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Telling Children that a Parent Has Cancer or other disease:
 
One of the most difficult questions that parents with cancer must deal with is, "when do I tell my children and what shall I say?"  Let's face it we want to protect our children from pain and we know that this will create a lot of pain. However by holding back this information we actually can create more pain in the long run. Children sense when something is wrong and their imagination is far worse than what is often the truth.  Also when we avoid telling them, they hear it from the wrong person and at the wrong time, like from a classmate or overhearing you on the phone as you are whispering. This creates more anxiety, anger and fear.
Here are some important points to remember:
  • Children need accurate, age appropriate information ( the name of the disease and that the doctors are doing all that they can do to help.
  • Children need to know what is happening now and what will happen in the immediate future. This eases their anxiety, fears and worries.
  • Children need to know that they didn't cause it.
  • Children need to know that they can't catch it.
  • Children need to know about the treatment plan and how it will affect their life (rides to school, play dates, routines)
  • Children need their questions answered truthfully (not everything at once, but never tell an untruth).
  • Children need hope and reassurance.
  • Children need a support system outside the immediate family
  • Children need to be able to participate in the care of a parent
  • Children need to know that they will continue to be cared for
  • Children need to know that the parent has less energy now
  • Children need lots of attention and love

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Helping Elementary School Age Children:
Since school is a second home for many children, it is common that emotional issues show up at school. School problems, acting out, school avoidance and fighting with classmates may indicate the child needs assistance.
I encourage families to share information about the health issues with school.
Children may seek out the school nurse often with somatic complaints.
Children may be extra tired from not sleeping well.
Ask child if he/she wants to tell classmates about parent with cancer.
Ask child if he wants someone to help him tell the class.
Ask class to make cards or a book for the parent.
Some children will eat a lot of lunch or not be hungry at all.
Children typically have outbursts over minor issues.
Children may be clingy with a teacher or become very quiet.

Helping Teens When a Parent Has Cancer
  • Teens are unpredictable
  • Teens want detailed information
  • Teens want to know the truth
  • Teens need privacy but also do appreciate caring adults.
  • Teens often write about and reflect upon their inner thoughts.
  • Teens who want to contribute to care giving should be allowed.
  • Encourage teens who want to accompany parent to treatment.
  • Teens struggle with the need for independence. 
  • Teens are often self-conscious
  • Teens often act indifferent or uncaring. Doesn't mean they don't care. Often it is just a form of protection.
  • Teach teens about normal grief responses.
  • Allow them permission to have fun and take breaks from grief.
  • Understand that it "stinks" and "isn't fair" that at a time in their life they should be having fun, they are struggling with grief.

Remember:
 
Children and teens need: Love,Support,Truth and Permission to Grieve in their own way. 
When we lie, we send the message of: "I don't think you can handle the truth."  Parent's lack confidence in their children's ability to deal with the truth. This actually serves to lower a child's self esteem. Instead communicate, "I respect you and I believe that you can handle my illness." This increases a child's self esteem.
 If it is mentionable, it is manageable.
Even when a prognosis is not good, and death may come soon, still tell the truth. The child will learn to trust the adults around him.
When we tell the truth, the child can relax a bit, knowing that if anything changes, he will be informed. He won't have to worry about trying to figure it out himself.
Keep hopeful and communicate hope.
 
 
A great resource for families dealing with cancer:
Gilda's Club and The Wellness Community have combined and formed: 
  Cancer Support Community: A Global Network of Education and Hope
 
  The Wellness Community (Bedminster and Eatontown NJ)   www.wellnesscommunity.org/cnj      
Kids Connect/Parent Connect: Children ages 7-12 and parents
Teens Connect : teens ages 13-17
Bereavement Groups:  children ages 7-17 and surviving parent
(908) 658-5404 Bedminster    
 
The Wellness Community in Eatontown, NJ 

Victoria Commons
613 Hope Road
Eatontown, NJ  07724

732-578-9200

 

Open since May 15th of 2007, we have already served hundreds of residents of Monmouth and Ocean counties - and the surrounding areas. If you can get here, we are here for you !

The Wellness Community provides warmth and acceptance in a safe and comfortable environment. We are your community - a resource for education and information, a place to gain support and nurturance, a place of hope where you can learn how to live fully with a cancer diagnosis. And, a place where your loved ones can learn from - and with - you.

Our mission is to help people affected by cancer enhance their health and well-being through participation in professional programs of emotional support, education, and hope. We are open to people with cancer, their family members, caregivers, and friends. All of our programs are free of charge. You will never be asked to pay for our services and you will never be asked to complete an insurance form.

Programs at The Wellness Community center around four key areas:

  • Support Groups
  • Educational Workshops
  • Mind / Body / Spirit Classes
  • Social Activities
There is no set regimen or required program - participants pick and choose programs based on their level of comfort and level of personal need. We currently offer more than 50 free programs, services, and activities each month.        
Other resources:
 
Gilda's Club Northern New Jersey
Open Since November 1999
575 Main Street
Hackensack, NJ 07601
Phone: (201) 457-1670
Fax: (201) 457-1697
CEO: Lenore Guido
Email: info@gildasclubnnj.com

www.gildasclubnnj.org 
 
Gilda's Club South Jersey
Open Since January 2003
700 New Road
Linwood, NJ 08221
Phone: (609) 926-2699
Fax: (609) 926-2688
CEO: Sarah Griffith
Email: info@gildasclubsouthjersey.org
www.gildasclubsouthjersey.org 

 
The Living Room:  online cancer support community: free for men, women and teens 13 and older who are living with cancer as well as for family and friends.   www.thelivingroom.org   
 

I'm Too Young For This! Cancer Foundation, i[2]y
A TIME Magazine Best 50 Website for 2007, i[2]y, is one of the nation's largest advocacy, support and research groups working exclusively on behalf of survivors and care providers under the age of 40.
(877) 735-4673
stupidcancer@imtooyoungforthis.org

 
Caring Bridge   (www.caringbridge.org) Free patient web sites connecting patient to family at times of a serious illness, permature birth or other medical event.   Wonderful way to keep in touch with friends and family. 
 
Insight:professionally run, support for cancer patient and family to talk about problems and issues in dealing with cancer. 3rd Thursday 7-9PM, Jewish Community Center, 1391 Martine Ave, Scotch Plains  Call Mary Aloia 908-668-2248 or JCC  908-889-8800
Cancer Care, Inc  National, support for cancer patients and their families. Financial assistance, information and referrals, community and professional education. On going telephone, online and in-person support groups. Free counseling.  www.cancercare.org    e-mail:  info@cancercare.org
1-800-813-4673
Kids Konnected: National. Opportunity for kids who have a parent with cancer to connect with other children in similar situations for support and understanding. Groups held by youth leaders, meetings, newsletter, summer camps, information and referrals.  1-800-899-2866  web site:  www.kidskonnected.org    e-mail:  info@kidskonnected.org
 
Dealing with family cancer issues through expressive therapy
Children ages 6-12 who have a family member with cancer. St.Clare's Denville  8 week sessions, concurrent adult group to help the children's family deal with the child's issues.
Call Brandy Johnson, LCSW  973-625-6176
 
Helpful Books:
 
When a Parent Has Cancer: A Guide for Caring for Your Children by Wendy Schlessel Harpham, M.D. (Includes a special companion book for children Becky and the Worry Cup).
 
Raising An Emotionally Healthy Child When a Parent is Sick  by Paula Rauch, M.D. (Founder and Director of Massachusetts General Hospital's Parenting at a Challenging Time Program).
 
How to Help Children Through a Parent's Serious Illness: Supportive, Practical Advice from a Leading Child Life Specialist
by Kathleen McCue, MA, CCLS
 
Our Family Has Cancer Too! by Christine Clifford
 
Our Mom Has Cancer by Abigail and Adrienne Ackermann
 
The Year My Mom Went Bald by Anne Speltz  (ages 9-12)
 
 
The Hardest Conversation to Have: When a Parent is Dying
 
It is so important for children to be included when a parent is very ill and may in fact be dying. So often adults want to protect and shield the children but we do them a major disservice. Later on many of these children will grow up and regret that they were not included at this painful time. Many adults share that they never got the chance to say goodbye to a loved one.  Many adults have shared with me that they are still angry that they did not get to attend the funeral of their parent, as the rest of the family thought it was a bad idea. 
 
There are many things that children can do during this time and there is much to do in terms of preparing the child or children for the future. Giving honest and truthful explanations are vital.  Saying something like, "Daddy's cancer is a disease that has spread all through his body. He is very, very ill. The doctors have tried so many medicines to get daddy's body better. Now the doctors don't think that the medicine has helped daddy. They can't make daddy's body all better. They tried many things but sometimes the body doesn't get better. Most of the time it does, but I don't think that Daddy is going to get better.   They are not sure how long he will live. No one knows for sure when daddy will die, but it looks like he is going to die."  
 
Today, some parents ( some when they are very ill, others when they are well)  choose to make videos, recordings or write letters for their children to read at a future date, in case the parent is no longer around.  It may be a special birthday, or important day, or when they get their license, or when they get married or have a child. Some give advice, share memories and hopes and wishes. This can be a cherished gift for years and years to come. Some children interview the ill parent and ask many questions and either have them recorded or written down for the future. One young girl told me that although at 16 she misses her mom very much, what helps is the beautiful and encouraging letter her mom left her five years ago, that the girl reads daily.  It is a connection to her mom and gives her a special reason to pursue her dreams of helping others. 
 
Children want to help and feel useful. Allow them, if they want to, to help administer the parent's medicine or help make a treat for their mom who is in bed.  Have them help prepare a favorite meal, say a prayer, draw a picture, write a story, share a favorite memory, hold his or her parent's hand, comb their hair, tell a joke, color pictures together in bed. Ask the child if there is something special he/she would like to do. Some children like to give their ill parent a gift. They can buy something or make something or give a possession that is special. 
 
Remind them that they can still do things together. They can love each other and tell each other. They can share and listen to one another. Some parents and some children tell me that although they are very sad to say goodbye, the fact that they had some special time to simply be with them and appreciate each other made all the difference. They often were so busy when the parent was healthier , that often neither took the time to really look at each other and with complete love and appreciation. They can eat dinner together, watch a movie or show, play a game, draw, do a puzzle, sing songs and more. Encourage the child to give hugs and say "I love you".   Remember that many children have been so educated about germs, that many think that they can catch their parent's disease. Remind them that cancer is not contagious as are many other diseases. They will not catch cancer. Many children regret later that they didn't hug their parent or kiss them out of fear of "catching the cancer" themselves.  
 
Often children get ignored at this time and only hear whispers and see sad expressions. They are left to wonder and imagine what is going on. It is so much easier for them if they know the facts. Children imagine far worse often than the reality. If it is mentionable it is manageable. Adults often lack the right words to share with children, or they fear that talking about it is too much for the child. This creates more anxiety, fear and isolation for the child. Explain what the illness is, what the usual course of treatment is, and the prognosis is important. Let the child know what he can do to participate. Ask the child what she would like to do. Find out what the child believes is going on and then clear up any misinformation. Children tend to blame themselves and often use magical thinking so they may feel that they caused the illness in some way. Teach words such as hospice, terminal, chemotherapy, and remission. Prepare them for their future, let them know who is going to take care of them now and in the future. Respect their right to their own grief process. Answer the questions asked and the ones not asked but implied. Take the child's lead in this grief process. They will remember forever that they were included at this very difficult time.  
 
 
 
 

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