Talking with Family

Whether you are the patient or a family member or friend, a change in role affects how you perceive yourself as well as how others view you. This includes people you know and do not know, who you may think are judging you for the choices you make, and your ability to juggle new roles that may be foreign to you. It may also be a particularly frustrating time because you did not ask for and did not want this shift in circumstances or added responsibility in the first place. Here are some suggestions on how you can cope.

Come to Terms with Reality

 A sudden change of role within the family can be difficult to negotiate. Whether you are a newly diagnosed patient with an illness now needing to receive care rather than give it, or a family member who finds him or herself overwhelmed by responsibilities that he/she have never had before such as caring for children, working outside the home, meeting financial obligations, and caring for the sick person.

Be Honest With Yourself & Communicate Your Needs

 There are many ways to cope with sudden and unplanned changes in roles due to sickness. A good start is to be honest with yourself and those around you about your needs and your boundaries. Keep the lines of communication open with your family/immediate support circle.

Accepting a “New Normal”

When medical treatment ends, people often expect things to get “back to normal”. The truth is that it is not so much about getting “back to normal”, as it is about finding out who you are now that you or a loved one has fought a life-threatening illness.

Your “new normal” may include significant changes in how you view life and the world around you. It may also include permanent changes to your role(s) within your family and your community. It is about how you integrate these new roles and the life experience that goes with it, into your life.

Having a serious illness is an experience that permanently changes you, and the relationships you have with everyone around you. This is not necessarily negative. In fact, some people find it quite positive. Many survivors and family members come away from their treatment with a new affinity for life, reinventing themselves and rethinking their lives and their futures.

Being part of a couple when one member is sick can tremendously alter your relationship, but this does not have to be permanent. There is both physical and emotional trauma that goes hand in hand with treatment for a life-threatening illness.

Couples often feel anger and irritation towards each other as they negotiate both the cancer treatment as well as changing roles in the family. This is normal. Give yourself time, and remember that just being open with each other does a lot to ensure that each person’s needs are met.

Here are some tips on how to deal with the changes.

Communication

 We cannot stress communication enough. Working through changes in roles as a couple can be a difficult process, but it is important to share your thoughts and feelings with your partner, even when one member of a couple is sick. If you choose not to share your thoughts and feelings with your partner, you are essentially cutting yourself off from your greatest source of support at a time when you need it the most.

Connecting With Your Partner

 When one member of a couple is sick, it can be very challenging to start to relate on the level of patient-to-caregiver, rather than partner-to-partner. The reason for this is that often the illness of a family member takes centre stage in relationships, especially during treatment. Even during active treatment (when possible), it is important that couples dedicate time to activities that will allow them to connect on a partner-to-partner level. Couples need to make a conscious decision that their lives as a couple will not solely revolve around the disease and treatment plan, but also be about the things that connected them with each other in the first place.

Expectations

 As the patient or the partner, let eachother know what to expect or not expect of you in this process. Do not feel as if you have to maintain your previous levels of activities/responsibilities. Set realistic limitations on what you can do. Try to ask for help when you need it, even though this can be difficult to do. Don’t think that you can do it all!

Socializing

 Keep up contacts outside the family as much as you are able. This will help you stay connected with your life outside your medical treatment.

Children have many different reactions when they learn a parent or relative has cancer. They can be afraid, confused, guilty, or angry. Let them know that feelings are never wrong. Whatever they are feeling is OK and normal. It is even normal to feel one way one day and another way the next. Tell them you have a wide range of feelings too.

Here are CANCERCare’s 10 tips for communicating with your children:

1. Give your children accurate, age-appropriate information about cancer. Don’t be afraid to use the word “cancer” and tell them where it is in the body. Practice your explanation beforehand so you feel more comfortable. If you don’t provide this information for them, they will often invent their own explanations, which can be even more frightening than the facts.
2. Explain the treatment plan and what this will mean to them. For example, Dad will bring you to soccer practice instead of Mom. Prepare your children for any physical changes you might encounter throughout treatment such as hair loss, weight gain or loss, fatigue, etc.
3. Answer your children’s questions as accurately as possible given their age and prior experience with serious illness in the family. If you do not know the answer to a question, don’t panic. Say, “I don’t know. I will try to find out the answer.”
4. Comfort your children by explaining that no matter how they have been behaving or what their thoughts have been, they did not do anything to cause the cancer. Explain that they cannot “catch” cancer like they catch a cold.
5. Let the children know about other members of the support system, including your partner, relatives, friends, clergy, teachers, coaches and your health care team. Let them know they can ask questions of these adults, and can always talk to them about their feelings.
6. Allow your children to participate and contribute to your care by giving them age-appropriate tasks such as bringing a glass of water or reading to you. 
7. Encourage your children to express their feelings, even ones that are uncomfortable. But also let them know it’s OK to say, “I don’t want to talk right now.” 
8. Assure your children that their needs are still important and that they will be cared for, even if you can’t always provide the care directly.
9. Spend your energy communicating with your children. Understand what they are asking, and make sure they understand what you are saying.
10. As always, show them lots of love and affection. Let them know that although things are different, your love for them has not changed.

The information in this section is cited with permission from CANCERCare, an American national nonprofit organization. For more information, visit the CANCERCare web site, call 1-800-813-HOPE (1-800-813-4673) or email info@cancercare.org.

Parents and other family members talking to children need to be prepared to discuss death. There are gains being made in the treatment of cancers and other potentially life threatening diseases every day. However, despite the best efforts of our medical system,  some people still succumb to these illnesses in the end. The possibility of death is a harsh reality for many patients with life-threatening illnesses.

While you do not want to unnecessarily scare children that a close family member may die, if death becomes a real possibility, you need to seriously consider sharing this information with the children in the family. This is a complicated topic, and you may want to consult a Leukemia/BMT social worker, school counsellor, or grief educator first to get more information on how to do this effectively.

One of the most important things to remember is to take your child’s age into account when discussing death. Pre-schoolers, for example, do not understand that death is final. School-age children tend to know that dead things don’t eat, breathe, or sleep. By the age of ten, children begin to understand that death is the end of life.

Three Important Points

1. Try to use very clear, specific terms. Being vague will only confuse your child.
2. Use the words “death” and “dying”. Do not use terms like “sleeping forever” or “put to sleep”, because children will think sleeping is like death or be afraid that if they sleep, they might die.
3. Finally, please be patient. It will take a long time for a child to fully understand and accept any type of loss. They certainly will not understand the first time when you try to tell them.

Some of the information in this section is cited with permission from CANCERCare, an American national nonprofit organization. For more information, visit the CANCERCare web site, call 1-800-813-HOPE (1-800-813-4673) or email info@cancercare.org.

The Children’s Club

The Children’s Club is a support program for school-aged children 5 to 12 years old who have a parent or family member living with cancer. A concurrent session for parents is also available. Art activities are offered in a supportive environment in which children can meet with each other and learn about cancer and its treatment. Groups are facilitated by an experienced team of staff members from the Patient & Family Counselling Department at BC Cancer Agency.

Please register at least one week before the session. To register or for more information, please call, 604-877-6000, local 2194.

The Children’s Club also offers a program at the Fraser Valley Centre. To register or for more information, please call Patient & Family Counselling Services at 604-930-4000.

Books
Becky & the Worry Cup: A Children’s Book About a Parent’s CancerStory by Wendy S. Harpham, MD.

This book is an illustrated children’s book that tells a story of a seven-year-old girl’s experiences with her mother’s cancer. This book, along with “When a Parent Has Cancer – A Guide to Caring for Your Children” (see below), provide a plan of action for you and your children to live meaningfully and well when life is at its most uncertain.

When a Parent Has Cancer — A Guide to Caring for Your Children
Written by Wendy Schlessel Harpham, M.D.

This is a book for families written from the heart of experience. A mother, physician, and cancer survivor, Dr. Wendy Harpham offers clear, direct, and sympathetic advice for parents challenged with the task of raising normal, healthy children while they struggle with a potentially life-threatening disease.