Roberto Anderson, a Stone Mountain businessman, sensed trouble when his wife, Malinda, didn’t come out of the ladies room. They’d ducked into a hotel in Havana to check email and freshen up. He asked a female hotel worker to check the bathroom. Malinda wasn’t there. Roberto didn’t know it, but at that moment she’d already crossed a busy intersection and boarded a bus for another part of Havana, a sprawling city of 2.1 million people.
Malinda, just 60, suffered from Alzheimer's disease. Roberto was her primary caregiver. The trip to Roberto's native Cuba was intended in part to be a respite from the stress and strain of six years of living with her diagnosis.
Instead, her disappearance triggered an Alzheimer’s caregiver’s worst nightmare: a loved one wandering the streets — alone.
“It was devastating,” Roberto recalled. “I was searching everywhere.”
Frantic, Roberto called the police and immigration authorities, and enlisted friends to join the manhunt. An Atlanta native, Malinda spoke no Spanish. And Roberto knew that she might not even be able to tell an English speaker where she’d been.
Finally, after 12 agonizing hours, the couple was reunited.
Malinda had ridden by bus to a transfer station, and then boarded another bus to a remote village 45 minutes from Havana.
She followed a woman and her two children to their home. The woman called the police when Malinda followed them inside.
“It was a scene,” Roberto recalled. “Townspeople were all around her — this lost American. She knew she was the center of attention. But when I asked her if she knew how she got there she said, ‘No.’ ”
Tough decisions set in:
Malinda Anderson is one of 5.4 million Americans — and about 120,000 Georgians — living with Alzheimer’s, but those numbers are expected to increase dramatically as the nation’s 78 million baby boomers age. Researchers believe one in eight boomers, the first of whom began turning 65 this year, will be diagnosed with Alzheimer’s. As boomers age, nearly one in two will be diagnosed with Alzheimer’s by age 85.
Anderson is entering the advanced stages of the disease, which slowly destroys the brain’s connective tissue. People with Alzheimer’s decline slowly, at first. They might lose glasses or forget phone numbers. In later stages, they suffer from severe confusion and may not be able to recognize family members, talk or even smile. Science has helped patients improve some memory function, but not stop the disease’s irreversible destruction of the brain.
Anderson first noticed symptoms around age 54, when the diagnosis is considered to be early onset Alzheimer’s. About 5 percent to 10 percent of people with Alzheimer’s develop the disease before 65, in which case the causes are likely hereditary.
The condition develops when a protein called beta-amyloid sticks to brain pathways. In most people, the body clears beta-amyloid from the brain. But for some, the process breaks down and the proteins build up, become toxic to brain cells, and cluster into plaques that interrupt normal brain function.
Most people survive an average of about 10 years after an Alzheimer’s diagnosis. But some live as long as 20 years. An early diagnosis gives doctors more time to try to slow down the disease, and patients more time to make choices about how to live.
University of Tennessee women’s basketball coach Pat Summitt made national headlines in August when she disclosed early onset Alzheimer’s at the age of 59 and said she planned to coach for as long as she was able.
Once diagnosed, an Alzheimer’s patient faces a series of difficult choices about their care, all with implications for spouses, family and loved ones.
Should they stay at home? Move to assisted living? Nursing homes are another choice. How will a patient’s caregiver — often a spouse — manage the care and balance it with other obligations such as work?
The constant care required by a spouse or loved one is debilitating. The stress is constant. Sixty-one percent of caregivers report high levels of emotional stress, according to the Alzheimer’s Association.
And then there is the financial toll. Outside care can be expensive, and mounts over time. The average lifetime cost of care for a person with Alzheimer’s is $174,000, according to the Alzheimer’s Association.
Roberto Anderson said he knows at some point he might need to put Malinda, his wife of 32 years, in a nursing home.
“We might be getting close, but I am not there yet,” he said. “I just couldn’t do that to her right now. She needs me too much.”
A ‘shocking’ realization:
Ortrude White, a Harvard-educated architect, wears a silver bracelet on her left wrist engraved with her husband’s telephone number.
White, 68, won’t leave her home in Inman Park without it. At night, she leaves it by her bedside table.
For months earlier this year, a recurring nightmare filled White with terror. The jumbled scenes repeated themselves: She stood alone, surrounded by walls, trees, buildings she didn’t recognize.
The bracelet ended the nightmares. On mornings she feels foggy, she grabs hold of it.
Two and a half years ago, White’s brilliant mind started unraveling. The woman who depended on figures for her livelihood could no longer add or subtract.
In 2009, she was designing a new house for a returning client. It should have been easy. But suddenly the drawings were baffling. And then one day, she became alarmed when she couldn’t do basic math.
Worried about his own seemingly faltering memory, her husband, Myles Smith, suggested they both get tested for dementia at Emory Alzheimer’s Disease Research Center.
Smith passed.
White struggled. She had trouble connecting the dots on a sheet of paper. Counting backward by sixes in timed sessions was difficult. She puzzled over drawing the hands of a clock, a tell-tale sign of Alzheimer’s.
But the tests weren’t the only clues to White’s condition.
White’s mother died of Alzheimer’s at the age of 89, and likely lived with the disease 10 to 15 years. Alzheimer’s also killed her aunt, her mother’s sister. Her grandmother also presumably died from the progressive brain disease although it was never officially confirmed.
White’s family history put her at risk, but it also made her proactive about her health as an adult. She exercised regularly, did yoga and watched everything she put in her mouth, sometimes eating broccoli for breakfast.
“The diagnosis was shocking,” said Erika Gonzales, her daughter.
“My mom is the picture of health. She eats antioxidants and fruits and vegetables and has always been so careful about what she eats. Growing up, a granola bar was our special treat.”
Retirement dreams:
In contrast to Malinda Anderson, White is in the early stages of Alzheimer’s. She doesn’t require intensive supervision and can still enjoy many activities with her husband of 29 years, including a passion for dancing.
Her first difficult moment came around the time she was diagnosed. At her own request, she underwent a driving test at Emory.
She awaited the results in an Emory office. When she got them, she threw a pen across the room. Her reflexes were too slow and she wasn’t hitting the brakes fast enough.
“Just the thought of being dependent on people, I was so angry,” she explained.
She taught watercolor classes, and tutored children at a nearby elementary school. She loved shopping for bargains at boutique clothing stores or spending hours at Target. Now, she wouldn’t be able do those things on her own.
White’s diagnosis forced some bigger decisions. Would they continue to live at home? Would they travel, as they had planned to do in their retirement?
In May, they trekked along the rugged coast of northern Italy. White fell twice while walking the steep hillside. The falls didn’t hurt her seriously, but they emphasized how the disease was slowly asserting itself.
White and her family have seen little decline since the diagnosis. Dr. Allan Levey noted that while the disease may progress quickly for some people, it can go relatively unchanged for several years for others.
“Obviously, no one would want their loved one to be diagnosed because it’s a disease that is going to get worse over time,” said Levey, who is chair of the department of neurology and the director of the Emory Alzheimer’s Disease Research Center.
“But people who take on this journey with a good attitude and are focused on things they can do to enjoy life, stay active and socially engaged, especially in the early stages ... are going to do much better.”
Confusion, repetition:
Roberto Anderson, 58, looks back at the early stages of his wife’s disease wistfully.
“We are transitioning,” he said, “from connecting to pretty much 24 hours a day of confusion.”
Malinda Anderson, a former project manager for IBM, now struggles with basic every day tasks. She recently poured herself a glass of vinegar, thinking it was juice.
During the earlier stages of the disease, Anderson could leave notes for his wife letting her know where he was and not to worry. But now, it’s difficult for him to break away, even for a moment.
“I was recently working in the backyard at our lake house,” said Anderson. “I was just in the backyard. She could have seen me from inside the house. And when I went back inside in the house, she was crying and she said, ‘Why did you leave me? How could you do this to me?’ She was beyond shaking. She was falling apart. I felt terrible.”
She doesn’t sleep well at night. She often asks, “What are we are doing tomorrow?” over and over. She’s also lost more than 20 pounds during the past four months. Roberto Anderson is concerned his wife can no longer recognize her hunger.
“She says she’s full and won’t eat even though she hasn’t eaten anything,” said Anderson, who recently got her doctor to prescribe an appetite stimulant.
On a recent afternoon at Red Lobster, Malinda was jovial, enjoying her shrimp, happily sharing the story about how she and her husband met years ago at a laundromat in Greenville, S.C., not long after they graduated from college.
In an interview, she shared a story about how she knew six years ago something was not right. A mathematician and one-time college-level math professor, she kept forgetting about scheduled conference calls for her job at IBM. She also starting getting lost driving home. But many family members dismissed the forgetfulness as part of menopause.
“They kept saying to me, ‘You look fine. You are just fine,’ ” said Malinda. “But I knew myself, and I knew something was not fine.”
Over the course of an hourlong interview, she repeated the story five times.
Coping with progression:
Alzheimer’s has taken a heavy toll on Roberto. He went to the hospital twice with severe stomach cramps while vacation in Puerto Rico in September. The first episode was so severe he had to lie on the floor at the airport in Puerto Rico. The doctor couldn’t find anything wrong with him. He returned to the hospital less than 48 hours later. And that time, he got a diagnosis: “extreme stress.”
“You think you can handle it all,” he said. “And you can cope. But that was a wake-up call to what was happening to me. ... I realized I needed to take care of myself.”
Roberto is part of two Alzheimer’s support groups. He said talking to other caregivers comforts him. He’s learned coping mechanisms and what to expect as the disease progresses.
He recently hired a nurse who not only helps take care of Malinda while he is working, but also takes care of her three nights a week.
Roberto said the quiet helps him cope. But it’s also a practical issue because his wife won’t go to sleep without him when he’s there, and she goes to bed about 8 p.m.
Malinda’s lengthening spells of dementia have become gut-wrenching for her husband to watch.
“I look at her speaking gibberish, and going through her pocketbooks for hours and hours,” he said. “She is caught in a maze. I see her caught in a maze going in circles for hours, and I could cry.”
Anderson said his faith gives him strength.
“People say you need patience. You would need supernatural patience to deal with this [disease],” he said. “And that supernatural patience can only come from my faith. It’s my faith, my faith that tells me what I am doing is right, that there may be some good that comes out of this that keeps me going.”
Some foggy days:
While Ortrude White still has many good days of waking up and feeling eager to go, she has some days when she wakes up confused, disoriented. An impeccable dresser, some days she can’t decide what to wear. She may put too much water in the coffee maker or forget to put in the grounds.
On these days, she turns to her husband and tells him, “Myles, I am feeling foggy.”
Sometimes they cancel meetings or appointments, and she goes back to bed. Most of the time it just passes.
White’s daughter, Erika Gonzalez, recently shopped with her mom at DeKalb Farmer’s Market, the chilly, enormous place her mother has navigated countless times. But her mom was more timid this time, and when Gonzalez suggested they get some meat, her mother got nervous.
“I can’t do the meat counter. I don’t know how to do that,” she told Gonzalez.
White is also sometimes slower making emotional connections. When Gonzalez has called her mom, crying, her mom can’t fully grasp her feelings.
“It was like she didn’t have much to respond with,” Gonzalez said. “But recently it’s been a little better. It’s as though she’s thinking, ‘Someone is upset, and I am going to respond.’ It just doesn’t come naturally.”
Gonzalez said she’s had to redefine the relationship.
“Clearly it’s spotty and there are days she connects better than others. ... But she is still there. And deep in there, some things essential don’t change.”
White and Smith have taken several steps aimed at improving the quality of life they have left. They have taken an Alzheimer’s workshop. They have joined support groups. They have started seeing a therapist to talk about the need to be patient with one another and ways to keep their sex life intact.
They don’t waste time trying to change what they can’t. For now, that means finding ways to connect with one another every day.
On a recent sunny and warm October afternoon, the couple grabbed their sun hats and walked around the tree-lined streets of Inman Park holding hands. When they passed a house with booming rap music, White shook her shoulders and feet to the beat.
“It’s hard for me to answer questions about how I’d feel down the road,” she said. “What I know is what I know now,” she said.
And then she looked at her husband.
“I know I want to spend a lot of time with him.”
Holding on:
For many years, the couple has had a cocktail hour ritual. While White cooks, Smith surprises her with a drink — a margarita, a martini, whatever. He used to give her the cocktail to sip while preparing dinner and then retreat to the computer. But White recently asked him to stay with her in the kitchen.
“We need to make the most of this time we have,” she told him.
In recent months, White has stopped eating wheat and has been taking nutritional supplements, including omega-3 fish oil, as recommended by her nutritionist.
She believes it’s helping keep her Alzheimer’s stable. Dr. Levey said there’s no convincing evidence that nutritional supplements help patients with Alzheimer’s, but he believes this is one of many areas in need of additional research.
Smith is dubious of the special diet.
“I just think it’s nuts,” said Smith on a recent afternoon. “Well, no. I don’t think it’s nuts.”
“Yes, you do think it’s nuts,” said White. And then with a slight pause between each word, she speaks resolutely.
“As long as I am independent enough to make my own decisions, I am going to do so.”
The couple has struggled over whether they should move into an assisted living center.
They worry about the costs of assisted living and leaving the community in which they are so embedded. For now, they have decided to stay put.
“It doesn’t seem fair to move Myles into a senior home,” Gonzalez said. “But he has already made it clear he would move there with her.”
Smith said he realizes he and his wife are fortunate financially. They have their pensions and many years ago they invested in long-term care insurance. But he still worries it will not be enough to cover what could be many years of care.
Yet, when the sun rises, he tries to focus on the day ahead. On a recent afternoon, the two discussed going dancing at the Knights of Columbus.
And then they decided not to wait. They moved aside the coffee table. They thumbed through the playlist on their iPod — music from the ’60s, ’70s, ’80s, country and pop, rock, classical. They dance all styles — the waltz, jitterbug, swing dance.
They settled on a few Willie Nelson songs, followed by a slow dance.
How we got the stories:
In addition to reading myriad reports, websites and research findings on Alzheimer’s, reporters Helena Oliviero and Gracie Bonds Staples spent the last four weeks interviewing more than three dozen Alzheimer’s patients, caregivers, advocates, doctors and medical researchers.
Key sources included Dr. Allan Levey, director of the Emory Alzheimer’s Disease Center and chairman of the department of neurology at Emory’s School of Medicine; Ken Hepburn, associate dean for research and director of graduate studies in the Nell Hodgson Woodruff School of Nursing at Emory University; Kevin M. Lynch, assistant professor of insurance at the American College and certified financial planner; and Eric J. Hall, founding president and chief executive officer of the Alzheimer’s Foundation of America.
We want to express our appreciation to the Alzheimer’s patients and their families who generously opened up their homes and their lives to our reporters and photographers for extended periods of time over the course of several days, so our readers could get a better understanding of what it means to live with the disease.
Support:
The Alzheimer’s Association, Georgia chapter, sponsors 32 support groups for caregivers in metro Atlanta. The meetings typically meet once a month and last about one and a half hours. The groups are led by a facilitator. The meetings are free. Here are a listing of some of the support groups. For a complete listing go to www.alz.org/georgia
Marietta
10:30-11:30 a.m., first Monday of the month. Aloha to Aging Inc., 4608 Lower Roswell Road, Marietta, 30068. Contact Dawn Reed at 678-777-724.
Duluth
7-9 p.m., second Thursday of the month. Sugarloaf United Methodist Church, 1795 Old Peachtree Road, Duluth, 30097. Contact Suzanne Walker at 770-513-0761.
Atlanta/Buckhead
1-2:30 p.m., second Thursday of the month. Second Ponce de Leon Baptist Church, 2715 Peachtree Road NE, Atlanta, 30305. Contact Moira Keller at 404-605-1950.
Atlanta/Emory
4:30-5:30 p.m., third Wednesday of the month.
Glenn Memorial UMC (on the campus of Emory University), 1660 N. Decatur Road NE, Atlanta, 30307. Contact the Rev. Susan Pinson at 404-634-3936.
Please call the contact person before attending any group to confirm place and time.
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