CCS adapting to COVID-19 realities to support Canadians during and after the pandemic
Your child’s needs
Your child’s needs may change from what they needed when you were focused on curing cancer.
Your child may have physical symptoms that affect their physical and emotional well-being and quality of life because of the cancer or as a side effect of treatment. Reassure your child that there are a number of ways that the healthcare team can manage most of these physical symptoms. Talk to your child’s doctor about any symptoms or side effects your child is having to make sure that they are managed quickly.
Pain is a common symptom of advanced cancer. You and your child may worry about pain. It is important to reassure your child that their pain will be controlled.
Your child may not feel hungry or interested in food and may not like foods they used to enjoy. If your child finds that eating is no longer enjoyable or too hard, try not to pressure your child to eat. Your child will not have discomfort from lack of nutrition. Talk to your child’s doctor, nurse or dietitian for more information.
As cancer advances, children may also feel short of breath or have trouble breathing. Other problems your child may experience include nausea and vomiting, constipation and diarrhea, and skin problems. There are many treatments for all of these problems.
Children facing the end of life may have fears about being in pain, being left alone, not being able to do the things they enjoy, leaving behind family and friends and the unknown future.
There are a variety of ways to help your child cope with these fears. A lot depends on their past experiences and developmental level. Some children take longer than others to come to terms with the fact that they have a terminal illness. Some may never acknowledge their situation.
Your child may also have negative emotions, perhaps being irritable and angry one moment and then quiet and withdrawn the next. Sometimes they want fewer people around them, perhaps only people they feel especially close to. It can help family and friends to know that this type of reaction often occurs and is normal toward the end of life. It is a natural part of coping and is not because of something anyone said or did.
What is helpful for one family can be very different from what is helpful to another family. If it feels right for your situation, some things that can help your child cope include:
Talk with and listen to your child
When your child wants to talk, listen. Sometimes sharing your own feelings first will let them know that it is OK to talk. Children are influenced by how other people react, so if you can plan ahead, think about how you will respond to their questions about death and dying. Be honest and accept that some questions just don’t have answers.
It’s not necessary to always talk about death and dying. Sometimes you don’t even need to talk. Just being there for your child can be helpful. Sometimes your child may want to be held while other times they may just want you to hold their hand. Often just letting them know that they will not be left alone is comforting.
Keep your child involved with school and friends
School-aged children may want to attend school for as long as possible so they can talk to and play with friends. If it feels right for your child, school can help support your child’s need to have friends, be social and be independent. It can also reduce boredom and depression. It stimulates your child but can also be a source of support for parents, providing a break during the day. If your child can’t attend school, ask the teacher to have the class write letters, draw pictures or make videos for your child. Encourage your child to stay involved with their friends and other important relationships. They may keep in contact through visits, phone, text, email and social media.
Talk about desires and accomplishments
Short-term goals can give your child a sense of achievement and give meaning to their lives. A child, particularly an older child or teen, may have something special that they wish to accomplish. Talk to your child about things they want to do. It could be something simple, such as painting a picture, having a party or taking a day trip to a special place. Or, it could be an event that requires effort and planning – for example, teens may want to get their driver’s licence. A younger child may want to learn how to read or ride their bike. An important consideration is their energy level and their ability to enjoy the wish so that it is a positive experience. It’s also normal for kids to make long-term plans even when these are impossible (for example, going to university or getting a job). It’s OK and normal for dying kids to plan for an impossible future.
Give your child privacy and let them be independent
Give your child as much privacy and independence as they desire. Let them have control as much as possible. This may mean letting them choose what food to eat, when to bathe and when to do certain activities. If your child wants visitors, let people know. Other days your child may prefer to be left alone, and it is OK to let people know that too. Give your child time to be alone with special people in their life. They may want to say goodbye.
Do a life review with your child
A life review is the process of thinking back on your life and talking or writing about your life to another person. This can help your child find meaning in life and peace of mind, regardless of their religious beliefs. It is an important part of bringing your child’s life to a close and reinforcing that their life has had value and meaning. Helping them write down or record their life stories and memories to be left for their family may be a meaningful process for both you and your child.
Make the most of your time together
When your child feels up to doing things, make the most of that time. Give your child time to play and do their favourite activities, such as reading, watching TV or being outside. Make an “I wish I could” list and pick things to do from it when your child is feeling well. If there is a birthday or holiday that your child is looking forward to, find a way to celebrate that day earlier. Read stories and sing songs together. Watch a funny movie. Talk about fun times and special memories. Talk about special things your child has done that people will always remember. Write, draw or make a photo album together.
You may not even need to talk. Just being there for your child and holding their hand can be comforting. Let your child know that they will not be alone. Make the most of each day, and try to live fully in the present. Sometimes the simple things are the best moments for both you and your child.
Reassure and comfort your child
No one can know for sure what the future holds, but let your child know that you are there to support and comfort them. It is important for them to know that you will be there for them and that you will never stop loving them. Talk about special things they have done. Talk about how much everyone loves them. Let your child know that it is OK for them to die. Many children feel guilty about leaving their parents and worry about what will happen to their family without them.
Encourage your child’s end-of-life wishes
Talk with your child often and include them in decisions as much as possible, depending on their age. Your child may have strong wishes about how they live their life now. They may have things they would like to do with family and friends. They may have questions about death. These are all difficult talks, but knowing your child’s wishes ahead of time and helping them to fulfill those wishes can be comforting to both you and your child. This may involve giving away special items, writing letters to friends or having an adventure. Talk with your child about what their dreams and wishes are.
Let your child help plan the funeral
Your child may want to be involved in the planning of their funeral. It can be very helpful to discuss and finalize arrangements together, along with family and friends. Planning what to do when your child dies is not the same as wanting them to die or giving up hope. With things settled, everyone knows what is expected and wanted by your child. The healthcare team can provide valuable support and guidance in this process.