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When Mom or Dad will die: What to tell the kids?

For two years, Chris Morris had dreaded this conversation - the one where he would tell his two young boys that their mother was going to die of breast cancer.

He'd read whatever advice he could find and had even asked the staff of Peter's Place, a program for bereaved children, for help. Nothing felt right to him and, on the day he decided he had to tell them - their mother was already in an inpatient hospice - he spent hours reading and thinking. Here he was telling kids who still believed in Santa Claus that their mother was dying. Would they ever get over it?

He started with Mick, the 9-year-old who never let people see him cry. "There are a lot of different cancers in the world," Morris said. "There are some cancers that doctors can help and there are some cancers that doctors can't help, and Mommy has one of the kinds that doctors can't help." Even after years of watching his 44-year-old mother getting sicker, Mick looked surprised. Morris forced himself to keep going. "Mommy is probably going to die from this," he said.
Mick ran to the bathroom and Morris could hear him crying. He had wanted so badly to be strong for the boys, but he started crying too.

He went to Vance, the 4-year-old, and told him a simpler version of the story. "The doctors can't help Mommy. . . . Mommy is going to go to heaven." Vance "absolutely melted down." They all cried.

"It was the worst feeling I've ever felt in my life," Morris, whose wife died in August 2010, says now. "That was harder than when she actually passed away."

I asked Morris, who lives in Radnor, and other parents to discuss their experiences with "the talk" because I had felt the same way about telling my sons that their father's brain tumor was fatal. Of all the miserable tasks cancer brought us, nothing was worse than deciding how to balance the bad news with hope and normalcy, than worrying about how their father's death and the way we handled it would change the men my boys would become.
Like Morris, I read articles but found them unsatisfying. They told me to be honest because my sons, at 12 and 16, would sense the truth. But it didn't feel right to tell them what I knew all along: glioblastoma is incurable. I didn't give the really bad news until it was probably obvious.

Later, I wondered if this wasn't just one more aspect of dealing with cancer that leaves a lot of us feeling guilty and inadequate.

Thousands of people face these decisions each year - 3.5 percent of U.S. children have experienced the death of a parent - and medical advances have actually made things more complicated. Cancers that used to kill quickly can be contained longer now. What's in doubt is the timing.

Natalia Volz, a mother of three in Swarthmore whose husband died of pancreatic cancer last December, told me she wished she could have gotten advice earlier in the process. "Each of us has to navigate it for like the first time," she said.

I recently found articles online to see if they were as useless as I remembered. Some made more sense now, but I could see why they hadn't resonated. They seemed sucked dry of emotion, presented without adequate recognition that, at a time when parents feel shattered and terrified themselves, the idea of inflicting this awful knowledge on children seems almost unbearable. It is hard to find the words, and that is the focus of many articles. But, for me, the real problem was finding the courage to say them without falling to pieces.

Michele Perloff, of Elkins Park, whose husband died of colon cancer in May, asked a family counselor to tell her children as her husband was approaching hospice. "I guess I needed her help to say what the truth was," she says now. "We were all completely hysterical in the office."

My husband and I told our sons immediately that he had brain cancer and about his surgery, radiation and chemotherapy and how they would affect him.

But we didn't talk about prognosis - a median survival then of 12 to 14 months - and they never asked.

As I lay awake crying night after night, I agonized over how to help my sons.

My husband was a fan of TV detectives and it seemed that sociopaths who had lost a parent were on every show. However unlikely that outcome was, I saw years of therapy riding on how my sons handled the destruction of the secure childhood we had worked so hard to provide. I thought about all the things they would miss: how it had been comforting to call my 84-year-old father when Jeff was diagnosed, how we would feel at their graduations and weddings, how Jeff wouldn't be around to be the sweet, playful grandfather his own dad had been.

I knew what a burden it was for me to carry my husband's impending death with me every second even if I was still able to work, cheer at soccer games, and laugh at jokes. This was Ph.D.-level coping and I didn't want to ask my kids to do it too.

I took their lack of questions, their focus on their friends and schoolwork, as a sign that they didn't want to know. They wanted their "normal" life as much as I wanted it for them.

But what if I was wrong? What if they weren't asking questions because their fears were too big for words? What if, by not telling them everything I knew, I was condemning them to private terror that sharing could relieve?

The story unfolded in pieces. I told my older son we'd have to consider his father's illness when he chose a college. The summer after senior year, I told him he couldn't take time with his father for granted and made him turn down a job at a distant summer camp. On his first winter break from college, I told him the whole story. In January, not long before Jeff entered hospice, I told our younger son there were no treatments left and his father would die.

Jeff died less than two months later, in March 2010, 2½ years after his diagnosis.

The other parents I talked to struggled as much as I did.

Volz and her husband waited a week after his diagnosis to say anything so they could digest the news themselves. Their three children knew he was sick.

When she got home from school one day, their 11-year-old daughter said, "What did Dad learn today when you met with the doctor?"

"We're going to talk to you about it," her mother said.

"That's not good. I can see it on your face," Alena said. "Does Dad have cancer?"

Volz said yes. Alena asked if he would die. Volz feared the kids wouldn't trust her later if she lied. "Dad's a fighter," she answered. "We are going to the best doctors in the country. We are learning everything we can. We are going to do everything we can and, yes, there is a chance that Dad will die."

Volz drew the line at telling her daughter what that chance was. Their surgeon had said that 95 percent of such patients die in a year. She was sure her husband would be in the other 5 percent. "For me to say he was definitely going to die within two years, I didn't think was fair, because there wasn't any guarantee. . . . There was just a 95 percent chance."

Through the 20 months of their father's illness, Volz kept the children informed. But when a hospice social worker told them the end was near, Alena seemed surprised.

"I was shocked," Volz said, "that it felt like she was hearing it, not for the first time, but almost."

Laurie Carroll befriended Volz after her husband, a cancer researcher, was diagnosed with pancreatic cancer around Thanksgiving 2009. Their daughters attend the same school. The Carrolls, of Wallingford, told their daughters, now 12 and 8, that the doctors were doing everything they could to make Daddy better. "If my daughter had asked me right out, 'Do you think he's going to die?' I would have said, 'I don't know,' " Carroll said.

She planned to tell the girls he was dying when he started hospice. He got promising results from an experimental treatment, but, in September 2010, he felt sick and went to the hospital. Just after she called the girls to wish them good night that evening, a doctor told Carroll that her husband had a problem that would kill him within hours.

"I chose not to call my children back," Carroll said. "My husband did not want them there at the hospital to watch him die."

The next morning, a friend brought the girls to the hospital. "Is Daddy going to die?" Carroll's oldest asked. "I had to say he was dead already. It was horrible, horrible, horrible, horrible."

Carroll thinks she did the best she could. "I feel guilty for not preparing them, but then I'm not sure I wanted to spend the year with them knowing."

Frank Reale, of Warminster, gave his four children a lot of reassurance when he told them that their mother could die of leukemia. "I'm not going anywhere," he told them. "If anything does happen, we're still going to be a family. We're going to be in our house."

Like the children of the other parents I interviewed, my sons are doing well now. We're all very much the same people we were before. Sadder and lonelier, but also wiser and more appreciative of the kindness of others and the grace of accepting help.

As much as I feared saying "Daddy is dying," those conversations weren't as bad as I'd imagined. I cried. We all learned it was OK to cry.

From their current vantage point, a year and a half after their father's death, my sons say they would have liked more information earlier. From my current vantage point, I think we all could have handled it.

What I couldn't have known then is that I turned out to be stronger than I thought, and so did they. Sometimes the bravest thing is to admit you're afraid and the strongest is to admit you feel weak. Then you keep going. Children are not too young to learn that. If any of us made mistakes, they came from love. I trust the kids will understand that as well.

Source: Health News , By Stacey Burling "Inquirer Staff Writer."

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