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Families learn to say goodbye to the dying

  • Story Highlights
  • Reaction to a person's terminal illness varies from outright denial to openness
  • People's personality don't change in final days because of terminal illness
  • Family members left with grieving issues if patient died without resolving issues
By Madison Park
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(CNN) -- Two weeks, the doctors estimated. That's how long they expected Lillie Bradley to live after an infection spread to her pancreas, liver and bile duct.

A person typically does not change dramatically after learning of his or her impending death.

A person typically does not change dramatically after learning of his or her impending death.

Her grown twin daughters delivered the news to their ailing mother: An infection in her bile duct was killing her.

"She took it very calmly," said Mary Yucis, one of the twins. "We could tell she was slowing down. In her mind, she was ready. At 89, she was ready. She took it very calmly and even with us crying. She told us not to cry for her, because 'Now, I'm going to be happy being with your father.' "

After learning that death is nearing, some people avoid talking about the inevitable.

"They're not interested -- it's too emotional," said Don Schumacher, the president and CEO of the National Hospice and Palliative Care Organization. "One of the things I've learned over the years, people don't change their basic personality or who they are as people because of a terminal illness. If you're a denier, you may deny. If you're angry, you might be angry."

Others have the opposite reaction. They accept their looming death and make extensive plans of what kind of flowers they want at the funeral and who should take care of their pets.

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Actress Farrah Fawcett, who has had a public battle with cancer, recently asked her longtime companion, Ryan O'Neal, "Am I going to make it?" He responded, "Yes, you'll make it. And if you don't, I'll go with you," the actor recounted to People magazine.

Even as they received bad news about how her cancer had spread to her liver, O'Neal said, Fawcett showed "courage" and "a quiet dignity."

"Farrah never changed. I fell in love with her all over again because of how she handled this," he said.

Elizabeth Edwards, who is fighting a public battle with breast cancer while raising two children with former North Carolina Sen. John Edwards, talked Tuesday with CNN's Larry King about the difficulty in preparing them for life without her.

"I try to organize their [kids] lives so that they will have signs of my presence and memories," said Edwards, whose daughter asked to take a birthday trip with her. "I still want to give it to her even though I think it's going to be a hard -- a physically hard thing to do."

The reaction to a person's critical illness can vary from outright denial, to aggressiveness to complete openness, said David Casarett, associate professor of geriatric medicine at the University of Pennsylvania School of Medicine. "There's a huge spectrum. Everyone handles this a little differently."

His book, "Last Acts," which will be published this year, explores the choices people make when facing a terminal illness.

"The common perception is that facing our deaths will cause us to change in fundamental ways," Casarett said. "People face circumstances in different ways. Some people do change. Other people don't."

Yucis and her twin sister, Marion Eith took care of their mother inside the Gibbstown, New Jersey, home where four generations of the family lived.

"We talked a lot before. My sister and I were at her home every day," Yucis said. But when she and her sister moved in to take care of her, "it was different. It was like idle chitchat before, but now it was more in-depth."

Like Bradley, some people, who were once reticent, open up to share stories and feelings in their last days.

Most of the time, they want to focus the time on meaningful activities, said Schumacher, a psychologist. Some choose to spend time with their grandchildren; others want to be left alone. One dying man spent his last days planning a budget for the next fiscal year, surrounded by spreadsheets and piles of paper, Casarett said.

But the final days or weeks can become more uneasy when the wishes of well-meaning family members and friends conflict with the patient's.

"Family members often interact with a person who is dying, very gingerly, very gently," Casarett said. "They're afraid to mention death, funeral plans or anything that might upset the patient. That hesitancy is very well-meaning. You don't want to cause distress to someone who is dying. But that causes difficulty for patients who want to be open and want to talk about their will, about who gets the furniture and their funeral plans. ...The patient is locked in his or her world without anyone to talk to except for hospice and health care providers."

When communication breaks down in a hospital, a psychologist or a social worker may become involved to facilitate better conversations and find common ground.

"What I do is figure out what's the family's usual communication pattern in the past, how they dealt with previous stressors," he said. "You try to go to that place so you can have conversations about things that are meaningful. Families get a great deal of reminiscing, sharing fears and worries with each other."

Despite her mom's impending death, the mother-daughter relationship opened up, Yucis said.

Bradley, who had lived through the Great Depression and World War II, "never talked about her past life, her growing up," Yucis said. In the final months, "she went through a whole life review. We learned different things -- how compassionate she was and how she loved her children."

The twin sisters learned that their no-nonsense mother who raised six children had baked goodies to give to police officers and nuns during the holidays. "By bringing Mom home, it gave us an opportunity to know Mom in a different light," Yucis said.

Bradley made extensive plans, writing down the music and outfit she wanted to wear at her funeral.

"I don't think you're ever prepared for death of the parent," Yucis said. "Even though we knew she was dying, all we wanted to make sure was she was where she wanted to be."

On June 5, 2008, at 8:15 a.m., Bradley died in her two daughters' arms at her home.

Unlike Bradley's situation, there are cases where individuals die without ever acknowledging their impending death or stating their wishes.

"Some people die without ever talking about it, never saying goodbye, never saying to the family what their life has meant to them," Schumacher said.

Some families come to bereavement support to talk about issues they want to discuss or resolve before the death of a loved one.

"It's not the dying," Schumacher said. "It's unresolved issues with the living -- that's what's so hard to overcome."

He asked these family members what they need to do to say goodbye. What makes most sense to them? But if the dying patient does not want to talk about certain things, "You always honor the person with where they are," Schumacher said.

Many die without ever accepting what's happening to them. Some expect to go through the five stages of grief in sequential order -- denial, anger, bargaining, depression and acceptance.

"Death doesn't wait for us to come to terms with it," Casarett said. "Because those five stages are so well-known, there's an expectation, I'm going through the stages of denial, and then finally I'll get to acceptance. They're waiting for that. ... I don't want that to be what they're focusing on. I ask who's important to them. Let those stages take care of themselves."

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