Longer life for mentally disabled brings complications

Chicago Tribune

September 23, 2007

Josephine Grabowski did not expect, at age 86, to be pulling herself precariously out of her wheelchair to change her son's soiled bedsheets.

In fact, she did not expect her son Frankie, now 48, to be alive at all. When her son was born, Grabowski's doctor informed her that "Mongoloid" children like hers did not live past their teens.

But as medicine advanced and home care improved, thousands of developmentally disabled baby boomers like Frankie Grabowski are outliving their elderly parents for the first time. The life expectancy of a Down syndrome child in the 1930s was less than 10 years. Today, it is nearly 60.

Nationally, there are 682,000 people 60 and older with developmental disabilities, and that is expected to double to 1.3 million by 2030, according to researchers at the University of Illinois-Chicago.

"It's an incredibly bleak picture," said Charlotte Cronin, executive director of the Family Support Network of Illinois, a statewide grass-roots advocacy group. "This person with significant disabilities - all they know is mom or dad. That's all they've ever known. And they can't talk, or the information they share makes no sense" to others.

For this reason, Josephine Grabowski's biggest hope today is that she outlives her son - a hope that teetered last week as she entered a hospital, suffering a bad reaction to antibiotics she took for a bladder infection. She predicts her son will fall into deep despair if she dies before he does.

"I know no matter how good the nursing home is, they won't do for him like I do," she said in a voice congested and weak from fighting a cold. "He will die from a broken heart and loneliness."

Although the doctor recommended the Grabowskis put their son into an institution, she and her late husband, Jerome, decided they would care for him in their modest home in a Chicago suburb. Now, Josephine Grabowski, with severe arthritis, congestive heart failure and painful fluid buildup in her legs, is still her son's primary caretaker.

"We are looking at a terrible financial hardship for parents," said Dr. David Braddock, Coleman-Turner chair and professor in psychiatry at the University of Colorado School of Medicine. He was the founding head of the Department of Disability and Human Development at the University of Illinois at Chicago. "It's a very daunting thing - to have to be a caretaker when you yourself might need support.

"This is a challenge that is going to grow for older caretakers in our society as our nation ages. It's going to affect virtually all developed nations in the world."

But Josephine Grabowski said she does not regret deciding to care for Frankie herself.

Their home is dotted with lacy curtains and family portraits that point to happier times, including a shot of Frankie beaming in a suit and tie after his First Communion.

In his those days, Frankie would spend hours holding a battery-powered radio to his ear, set to a station as fond of Lawrence Welk as he was. He would giggle as he chased after plastic balls in the house. On sunny days, he would sit on the front steps and wave to neighbors.

Several afternoons each week, mother and son would drive to a McDonald's for a hamburger and fries drenched in ketchup. Frankie held court in the restaurant, shaking hands with staff and customers. At the grocery store, he would try to hug and kiss the cashiers in the check-out line.

When he napped during the day, his mother would head to her garden, where she would lose herself as she pulled weeds and tended her flowers.

"I was just a housewife," she said. "I took care of my family."

In a similar spirit, Terri Coglianese, 70, has cared for her younger brother, Charles "Titos" Sanchez, 69, ever since their parents died in the early 1960s. Sanchez, too, has Down syndrome.

"We would never put him in an institution," she said, tearing up. "He's my baby."

But his care became increasingly complicated over the years, first with the loss of sight in one eye, then after he fractured his hip in December. Sanchez must now wear diapers, he was no teeth and he is terrified of getting out of bed.

Family members say he "understands everything," but his communication skills are limited. It took his loved ones a week to realize he had a fracture because Sanchez never complained about the pain. He simply refused to walk.

For now, Sanchez remains bedridden in a nursing home in Park Ridge. Coglianese, who works full-time as a human resources administrator, plans to take him home once he regains his mobility.

"You are going to walk, right Titos?" Coglianese said softly to her brother in Spanish.

"Si!" he answered brightly.

To be sure, not all adults with disabilities face the same sort of challenges Grabowski and Sanchez face. Braddock said the vast majority of people born with Down syndrome today, assuming access to treatment, service and support, experience mild to moderate cognitive disability.

"They are able to live a productive life," he said.

But Josephine Grabowski's day-to-day life offers a glimpse of how precarious care arrangements can be - even with outside medical and social service assistance. She or a part-time nursing assistant changes Frankie Grabowski's bedsheets an average of 18 times a day. Late last fall, he developed a toothache. Unable to express what was wrong, he banged his head against the wall for hours, leaving marks. His mother arranged for him to be sedated and carried to a dental clinic by ambulance. He had to have four teeth extracted.

Still, with the help of Jenny Howard, a social worker from the Adult Down Syndrome Center at Advocate Lutheran General Hospital in Park Ridge, Grabowski has come up with a plan for Frankie's care. She has signed the necessary paperwork so that her son will move to a nursing home when she dies.

Two years ago this August, Josephine had a heart attack as she walked to her bedroom one night from the washroom. An older son staying at her house was able to get her help, and today she describes her heart attack in almost-glowing terms.

"I felt peaceful," she said of her five-day stay at Our Lady of Resurrection Medical Center. "It felt so good, just sleeping. If this is the way it is when you die, I'm not scared. I'll catch up on 48 years of needing sleep."