Living With a Parent’s Chronic Illness

It’s hard enough to be a good parent when you're healthy—just imagine braving a chronic illness, too. Here, the strengths that keep these families going.

Greg and Regina Vellner of Southampton, Pennsylvania, had been married just four months when Greg learned he had multiple sclerosis (MS), a chronic, degenerative disease of the central nervous system. The diagnosis explained the attacks of double vision and the periodic problems with balance that he'd had for several years.

By the time the couple’s daughter, Jenny was born a year later, Greg was legally blind. He could no longer read normal-size print or drive to his job. So Regina, a paralegal, became the parent who went off to work each morning while Greg wrote at home and took care of the children—Jenny, now 10, and Tommy, 5. “My illness has affected almost everything—our careers, where we live [within walking distance of a school], how we manage our lives,” he notes.

Under the best of circumstances, being a parent is a demanding job. But each year, hundreds of thousands of families face the additional challenge of a parent’s chronic illness. Besides having their own pain to deal with, these parents must help their children adjust to the illness as well.

Sometimes, for example, Jenny Vellner gets upset when her dad begins to limp or slow down. “I quickly reassure her that I’m okay, and later I make sure she sees that I’m my old self again,” Vellner says. “The children know I have MS, and they know three important things about it: that I’m not going to die from it, that it’s not contagious, and that they’re not responsible. I don’t want my children ever to think that this thing is their fault.”

Because children often blame themselves for family misfortunes, Ellen Schecter, a Bank Street College writer and producer, and her husband, Jim Altman, have shared a similar message with kids Alex, 14, and Anna, 11. Eight years into her marriage, Schecter was diagnosed as having systemic lupus, a chronic disorder of the immune system. It causes constant nerve and joint pain, numbness, and physical disabilities. Other serious symptoms requiring hospitalization can flare up at any time.

How Not to Take It Out on Your Family

“You go through all the stages that a person with a fatal illness does,” says Schecter, “except that you go through them again and again, each time the illness flares.” Acknowledging feelings of anger or sadness is important, Schecter adds, “so that you don’t take them out on your family.”

When she’s having a bad day, for example, Schecter is likely to tell her kids: “I’m not angry at you. I’m angry at lupus. I’m angry because I’m hurting too much to go to your soccer game.”

Listening carefully is another way these parents stay in touch with their children’s needs. “When kids ask a question, they’re generally ready for an answer,” says John Rolland, M.D., co-director of the Center for Family Health at the University of Chicago (see “What Kids Can Understand Age by Age,” bottom of article). But sometimes there are hidden meanings in their questions. “When a child asks, ‘Will Mommy be able to come to my school play?’ he may really be looking for some reassurance that he is going to be cared for, not abandoned,” explains Elliot Rosen, Ed.D., medical family therapist at the Family Institute of Westchester in Mt. Vernon, New York.

These kids also look to their parents for permission to express their negative feelings. Sherri Vest, a secretary in Casper Wyoming, who suffers from asthma, a chronic lung disorder, says that sons Cory, 10, and Brenda, 7, get frustrated when one of her coughing fits interrupts the roughhousing that they were all enjoying just a moment before.

“One of my boys may even apologize for his anger afterward,” Vest notes. “That’s when I reassure them that it’s all right to get mad—and that I feel disappointed at those times, too!”

Easing Inevitable Pitfalls

No parent can protect her child from each and every disappointment. “But you can try to foresee—and ease—pitfalls in advance,” Dr. Rosen points out. For example, an ill parent can appoint a favorite aunt to go to her child’s school play in her place. “It’s not the same thing as having the parent there,” says Dr. Rosen, “but there will be some positive value for the child in knowing ‘Even though Mom couldn’t come, she was concerned enough to send Aunt Mary instead.’”

Some of these parents devise very creative ways of caring for their children’s needs while also caring for themselves. Bedridden after a long hospitalization, Schecter made different-colored signs and hung them outside the door of her bedroom so that the kids could figure out her availability at a glance. A red sign meant “Mommy’s sleeping. Please don’t come in the room.” A pink sign meant “You can come in and give me a kiss.” A green sign meant “Please come in and play quiet games.” Schecter backed up her sign system by investing in some board games and card games that she could play with Alex and Anna during “green” times that they had together.

Vellner has learned to be creative, too, in finding ways to compensate for his vision problem. “I’ve never been able to read my children a book,” he says, “so I’ve made up stories with continuing characters that I can tell them instead. Or if we’re outdoors and Jenny and Tommy want to play catch, I just use a beach ball so I can see it coming. I’d rather have Jenny and Tommy see me try and fail,” he continues, “than not try at all.”

A child can learn a valuable lesson from a parent who is able to explain his limits, yet still function with pride and confidence. “The child learns that having a disability does not affect a person’s worth,” Dr. Rolland explains.

A child may also feel good about being included in what the ill parent is going through. Kathleen McCue, M.A., child life specialist at the Cleveland Clinic Foundation, recommends taking the child along to watch a parent’s routine medical treatment. This helps to give the child a realistic view of the illness, according to McCue, and it also makes him feel involved in the parent’s care in a nonthreatening way.

Who’s in Charge?

But should a child be expected to do even more—to help out in a parent’s medical emergency? “With a life-threatening illness such as diabetes or asthma, kids should be informed of rescue procedures,” says Dr. Rolland. Otherwise, he warns, they may live in terror of being home alone with the parent at a time of crisis—but unable to help.

Since Theresa McKee of Upland, California, has diabetes, a chronic metabolic disorder, she may lapse into unconsciousness if her blood sugar gets too low. So McKee, who is a registered nurse at San Antonio Community Hospital in Upland, taught her three daughters—Christina, 12, Sarah, 10 and Kimberlee, 8—some simple life-saving procedures. Among other things, the girls know that if their mother ever passes out and can’t talk to them, they should dial 911 and say, “Mommy is a diabetic and needs help.” McKee says that she reviews this and some other simple emergency procedures with her girls every few months. “My philosophy is to take away their fear,” she says, “and replace it with knowledge.”

Growing up in a household in which a medical emergency can occur at almost any time certainly places added stress on children. But if handled properly, it doesn’t have to rob them of their childhood. “The single most important factor is the parent’s attitude,” emphasizes Manuel D. Reich, D.O., director of the Center for Pediatric Psychiatry and Medicine at the University of Pittsburgh Medical Center. “If the parent is depressed, complains a lot, and acts needy, the child is at risk for having more problems—or may even develop his own disability, such as headaches, stomachaches, or a breathing difficulty. But if the parent is taking care of herself and leading as normal a life as possible, the child will be secure in the fact that Mom is doing the best she can do to accommodate his needs. In fact,” he continues, “many of these children become responsible and well organized early on. They may have a somewhat less idyllic sense of childhood, but the trade-off is that they may also be more mature. Many go to work in one of the helping professions, such as medicine or advocacy law.”

But to help a child grow from this experience, it’s not necessary for an ill parent to be strong as a rock, adds Dr. Rosen. “It’s important for kids to know that their parents are human,” he points out. And a parent who readily admits that she can’t do it all—and reaches out for help from others in her community—sets a great example for her child.

One source of help can be the child’s teacher. “There are many ways in which children act out their fears and distress,” says Gerry Gripper, M.Ed., interim executive director of the National Education Association’s Health Information Network in Washington, DC. “But after talking with the parent, a teacher will know why a child is upset and will be better able to help the youngster deal with her feelings.” The teacher can also call on other school personnel—the nurse, counselor, or psychologist—to assist the child, as well as come up with helping strategies of her own.

When Anna Altman was having a hard time because of her mother’s lupus, her mom got in touch with Anna’s teacher, who encouraged Anna to write about her mother’s being sick. “When Anna read what she had written to the class, she didn’t feel so alone with her sad feelings anymore,” Schecter recalls.

Coping With Hospital Stays

Communication and creativity are especially important when an illness requires a hospital stay. Kids may fear the reason for the trip, as well as the separation from a parent that it will create. When Schecter’s children asked, “Why are you going to the hospital?” they were told that the lupus was worse, and that their mom was getting special medicine that she could get only by being there. “I always give a simple explanation in a style that the children can handle at their age, but it’s never a lie,” says Schecter. “Alex and Anna have learned they can trust us, that their father and I are telling them the truth.”

When her children were younger, Schecter also thought of ways to help them visualize, and feel more comfortable about, her time away. When she knew how long she was staying in the hospital, she would circle the dates on a calendar, explaining, “I’m going to be away for these five days. Every evening, you can cross off one of these dates, and when you’re finished, Mommy will be home.” She also set up phone dates when she and the children could talk together during her absence. And she sent home notes, flowers, and cookies from her meal tray. She encouraged the kids to send their artwork and letters to her in the hospital. “They felt empowered when they could do something specific to comfort me,” notes Schecter.

No wonder chronically ill parents sound proud when they talk about the emotional health that they, and their families, have achieved. “One thing we have learned is that both children and adults are capable of resilience and humor. And empathy,” says Schecter.

“Odd as it may sound, Regina and I think our family is stronger because of my illness,” says Vellner. “In our situation, we take nothing for granted. We relish each achievement, each day—one at a time.”

What kids can understand age by age

Ages 0 to 3
A child this small won’t understand the illness, but he will feel a parent’s absence. Encourage the use of a comforting toy or blanket that he can cuddle during time apart. Having the same substitute caregivers will also increase his feelings of security.

Ages 3 to 6
At this age, the child sees herself as the center of the universe. She may even think, “If Mommy or Daddy is sick, then I must have done something to cause it.” She needs reassurance that the illness is not her fault and that she’ll always be loved and cared for.

Ages 6 to 9
A school-age child is developing a strong interest in his own body and will want to know what is wrong with his parent’s body. He also understands that death is forever, so he may have fears about dying. So do give him concrete information and straight answers about his parent’s condition. He’ll also love some special time with the healthy parent, particularly if it’s spent pursuing one of his favorite interests.

Ages 9 to 12
A child approaching adolescence may feel embarrassed by a parent who looks or behaves differently. But she’s also capable of great tenderness and worry. So keep her well informed about the illness, give her ways to help, and allow her some extra moodiness. Let her know you’re always there to talk when, and if, she is ready.

Where to Turn
The following books can help both parents and children cope with chronic illness.

For Parents

  • How to Help Children Through a Parent’s Serious Illness A clear, well-thought-out guide that delivers what its title promises. By Kathleen McCue, M.A., with Ron Bonn (St. Martin’s).
  • We Are Not Alone: Learning to Live With Chronic Illness A self-help book that also discusses the impact on family dynamics. By Sefra Kobrin Pitzele (Workman).
  • Living With Multiple Sclerosis: A Handbook for Families An easy, readable book with great examples of family and parent/child relationships. By Robert Shuman, Ed.D., and Janice Schwartz, Ed.D. (Macmillan Publishing).

For Children

  • When Someone Has a Very Serious Illness Ages 3 to 8. This interactive guide helps children express their feelings about a family illness through art therapy. By Marge Heegaard (Woodland Press).
  • Sammy’s Mommy Has Cancer Ages 3 to 7. A beautifully illustrated story that can be used to ease a child’s fears about cancer. There are sensitive descriptions of many aspects of the disease, including treatment and side effects. By Sherry Kohlenberg (Imagination Press).