*July 2021* Written by Tess Taft, MSW, LICSW, and oncology psychotherapist.©
“I feel like I’m doing something terrible to my family even though I didn’t ask for this.”
“My friends and family don’t get it. They can’t. I finally let them off the hook.”
“My teenager wants to know ALL about it. It drives me crazy.
I just want to be left alone.”
“If I don’t understand the feelings and chaos of cancer, how can I
expect my kids and family to understand it? We’re all lost.”
“My little kids are trying so hard to be quiet for me when I’m sick
from chemo. They feel so guilty when they fight. But I feel so guilty for
all the changes I’ve forced them to deal with.”
“I have no idea how I’ll be a single parent. I can’t imagine it,
and I have waves of panic when I try. But I don’t talk about it.
I don’t want him to think I think he’s dying.”
“It’s so hard! My children look at me so worried. My
daughter who’s six started chewing on her toenails,
of all things. I don’t think I’m dying, but I think they do.”
I’ve often heard single adults with cancer say “Well, at least I don’t have kids going through this with me. That must be terrible.” In talking with your children, how can you do it with love and wisdom? Conversations with children about cancer can be so difficult, their questions so hard to answer that nobody feels as though they have done it “right”. And as your children get older and reach the next stage of development, they may ask the same questions again, ready for answers at a deeper level. Be prepared to meet them wherever they are. Let’s look at different age groups:
The young children, say 4-10 years old. Child development experts seem to agree: give them honest, age appropriate answers. A perfect example: your 6-8 year old comes home from school and looks worried. When I see children look like that I know what happened in school that day, or on the playground. Your child heard this: “Your mom has CANCER?! She’s going to DIE!”. Some children go home and ask right away, “Mom, are you going to die?” Others will feel so frightened of the answer they won’t ask; but unless you tell them what they need to hear, they will worry every day, and every night. These kids sometimes don’t want to go to school, feeling the need to stay home, ready to take care of mom if she needs help, or the thought of coming home and finding mom dead is too scary, so they want to stay home. They may not be old enough to have a real sense of what death means, often expecting that someone comes back to life after a short while as in the cartoons. There are 4 things I recommend to address this fear:
- Children need to hear from you: “A lot of kids your age hear from other kids that if your mom has cancer she will die. Have you heard that yet? Well I want you to know that if I am going to die, I promise I will tell you myself. I’m not planning on it, and my doctors are not planning on that. So you don’t need to even think about that. If you have questions, though, just ask me.”
- I would let the oncologist and the team at the cancer center know that I want to bring my child into the center to meet them, perhaps at the next appointment. Some centers will want you to bring them in at the end of the day. Then take your child in, introduce her/him around, have the nurse and you give your child a tour of all the people who work with you: the doctors, the nurses, the patient navigator, the front desk folks. Show your child the place where you get treatment. Answer their questions. You want your kids to know where you go for help to get better, that you are liked there, and where it is they are working hard to get you well.
- Youtube has many videos to help you speak with children. Review them and find one that you think might be helpful. Look for one with a cartoon format that would appeal. If you find one you like, you could watch it as a family. It’s a lovely way for children to know they are included and important as this scary event unfolds in their family. Don’t be surprised if your young child or children watch the video, hop up, no questions, and run off to play. They will process it in their own way and in their own time. Keep it available for them to watch when they want to, perhaps alone the second time.
- Perhaps most important, let the children know very clearly that your cancer is not their fault. Children have a tendency to blame themselves when things go wrong, especially worrying they have caused their parents stress and thus the cancer. They need very clear messages that your cancer is not their fault; they and their behavior had nothing to do with it.
The next age group: 11-14 year olds. Children this age have the same questions, but they ask with more of an understanding that treatment might not work. They may be old enough to have known someone who died. Their fear is more sophisticated. Understanding that teenage developing brains are in turmoil (not just their minds), it’s important not to try to immediately problem solve. Lisa Damour, a psychologist in Ohio and the author of Untangled: Guiding Teenage Girls Through the Seven Transitions Into Adulthood (New York Times Feb.12, 2019) has a great idea. It’s good for boys, too. When she encounters a teen in melt-down, she doesn’t try to problem solve right away. Instead, she gets out “the glitter jar”. It’s a jar “filled with water plus a layer of sparkling glitter sitting at the bottom. The lid is glued on. She “shakes the jar fiercely. Together they watch the “glitter storm that results.” Then, she says, she puts the jar down between them and says “Honey, this is your brain right now. So first…let’s settle your glitter.” Lisa calls this “an elegant model of the neurology of the distressed teenager”. It takes a few minutes for the glitter to settle, and then teens, who often feel blamed for being “dramatic” can feel respected instead. Again, answer their questions in age appropriate ways. When they ask you something about your disease or treatment, answer them honestly, perhaps asking them “What do you know already?” Be aware of how much they really want to know, so start slowly and offer small bits of information. If they really want to know if you’re going to die, ask them if that’s what’s on their mind. I’d also offer them a tour of the cancer clinic and chance to meet the staff. If they don’t want to do that, don’t push it. On the other hand, if you are a member of a cancer support group and meet other parents of children around your kids ages, you could plan a group tour with the clinic. The person in the clinic leading the support group might be willing to meet with you all at the end of the tour and create space for the children to meet each other, talk, and build trust and some friends who really “get” how they are feeling. You parents might meet in a separate room to discuss what’s on your minds.
Older teenagers. These young adults have a broad understanding of cancer and the possibility that treatment may not bring a cure. They know what death means, and may well know someone who has died. Many older teens are able to understand most of what you are coping with and may be able to provide you with actual support. It’s very important to balance both allowing them to help you, and allowing them to get breaks. Maintain your own regular lives (with your friends or their friends parents helping them get to practices, etc.). They need to maintain their schedules. One teen might want to be at home much more than the other. Allow each leeway to follow their own needs. Something very harmful thing I hear among family members is this : “If you loved mom (or dad), you’d do what I’m doing!” Each person has their own needs, appreciates parents understanding that, and will give what he/she can.
This is a short course in parenting children with a parent (or grandparent) who has cancer and much has been left out for the sake of brevity. One more point relates to the parents. Major stress can occur in a partnership when the person who is ill pulls back from insisting on the old, regular rules for the children that worked well before the cancer. I hear these parents say “If I die, I don’t want the kids to remember me disciplining them!” That leaves the other parent alone, the bad guy, and far away from their beloved partner. The routines that all children need in order to feel stable need to include the rules that have helped your family run as smoothly as possible all along.
Whether you are a parent or a grandparent, if this little article has caused you to feel stressed or brought up problems you’re not sure how to deal with, please find a therapist informed about the wild, scary world of cancer and get some professional advice. Parenting is hard enough when we’re all well! Just as you want your kids to let you help them, let yourself get help too.