caring for his wife. He can’t leave the house for any extended period. His self-published book of photographs of the rural area is called “20 Minutes From Home” — that’s as long as he’ll let himself be out on any errand before he has to hurry back.
He needs to be there to provide care. But there is another reason he spends the bulk of the day in the house.
“I don’t want her to die alone,” he says.
Being a Marine, he says, you understand duty, commitment and not leaving anyone behind. Not everyone has that advantage. Some spouses flee in the face of the illness. Others crack under the strain.
“It’s a huge issue,” Mastrianni says. “Any patient with dementia, it’s a tremendous burden on the family and friends who help out. Spouses who take care of patients are very likely to suffer illnesses themselves from the stress of caregiving. The cost of caregiving is high. Families struggle who can’t afford it.”
Bob also takes care of himself: water aerobics at a local health club. A trainer gives him a special rate. His doctor has warned him that sometimes, no sooner does a spouse who’s being cared for die than the surviving partner falls apart. He gently prods him to think about the future that is rushing in his direction.
“My doctor says, ‘What are you going to do when it’s over with? Are you going to remarry?’ ” Bob says. “I say, ‘Hell, I don’t know. I’ve been married to one person for 46 years. What’s a 70-year-old guy supposed to do? Go on eHarmony.com?'”
The doctor warns him that, with some caregivers, no sooner is the burden lifted, then the surviving spouse sinks into depression, even suicide.
“That’s not going to happen,” Bob says. “I have too much I want to do. I can still see. My passion is photography.”
One of the hardest things about the experience for him is that he’s so busy living it he can’t photograph it. The camera not only provides meaning, but a kind of filter.
“I’ve covered a lot of death,” he says. “Vietnam, seeing death. The Mexico earthquake. All that. I always had a camera in front of my face. When you have a camera in front of your face, it’s not real. Next week, next month, I’m going to have to face this death, close, without the crutch. There’s nothing to hide behind. and it’s sometimes pretty frightening to think about.”
And for Peg, during lucid moments, she does grasp her predicament.
“She told me, if she could push a switch and pass, she would do it,” Bob says.
“Where are you?!” It’s Clare, on the phone. Bob is in his car, in a line of cars waiting to get coffee at a tiny coffee drive-thru outpost. Bob left at sunrise, to photograph the sun striking the rustic tobacco sheds not far away. He tells her he’s on his way back.
Clare is 21, a student. She would not push that switch that Peg says she would. She is not exactly savoring every moment of tending to her mother. But she is holding onto it.
Peg started getting sick when Clare was 8, meaning her mother was sick far longer than she was well.
“I kinda accepted that it’s part of my life now,” Clare says. “She took care of me. Now, I’m taking care of her. It’s not like she had a choice. It just kinda happened. Me resenting isn’t really going to change anything. I just knew that, if I got angry, what good is that going to do? The only think I can do is be there for her and give her love.”
Like her father, she clings to the idea that Peg knows them, though it can get twisted.
“I know she knows who we are,” Clare says. “She knows our names, and I think she can put a name to a face. But I don’t think she knows who we are to her.”
Clare has an enormous tattoo on the top of her left leg, with the purple Alzheimer’s awareness ribbon and the sentence: “Mom, don’t you worry. I’ll do all the remembering.”
“I always keep track of the funny things she says. We don’t try to focus on the bad things that happened. We try to remember all the funny times. I have very little memories from my childhood. She was always working. Dad was always working. The memories I have now are not under the best circumstances, but they’re still memories. At some point in this crappy time, we’ve managed to smile and laugh. And that means a whole lot to me.”
Clare laughs often as she tends to her mother. At the odd things she says. At the memory of the indignities she experiences doing so — getting accidentally slapped in the face with a wet undergarment. She’ll look over at Bob, always nearby, helping, and burst out laughing.
Social worker Cathy Chiro arrives and gets a quick progress report from Bob.
“Is she still sitting up some, watching TV?”
Not really, Bob says. Chiro casts a concerned look at Peg, inert in the bed.
“This is significant decline. … Usually, when I’m coming, she’s always up.”
Chiro has been doing this kind of work for more than 40 years. But she says: “Her dementia is so different than anything I’ve ever seen before. All the words, the language, she’ll come up with her own words. Lewy body, it’s not like Alzheimer’s.”
She glides to the bed, her voice changing registers, now all North Carolina honey dripping off a hot biscuit.
“Ohhhhh, Peggy,” she coos, getting right up to the bed, draping herself over the security bar, face close. “Hey, Peg. Hi.”
“How are you?” Peg asks groggily.
“I’m all right, how are you?”
“Awwww, Peg. Bless your heart.”
“Where we going?” Peg asks.
“Where we going? We don’t have to go anywhere. I feel like staying home.”
“Home is good. This bed looks so comfy you’re in.
“Well, I’ll tell you what…” Peg begins, then shifts into gibberish.
“You’re just tired today,” Chiro says.
“Yes, actually I am,” Peg says.
“Do you remember you and I singing?
“Hmmmmmm,” Peg says.
“Do you REALLY?” Chiro says. “That was fun. We were the oldie-goldie girls. We were the doo-wop girls.”
They laugh. Chiro feeds her organic applesauce, the exchange sometimes making sense, at other times surreal.
“The door was … Hey, Bob!” Peg says suddenly, with utter clarity — her husband is a few feet away. “I gotta ask you something.”
“Where’s Bob at?” Bob asks, walking over. “Do you know where Bob’s at?”
“No, I don’t.”
“Bob?” she says. “Is it or isn’t?”
“I thought we weren’t supposed to get this.”
A week later, Bob is at her bedside. She opens her eyes. She smiles at him, and he winks at her. She closes her eyes.
“She’s never smiled like that,” he says later. “It was a great moment.”
Midnight comes and goes.
“I knew she was going,” Bob Ringham says.
He massages her feet — they’re like ice, though her forehead is sweaty. Hours pass.
“Let me go put my pajamas on,” Bob says, stepping toward his bedroom. He brushes his teeth. By the time he returns, she is gone. It’s about 12:15 a.m.
Bob takes a marker and neatly prints these words on her left arm: “I will always love you, Bob.”
“I wanted her to take something with her,” he says later. “At the end, I think she really knew I was Bob. She finally realized I was Bob.”