When the Diagnosis is Serious
What do you tell your kids when you get really sick?
May 1, 2000 (Berkeley, Calif.) -- When physician Wendy Schlessel Harpham went to the hospital with severe back and leg pain in the fall of 1990, she faced a devastating diagnosis: non-Hodgkin's lymphoma, a cancer of the lymph system.
A few hours later when Harpham's husband Ted returned home from the hospital, he, too, faced a difficult situation: what to tell the couple's three young children, who were then 6, 4, and not yet 2 years old, about their mother's illness, sudden hospitalization, and absence.
When parents fall ill -- if only with a bad cold, the flu, or a strained back -- caring for young children becomes challenging. A serious illness, however, presents not only the practical dilemma of how to keep the day-to-day logistics going, but a host of psychological challenges, as well. What should you tell the children? When do you tell them, and how much?
The Harphams told their children the truth right from the beginning. In the book she subsequently wrote, When a Parent Has Cancer: A Guide to Caring for Your Children (HarperCollins, 1997), Harpham emphasizes that telling the truth is necessary "to establish and maintain a bond of trust."
"Your sons and daughters need to be able to believe you, their parents, in order to grow up into adults who, in turn, can trust others," she says. "With the added stress and uncertainty of your illness, being unfailingly honest gives your children assurance in a sea of uncertainty." Her book comes with a companion volume for children and provides resources along with detailed information and an inspiring message.
Telling the Truth
Those who work closely with children agree that telling them the truth as soon as possible is crucial. Marlene Wilson is program coordinator for Kids Can Cope, a Kaiser Permanente-sponsored program designed to support children through the "life stress" of a parent's serious illness. Children from 3-1/2 to 19 meet weekly in groups of about 10, often for periods up to six months or a year. Through activities and play, a therapist helps children open up about their feelings. And when one child does, it often stimulates the others to share similar thoughts or feelings. But Wilson does not allow children to participate in the program unless they have been told the truth about their parent's illness.
"Sometimes parents are fearful of telling the child because they think the child will be overwhelmed. But when there's a delay, or if it's a family secret, the child builds up resentment. So on top of the shock or dismay, you also have anger. The child says, 'Why was I left out? Don't you trust me enough with this information? I have a right to know.' " If they are not told, children as young as 4 and 5 will pick up on the tension in the household and have these reactions, says Wilson.
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Joan Hermann, LSW, a social worker at Fox Chase Cancer Center in Philadelphia, has supplied advice on the subject to the American Cancer Society's web site (http://www.cancer.org). She says that children who suspect parents of concealing something often imagine that the problem is even worse than it is because it's "too awful to be talked about." In addition, when a child is left out, she adds, he or she will feel isolated from his parents at a time of tremendous stress.
But how to begin? The approach depends partly on the child's age (see How to Talk to Children When a Parent is Ill) but should always be couched in terms of "love and hopefulness," says Harpham. She told her own children that "everything possible was being done to make her better and they had good reason to hope that she would be fine."
Despite several recurrences of her disease, Harpham has most recently been in remission for almost two years, and her children are now 15, 13, and 11.
When the News Is Really Bad
Even when a parent's prognosis is really poor, Harpham believes it is still possible to speak truthfully. If a child asks a parent if he or she is dying, a parent can answer truthfully that "I'm not dying right now. Many people with this kind of cancer die, but some people get better. I'm doing everything possible to be one of the people who does great." Even in very difficult situations, she writes, parents can show their children how to "hope with acceptance."
Wilson tries to stay tuned to the condition of parents of children in her program; when a parent's death is expected within a week or two, she begins preparing the child to say good-bye. "I usually tell them that the doctors and nurses have tried everything, and even though their mom or dad wants to live, it seems like they're going to be going soon. Often a parent is so sedated at that point, two-way communication is impossible, but I urge the child to say good-bye. If a parent is in a coma, I explain that people in comas can still hear what is said and it's important to say good-bye."
Along with telling the truth, parents need to reassure their children that they will continue to be cared for no matter how family routines may change due to the illness. Parents must also let their children know that their illness is not contagious, nor was it caused by anything the child did, says Jeannie Brewer, MD, a physician (and WebMD medical editor) who was diagnosed with multiple sclerosis (MS) when her children were 6 and 2-1/2 years old.
"I had to tell them over and over again that they could not catch MS from me, that it wasn't like a cold that people catch from one another," she says. She also had to reassure them that the injections she gave herself were not so bad "because it's different when you're a grown-up."
As Brewer slowly returned to her usual activities -- driving, exercising -- she continued to reassure her children with words like, "See, I'm getting better."
Along with honesty and reassurance, parents should watch for signs that their children are not coping well. These signals, according to Wilson, include a prolonged change in mood or personality, decreased appetite, withdrawal from friends and family, acting out at school, or somatic complaints such as headache or stomachache.
"Duration and intensity are the key here," she says. "All children may have some of these symptoms for a while. But if it continues too long or interferes with daily functioning, then it's time to be concerned." Occasionally a child may imitate some of the symptoms of the sick parent, and that, she says, is a bit more serious.
Parents who need additional information or help with their children should talk to their doctor or pediatrician, or contact the social service department of their local hospital for referrals to social workers who specialize in helping families cope with illness. Children are often reluctant to attend initially, but after the first meeting they usually enjoy it. Wilson says a typical reaction to her program by young children is that it's "fun." A 7-year-old recently reported that the weekly group meeting had "taken a lot of stress off of me."
Christine Cosgrove is a writer based in Berkeley, Calif., whose work has appeared in WebMD, Parenting magazine, and other publications.
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