Hearts broke worldwide as Nancy Reagan laid her head on the flag-draped casket of her husband, former President Ronald Reagan, little more than a week ago.
For those who care for people with Alzheimer's disease as Nancy Reagan did, her gesture was especially poignant. They know firsthand just how difficult the disease is and the weariness it engenders. They also know the stress the illness places on caregivers.
"When I first heard about Alzheimer's disease, I thought that to me it was worse than cancer," said Rosemary Davis, 74, of Stockbridge. Her husband, Granville, was diagnosed with Alzheimer's in 2001. "Now that I've been through it, I understand why they say Alzheimer's has two victims - the caregiver and the patient."
Alzheimer's, which afflicts about 4.5 million Americans a year, has long been one of the most devastating of medical diagnoses. In recent years, doctors and therapists have begun stressing the need for health care for the caregivers of Alzheimer's patients, too.
More than half of all caregivers report major depression at some point in their caregiving, and 80 percent report high levels of stress, according to the Alzheimer's Association. Caregivers also are at greater risk for suicide, doctors and therapists said. Loneliness, fatigue, sadness, fear and anger are routine.
R.L. "CoCo" Bright, 55, who has been taking care of her grandmother, Bertha Nuby, for 12 years, eventually realized she had to take better care of her own health to take care of her beloved "Nonnie," who raised Bright.
Bright, who is 6 feet tall, reached 400 pounds. She had diabetes and heart disease.
"It was all I could do to just slither out of bed every day and lay on the floor and pray," she said. "I couldn't even get on my knees."
Yet the needs of Nonnie still had to be met. A cup of orange juice for Nonnie before she got out of bed, followed by a breakfast of oatmeal or cheese toast. Then, a bath for Nonnie, diapering and dressing. Giving medicine. Getting her settled into a soft seat in the den with a TV tray next to her for water. Then lunch, nap, diaper change and walk, just around the house.
The need for time off
When Nonnie lost her ability to speak, Bright learned to read body cues. With a glance, Bright can tell if Nonnie needs water, or if it's nap time. She can never leave Nonnie alone.
When Bright's health began to fail in 2001, she underwent gastric bypass surgery. She has halved her weight. She also has become a devoted exerciser, running in mini-marathons, lifting weights and practicing aerobics. She has learned to ask for help, and she takes advantage of sitters provided by the Alzheimer's Association. Those measures have helped her take better care of Nonnie, 90, and herself, she said.
"I have to give back to her," Bright said. "She comes first and foremost. But I have to take the time out."
Dr. William McDonald, associate professor of psychiatry and J.B. Fuqua Chair in Late-Life Depression at Emory University School of Medicine, has begun counseling caregivers. "The person who suffers much more is the family and the caregiver," he said.
McDonald said in two decades of practice, he's lost two people to suicide. Both were caregivers for Alzheimer's patients.
In both suicides - husbands whose wives had Alzheimer's - the breaking point seemed to be when the wife stopped recognizing the husband, McDonald said.
"It was clear that to sit and watch a loved one lose that recognition was a turning point," McDonald said. "And I just missed it."
In both cases, the men had taken care of all the financial details for their wives, tidied up other issues and then took their own lives.
"In one case, he tied his wife up in a chair so she wouldn't wander, left a note and went out to the barn and shot himself," McDonald said. The second also was a shooting.
The experiences changed him, McDonald said.
Feeling overwhelmed
Most Alzheimer's cases are diagnosed in the early stage of the disease, when "there is still a lot of living to do," said clinical social worker Susan Peterson-Hazan of Emory University's Alzheimer's Disease Center. Alzheimer's patients generally live from five to 20 years after diagnosis, and they may live in the first stage for many years.
They progress from the mild stage, where the ability to manage finances and balance a checkbook are impaired, to moderate, where patients get lost easily and begin to lose longer-term memory, to severe, where bodily functions fail and most patients do not recognize family members except on rare occasions.
Some patients may stay in the first stage for several years and then decline rapidly. Throughout each stage, the relationship between caregiver and patient changes.
For Rosemary Davis, the transition was abrupt. She believes her husband may have had Alzheimer's much longer than she and doctors realized. Her husband, who is 79 and a retired club car attendant for the old Sante Fe Railway and later Amtrak, was always forgetful, she said.
"He always wore a hat, but when we'd go out, he'd always lose it. I'd have to keep up with it."
But then he started getting lost a lot. He took a trip to Los Angeles by himself, against Rosemary Davis' protests, in early 2001.
"After he'd been out there about eight hours, he called me. He said he'd just now found our phone number. He had thought his phone number was his credit card," Rosemary Davis said. Granville Davis didn't know where he was and couldn't tell his wife. Police finally found him on a bench in Los Angeles, eating a sandwich.
Granville Davis roams the house all night. He turns on all the lights. He opens all the windows. He has bowel movements on himself and the furniture. He doesn't know his wife. He has shriveled from a hulk of a 200-pound man to a bone-thin 130 pounds.
"It's very hard because you have no one to talk with. I talk to him, and he won't answer. He just sits there with his hands folded in his lap," said Rosemary Davis.
Rosemary Davis, a cancer survivor, is healthy but aging. Often, she feels exhausted.
"From day to day, you don't know what it's going to be like, but, oh those nights," she said. "I'm up three or four times a night."
She prays a lot, she said, and tries to count her blessings. Their home in Stockbridge is paid for, they have no bills. She's in good health. She also tries to find humor in the bizarre situations. Even so, she sometimes feels overwhelmed.
"There are times I feel like I need to take a gun and end it all for both of us," Rosemary Davis said. "Of course I'd never do it, but you do think about it."
Bright also credits her faith in sustaining her - and the knowledge that she is giving back to someone who devoted much time and energy to her.
"She's everything to me," Bright said. "I can do this because I've seen it before. She was an innate caretaker; she did it for me."