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

November 01, 1987|LARRY DOYLE | United Press International

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.

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