A balancing act of care

Carole Kelley intimately knows the geography of her children's scars; not just the marks left from a bout of chicken pox or a tumble from a bike, but those where doctors once inserted Caitlin's feeding tube and where Shannon had her colon surgery. She can point them out like countries on a map.

Many families find themselves dealing with a tragedy. The Kelleys of West Newton have suffered a stream of life-altering calamities. Carole's husband, Mark, 51, has end-stage kidney disease. His doctors say people live with the condition for decades, surviving through dialysis, but already he has endured the partial amputation of his left foot and the loss of a toe on the right.

The two youngest of their four children, 21-year-old Shannon and 18-year-old Caitlin, have special needs -- Shannon has Down syndrome and Crohn's disease, and Caitlin is developmentally disabled. The family also includes two other children, 23-year-old Sarah and 22-year-old Ryan, who are both living at home.

As the primary caregiver, Carole, 55, has to choreograph an intricate dance of differing dietary needs, medical appointments, and medications, on top of the conventional details of family life -- her job as a cafeteria worker at Newton North High School, Sarah's graduation from Pine Manor College, Caitlin's prom, paying the household bills, making sure the family's two dogs have food and belly rubs.

For balancing all of this, people have called Carole an angel, a saint, and a martyr. But that's too simple. Angels don't get angry or depressed, or cry with frustration. They probably have tidier houses and never argue.

Tired truisms

Carole has an easy laugh and a talent for reassuring small talk with strangers -- nurses, other parents in the waiting room of a hospital, the students she sees at work. But there are things about this life that eat at her. The well-intentioned but unsolicited advice about how she should care for her children. The jabs about her spotty housework from people who don't realize what it's like to spend all day at a hospital, only to collapse from exhaustion onto the first soft surface she finds.

She's heard just about every maxim there is about suffering. That "God only gives you what you can handle," that she'll "come through this a better person." It all rings hollow.

"I don't believe that God would do this to a person," she said. "A lot of people say to me, 'How do you do it? I'd be long gone by now.' But I have to do it. I've never been a suicidal person."

There are days when Carole feels besieged on all sides, when she feels like she can't keep up with all the needs of three sick people. Carole suffers from depression, and she admits that sometimes she does the bare minimum of the required tasks around the house. That can make her feel guilty.

Kathy Siemionko, who works for Springwell, a private, nonprofit agency in Watertown that offers supportive services for caregivers like Carole, said these feelings are common. Caregivers can be so preoccupied with their loved ones that they don't ask for help when they themselves need it.

"When you go on an airline, the steward will tell you, if you're traveling with a child, to put the oxygen mask on yourself first and then take care of your child. And often the caregiver must take care of themselves in order to care for another person," said Siemionko.

Rejected kidneys

Carole and Mark met in 1979 as coworkers at the now-defunct Waltham Hospital. Carole was a nurse's aide; Mark was an orderly who never missed an opportunity to joke with her as they passed in the hall. They married on May 16, 1982.

On Feb. 24, 1986, they found out Mark's kidneys had failed.

Dr. Henry Yager, Mark's kidney specialist, said there was little warning of his condition. Kidney failure had been silently trying to kill him, perhaps for years.

Mark began dialysis almost immediately and was put on the list for a kidney transplant. The next year, he got a kidney from his brother. It lasted two years before being rejected by his body. Then it was back to dialysis -- and the waiting list for a new kidney.

In 1994, he got another kidney, this time from a deceased donor. But in 2001, it was rejected.

"It's pretty common for people to lose kidneys at 5, 10, or 15 years," said Yager.

Since then, Mark has had three dialysis treatments a week, four-hour sessions where his blood is drawn through a machine and cleansed of impurities before being recirculated. His worsening condition forced him to stop working last year.

"Mark is a very stoic guy. He doesn't express emotion very much. And he deals with these things amazingly well," said Yager. He is also full of praise for Carole, whom he calls "amazingly resilient."

"I think some people are born to be caregivers, and she's one of them."

Troubled births

At the time of Mark's diagnosis, Carole was seven months pregnant with Shannon. She was in the hospital after being diagnosed with toxemia -- a potentially fatal complication. Doctors decided to deliver the baby early, and during the second day of labor, Mark's condition worsened and he was also admitted to the hospital.

When Shannon was finally born that May, it wasn't immediately apparent that she had Down syndrome. "For two weeks, I didn't know," Carole said.

Carole decided to quit her job as a nurse's aide, which she loved, and become a cafeteria worker at the high school, allowing her to be home in the afternoons and during school vacations.

Caitlin was born in 1988, a beautiful baby who, in medical terms, "failed to thrive." Tube feeding helped her gain weight, but her mental development lagged, and she didn't walk until she was 27 months old. She was also born with her femurs turned inward, a condition that was surgically corrected when she was 5. She spent most of her early childhood going in and out of the hospital. Today she is a shy, glowing 18-year-old, but her mental age, her mother said, hovers around 7.

Shannon is a tomboyish brunette, happiest in a T-shirt, running shorts, and her ever-present backpack. Since being diagnosed with Crohn's, a disease in which the body attacks its own digestive tract, she's been hospitalized several times and receives weekly drug infusions. The nurses in Newton-Wellesley Hospital's Infusion Clinic are like extended family to the Kelleys -- many of them also treated Caitlin when she was younger and using a feeding tube.

Meals are complex routines for Carole. Four different versions are served: a high-calorie one for Caitlin, so she can gain weight;, another without dairy or bulky grains to better control Shannon's Crohn's disease; another specially prepared one for Mark; and a "normal" one for herself, Ryan, and Sarah. Sometimes she's dealing with opposing diets. Caitlin, for example, is encouraged to eat ice cream because it's high in calories. But for Shannon, who loves ice cream, it's forbidden, because it irritates her digestive tract.

Sarah, 23, graduated from Pine Manor College in May with a degree in accounting. Ryan, 22, is working as an insulation installer and planning to attend college in the fall, after an earlier false start. Both are living at home and share some of the responsibilities of caring for their sisters and father.

Carole said she sometimes fears her children are in denial about Mark's condition. But in some ways, it's just the opposite. All of the children dote on their father, realizing that each moment is precious. Sarah, along with Mark's childhood friends, put together a huge surprise benefit that raised enough money to pay for a laptop computer for Mark -- one of his remaining links to the world -- and staved off a foreclosure on their house. But the family's Jeep was recently repossessed, and Carole's not sure how, or if, they'll get it back.

"I look into the future and wonder what will happen to us. It's been 21 years that Mark's been sick," Carole said in one of her darker moments. "He's not getting well."

But despite the family's difficulties, life is not totally bleak. Carole said that if she could wear a sign every day to preempt some strangers' questions about her life, it would sport these words: "It's not as bad as you think."

Down syndrome, for example, has not dulled Shannon's sense of humor, reflected in her favorite retort to stupid questions -- usually said with a note of perfectly tuned sarcasm: "Duh!"

Once, Carole recalled, she was asleep upstairs when Mark needed help going to the bathroom. She couldn't hear his shouts, and he ended up calling the home phone from his cellphone.

"He's calling for help, and calling for help -- he even left a message on the answering machine -- 'I need help, I need help!"' Carole remembered, laughing. "And finally I answered the phone, because it kept ringing. And he said, 'Doesn't anybody answer the phone around here? I need to go to the bathroom!' And I said, 'Oh -- I'll be right down!"'

Stephanie V. Siek can be reached via e-mail at ssiek@globe.com .