Common Behavioral Changes of Parents

The following excerpt is taken from Chapter 17 of Childhood Leukemia: A Guide for Families, Friends, and Caregivers, 2nd Edition by Nancy Keene, copyright 1999 by O'Reilly & Associates, Inc. For book orders/information, call (800) 998-9938. Permission is granted to print and distribute this excerpt for noncommercial use as long as the above source is included. The information in this article is meant to educate and should not be used as an alternative for professional medical care.

It's impossible to talk about children's behavior without discussing parental behavior. Children's development does not occur in a vacuum, but rather in the context of their family. At different times during their child's treatment, parents may be under enormous physical, emotional, financial, and existential stress. The crisis can cause them to behave in ways of which they are not always proud.

Some of the problem behaviors mentioned by veteran parents follow.

Dishonesty

As stated earlier, children feel safe when their parents are honest with them. If the parents start to keep secrets from the child or "protect" her from bad news, the child feels isolated and fearful. She thinks, "If mom and dad won't tell me, it must be really bad," or, "Mom won't talk about it. I guess there's nobody that I can tell about how scared I am."

Denial is a type of "unconscious" dishonesty. This occurs when parents say things to children such as, "Everything will be just fine," or, "It won't hurt a bit." This type of pretending just increases the distance between child and parent, leaving children with no support. However horrible the truth, it seldom is as terrifying to a child as a half-truth upon which his imagination builds.

Depression

Feeling sad or depressed may occur in parents of children with cancer. If you are consistently experiencing any of the following symptoms, it would probably be helpful to get professional help: changes in sleeping patterns (sleeping too much, waking up frequently during the night, early morning awakening), appetite disturbances (eating too little or too much), loss of sex drive, fatigue, panic attacks, inability to experience pleasure, feelings of sadness and despair, poor concentration, social withdrawal, feelings of worthlessness, suicidal thoughts, or drug or alcohol abuse. Depression is very common and very treatable, and should be dealt with early.

Find a counselor you click with. Stick with that person until you truly feel some peace about your experiences and strength for dealing with the ongoing stress of treatment or whatever else might come up. I regret that I toughed it out and didn't recognize the depression I was experiencing for such a long time. I think finding sources of support in a variety of ways at the earliest moment possible can greatly mitigate long-term difficulties in coping.

Losing your temper excessively

All parents lose their temper sometimes. They lose their tempers with spouses, healthy children, pets, even strangers. But it is especially painful when the target of the anger is a very sick child. Abuse of spouses and children increases at times when either or both spouses feel incompetent and powerless. If you find yourself unable to control your temper, seek professional counseling.

I had my share of temper tantrums. The worst was when he was having his radiation. I tried to make him eat because it would be so many hours before he could have any more food. He always threw up all over himself and me, several times, every morning. It seemed like we changed clothing at least three times before we even got out of the house each day. I remember one day just screaming at him, "Can't you even learn how to throw up? Can't you just bend over to barf?" I really flunked mother of the year that day. I can't believe that I was screaming at this sick little kid, who I love so much.

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In the beginning, my two-year-old daughter was incredibly angry. She would have massive temper tantrums, and I would just hold her and tell her that I wouldn't let her hurt anybody. I would continue to hold her until she changed from angry to sad. When she was on the dexamethasone, she would either be hugging me or pinching, biting, or sucking my neck. It drove me crazy. Now, on maintenance, she's not having as many fits, but she still pushes her sisters off swings or the trampoline. She has a general lack of control. Sometimes, when I can't stand it anymore, I swat her on the bottom, and then I feel really bad.

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I had always taught my children that feeling anger was okay, but we had to make good choices about what to do with it. Hitting other people or breaking things was a bad choice; hitting pillows, running around outside, or listening to music were good choices. But, as with everything else, they learned the most from watching how I handled my anger, and during the hard months of treatment my temper was short. When I found myself thinking of hitting them, I'd say, in a very loud voice, "I'm afraid I'm going to hurt somebody so I'm going in my room for a time-out." If my husband was home, I'd take a warm shower to calm down; if he wasn't, I'd just sit on the bed and take as many deep breaths as it took to stop feeling homicidal.

Unequal application of household rules

You will guarantee family problems if the ill child enjoys favored status while the siblings must do extra chores. Granted, it is hard to know when is the right time to insist that your ill child must resume making his bed or setting the table, but it must be done. Siblings need to know from the very beginning that any child in the family, if sick, will be excused from chores, but will have do them again as soon as he is physically able.

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Overindulgence of the ill child

Overindulgence is a very common behavior of parents of children with cancer.

I bought my daughter everything that I saw that was pretty and lovely. I kept thinking that if she died she would die happy because she'd be surrounded by all these beautiful things. Even when I couldn't really afford it, I kept buying. I realize now that I was doing it to make me feel better, not her. She needed cuddling and loving, not clothes and dolls.

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Four days into Selah's diagnosis, we were doing anything to keep her happy. Our sweet little four-year-old had turned into a demon child in that short time. Luckily, my very dear friend took me outside into the hallway, pushed me against the wall, and demanded to know exactly what I was doing. I just looked at her and said "I have no idea." I just didn't want my daughter to die and that was my only focus. She then told me I was giving my daughter no boundaries, no behavior expectations, and she had no respect for anyone who walked into the room. She was so right and I couldn't see it for fear that Selah would die. Through my tears and our hugs, she assured me that the way we were going, if she didn't die from leukemia, we were going to want to kill her because of the monster we were creating. I am still so grateful that she wasn't afraid to tell me what I needed to hear.

One aspect of overindulgence that is quite common is the parent's reluctance to teach the sick child life skills. After years of dealing with a physically weak and sometimes emotionally demanding child, parents may forget to expect age-appropriate skills.

I realized that I had formed a habit of treating my child as if she was still young and sick. I was still treating her like a three-year-old, and she was seven. One day, when I was pouring her juice, I thought, "Why am I doing this? She's seven. She needs to learn to make her own sandwiches and pour her own drinks. She needs to be encouraged to grow up." Boy, it has been hard. But I've stuck to my guns, and made other extended family members do it, too. I want her to grow up to be an independent adult, not a demanding, overgrown kid.

Overprotection of sick child

For a child to feel normal, he needs to be treated as if he is normal. Ask the doctor what changes in physical activity are necessary for safety, and do not impose any additional restrictions that go beyond this on your child. Let the child be involved in sports or neighborhood play, and even though it is hard, stop yourself from constant reminders to be careful.

Not spending enough time with the sibling(s)

While acknowledging that there are only so many hours in a day, the parents interviewed for this book felt the most guilt about the effect of the leukemia on the siblings. They wished that they had asked family and friends to stay with the sick child more often, allowing them to use more of their precious time with the siblings. Many expressed pain that they didn't know how severely affected the sibs had been.

We didn't have problems with our child with cancer, but his brother (six years old) really suffered. He would get the flu and sob all night. He would scream that he would have to go to the hospital and that he would die. He also had behavior problems at school. I ended up quitting work because my son with leukemia was having trouble making it through the entire school day, and his brother needed some loving attention. Many of the sibling problems cleared up with lots of one-on-one attention.

Using substance abuse to cope

Some parents find themselves turning to alcohol or drugs to help them cope. Not only illegal drugs are abused; overuse of over-the-counter sleeping pills or other medications also occurs. If you find yourself drinking so that your behavior is affected or using drugs to get through the day or night, seek professional help.

Coping

Many parents find unexpected reserves of strength and are able to ask for help from their friends and family when they need it. They realize that different needs arise when there is a great stress to the family, and they alter their expectations and parenting accordingly. These families usually had strong and effective communication prior to the illness, and pull together as a unit to deal with it.

The majority of families, however, have periods of calmness and other times when nerves are frayed and tempers short. But usually families survive intact and are often strengthened by the years of dealing with cancer.