Alzheimer’s Care-Givers: 36-Hour Days Without End

Marie remembered her rhymes.

Even after she no longer knew the names of her children and could not recognize her grandchildren, she recalled the verses she had learned as a child more than 75 years before.

From her nursing home bed, she would joyfully recite them, her eyes far away, perhaps in a place where she was still a little girl skipping rope:

Baby your mother

Like she babied you

Back in your baby days.

Kathleen Siegle was not one of Marie’s babies. But in the first years after her mother-in-law was diagnosed with Alzheimer’s disease, it fell upon Kathleen to baby Marie.

To feed her, to clothe her, to clean her, to busy her, to watch her and to keep her from harm.

And to take care of Brian, Andy, Teresa, Danny and Donna, then aged 12 to preschool.

And to pursue her graduate studies in nursing.

And to have the evening meal prepared when her husband, Tom, got home from work.

“After dinner, Tom would take his mother for a walk,” Siegle said. “That was my respite.”

It was finally too much. Facing another summer of the children at home and Marie’s distress at having all these little strangers running around, the Siegle family decided to institutionalize Marie in 1982.

Last February, Marie died of pneumonia at age 84.

Looks Back and Wonders

Siegle, now director of nursing at the Baptist Retirement Homes of North Carolina, looks back and wonders. Although her medical training helped her understand the illness and made her aware of available resources, she wonders whether her professional credentials helped much in the end.

“I’m not so sure it made my 36-hour day any shorter,” she said.

That 36-hour day is numbingly familiar to the millions of family members caring for those with Alzheimer’s disease, a still-mysterious illness that robs its victims of memory, personality and, in time, the simple mental capacity needed to control bowel and bladder movement.

For the victim, perhaps fortunately, the knowledge of being ill also eventually becomes a forgotten memory. But for the victim’s wife, husband, daughter or son, the 36-hour day ends only to begin again.

The hours pass slowly: The Alzheimer’s victim climbs the stairs all night, wanders away and gets lost, runs the water or turns on a stove burner and forgets, and sometimes becomes violent.

And the hours pass lonely: Friends fall away, the afflicted spouse or parent changes from a companion into an empty shell.

Nancy Mace, co-author of “The 36-Hour Day” and a gerontological psychologist with the Johns Hopkins University School of Medicine in Baltimore, has studied Alzheimer’s care-givers extensively, but she is the first to admit that she will never be the best authority on the subject.

“It is difficult to imagine what it is like,” she said, “without experiencing it.”

Statisticians can cite the numbers if not the experience. And, as unempathetic as totals and averages tend to be, these make a convincing case for a desperately large problem.

“Losing a Million Minds,” a recent report from the congressional Office of Technology Assessment, estimates that there are 2.5 million Alzheimer’s victims in the United States today. As the aging population grows, that number that will probably double by the year 2000, and quintuple by 2040.

The 539-page report also estimates that the financial costs of caring for Alzheimer’s patients was $40 billion in 1985. Contrary to what some might think, about 90% of that care was either rendered or paid for by family members. It added up to more than a $20,000 annual expense for some families.

Given that the average Alzheimer’s victim will live seven to 10 years with the disease (and then, like Marie, often die of something else), most Alzheimer’s care-givers are faced with the possibility of destroyed savings and financial ruin.

And that is just the monetary equation.

“We don’t know very much (about care-givers),” Mace said. “But what we know is that these people need help.”

$40-Million Study

President Reagan, for his part, has declared November National Alzheimer’s Disease Awareness Month. And Congress has authorized $40 million to study the feasibility of adult day-care centers and other outpatient support services for Alzheimer’s victims and their families.

It is hoped that this “respite care” can offer practical and economic relief to care-givers, perhaps delaying the entry of their loved ones into nursing homes already overcrowded with 750,000 Alzheimer’s patients.

Behind this burgeoning political movement is the Alzheimer’s Disease and Related Disorders Assn. (ADRDA), a Chicago-based organization with 174 chapters nationwide and more than 1,000 support groups for families.

In the past seven years, the ADRDA has been responsible for much of what Americans know about Alzheimer’s disease, as well as the catalyst and often the money behind many of the research programs devoted to the disease.

But the group, whose slogan is “Easing the Burden, Finding the Cure,” is intensifying its focus on the former.

“We know, despite our research efforts, that (finding) a cause and a cure for this disease is probably still a generation away,” said Jerome H. Stone, ADRDA’s philanthropist founder and chairman. “In the meantime, we have to remember we have millions of families struggling with the reality of Alzheimer’s every day, 36 hours every day.”

To a large extent, ADRDA chapters and support groups help. They keep the care-givers informed. They allow members to share their experiences, to know that they are not alone in their struggle, their anger and their guilt. But the care-givers can only help each other only so much.

“It’s not enough that the care-givers care; we know they care,” Stone said. “Everybody has to care.”

Stone speaks from 17 years of experience. His first wife, Evelyn, died of Alzheimer’s disease in 1983. She suffered from the illness for four years before being diagnosed in 1970.

“The doctors said she was going through a change of life,” he said. “At the time, it was so frustrating, so little was known about the disease. It didn’t start appearing in the dictionaries until a few years ago.”

Stone’s financial position--he is former chairman of the Stone Container Corp. and director of several major industrial companies--shielded him from some of the pressures faced by Alzheimer’s care-givers. But his burden was genuine and his case not unusual.

Like a third to a half of care-givers, Stone was a spouse. Daughters and daughters-in-law are typically the care-givers when the spouse is unavailable.

In his late 50s at the time, Stone was close to the average age of a care-giver, 57. About 10% of care-givers are more than 75 years old.

And like many of the care-givers he has sought to help, Stone struggled at the beginning to accept his wife’s condition.

“In early stages, the Alzheimer’s patient is almost like a normal person, except for lapses of memory, and sometimes repetition of phrases,” he said.

But eventually, the disease progresses and the 36-hour days begin.

“We call it that because you’ve got to be there all the time,” he said, “even during our normal sleeping hours, because the Alzheimer’s victim does not know the difference between night and day and may very well get up in the middle of the night and get dressed or not dressed and go outside.”

“It’s difficult, as they get worse, to realize you’re losing them.”

The stories of Alzheimer’s care-givers all seem to fall into place in a larger story, as if they are part of the same and singular experience.

Care-givers speak of that first moment of recognition. For Kathy Lester of Jacksonville, Fla., it was driving down a familiar stretch of highway with her husband Jim, a retired naval officer. He turned to her and said, “I hope you know where we are, because I’ve never seen this road before.” Jim died seven years later at age 63.

For Nancy Lombardo of Detroit, it was during preparations for her wedding 20 years ago.

“My mother just couldn’t seem to put anything together, get any of the wedding details straight,” Lombardo said. “And my mother was the greatest organizer of all time.” Lombardo’s mother has been in a nursing home for the last 13 years.

Care-givers speak of their frustrations in the beginning, of trying to find out what was happening to their loved ones. Diane Young of New Orleans remembers wanting to know what it meant when her father was diagnosed with Alzheimer’s disease.

“All I can tell you is, it’s the same disease that Rita Hayworth has,” the doctor told her. Young’s father died in 1983; Hayworth died last May.

Care-givers speak of their frustrations now, of the constant media output of genetic breakthroughs and new treatments and other advances--some of the reports exaggerated, and all of them too late.

“There have been ‘cures’ everywhere all over the country,” Lester said. “You have to have hope, but when I read something in the paper or see it on the 6 o’clock news, I don’t really believe it anymore.”

“It’s obviously way too late for my mother, so it is frustrating,” Lombardo said. “But what can you do? You have to hope.”

Caretakers also speak with humor and sadness of odd incidents and unusual behavior, of shoes put in the refrigerator and moments of non-recognition.

Kathleen Siegle remembers the day her son was on the porch, folding papers for his route, when Marie came into the kitchen and announced: “There’s a strange boy out front, and he won’t go away.”

Young remembers bathing and dressing her father, leaving him to put his shoes and socks on. “I went in there one day and he was just standing in the middle of the room holding the socks, and I said, ‘C’mon, Daddy, put your socks on,’ and he just stood there and said, ‘I don’t know what to do with them.’ ”

They speak of the isolation.

“We lost our friends one by one,” Lester said. “The friends we had, it was hard for them to come around or go out to dinner when there was only one of us who could talk.”

And they learn to cope.

“You figure out you have to get the mail before they do or you might not see it,” Lester said.

But ultimately, they speak of the pain of losing a loved one who is still there.

“My mother hasn’t recognized anyone in 13 years,” Lombardo said. “One of the big heartbreaks for my brothers and myself was that by the time we had children, she was so far gone that they never got to know her.

“It’s like she’s in a coma, only she’s awake. But she looks beautiful. Her hair is still black, with just a little gray, and she doesn’t have any wrinkles. Her skin is smooth as silk.”

And inevitably, the care-givers, burdened and pained by their loved ones’ suffering, admit to the feelings they have all had.

“We used to pray that my dad would die,” Young said. “You can tell somebody they shouldn’t feel guilty about it, but they still feel guilty about it. You get to the point where you wish something would happen to them just so you could sleep through the night.”

Scant research exists measuring the physical and emotional tolls of care-giving, but the little available information suggests that stress-related illnesses, high blood pressure, and alcohol and prescription drug abuse are not uncommon among spouses and daughters struggling to make it through the day.

“The entire family becomes a second victim of Alzheimer’s disease,” Mace said. “The care-giver has no social life, none, no free time, no sleep, and it’s no wonder they get sick.”

Barbara Gibbon, of Michigan State University in East Lansing, is trying to look at this problem closer. Along with her physician-husband, Charles, she has embarked on a 2 1/2-year government-funded study of 250 Alzheimer’s victims and their families.

Her preliminary findings reaffirm what one would expect, with a notable and reassuring exception.

“We’re seeing they’re fatigued and very stressed, yes,” Gibbon said. “But we’re also seeing them very resilent and very intense about the care their spouse is getting. They’re not burning out as fast as you would think.”