Alzheimer's patients lose touch with reality, memories, loved ones
By David Zizzo
Published: November 21, 2006
They had been like that all day, sitting on the couch — Jackie's eyes shut, his head on Rose's shoulder. In their minds, forever together.
"She thought he was her husband, Pierre," Suan Grant said. "He thought she was me."
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Until that day, Suan Grant had struggled to remind Jackie of the life he and Suan had lived together: meeting in Jackie's native Jamaica, falling in love, marrying, surviving civil unrest there and moving to Florida. But a wall had grown around much of Jackie's mind, and Suan was on the other side.
"They were lost in a world of Alzheimer's," Grant said of Aubrey Anthony Grant — her husband's real name — and of Rose, another patient at the nursing home. "That was a world I could not enter, and they could not leave."
Alzheimer's disease, a progressive brain disorder that gradually destroys a person's memory and ability to learn, reason, make judgments, communicate and carry out daily activities, is the most common form of dementia, according to the Alzheimer's Association. An estimated 75,000 Oklahomans suffer from it. And thousands who love and provide care for those patients suffer, too.
"You just sit there and watch them disappear in front of your eyes, memory by memory, inch by inch," said Grant, who now lives in Oklahoma City.
There's no stopping the disease either, said Mark Fried, regional director of the Central Oklahoma Alzheimer's Association. "The disease is going to end in death."
Alzheimer's victims usually are seniors, but the disease has been known to strike some in their 50s or 40s. Or younger.
Fried knew one woman who was 29 when she was diagnosed with the disease. She had a 2-year-old son at the time.
"Her biggest fear was that she was going to walk into Wal-Mart, she was going to forget she was with her child, and she was going to walk out," he said. The woman has since moved to another state, he said.
Alzheimer's is "like taking an eraser to the mind," Grant said. In time, many patients revert to a world of their youth, often jumbled with confusing imaginings.
"They end up sort of taking a trip back in time," Fried said.
Caregivers are left to wonder what era a loved one is experiencing in their mind at any given time. When one patient began searching for "Judy," Fried said, his caregiver called the man's sister looking for clues.
"We had a cocker spaniel named Judy when we were growing up," the sister said.
Alzheimer's enters on cat's paws — a memory disappears, a thought trails away, a sentence goes unfinished. One day, the person will experience brief but extreme confusion, Grant said, "then nothing will happen for maybe months." The incidents seem unrelated.
"That eventually changes," she said. "Then you have total confusion."
Occasionally, there will be "little windows" of clarity when the patient is lucid and sharp, a cruel reminder of what once was.
"That makes it very, very difficult," Grant said.
An Alzheimer's diagnosis is shocking and painful for loved ones as well as the patient. Grant said she was devastated and went into denial at first.
As patients' minds slowly slip away, caregivers often try to drag them back, pleading for loved ones to remember lives and their place in them. Grant recalls going through that phase. She would separate Jackie from Rose, who thought Jackie was her husband, Pierre, the man she met in a World War II German concentration camp.
Grant tried to jog memories Jackie no longer had. It only caused both patients to become confused and agitated, she said. Rose "would cry and fight me for Jackie," Grant said. "Jackie would keep watching for her."
These days, experts encourage caretakers to "live in the moment" with Alzheimer's sufferers, wherever their minds are.
"Go with them on the trip," Fried said. "It could be very interesting."
That's the realization that eventually came to Grant. She began to role play with Jackie. Whether it was a scene with family back in Jamaica, or a time from childhood, Suan went along.
"How was school today?" she would ask Jackie. "I was just going with whatever he thought I was, whoever he thought I was. It was the lesser of two evils."
In Jackie's mind, the role of Suan had already gone to Rose. The real Suan eventually came to accept that, too, and on her visits she treated the two as a couple.
"Why would I deny them the comfort?" she concluded. Besides, she decided, "It was very sweet. She was looking after him."
Despite the pain and loss, a diagnosis of Alzheimer's doesn't mean life comes to an abrupt end.
Ponca City residents Sue Lunsford and her husband, Ray, who was diagnosed four years ago with Alzheimer's, are making the most of the time they have left together.
The Lunsfords still enjoy attending college sporting events, although Ray headed off alone into the crowd of 80,000 at a recent University of Oklahoma football game. A friend, familiar with the disease because of a family member's Alzheimer's, recognized Ray and helped him and Sue reunite.
"I wasn't in a panic," Lunsford said. "I knew we would find him."
Ray, 74, who retired from working with oil-field seismograph equipment, was always a hands-on kind of guy. That he can no longer fix everything around the house is "very frustrating," Sue Lunsford said. Because his thoughts sometimes take a few minutes to be completed, Ray talks little these days, Sue said. He walks with an "Alzheimer's shuffle" and has to be reminded of simple tasks.
Her mother was an Alzheimer's patient, so Lunsford, 66, a retired clinical social worker, has had "more experience with it than I hoped to." And her father, who cared for her mother and went on to become a leader among local caregivers, "was a wonderful role model."
That means Lunsford knows her husband will slip further and further away before the end comes.
For Rose, the end was probably hastened when she could no longer live in the moment with her beloved "Pierre." Her family moved her to another state, Grant said. She died about six weeks later.
For the next two years, until Jackie died in 2003, the real Suan continued to visit and spend time with him. But she remained on the other side of the Alzheimer's wall.
"He would walk the halls and peer in every room for Suan," she said.
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By the numbers
• 75,000 Oklahomans live with Alzheimer's.
• 1 in 3 American families are affected by Alzheimer's.
• 4.5 million Americans live with Alzheimer's.
• By 2025, 9 million Americans will be living with Alzheimer's.
• Elderly spousal caregivers with a history of chronic illness themselves who are experiencing caregiving-related stress have a 63 percent higher mortality rate.
• Family caregivers who provide care 36 or more hours weekly are more likely to experience symptoms of depression or anxiety.
Alzheimer's Association
To learn more
Online:
• Institute for Aging and Dementia, New York University: aging.med.nyu.edu/about.
• National Institute on Aging:www.nia.nih.gov/
Alzheimers.
• Alzheimer's Association:www.alz.org.
By phone:
• Central Oklahoma Alzheimer's Association: 319-0780.
• Alzheimer's Association: (800) 272-3900.
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