Grandison Turner Jr. had been sitting contentedly at the kitchen table for more than an hour. He held a blocky toy figure, and turned it over in his hands. Now and then, he looked up at his wife, Juanita, as she talked. He muttered softly and unintelligibly, as if the long conversation of their lifetime together still continued.
When he wanted to get up, Juanita, 76, stood behind him and lifted him from his chair. He shuffled silently into the living room and over to the large hide-a-bed cabinet against one wall. He stood there, head down, leaning against the cabinet. He tried to keep walking forward, though the cabinet blocked his way.
Next month, Juanita and Grandison will have been married 56 years. He spent his life working hard: He was a laborer and a family man, a good provider. But at 80, Grandison Turner, known as Junior, is drifting through the last stages of Alzheimer’s disease. Diagnosed a decade ago, he now needs 24-hour supervision. So Juanita cares for him in the shaded North Sacramento house where they’ve lived since 1975.
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“People thought I’d put him in a home,” she said. “I thought about it. I may not be in great shape, but if God thinks this is my job to take care of him, I’ll do it. Through the grace of God, I do it.
“He was a good man.”
He is still strong and wiry, a man used to working with his hands and fixing things, and his constant care is an exhausting proposition.
Junior Turner can no longer bathe, dress or use the toilet by himself, and he rarely feeds himself. He can’t roll over in bed on his own, and he can’t get out of bed or stand up from a chair without help. He seldom speaks. He still walks, and given a momentary lapse in supervision, he will wander into the street. Last summer, on an outing to the Walmart on Truxel Road, he somehow strayed from the family while Juanita, a grandson and one of Junior’s sisters stood in the check-out line.
“I looked around, and Junior is gone,” Juanita recalled. “I went to the manager and said, ‘I have an Alzheimer’s patient with me, and he’s gone.’ The manager says, ‘We’ll just call him on the PA system.’ ”
It wouldn’t have helped. Junior no longer responds to strangers. He doesn’t even know his name.
After a frantic search, the family found him outside, in the dark of the parking lot, trying to push a shopping cart across the street.
Two of the Turners’ children live in Sacramento and assist with their father’s care. Krystal, 45, who works for the state, moved back home in July to help her parents. Gregory, 53, who was laid off when the Campbell Soup plant closed, visits regularly. The Turners’ oldest child, Cheryl Ann, 54, a military veteran who lives in San Antonio, calls home every day.
They are losing their father. Juanita is losing the man she fell in love with when she was 18, working in the hops fields that predated Sacramento’s suburbs.
“It’s hard,” she said. “It’s hard for me to see him be like this. It’s heartbreaking. I never had to worry about anything, because he took care of everything.”
And now she has to do it all, by herself. She nodded, silent for a moment.
“The compassion for the guy I love – that’s why I keep him here,” she finally said. “I’m satisfied with him here with me, where I can watch him.”
No one would care for Junior like Juanita does.
Think of the brain during late-stage Alzheimer’s disease as an integrated circuit with its fine wires pulled out one after another – the connections broken and frayed, the output unreliable. For Junior Turner, the signals from the part of his cortex that tell him how to walk are not reaching the part of the brain that tells him how to stand. And the neural wiring of his frontal lobe, which controls speech, has largely unraveled.
“Sometimes, the information gets through, but the connection isn’t reliable,” said Dr. Charles DeCarli, director of the UC Davis Alzheimer’s Disease Center. “That’s why people can have moments. People who are very impaired can make statements that seem very connected.”
Junior sometimes greets his son with a cheery, “Hey, dude!” He’ll still occasionally answer, “Yeah!” when Krystal asks if he feels OK. But for the most part, he seems adrift and without words.
At the same time that the nerve cells in the Alzheimer’s brain are shrinking and dying, the neural networks that extend from one part of the brain to another begin to shrivel, and they become clogged with the disease’s characteristic plaques and tangles of toxic protein. Eventually, that damage spreads through the entire brain, with consequences that are inevitably fatal.
“It’s winter in the brain,” said DeCarli. “The way I think of the deterioration is: Stop talking, stop walking, stop eating.”
That deadly shorthand presents an escalating challenge for caregivers of the 5.1 million people struggling with Alzheimer’s in the United States. Many of them, like Juanita Turner, neglect their own health to make sure their ailing spouse receives care. She has two torn menisci in her right knee, and she’s in pain. A few years ago, she was scheduled for surgery, but there was a crisis: Junior became ill and required almost two weeks’ hospitalization before he was stable enough to go home.
She never got around to rescheduling her knee repair. When would she have time, now that he needs her so much more? How could she recuperate when she has Junior to feed and tend to?
“I just put a brace on,” she said. “I’d love to have the surgery done, but I can’t go in. I just go along day by day. I have a job to do.”
For a time, she put Junior in an adult day care program on weekdays. But on the Turners’ combined income of about $3,100 a month – more than half of it from Juanita’s Social Security payment and her pension from Campbell Soup – adult day care grew too expensive. In 2009, at Juanita’s request, the nonprofit Del Oro Caregiver Resource Center began sending out a respite care worker for four hours each week, at a nominal cost. Besides giving caregivers a break, the center’s social workers also assess them to make sure they’re not growing anxious or isolated, said executive director Michelle Nevins.
On Oct. 1, as Del Oro grappled with funding cutbacks dating to the recession, the center put the Turners’ respite care on hiatus.
Except for her family’s help, Juanita is on her own.
‘That boy’s out there’
She met Junior in Sacramento in 1956, working on the hops farms off Watt Avenue.
He was one of 13 children born into an Arkansas farm family. By the early 1950s, much of the family had moved west to Sacramento. Junior, who had a gift for patching up whatever got broken, finished the 11th grade, then went to work.
“He was a truck driver on the hops ranch, and I was a laborer,” said Juanita.
Juanita Hall was an only child who moved with her parents from Oklahoma to the San Joaquin Valley during the Depression. The family lived in Lemoore, and followed the harvest up and down the Valley.
Junior pulled up to the water fountain on the hops ranch one afternoon when Juanita, a pretty and talkative 18-year-old, was taking a break. Junior was a quiet person, but he was persistent. Soon, he took Juanita to the movies in Sacramento. When she and her parents went back home after the harvest, he followed.
“We woke up one morning in Lemoore, and he was out in his car asleep,” Juanita said. “He stayed all day and came back to Sacramento. He did that for quite some time. My parents would look out in the morning and say, ‘That boy’s out there.’ He showed up every couple of months.”
In the fall of 1958, another visitor made the long drive to Lemoore: Junior’s brother-in-law, who asked Juanita’s father for her hand on Junior’s behalf, because Junior was too tongue-tied to do so himself.
Three days after Christmas, Junior and his brother-in-law drove Juanita across the snowy Sierra to Reno, where the young couple married. When they returned to Sacramento, she was delighted to find that Junior had not only rented an apartment for them on South Avenue in Del Paso Heights; he’d also chosen furniture and housewares.
He worked in construction, joining Laborers Local 185. Eleven days shy of a year later, Cheryl was born. Two years after that, the Turners bought their first house, a tiny postwar home with a big yard off Grand Avenue, and Gregory was born. In 1965, Juanita went to work for Campbell Soup in South Sacramento, moving from seasonal work to the production line to the employee store before retiring from the company in 1997.
By 1975, the Turners – by then including Krystal – bought the roomy three-bedroom house where they still live in the Strawberry Manor neighborhood, blocks from the local elementary school and not far from Arcade Creek.
Junior was gone before dawn helping build Sacramento, and on the weekends, he worked on cars in the driveway or projects around the neighborhood. Everyone in Strawberry Manor knew Mr. Turner: He fixed things, and he’d always stop to help.
“My father was a neighborhood icon,” said Gregory. “He had a blue truck, and people remember him wearing his blue hard hat.
“For the kids on the street, he was the type of father who’d yell at them when they did something wrong. Nowadays, people don’t bother.”
Junior retired in the 1980s, but he kept working as a handyman. He liked to stay busy, and he liked to make sure that Juanita always had a recent model car in the driveway.
He was a thrifty person, yet nonetheless liked his poker games at Cache Creek Casino Resort. He smoked Marlboros until brand-name cigarettes got too expensive; then he switched to generic cigarettes. He did not complain, not even when he broke a foot while helping pave the old Macy’s parking lot in downtown Sacramento. He was a fount of quirky sayings.
“He always had something to say back to you,” said Krystal. “If I asked for money, he’d say, ‘I can’t buy a flea a wrestling jacket.’ I’d ask what he was getting me for Christmas, and he’d say, ‘Two front teeth.’
“There were so many sayings he had.”
He remained country at heart, a person of simple tastes. He drank hot Lipton’s tea instead of coffee and didn’t care much for pasta, fish or cheese. His children still laugh about how he always ate vanilla ice cream with a fork.
Now he eats whatever Juanita cooks. She throws it in a blender, because he won’t chew anything with a crunch. She whirs fried chicken or spaghetti into a puree and spoon-feeds him dinner.
Locked doors, hidden keys
“You could see the illness coming,” said Juanita. “You could see it a long way off.”
Partly, she said, that’s because Junior’s father, several sisters and an aunt all had dementia. In 2004, when Junior was 70, she asked his primary care physician to refer him to a neurologist. A brain scan showed that Junior had already had a transient ischemic attack – a “mini-stroke,” or temporary blood clot in the brain, possible evidence of the development of vascular dementia. The scan also showed that he had early signs of Alzheimer’s.
Researchers have long seen the overlap of the two conditions in the aging brain, and they know that African Americans are twice as likely to develop Alzheimer’s as they grow older, in part because of their vascular risk from high rates of hypertension, diabetes and high cholesterol.
“With African American and Hispanic families, their rates of dementia and Alzheimer’s are higher,” said Michelle Johnston, regional director of the Alzheimer’s Association. “These caregivers spend a lot more time caregiving.”
And so the long, slow slide began for Junior Turner.
One afternoon early in 2006, Junior drove his car to a friend’s house a few blocks away for a visit. At 3 a.m., a highway patrolman called to say he’d pulled Junior over on a road through the fields near Wasco, outside Bakersfield, more than 265 miles from home. It seems Junior had grown confused behind the wheel, so he drove until he ran out of gas, looking desperately for signs of something familiar in the dark, unfamiliar landscape.
The officer took Junior to a motel, and Juanita and Gregory headed down to get him.
The family took away his keys, but once or twice, he found the spare keys and Juanita and a granddaughter had to block the driveway with their own cars to keep him from taking off.
Junior would get up at night and wander, so Gregory installed new door locks and made sure his dad couldn’t find the key. He’d open the garage door, so Gregory put a lock on the garage wall that Junior didn’t know about. Finally, Gregory installed a security camera high in one corner of Junior’s bedroom, so Juanita could monitor Junior from the big-screen TV in her bedroom across the hall.
When he got upset and agitated, Juanita had him chew gum. It gave him something to concentrate on, she said: It soothed him.
“You have to use tricks,” she said. “We had to learn as we went along.”
As his dementia progressed, Junior liked to take things apart – loosening the frame of the family room fireplace, pulling the knobs off the stove control panel, taking down the shower door twice – but he’d forgotten how to reassemble what he’d undone. He removed the ball float from one of the bathroom toilets, and the toilet overflowed, flooding part of the house.
When Junior went to the market for cigarettes, he’d get his math confused and tell Juanita that the counter clerk had cheated him out of change. Eventually, he left the purchase of his cigarettes to Juanita. She stopped buying them. He didn’t notice.
In the early years, before 2009, there was still a lot Junior could do for himself, but Juanita had her hands full. Her mother, Earnestine Betts, had grown ill. Years earlier, Junior had remodeled Earnestine’s house in Lemoore with Gregory’s help, and Juanita and her mother remained close.
Now Earnestine had developed dementia, too, and she was declining physically. In 2006, Juanita moved her mother up to live with the family in Strawberry Manor. She died in July 2009, at age 89, in the Turners’ home.
“I miss her,” said Juanita. “But in your life, there will be somebody you love who goes before you. They go on, and we’re not in charge of that.
“God knew I couldn’t take care of two, so he took one.”
The disease, not the man
Early on, Alzheimer’s disease changed Junior. He’d always been easygoing and kind, a cooperative soul. But as his brain began to deteriorate, he became difficult – so difficult, Juanita said, that his neurologist prescribed not only Aricept, which can delay the onset of symptoms in some Alzheimer’s patients, but also Ambien, to help him sleep through the night, and Risperdal, an anti-psychotic generally used for people with bipolar disease and schizophrenia.
Always quiet, Junior became quieter. But he also became more likely to curse at his family when they told him he had to do something he didn’t want to do, like stay inside or go to bed. He broke his eyeglasses in half. Somewhere along the line early in his illness, he threw away his false teeth.
Junior lashed out physically at Juanita a few times, too.
“At first, he tried to pass blows,” she said. “I was cleaning him, and he popped me between the eyes. You have to be patient and understanding. But it was hard at first. Why would he hit me or say bad things?”
This wasn’t the man she’d known for half a century. This was his disease.
She took him off Ambien after it made him so sluggish during the day that he could hardly sit up, and she ceased the Risperdal, too, because she worried about side effects on his physical health. Though the Aricept gave Junior violent, thrashing dreams, he continued taking it for several years, because Juanita wanted to forestall the progress of his illness. Because of the dreams, they began sleeping in separate rooms.
He has faded in fits and starts.
In 2009, not long before Earnestine died, Junior was hospitalized with bleeding, Juanita said, and doctors found spots on his lungs. He couldn’t have chemotherapy, because his blood platelet count was low, and internal bleeding was a risk. But he was in the hospital for 11 days, and he’s been incontinent since, using adult diapers.
He was hospitalized with pneumonia a year ago. That’s when he stopped eating solid food and stopped feeding himself, except for rare occasions.
“I’ll get up in the middle of the night and give him water or move him,” said Juanita. “You have to figure it out. I’ll get him a little applesauce.
“You don’t know if they know what’s going on around them. You have to be kind and gentle, because you don’t know what he’s feeling.”
Until the past year, Junior could sit for hours in his favorite lawn chair in front of the garage, watching the day unfold. He still likes to go outside, but Juanita won’t let him go unaccompanied. Left alone in the fenced backyard, he puts leaves in his mouth. Left by himself in the front, he disappears down the street.
The only prescription he takes now is blood pressure medication. Once a month, a Medicare-funded home health nurse comes to check on him.
Waiting for a smile
Junior Turner’s long journey through Alzheimer’s comes down to this: letting his days quietly unfold while waiting for the inevitable worsening of his disease.
Juanita wakes him in the morning and asks how he’s doing. Sometimes, he smiles up at her.
“We wait for that smile,” she said.
She cares for him day and night. She strips his wet sheets in the mornings. She changes his diapers, gives him a sponge bath and, with Gregory’s help, showers him at night. She rubs his fragile skin with lotion. She watches over him as he wanders slowly, so slowly, from room to room, going nowhere. Sometimes, he gestures with his hands, as if he’s miming what he did on his construction job, measuring and adjusting.
“You’ve got to keep him active,” Juanita said. “He’s not gone yet.”
He stops walking in the house only when he gets to a door frame or wall or the hide-a-bed. Then he leans his head forward against whatever stopped him, worn out. He won’t go into rooms that Juanita blocks off: It doesn’t take a closed door to stop him, only a small stool set inside the doorway. He’ll pick his way carefully around any dark-colored area of the patterned living room rug, as if it’s a gaping hole.
She puts him down for naps on the family room loveseat, which she protects with diaper pads. Sometimes, she’ll put him in the car and head to the McDonald’s drive-thru. He likes the french fries.
“I take him and ride him around,” she said.
On Sundays, she dresses him in a suit for services at Victory Temple Pentecostal Church off Del Paso Boulevard. Some of the church members come by the house to visit, giving her a break from caregiving. On Sundays, they help get Junior out of the car at church and make a fuss over how nice he looks, and he seems to enjoy their attention.
Only when he’s bedridden and too ill for her to help him any more will Juanita consider moving him to a care facility, she said. The average cost of private skilled-nursing care in California is more than $91,000 a year, according to the California Department of Health Care Services. Adding up their small pensions and their Social Security checks, the Turners’ combined annual income is about 40 percent of that amount.
“Paying for a nursing home would totally take us apart,” said Juanita. “I’m not on any program to cover the Pampers situation, either. It adds up.”
So she relies on her faith and her family to help her go on, day after day, caring for the man she loves.
“I don’t know how she does it,” said Krystal. “She’s definitely a strong woman. I ask her, ‘What do we do if something happens to you?’ And she says, ‘Put him in a home. You won’t have a choice.’”
‘The vows I made’
On a bright fall morning, Gregory was sitting with his father in the kitchen, and he reached out and carefully took Junior’s atrophying hands.
“You ready?” Gregory asked. Junior’s attention seemed to be elsewhere. Still, a huge smile spread across his face. He held tight to Gregory’s hands, even when Gregory tried gently to pull his hands away. Then Junior tugged back, and Gregory resisted, gently wrestling with his dad’s hands. They play this game every time Gregory visits, and it’s clear that Junior loves it.
“It’s like he’s saying, ‘I’m still the man in the family,’ ” Gregory said, and Junior looked up directly into his eyes, grinning. Then he made a soft, happy sound.
“You’re right about that,” Juanita said, smiling.
At night, when Gregory showers his father and helps get Junior ready for bed, they go through their hand-wrestling game. And then all three of them – Junior, Juanita and Gregory – stand by Junior’s hospital bed and hold hands while Juanita says a prayer. She prays that Gregory will be able to find work. She prays that Krystal and Cheryl and their children will be safe and happy. And she prays that God will hold Junior in his hands.
“Alzheimer’s takes and takes, little by little, until it takes it all,” she said.
She doesn’t like to dwell on what comes next in Junior’s long decline. But she knows that he’s where he should be for now, at home where she can tend to him and make sure he’s comfortable.
“This is my husband that I’ve been married to for 50-some years,” she said. “According to the vows I made before God, I’d honor him in sickness and in health. This is part of the vows I made.
“I love him, and I think he loves me, too. This is my life partner. He’s disabled. I stood by him when he wasn’t disabled. I want to stand by him as long as I can.”