WEDNESDAY'S CHILD
When a parent’s illness turns a child’s world into one of woe, there are danger signs to look for and ways to help.
BY:BEVERLY KIEVMAN COPEN
It’s not easy being a good parent and a good caregiver simultaneously. Responsible adult as you may be, there are times when you can hardly cope with what’s been happening at home since your spouse became ill. How difficult, then, must it be for your children to handle this major change in your family’s life?
“I can’t overestimate the amount of strain involved with a major chronic illness that goes on over a long period of time,” emphasizes Dr. Nancy Coniaris, a clinical psychologist. “It’s very difficult for adults who have to cope, and for the children it comes during the formative years of their lives. It gets woven into their very being.”
For each child you have, the burden on you as caregiver increases exponentially, with each age group having its own issues. If you have tiny tots, your greatest difficulties might be finding help or being separated from your child when caregiving duties pull you away. If you have preteens, you might painfully watch them wrestle with fears they can’t verbalize—from a fear for their parent’s well-being to a fear of what it means for their own future (see box). And for teenagers struggling through adolescence, the strain of a sick parent only adds to an already overburdened emotional load and can alter, to some degree, their ability to socialize. Children of all ages beyond infancy will in some way have to learn to deal with the anxiety of limited participation with an ill parent, the difference in their home life from that of their friends, the possible discomfort of having those friends come to visit and more. But being aware is the first step to making the best of the situation.
SOLUTIONS, AGE BY AGE
With a tiny baby and a permanently brain-damaged husband, Vanessa was astute enough to realize she couldn’t cope on her own. She hired a nurse for the baby, got a housekeeper and mobilized her family and friends. Then, as her husband gained some agility through physical therapy, she let him change and feed the baby to the best of his ability. She didn’t criticize an askew diaper or more spinach landing on the floor than in the baby’s mouth. She decided to allow daughter and dad to develop as normal a relationship as possible, resulting in real accomplishments for her husband and a growing bond between the two.
Beyond the infant stage, it might be tempting to protect young children by hiding the truth from them. But kids sense changes and tension and can tell if something is terribly wrong. Lies will only alienate them and may conjure up fearful images far worse than the truth. Certainly children can be spared some of the messier details of an illness, especially if they’re of grade-school age or younger, but if they are protected too much, serious repercussions may occur.
Joyce, whose husband underwent minor surgery during which a malignant tumor was unexpectedly found, told her three children—ages 7, 11 and 13—the truth. “I don’t say the same things to my seven-year-old as I do to my eleven-year-old and my thirteen-year-old,” she explains, adding that all three were told each step of the way what was happening and what could happen, using medically correct terminology. “Besides,” Joyce says, “I didn’t want them to find out their father had cancer from someone mentioning it at school.”
Joyce notes that it was hardest on her youngest child. “She’s at that in-between age where she’s beginning to understand what an illness is about, but doesn’t really. She felt pretty threatened by the whole thing. I coped with her anxiety by just talking to her a lot, very openly.”
For many children, the worry of having an ill parent manifests itself through behavior. Possibly, they are depressed just as you may be. Notice if your child seems sad, listless, lost in his or her own world or complains of aches and pains. Other signs of depression resulting from illness-related stress at home could include changes in appetite; dropping grades in school; wildness or irresponsibility; increased fears and phobias, often relating to school; difficulty functioning with others; sleep disorders; low self-esteem and other negative or nonproductive behavior. Teens might start raising hell, drinking, or driving recklessly as reactions to this situational anxiety. The emotional turmoil you or your spouse may be experiencing also adds to their confusion and stress.
“The emotional pain involved in the whole situation is so unbearable that the kids will do almost anything they can to medicate themselves out of the mood they’re in, whether with drinking or getting involved prematurely in sex or smoking a lot of grass,” notes Dr. Caniaris. “Any kind of behavioral disturbance in kids—truancy or declining grades or increased drug or alcohol use or irresponsible behavior with cars—is a way the kid is trying to cope with the stress, anxiety, pain, and parental preoccupation with the illness.”
ACTIONS THAT CAN HELP
What can you do when—or even before—serious signs of stress further threaten your family’s equilibrium? Find the moments and the will to:
Keep an open pipeline. Take time to find out what is going on in your kids’ lives and encourage openness by being candid about your own feelings. If your child views you as overloaded with coping both physically and emotionally, he or she may pull back. But it’s important to deal with any emotional or other problems sooner rather than later. They won’t just go away. Make sure another family member or friend is available for your children when you can’t be.
Educate the family. You may not explain your situation or spouse’s illness in the same way to your five-year-old as you do to your 13-year-old, but you owe each some degree of honesty. Keep your explanations and discussions age appropriate and don’t underestimate your child’s capacity to understand. Also, there are many books available, even for small children, which deal with emotions, another’s illness, even death.
Involve your children. Doing some of the caregiving can actually help them feel part of a solid family structure as well as useful and resourceful.
Adjust family activities. A family still can have fun even if one parent is bedridden. There are many activities that can be done with the entire family or with individual children. From board games to video games, from reading aloud to just talking, there are ways to maintain a close-knit family structure. You might even have your teen or tween teach you IM and text-message shorthand so you can stay in touch in a way he or she is most comfortable. Since children don’t always know what to say around a sick parent, help find activities or topics of conversation to share. Safe harbors are activities the kids are involved in, whether it’s music they’re downloading on an iPod or sudoku puzzles, books currently being read or sports. Or create mini-events, such as a “picnic” or an “un-birthday party” in the patient’s room.
Maximize your support system. It’s critical that you call on your family and friends, making the most of everyone’s impact on the children through visits, doing things together and being together on holidays (see box). And be sure to call on your support system for yourself, too.
Inform the school. If teachers and guidance counselors are aware that your children may be in a fragile emotional state, they will be sympathetic and remain alert to behavioral problems or dropping grades so all involved can deal with them before they get out of hand.
Seek professional help. If your children’s problems are serious, persistent and seem beyond your ability to cope or help, get outside assistance in the form of a children’s support group (many schools offer them) or professional counseling.
Keep the family laughing. This may seem more easily said than done, but humor can lighten the atmosphere at home. A little teasing and silliness, whoever starts it, can provide a natural release from tension.
Whatever the age of your children, periodically take the emotional temperature of each one. Make a date to go out with each child individually. Whether you head to a nice restaurant, the neighborhood diner or for a round of miniature golf, your “date” will provide you the chance to do three things: enjoy each other without guilt, see how each of you is doing, and spend some important time alone together.