Interview on Helping Kids Cope with Anticipatory Grief

I was recently interviewed (again) by Julie Williams of www.education.com. Here's how it went:

1. How does "anticipatory grief" look in kids, as opposed to adults? Same? Different? How? I'm also thinking that there may be some different texture to this question depending on whether the kids are in elementary school, or in middle/high?

 The big difference I’ve noticed is that kids, teens included, worry not only about “if” the person will die, but how it will impact them—how they will continue to get needs met. This is especially true if the person with the serious illness is a parent. Developmentally kids and teens are more about “themselves,” and they are still dependent on parents, so it is very natural to worry about things like: “Who will take care of me if Mom is too sick or dies?

         If the person with the serious illness is a sibling, kids and teens often feel bad about feeling angry at the brother or sister for dominating their parents’ attention, stressing the family, and generally changing their lives. Jealousy over their parents’ attention can be acted out in an effort to shift attention to themselves. It is imperative for parents to listen to and attend their other children needs, even if it means getting family and friends to pitch in and help with the person who is sick, so the parent is freed up, or to help tend the needs of the siblings (ie. rides so they can continue participation in sports, social events – etc.)

         What is often so painful for kids and teens is the adults around them who give the message (intentional or not) that it isn’t okay to talk about the big “D” word as a possibility or a worry. This leaves them alone to deal with something that likely taps their thoughts and feelings constantly. Younger kids don’t inhibit themselves as well and may blurt out what is on their minds only to be made a promise by an adult that the loved one won’t die. Even if it makes the adult uncomfortable, it is best to reflect the concern of the child: “You are really afraid your dad will die from his cancer,” and avoid making promises by sticking with: “I don’t know,” or “The medicine he is taking should help him get better.”

         Older kids – middle and high school age, are so preoccupied with their own developing identity and body that they may seem indifferent or “inconvenienced” by the impact of a serious illness in the family. Their “plate is full” with developmental tasks and the feelings and thoughts they likely have may be simply “too much” to hold. They may cope by avoiding the feelings and/or the person who is sick.

         School-age children and teens alike can benefit from peer support groups that give them a place to express all that they are carrying. Most often they are relieved to hear other kids talk about some of the taboo feelings they are having (anger, jealousy, impatience, guilt, etc). Ultimately, open communication within the family is the most important.

 

2. Could you comment on your advice to "answer questions honestly?" What's the line here--what's enough, what's not enough, what's too much?

Ultimately, you can’t be too honest. You can, however, talk on too long, give too much detail, have too much of your own ideas and feelings mixed in. Rule of thumb: The less years, the less words and letters in those words.

         Use concrete language with younger kids who will likely be imagining everything you say quite literally. You can use their imaginations to help their understanding (ie. Cancer is like a bump that doesn’t belong on or in the body and it just keeps getting bigger taking over the parts of the body we need to stay alive. Medicine can help make the bump get tiny until is disappears.)

         As kids get older, they understand more abstract concepts and language. Best bet is to give basic, honest information and invite let the child or teen to ask questions any time. That gives you a chance to hear what their concerns are and what they understood. Always end conversations with reassurance—and all-the-better if it is specific: “Aunt Sheryl will be taking you to practice on days I am at the hospital with Dad.”

 

3. What are some ways that kids can feel effective in helping a person who's sick, and are there any kinds of "help" you do NOT advise?

 

 The ways kids want to help are often the ones where they will feel most effective and less helpless. It is also important to keep in mind their age and development. For instance, a younger child might want to give Grandma her medicine, but that would be inappropriate due to safety issues. Instead, s/he can bring the water to Grandma and take the empty cup away. Younger children enjoy tasks they can master and ones that let them feel they are contributing in an important way. A seventeen-year-old may want to help by driving to the store to pick up groceries—a task that matches their developmental stage. A twelve-year-old may want to help make a meal and bring it to the bedside.

         Some forms of help are direct, helping the child/teen adjust to the changes inherent in a serious illness and remain in contact with their loved one. Other types of help are indirect and helpful if the child/teen is not yet comfortable with being around someone who is ill. These could be: making cards for the loved-one, picking out movies, doing laundry, and taking up other chores that the caregiver may need help with.

         It is a likely reality that kids will have to help more when their family is coping with the serious illness of one of its members. They may not be thrilled with this or agree that it makes them feel less helpless. Framing the help as teamwork—supporting one of its members through a difficult time—may help motivate them, as long as the message isn’t undermined with guilt. The types of help to avoid are those that involve personal care (ie. bathing, changing diapers, etc.) and others that the child/teen isn’t comfortable with (ie. avoid forcing them to have contact with person who is sick).  Forcing a caregiving chore to prompt contact between child and loved-one is bound to backfire. Follow the child’s lead and they will reap the potential benefits of quality time with their loved one.  

 

4. What are the most important aspects of a "support network" for kids anticipating a big grief? (I notice that you mention "outlets for sharing and expression," "school/church," "local support groups"--can you comment here? (I'm also wondering about the role of playmates and their parents/or local parent organizations like the PTA?)

A support network, in this case, is a group of people who want to help someone is experiencing a serious illness. All those offers of: “If I can do anything to help, just let me know,” are taken up and organized with one person serving as “coordinator” of the help.

         One aspect of a support network is supporting the family members; picking up the slack that is left when the person fell ill and the spouse/parent became occupied with caregiving. For kids, it could look like friend’s parent signing up to give rides to school events, a member from the family’s church offers childcare after school one day a week, a teacher agrees to meet with the student during lunch to keep the student caught up, the child/teen attends a local support groups for kids experiencing anticipatory grief as a place to share specifically about the complex feelings and thoughts they are having among peers, the school PTA organizes meals to be dropped off twice a week, and so on. The underlying benefit to the kid is that the communication lines are open. The fact that all these people are involved in support means they all know what is happening in this kid’s world. It isn’t a hushed secret, but a matter of fact. Illness is a fact of life that will impact us all at some point, either directly or indirectly. When other children witness their friend go through something so difficult, it can be scary, but with the support of a community, children learn an important life skill about how help works—both giving and receiving.

 

 

5. Finally: I see an inspiring challenge to hold "grief and hope" at the same time, but I'm thinking that kids can be awfully black and white. How can we help them with the rainbow of feelings that is natural at a time like this?

      Even for most adults holding both grief and hope simultaneously is extremely difficult. It often feels more like a rollercoaster of experiencing one and then the other in dizzying sequence at times. The concept of “holding” is really an adult task. For kids, it is more acknowledging, normalizing, and empathizing with their experience of both things that seem so opposite. An exercise I do with kids based on an idea from the book: Becky’s Worry Cup  (a story of a girl coping with her mom’s cancer) illustrates how to help kids with this. I draw a giant cup and tell them to write or draw their “worries” in it each time their worries build up (or do the same at home with a mug and some scrap papers). When we look at them, they are most always the very things they have already begun grieving: “worry my dad won’t be able to talk, worry about mom not being able to braid my hair anymore,” and almost always: “worry he will die.”  A group is helpful in this situation because they quickly realize the deep dark worry they’ve been carrying alone is one that other share too.

         We do the same thing with a big heart. Inside it, I ask them to write, or draw what they hope. Usually these are exactly the opposite of the worry/grief items. They notice this and it shows them what is happening: both grief and hope happen at the same time. The hardest thing about this is the uncertainty: not knowing which way things will go. Our focus then goes to coping with uncertainty with things like: talk to a trusted friend, play a sport, participate in your religious practices, draw your feelings, play a board game with predictable rules, etc. One of the best things parents can do to help kids and themselves with this is to keep as much routine and rules (as were in place prior to illness) as possible during a time when there is so much unpredictable change.