Talking to Kids About Metastatic Breast Cancer

Talking to kids about

metastatic Breast Cancer

FORWARD TALKING WITH CHILDREN about metastatic cancer is something that few parents feel innately prepared to do. For many parents, the first conversation with their children about a metastatic diagnosis, or about the fact their cancer is no longer curable, is the most anxiety provoking.

This resource has been designed not only to help parents with that initial conversation, but also to help families create a healthy environment for their children to process and grieve this information.

A healthy environment is an open one where kids feel comfortable asking their questions and trust that they will be answered honestly, even if the response is: “I don’t know. I will have to ask my doctor about that” or “I don’t know. I wonder about that too.” It is an environment where kids can learn that the many feelings that make up grief are healthy and natural — not something to be avoided or fixed. It’s also a setting where kids are still allowed to be kids, yet the adults around them are willing to model a healthy grieving process for them.

When a parent is living with incurable cancer, children benefit from not only knowing the truth about the parent’s prognosis, but also from having the opportunity to grieve the prognosis with this parent. Supporting and caring for the grief of children requires us to rely on more than intuition.

It calls on us to reframe our instinctual desire to protect children from the depths of their emotional pain — gentle preparation for what the future holds and well-informed support ultimately being the best protection.

This involves teaching kids that they have the capacity to experience huge feelings and survive them. And teaching them that our strong connection with those we love survives death. It asks of us to bear witness to their heartbreak. And it amazes us when moments later they are running around, laughing and playing. Children possess a natural ability to balance deep sorrow and deep joy in a way that few adults can.

Overall, the impact of being well-supported emotionally throughout a parent’s cancer diagnosis goes beyond the child’s experience of their parent’s cancer and can influence how they navigate the tough times throughout their lives.

It is my hope that this resource provides you and your family with practical and accessible tools that can be tailored to the needs of your child, and will serve them well both now and in the future.

ANDREA WARNICK RN, MA, Registered Psychotherapist

ACKNOWLEDGMENTS This book is dedicated to the mothers, daughters, sister, aunts, cousins, friends, lovers and inspirational women we have lost to metastatic disease. The children in their lives are rooted deeply in their hearts then, now and always.

WRITTEN BY Morgan Livingstone, MA CCLS CIIT/CIMI ILLUSTRATED BY Ashley Doyle EDITOR Andrea Warnick MANAGING EDITOR Shawna Rich-Ginsberg DESIGNED BY Leanna Ruggiero COPY EDITOR Nicole Keen With special thanks to the members of our Metastatic Breast Cancer Advisory Board for their wisdom and insight.

CONTENTS

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6 Talking About Metastatic Disease: Telling Children 7 Questions, Questions And More Questions 8 Addressing Common Concerns 9 Determining How Much Information to Provide 11 Talking About Dying and Death

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18 Ages and Stages: Reactions and Responses 18 Children’s Understanding About Death

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24 Legacy Building

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12 Teachable Moments

32 Dying and Death, Final Hours: Children’s Presence

13 Plans for Treatment

33 Physical and Cognitive Changes

15 Stopping Treatment

34 Possible Scenarios

15 Preparing Children for Changes

35 A Note About a Home Death

17 Ways of Being Together

35 Explaining That a Death Has Happened

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21 Involving Kids 23 Discussions and Updates About Changing Health 23 Telling People

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27 End of Life Stage: Greiving Together 27 Possible Settings for the End of Life 30 Explaining Physical Changes

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36 After the Death 37 The Ceremony: Funeral, Memorial or Celebration of Life 38 Visitation Schedule 38 Cremation

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39 Burial and Graveside Service

40 Staying Connected

39 Realistic Expectations

40 Grief and Bereavement

INTRODUCTION

“The times they are a changin” — Bob Dylan THIS WAS, AND STILL IS, A SONG WITH PURPOSE that remains meaningful in many ways today. The times are changing now in the lives of those living with metastatic cancer. There are new and different drugs available and changes in how treatment is offered. Both the quantity and quality of the lives of those living with metastatic cancer has improved.

Perhaps some of the biggest changes in the approach to metastatic cancer treatment are the loud and passionate voices of people living with the disease and their advocacy for better care, more research, improved access to new treatments and increased availability of support for them and their families.

Rethink Breast Cancer aims to facilitate improved and informed decision-making for people facing advanced disease. For many years Rethink has been working with women with metastatic breast cancer to 4

TALKING TO KIDS ABOUT METASTATIC BREAST CANCER

enhance the dialogue about incurable cancer, create meaningful resources, raise awareness and provide a wide range of supports for those living with the disease, their children, partners and extended family. There is an urgency felt by all to provide these important supports and treatments now in hopes of giving families more time together and a better quality of life during treatment.

This booklet was created to provide information about how to talk openly and honestly with children about metastatic breast cancer. While we have aimed to create a comprehensive resource, we recognize that not all sections of this booklet will be relevant to all people with metastatic breast cancer.

In addition, while some sections are clearly geared towards a parent with cancer, others are directed towards supporters so they can be equipped with strategies for helping children through a family member’s final days and beyond. This booklet is meant to be shared with all those who will be supporting a child following the death of a loved one. Children benefit most from receiving support from a community of emotionally available and wellinformed adults.

Throughout this resource, the words “family”, “parent”, “and “child(ren)” are meant to include anyone the reader feels close to. For ease of reading, the word “children” is meant to include anyone up to the age of 18.

This resource includes strategies for adults to share their hopes about how they would like to live life with the children they care about while living with metastatic breast cancer. There are strategies for answering important questions and for respecting and managing the range of feelings and reactions children will naturally experience when a beloved adult in their life has metastatic breast cancer.

Rethink Breast Cancer has another helpful booklet with a focus on parenting — “Talking to your kids about breast cancer” — that includes foundational information about initiating discussions with kids about breast cancer and treatment. It has simple scripts and strategies for parenting and supporting kids through the “new normal” during treatment. This booklet is available on the Rethink Breast Cancer website. There are additional videos created for kids about cancer concepts, metastasis, types of cancer treatments, family helpers, and all the BIG feelings kids may experience when facing cancer in a loved one. They can be viewed at Rethink Breast Cancer’s website or on YouTube.

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1. TALKING ABOUT METASTATIC DISEASE

Telling Children

• “How do I talk about end of life when I have so much living to do?”

• “ How do I even start to explain this to the kids in my life when I don’t fully understand it myself?”

“I DON’T KNOW” IS A PHRASE that you will hear, and you will say, often following the news that your breast cancer has metastasized. There is so much that is unknown about metastatic disease. This makes it hard for everyone, including doctors and nurses, but especially for you and your family. These “I don’t knows” can be scary and frustrating. It is important to acknowledge that, while keeping in mind that it’s okay if you don’t have all the answers.

It’s okay to respond to questions from children and others with “I don’t know.”

Hope can be a powerful tool in changing how the “I don’t knows” feel.

Hope for more and better treatments, hope for health, hope for a good quality of life, hope for more time. Hope can be different for different people. Hope exists in the external advocacy many people share openly with others, as well as the internal hope someone may feel within themselves and with children and close family members.

It’s natural and healthy to grieve the news that your illness is metastatic and what this means for you and the people who care about you. Finding a balance between experiencing hope and grief when facing incurable cancer can feel like a juggling act to adults. However, most children tend to have an incredible ability to experience both hope and grief in a way that surprises and amazes adults.

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TALKING TO KIDS ABOUT METASTATIC BREAST CANCER

Open communication among family members is an important factor in a child’s sense of well-being in all aspects of family life, and particularly when a family member has a serious illness. It is with this in mind that we begin the dialogue with kids about metastatic cancer, even when it’s news that we wish we didn’t have to share.

To open the conversation, let your kids know that you have some difficult information to share with them.

• “I have some difficult information to share with you.”

• “ I have some sad news about my cancer. I may cry while talking about it and that’s okay.”

Next, share the information in simple “bite-sized” chunks with statements that are honest, factual and simple: • “ Sometimes cancer cells travel to other parts of the body.

When this happens, it is called metastasis.”

• “ My cancer has changed now. Unfortunately, the medicines/treatments did not stop the cancer from growing and it has now travelled to another part of my body.”

• “ My doctors and nurses and I have worked very hard to treat the cancer and to prevent my cancer from spreading. Sometimes no matter how hard everyone tries, and even with the best medicine, the treatments are unable to stop the cancer from growing and spreading to other parts of the body.”

Questions, Questions and More Questions Kids tend to have a lot of questions. Some kids ask their questions freely and some kids don’t. Just as parents want to protect their children, children often try to protect their parents. As a result, some kids will withhold their questions out of a concern that they will upset their parent. Encourage your child to ask any of the questions they have.

Reassure them that their questions, even the hardest ones, will not upset you, rather it is the cancer that makes you sad.

Upon hearing news that a parent or family member’s cancer has spread, kids 7

often want to know “why” this has happened. Gently let them know that it means that the medicine and treatments used were not able to get rid of all the cancer cells. As a result, these cancer cells started growing in other parts of the body. Emphasize that this was not anyone’s fault — not their fault, and not your fault. It does not mean that any of you did something to cause the cancer or did not try hard enough to cure it.

Some kids, particularly younger ones, tend to ask the same questions over and over again. Unless you sense that your child hasn’t understood your explanation, try to be consistent in your response. Ask your child if they are asking other adults these questions. If so, talk to those people about how you are responding to your child’s questions, as it can be helpful for the child to get similar responses from key adults in their life.

It’s also okay to be honest when you don’t have an answer to their questions, given that there is much that isn’t known about why, how and when cancer will spread. You can gently tell them that you don’t have an answer to some of their questions and that you too may be wondering about some of these things.

Addressing Common Concerns Talking with children about the fact that your breast cancer has spread provides an opportunity to address or revisit some important information that children need to know about cancer.

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TALKING TO KIDS ABOUT METASTATIC BREAST CANCER

Below are four common concerns, referred to as “The 4 Cs”, that many children and teens have about cancer: 1. D id I CAUSE it?: “Nothing you did or said caused this to happen”.

2. Can I CATCH it?: “You cannot catch my cancer like a cold. You can hug

me, share food with me, kiss me and you will not get cancer from me”.

3. Can I CURE it?: “You cannot control whether or not my cancer is

cured. Unfortunately, my cancer has now spread and won’t likely be cured, and that is not your fault, or my fault, or anyone else’s fault.”

4. Who will take CARE of me?: “There will always be someone to

take care of you.” (Talk to the child about who will take care of them when you cannot.)

Even if you have already addressed these 4 Cs with kids it can be important to revisit them, particularly with younger children, many of whom benefit from the repetition of important information.

Determining How Much Information to Provide Some kids want lots of information about cancer — where it is, how it spreads, what it looks like, and more. Other kids only want information about how they are directly affected by the illness or the resulting changes, such as who will take them to and from school now. The amount of information a child wants tends to be more dependent on their personality than their age.

To start a conversation about cancer with your child, begin by asking them what they understand about your cancer: • “Can you tell me what you understand about my cancer?”

Use this opportunity to clarify any misconceptions they may have.

Here are some examples for explaining cancer: • “ Cancer is when some cells that are not working properly in the body grow out of control. The cells keep making more cells that also aren’t working properly.”

• “ These ‘out-of-control cells’ can group together and cause a lump of cells. This is called a ‘tumor’.”

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• “Cancer cells can cause discomfort, like pain or swelling when they are in an organ or bone.”

• “Cancer can form in different parts of the body. In my body the cancer is in my breast and has spread to my [fill in].”

Ask your child if they’d like more information. Let them know they are welcome to ask any questions and share any concerns with you. If they want more information, ask them whether they’d like the information from you or from someone else, such as another family member or trusted adult, or perhaps a member of the medical team.

When you give information to kids, they will need time to digest what you have told them. This often means taking a break to let them play, cuddle, or engage in another activity while they process what you have just shared with them. Look and listen to their cues to determine whether or not they are still focused on the discussion. If they are distracted or no longer engaged in the conversation, ask them if they need a break, and if so, take one. Allow for time to play, to focus on other things, and to process what has been said before offering more information. If, on the other hand, kids are still engaged in the conversation and want you to continue to share additional information, then follow their cues and continue.

Many parents also wonder “What if I cry?” It is absolutely okay to cry when talking to kids about difficult life situations such as your illness. As long as you are not overwhelmed by emotion, which can be scary for kids to see, it is healthy for kids to witness your tears and sadness and to know that it’s okay to cry about this.

If you feel you might cry when talking to your children about your cancer spreading, let them know at the beginning of the conversation that you may cry, and they may cry too, and that it’s okay for you both to do so. You can reassure children that it is not their job to “fix” or “take away” this sadness.

Sharing feelings is important, and this is an opportunity to encourage children to let their feelings out instead of keeping them bottled up inside.

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TALKING TO KIDS ABOUT METASTATIC BREAST CANCER

Talking About Dying and Death The other BIG question some kids ask, and parents tend to dread, is: “Are you going to die?”

Yep, that’s a BIG question, and one you want to be prepared to answer.

Take some time to prepare how you will respond. For many of us, talking about death is scary but avoiding the topic can actually add to our fears.

No matter how far away your death is, it will take time to prepare children. Your eventual death will require difficult and emotional conversations that require preparation and time. Not sharing information with children and excluding them from the planning and preparations can create challenges in their coping abilities and can have a negative impact on them. When a family is facing the possibility of a death, this discomfort about death can sometimes create distance between children and loved ones. This distancing can be avoided with open and honest discussions about living with incurable cancer.

“Avoiding the topic can actually add to our fears” When responding to the “Are you going to die” question, it is best to respond in an honest and age-appropriate way.

• “ The doctors and nurses cannot make this cancer go away completely.

They will work to treat the cancer in my _______ (include all areas where there is evidence of metastases) using medications/chemotherapy/ radiation/surgery. At some point the medication will no longer work and I will die from this cancer. In the meantime I want to focus on spending quality time with you.”

• “ The doctors and nurses cannot make this cancer go away completely. I will have treatment to help slow the spreading cancer, and this treatment may last a long time to help me continue to live, but I will not survive this cancer.

This cancer will eventually cause me to die.”

• “ We know that the cancer has spread to (a) different part/parts of my body.

Where the cancer is now will impact my ability to live a long life. The cancer is difficult to treat now. This cancer will cause me to die. We are not exactly sure when this will be, but if we think it is getting close we will let you know”.

It is important to use the actual words, “die”, “death”, “dying” and “dead”, instead of more abstract wording, such as “pass away” or “pass on” to prevent confusion about what is happening. Many young children have an unrealistic 11

idea about what death is since so many cartoon and movie characters are able to “come back to life” after dying. It is important to be clear and help children understand how to differentiate between pretend deaths and real deaths.

This can be done by explaining that when someone dies in real life, their body stops working and can never work again. It is forever.

Teachable Moments: Life and Death Are All Around Us All around us in the world are living things that will all experience death at some time. “Life” can be explained to children as being what happens to all living things between the time of their birth and the moment they die.

Find opportunities to illustrate this for young children in nature, your community and even your home. There will be examples of death, such as a flower or plant that died, a fly on the windowsill that died, or a bird or squirrel that died in the yard. These are teachable moments that highlight death as a natural part of life. Explain to children that death is something that will happen to all living things. Even when exploring these opportunities in nature, it is important to use the correct words: “dead”, “dying”, “died” and “death”.

• “ This flower has died. There could be many reasons why it died — not enough water, damage by bugs or an animal, too much cold, too much heat — or it was just at the end of its lifetime”.

• “ The squirrel died. It was hurt by a car/fell out of a tree. Its heart is no longer beating. Its lungs are no longer breathing. The squirrel is dead.”

There are many books available in bookstores and local libraries for children of all ages to learn about dying and death. These books provide the opportunity to discuss such topics either as a family or independently, since some children may prefer to read privately as they explore these concepts.

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TALKING TO KIDS ABOUT METASTATIC BREAST CANCER

Many children’s movies offer stories of loss, dying and death and can be used as an opportunity to begin discussion about the characters’ experiences, as well as dying, death, and grief in general. Some movie deaths may not be peaceful, while others may be very peaceful. Some movies include the death of a pet, while others are about the death of a friend or family member.

Often surviving movie characters experience grief following the death.

Use these moments to normalize that people have many different feelings after someone dies, and that most of these feelings are natural and healthy.

In some instances, the movie may include a funeral or ceremony to acknowledge the death, which offers you a chance to share your personal beliefs and discuss your family’s beliefs and traditions about what happens after a person dies.

The Plans for Treatment When cancer has metastasized, some people continue with treatment and some people do not. Metastatic breast cancer is treated with an assortment of modalities and plans specific to your individual case. Your medical team can help educate you about the options which might include hormone therapy, immunotherapy, chemotherapy, radiation and surgery. It is important to explain to children that the plan for treatment may change at times, and that this is common. Ask your children if they want to know about treatment plans, and, if so, keep kids posted about any changes that may happen. If you stop pursuing treatment, be honest with your children and explain your reasoning for the decision.

Some people benefit from connecting to others receiving treatment for metastatic cancer through community-based groups and charities. Many people consider additional strategies beyond the standard care to increase their overall health. Once you have determined with your doctor what is best for you, the kids can be told about “the plan” as it is “right now”.

Since there are many approaches to treating or slowing metastases, it is important to explain treatments to children in simple language. For example, clarify why some treatments need to take place at the hospital while others, such as oral chemotherapy, can take place at home. Below are examples of ways to explain various treatments to children: RADIATION Radiation therapy is when special energy rays are targeted on the cancer cells to stop them from growing and multiplying. This often helps reduce pain when cancer has spread.

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CHEMOTHERAPY Chemotherapy is a very strong type of medicine that is used to treat cancer by trying to stop or slow the growth of cancer cells.

These medicines are sometimes in pill form and can be taken by mouth and swallowed and other times by liquids given through a special tube inserted into the blood called intravenous (I.V.).

SURGERY Surgery is when doctors make an opening in a person’s body to try to remove the cancer cells. After the surgery is complete, the doctors usually close the opening with special threads called sutures or stitches.

IMMUNOTHERAPY Immunotherapy is when doctors give you medicine so that your immune system can recognize the cancer cells and kill them.

HORMONE THERAPY Hormone therapy is a type of medicine that is used to treat cancer by trying to stop or slow the growth of cancer cells.

As you enter different stages of treatment, you can update children about possible changes that might happen such as: • Different chemotherapies can affect the body in different ways. Some cause hair loss and some don’t. Some cause people to feel sick to their stomach and to maybe even throw up and some don’t. Others come with different side effects, like skin sensitivity and rashes.

• Radiation treatments may cause skin irritation as well as fatigue.

• Surgery often means important wound care and healing time that will require a change in activity level and the ability to move, lift and do other tasks while the body heals.

• Immunotherapy can cause fever, fatigue and rashes.

• Hormone therapy can cause joint pain, fatigue, cognitive issues.

Your medical team will provide treatments to relieve the impact and discomfort of the spreading cancer and relieve suffering across multiple areas, including physical, psychological, social, practical and spiritual/existential.

This may include a psychologist, psychiatrist or social worker within the psychosocial oncology program that can help provide support. If needed, there may be access to a pain specialist that will go over many approaches to pain management should it be necessary. Occupational therapists can help you cope at home with day to day activities.

A social worker can assist you if you need financial assistance and community supports and resources. Social workers can also help identify if there are hospital or community resources available to support children.

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TALKING TO KIDS ABOUT METASTATIC BREAST CANCER

Stopping Treatment Sometimes the decision to stop pursuing active treatment is made, or sometimes there are no more treatment options available. Be honest with children about this. Here are some words that can help explain it to children: • “ Unfortunately, the cancer has continued to grow even though I was taking medicines to try to stop it. We/I have decided to stop any more treatments and will focus on helping me to feel as good as possible for now.”

• “ We have tried lots of different treatments for the cancer. My cancer has grown, and unfortunately there aren’t any more treatments for the cancer.”

Stopping treatment doesn’t mean the end of all appointments, so explain to children that there will continue to be visits with members of your medical team to provide support with your overall comfort and wellness as the cancer progresses. If you are still taking medication, explain to children the purpose of the medication is not to treat the cancer but to help with symptoms, such as staying comfortable.

Preparing Children for Changes: Physical Changes and Changes in Energy Levels/Aptitude Many children benefit from knowing what physical and mental changes to expect with metastatic cancer. Ask your child if they’d like to know some of the changes to expect, or if they’d prefer for someone to explain it to them if/when those changes happen. If they would prefer not to know about the changes until they happen, explore with them who else they would want to tell them about these changes if you are not able to.

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If there are changes in your appearance or behaviour that may affect how the children in your life interact with you, explain those changes to them.

If there is swelling or bloating in an area that has been impacted, let children know this. Caution them if they may need to be gentle with you and careful not to touch/hurt that area of your body. Similarly, if your bones/joints are stiff or painful, it will be important to let kids know you may need to walk slower and more carefully or with assistance (hand/ cane/wheelchair) and cannot pick them up and hold them in your arms.

If there has been significant weight gain or loss this too can be addressed with children. Decreasing energy can impact children’s daily routines, so explaining these changes can be helpful: • “I may have less energy and someone else may have to bring you to school and pick you up after. As I get closer to dying, I will sleep more and more.”

When lungs are involved, breathing can be impacted. If the cancer has caused a persistent cough, or a need for additional oxygen to help with breathing, explain this to children.

When there are metastases and the brain is involved, there can be many different changes that children can’t see with their eyes but that you can explain using simple language: • “ I may have trouble remembering things or using my words correctly.

I might mix up my words or even call you the wrong name.”

• “The cancer has caused me not to be able to see as clearly.”

• “ I sometimes have headaches and/or dizziness that mean I need to lay down more and rest.”

• “ These changes may be because the cancer cells have travelled to my brain, and/or it may be because less oxygen is getting to my brain now.”

If children want to know about what changes to expect with metastatic breast cancer, they benefit from receiving this information. It reinforces their trust in the adults in their life, and it leaves less to their imagination.

However, it is still natural for them to grieve the information they learn. Let them know that it is natural for them to be upset and that you are here to support them. Bear witness to the child’s sadness and resist the temptation to fix it or distract them from it. It’s okay for you to cry with the child too.

Children will likely need reassurance that they don’t need to fix your pain.

Children may just want to hold you and cry together.

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TALKING TO KIDS ABOUT METASTATIC BREAST CANCER

Ways of Being Together As your abilities change, children may struggle to understand how they can interact with you. Provide children with ideas of ways to be together despite changes in physical appearance and/or ability. Some suggestions may include: • Playing board games • Watching movies • Reading stories • Playing video games • Art • Listening to music • Telling stories/reminiscing • Cooking/baking • Colouring pages/drawing • Simple crafts Over the course of your illness your energy level will vary significantly. At some points you’ll likely be able to be quite active, while at other times you’ll need more rest. Find what works for you and adjust your expectations to your ability. For example, if you love to bake banana bread with the children in your life, decide if you can manage the entire process of preparing, mixing and baking the bread and still enjoy that tasty treat with them afterwards.

If your energy level is low, consider buying a ready to bake banana bread (add water and stir), or buy an already baked banana bread so you and your children can enjoy it together with all your energy concentrated on that part of the experience together. What’s most important to your children is the time they have with you, not whether you’ve participated in all steps of the baking process.

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2. AGES AND STAGES

Reactions and Responses: How Will the Kids Cope?

THERE ARE MANY FACTORS such as age, stage of development, personality and communication style that can have an impact on children’s adjustment when someone close to them has cancer. These factors continue to play a role in the child’s response to the news that the cancer has spread.

Communicating openly and honestly with them through incurable cancer provides the opportunity to help children develop the tools and skills they will need for navigating life’s difficult times. It is normal through this time to witness periods of struggle and even regression for your child, while at other times you will be in awe of their emotional growth and maturity.

Children’s Understanding About Death All children are individuals, growing and developing at their own natural pace. When considering developmental behaviours and specific skills that children naturally acquire as they grow, it is important to remember that each child reaches these in their own time.

0-2 YEARS Infants do not have concepts for time or death. It is most important to focus on meeting their physical needs and providing comfort through changes in their everyday life. Consistent caregivers and a daily 18

TALKING TO KIDS ABOUT METASTATIC BREAST CANCER

routine will help infants cope. For infants over one year, use simple and repetitive language to explain what is happening such as, “Mommy has cancer”, to help with comprehension.

3-6 YEARS Children at this age are beginning to understand the concept of death as being permanent and can increase their understanding of this if it is explained to them through repetition and age-appropriate language.

They may have squashed a bug and learned that the bug died, the bug can no longer move and is not alive anymore. The rich imagination of children at this age can also mean that they believe people AND their special toys are alive. Clear statements and information are essential to support their understanding of death as final. Children in this age group may feel responsible for what is happening around them, including a parent’s illness; thus, they benefit from being reassured that the cancer is not their fault.

7-11 YEARS At this age, children understand that death is permanent, yet they may still have some misconceptions about dying or death. They may be concerned about their own death and what will happen to their loved one’s body as they are dying. It is important to share information about possible changes to their loved one’s appearance and ability due to the metastases.

TWEENS AND TEENS 12+ Teens understand the concept of death and fully comprehend the finality of death as irreversible. When given information, teens can understand the progression of terminal illness and common timelines associated with metastases.

“Children of all ages tend to take their anger out on those closest to them” Some children’s feelings will be really evident when they are learning about a loved one’s incurable cancer, while other children will keep their feelings private. Some children may act out and misbehave, while others may become sullen and withdrawn, and others may exhibit overly grown-up behaviours.

Children of all ages have a tendency to want to protect the adults in their lives, especially parents. Some children may start acting as a parenting figure, while others may be angry. Their anger may be directed at the cancer, the person with the cancer, or the world in general. Children of all ages tend to take their anger out on those closest to them. Many children worry about the possibility of death.

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All of these are normal responses to this difficult news. Acknowledge this and encourage children to share these feelings.

Create a plan together as a family that includes safe ways to let anger out, like punching a pillow, going out for a walk or dancing to loud music. Lay down rules for safety, such as not hurting others, oneself, or damaging belongings. Help kids identify people they feel comfortable sharing their BIG feelings with, including family members, friends, and teachers or counsellors.

While younger children tend to seek out emotional support from parents, teens tend to want to receive emotional support from their peers. However, many teens find that their peers are ill-equipped to support them on this level, which can be an additional challenge for them.

They too benefit from someone helping them to identify the people in their life who can support them.

Provide children with age-appropriate choices when it’s possible such as what to have for dinner or who to visit over the weekend. This gives children the chance to feel some control during a time when they have very little control over what is happening.

Many adults find themselves surprised by children’s ability to still play, have fun, and enjoy life in the midst of their sorrow.

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TALKING TO KIDS ABOUT METASTATIC BREAST CANCER

3. INVOLVING KIDS WHEN DEALING WITH LIFE changing experiences, most kids benefit from having the opportunity to actively participate and from being provided with honest information and support. It is natural that kids may need and want to take on extra responsibilities and help out but it’s important to make sure kids don’t start feeling that they are the “parent” in the home. Explore with kids the ways in which they’d like to be involved in supporting you. You may need to provide them with some specific ideas. Even young children can help by: • Bringing you water • Taking care of the pets • Getting snacks for themselves or others • Picking up the mail • Setting the table • Picking music or creating a playlist • Reading the bedtime story • Making popcorn for family movie night Teenagers can take on additional responsibilities such as helping around the house, making meals, and helping with younger siblings.

Listen closely to what children say, and do your best to create an environment in which children feel comfortable sharing their questions and concerns with the key adults in their lives. Many children worry about the practical aspects of how their day-to-day life will be affected by this change in your illness. Reassure them that, no matter what happens, they will be taken care of. Let them know about any changes that will be happening to their day-to-day life. Some areas that may need to be explored with them are: CHANGES TO DAILY ROUTINES Who will walk them to school or activities? Who will bathe younger children and put them to bed? Are there

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any other family members or friends who can help on a consistent basis?

Who will watch their soccer/hockey game?

MEALS AND MEAL TRAINS Let children know who will be providing meals or that there will be a group of caring people who will be helping out with meals. Share your child’s food likes and dislikes so that you can avoid uncomfortable moments when well-meaning friends or family make something your child refuses to eat. Asking children their food preferences (within reason) also helps include them and their needs and preferences in this process.

HOSPITALIZATION AND HOME CARE Are there planned hospitalizations ahead? Is it your hope to stay at home as much as possible?

When at home, will you be able to continue to sleep in your bedroom or is it possible that you will need to move into another room for easier accessibility?

If you are hospitalized, when would the kids like to visit, do they feel comfortable visiting and what can they do when they visit?

A RT AND PLAY Does the child have regular opportunities to express themselves and find creative outlets through art activities, music and play?

These are essential to children’s well-being. Some children are able to express themselves verbally while others benefit from different ways of expressing themselves, such as through art and writing.

Experiencing big feelings can also be a very physical experience for many kids, so some kids need to be more active than usual. Talk to children about what helps them cope and then ensure that play remains a part of their everyday life. Art and play often become safe ways that children can explore concepts of death and dying and deal with the wide range of feelings and fears they are experiencing. This is normal. Encourage this play as healthy and try to support this exploration without criticism.

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Discussions and Updates About Changing Health Ask children whether they would like daily updates about health changes or would they prefer less frequent updates such as every few days or weekly when possible. Would they prefer these updates happen over a meal or would they prefer to discuss this one-on-one in a more intimate setting? If you are not able to inform them directly, who do they want to update them? As a family, figure out what works best to keep everyone informed. Always clarify misunderstandings and misinformation by checking in with kids and asking them to tell you what they understand so far.

Telling People What do you want people outside of your family to know about your changing cancer? What would your kids like people to know or not to know? Take some time to decide how you want to share this information. Make a plan with kids about who will inform their teachers, coaches other instructors, and what information will be shared. Many kids need help in developing responses to questions people may ask such as “How is your mom?”

Here are some suggestions: • “Unfortunately, her cancer is getting worse.”

• “Her cancer has spread.”

• “I don’t feel like talking about it, thank you.”

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4. LEGACY BUILDING IT’S IMPORTANT TO TEACH CHILDREN that death does not end a relationship. This can be demonstrated by sharing memories and stories about people who have died in your life, even if the person died before the child was born.

You will always live on in relationships, actions and decisions that shape the lives of children long into the future, even after your death. In many cultures around the world, people’s legacies are kept alive primarily through storytelling and the sharing of memories among family and community members. Sometimes people choose to contribute to their legacy by engaging in projects specifically for their children. Below are some suggestions for legacy building activities that can be done with or for your child. Ask for assistance from friends or family members if you need help to complete these tasks during treatment or hospitalization.

HANDPRINT AND FINGERPRINT ART These are a fun and colourful way to create a legacy. Your bright hand prints with your child’s handprints on canvas are a beautiful record of the fun you had together. Alternatively, you can use ink stamp pads for a similar effect that is less messy and more easily transported than paint.

FINGERPRINT AND THUMBPRINT CHARMS There are many services available now that can take a simple thumbprint and create beautiful jewellery charms, including necklaces and bracelets. Some companies can even create bigger 3D sculptures of your hands or face.

Ink stamp pads are also fun for creating finger and thumbprints on small art papers for kids to keep.

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JOURNALS Journals can hold deeply personal reflections about your feelings and experiences throughout your life. Keeping a journal can be very therapeutic during treatment and can serve as an enriched look at your thoughts about life even after your death.

HOTO ALBUMS Photo albums both old and new, serve as wonderful P collections of memories of the experiences you have had in your life.

Albums can include your own personal adventures as well as the incredible experiences you shared with your children. Create special photo albums online now for each individual child, or consider scrapbooking old photos into an album to share stories about your own childhood or life experiences you shared with your children. As an alternative to making your own album for the children in your life, consider asking someone in your inner circle to get friends and family members to submit photos and a memory statement for you. Google Drive is a great free way to share folders and track a project like this and leave an album in place where your children can look at all of the important people in your life.

“Making photo albums together can be a way to revisit past adventures�

S OCIAL MEDIA Social media including blogs, articles, videos and posts can all serve to communicate your thoughts and feelings during your treatment as well as your hopes and dreams for the future, in both your life and the lives of your children.

V IDEOS Videos are a part of our everyday life now and often are used to record our experiences and many different celebrations. Video can also be used to create specific video blogs about your thoughts, feelings, hopes and wishes for your children in the future.

ETTERS AND CARDS Letters and cards can be a lovely and intimate L way to share your thoughts and feelings with your child. These letters can be specific to major life milestones like their first relationship, graduation, marriage or the birth of their first child. Letters and cards can be also be more general and include advice you feel you want to pass onto them.

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S TORYBOOKS Storybooks can be personalized with family photos or drawings to share and remember the adventures you have had together.

Storytelling is also an important part of legacy building. For very young children, it is the repeated sharing of stories that will become their memories of experiences they had with you.

T RIPS AND OUTINGS Outings can involve BIG trips together as a family, one-on-one with each child, or just short visits to favourite places from your childhood or places you and your child(ren) have loved. Bigger trips need to be planned with your doctor’s assistance to ensure safety.

OBJECTS AS GIFTS FOR SPECIFIC MILESTONES These can be left for giving as presents on memorable occasions such as the first day of school, graduations, birthdays and other celebrations.

For some, the idea of legacy building can be difficult for many reasons. Focusing on living is important and creating wellness and quality of life during treatment for incurable cancer can naturally require most, if not all, of your energy. By weaving these legacy building activities into the activities of daily living and just enjoying some of them together with your friends and family can shift the effort from onerous to engaging. Creating art with children can be just plain fun. Making photo albums together can be a way to revisit past adventures and share warm memories. Writing or telling stories about past memories and also sharing wishes and hopes for the future can become a tradition. All of these experiences are a part of the natural legacy building that takes place every day and do not require a label.

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5. END OF LIFE STAGE

Grieving Together

FOR SOME CHILDREN, THE GRIEF PROCESS starts at the time when they learn about the metastatic cancer diagnosis while others may have started the grief process at the time of your initial cancer diagnosis. Grief is a normal and natural emotional reaction to a significant loss of any kind.

You can play an important role in teaching your child that grief is healthy by supporting them and allowing them to grieve with you.

Let children know that grief involves many different feelings and that it’s important to have these feelings and to find healthy ways to express them.

Ways of expressing feelings can be through talking, writing, art, physical activity and more. Let children know that they will also have many times when they are feeling happy and enjoying life, even during the most difficult times. Reassure them that it is absolutely okay to feel this way. What children learn from you and other family members and friends will continue to influence how they grieve the death over a long time, throughout their life.

Possible Settings For the End of Life Regardless of the setting chosen for end-of-life plans — whether it be hospital, home, or hospice — it is helpful to invite the children to express their thoughts and opinions about what is being decided.

Hospital care at the end of life can take place in different settings within the hospital. Many hospitals now have palliative care wards with private rooms that allow patients to be surrounded by family in a comfortable environment while being supported at the end of life. Care is provided by doctors and nurses allowing family members to focus their energy on being 27

together as opposed to providing physical care. Social workers and other psychosocial professional supports are often available to the whole family as well, such as religious or spiritual care providers. Palliative care settings within a hospital encourage visitors, most allowing for close family members to be present around the clock, and extended family and friends during visiting hours. Most hospitals have a family lounge if people need a place to gather or rest outside of the hospital room. These rooms often have tables and chairs that work well for offering children a place to draw and play quietly.

Hospital care can also take place in the critical care unit, where more active care is provided in extending a person’s life. The critical care unit can be quite large to accommodate many patients at once, but for individual patient care there are small room-like stations with half-walls or partitions and sliding doors. There are often numerous monitors and noisy machines which allow your body to continue working. The hospital will allow visitors but this is often not a private environment and there is limited bedside space.

This doesn’t mean that children should not visit. Children should be prepared for their visit, alerted to the fact that there will be machines and that you may not be able to interact with them very much. This depends on the machines that are being used, especially ventilators and types of oxygen to assist with breathing. Any bedside care that is needed will likely require all visitors to leave and step out into a public waiting area so that procedures and care can be completed. Some routine procedures include suctioning lungs, toileting and bathing.

Hospice care begins with knowing how the referral process works, how long it will take to secure a space in the hospice, and when to transition into hospice care.

This referral often comes from the palliative team at the hospital or the home care team. Many hospices require a life expectancy of less than two weeks, although some offer support for longer periods of time and give priority to people with small children. Hospices create a more home-like setting for end of life care and supports. This allows for a less institutional environment while still having the benefit of a health-care 28

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team to provide most of the physical care. Most are staffed by doctors, nurses and support staff to ensure all the patient’s needs are met, including pain management. Families and friends are welcome to visit and spend time with the patient, and hospices often have bigger rooms and outdoor gardens.

Spaces beyond the actual patient bedroom can accommodate larger groups and celebrations.

Most hospices have spiritual care practitioners on-site for families.

Hospices also have a support team in addition to palliative care doctors and nurses. These services include counselling for family with a social worker, massage therapy and music therapy for the patient, and mindfulness and meditation practices. Some hospices also have a designated professional to work with children before and after a death.

“Grief is a normal and natural emotional reaction to a significant loss of any kind�

Home care includes preparations to ensure you can be comfortable at home within the familiar environment with family and friends. It is important to consider accessibility when planning this. Access to a comfortable bed is essential, which can mean a hospital bed may need to be arranged and delivered to the home in advance.

Placement of the bed is something that requires careful thought. Often times the main floor of a home or apartment/condominium is a good choice and helps avoid the challenge of navigating stairs. Since mobility is often affected at the end of life, making sure there is a bathroom near the bed, or at least on the same floor will be necessary for toileting and washing.

Any additional medical equipment needed to ensure complete care and symptom management can also be ordered to the home, such as a wheelchair, shower chair, commode, and oxygen tank if needed.

If an upper floor bedroom is preferred for the bed, ensuring access to the bathroom or a commode remains important. All meals will have to be brought to the bedroom and visitors will likely need to be brought upstairs.

It is essential that those who choose to die at home have the proper home care in place to manage symptoms. This includes a physician and a nursing team who are available to make home visits. Home care is often arranged through a family doctor or a palliative care team at the hospital. However most of the monitoring of daily care is largely left up to family members and friends.

For your children, you being at home offers the opportunity for them to be in a familiar environment with you during this difficult time. This normalcy provides children with the ability to comfortably play with their own toys, 29

fix themselves snacks in their own kitchen and spend routine family time with their loved ones, like heading out to school in the morning, sharing meals together when possible and reading stories before bed.

Children should be prepared for the fact that there will be changes in the home, such as a bedroom possibly being set up in a living room, and that there may be many visitors, including the medical team. To create family time and space, discuss creating a visitor’s policy that is comfortable for both yourself and your family. Children will be around for many hours a day when not at school so it may help protect family time to try to schedule visitors for when children aren’t home. Regular check-ins and open communication about what is happening will be essential to supporting children through the home-care experience.

Regardless of where end of life care is taking place, kids may need you and the other adults in their lives to provide them with guidance on how to interact and “be” with you during this time. It can help to work together with children to create a list of quiet activities and play opportunities that they can engage in at the bedside even if they are not directly interacting with you. Finding special one-on-one activities for you and your child to do together or family activities requiring limited energy like movie night and story time can offer lovely moments of connection.

Explaining Physical Changes As changes are happening in your body, explain these changes to children in age-appropriate language. Some children also want to know what changes they can expect as you get closer to dying, so ask children if they want this information in advance or if they would prefer to learn it as the changes are starting to happen. The following are common physical changes that can be helpful to address with children:

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MOBILITY It is natural to experience a lack of energy and to spend an

increasing amount of time resting. This can mean resting your body and even your voice at times. You may find yourself spending more time in bed or in other sitting/resting positions. Explaining the need to rest and reduce your level of activity to children is helpful so that they can adjust their expectations and interactions. Inviting children to engage in quiet activities where they can be close with you and appreciate small moments of physical connection are important. “I might have a hard time moving around and will need help to move, so staying in bed or sitting may be all I can manage.”

S LEEPINESS Becoming increasingly sleepy with shorter and shorter waking periods is a natural part of the dying process. Explanation examples include: “As I am getting closer to dying I may often feel tired as well as weak and sleepy.” “You can still talk to me even if I cannot talk to you. Sometimes I’ll be able to hear you even though I don’t have the energy to talk.”

PAIN MANAGEMENT Sometimes the progression of disease can cause pain requiring the use of medications to manage the pain. Many medications can cause drowsiness resulting in periods of time when it can be hard to remain focused and awake. The medical team can help manage the pain while also allowing for periods of time when you can be awake and alert enough to have short conversations. The team will help with a plan to administer medications at specific times to ensure steady pain management without periods of breakthrough pain. Positions of comfort can be promoted with an assortment of pillows that help hold your body gently. “The pain medicine is not to make me get better or stop the dying from happening. It is to help me feel more comfortable and sometimes it makes me feel sleepy.”

LACK OF APPETITE It is common for there to be loss of appetite or sometimes difficulty or inability to eat during the late stage of cancer. It is natural for the body to need less food and fluid at the end of life. “When my body gets very close to dying, I may not need to eat or drink and often will not feel hungry or thirsty.”

The remainder of this resource addresses the final days and hours of living with cancer and the period following death. Some parents with cancer find it helpful to read this information, while others prefer for supporters such as another parent or friend to read these sections and use the information to help support your child. With this in mind, the content in the following sections addresses both a parent with cancer and supporters so that your child can receive on-going well-informed support through your friends and family.

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6. DYING AND DEATH: FINAL HOURS

Children’s Presence SOME PEOPLE KNOW RIGHT AWAY and have strong feelings about whether they are open to having children present at the time of death; others need more information to make a decision. Children benefit from being consulted about whether they want to be present when their parent dies. Let them know that they will be supported in whichever decision they make and that they can also change their mind at any time. Either way, a parent can include their children in their final days and hours in ways that support the children’s well-being.

If the child indicates that they do want to be present when their parent dies, prepare them for what they are likely to see, and how they can be involved. Also, a plan should be put in place to help make it possible to be there. The plan should include identifying someone to pick them up from wherever they are (school, camp, etc.) to bring them to the parent’s bedside when he/she is getting close to dying. This person may need to be from outside of the immediate family and should be someone the child indicates he/she is comfortable with.

It is also important to explain that we don’t always know exactly when someone will die, so it is not always possible to be there at the time of death.

Make a plan for how children want to find out about their parent’s death if 32

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they happen to be at school, at an extracurricular activity, or at a friend’s house at the time. Do they want a family member to come tell them or would they prefer to find out when they get home? Discussing this and having a plan in place ahead of time decreases the chance that a child will feel regret down the road about how they were involved.

Children have incredible imaginations so to prevent misunderstandings it is essential to keep it simple when discussing what may happen at the time of death. This conversation may need to be repeated several times and can be done by a trusted adult with whom the child feels comfortable. Questions should be encouraged and always answered no matter how repetitive and even strange the questions may seem. It is common for some kids to have questions about what happens when someone is actually dying based on what they have seen in movies, read in books or heard from friends.

Talking to children and giving them the opportunity to express their wishes regarding their level of involvement in their parent’s final days can help to give kids some feeling of control at a time when they may be feeling very helpless and as though everything is out of their control.

If you feel you need additional support in having these discussions, consider seeking assistance from a professional with experience in children’s grief.

Physical and Cognitive Changes Temperature fluctuations: As the body begins the transition from life to death, a person can experience great changes in body temperature — hot at one moment and extremely cold moments later. This can cause some discomfort and it becomes an important goal for everyone to find the right balance of blankets, fresh air and clothing. Children can help by choosing special blankets to have at the bedside for use when needed.

“When mom’s body is very close to dying, her arms and legs may feel cold to touch, and parts of her body may turn a blue colour, such as her lips, fingers, toes and knees.”

Breathing: Breathing changes at the end of life are noticeable and children need to be informed about them. It’s natural for breaths to become less regular in the final days of life. As the body gets weaker sometimes the breathing can sound like gurgling. Help children understand that although it might sound funny, it doesn’t mean it is uncomfortable. It can help to remind kids that snoring can sound loud and funny but the person who is doing it doesn’t even notice. “Mom’s breathing might be different, and sound light and quiet, or deep and gurgly at times. There may even be long breaks between breaths.”

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Disorientation: As a body is dying, less oxygen gets to the brain and this can cause confusion and significant discomfort that sometimes results in a person at the end of life saying and doing things that are strange and might not make sense. Talk to children about this and let them know that this is natural part of the dying process. “As mom’s body gets closer to dying, changes are happening in her brain that cause confusion, like calling people the wrong name, or not knowing where she is.”

Possible Scenarios Children present at the death: This can be a positive experience if it’s what the child wants. Planning for this can include an opportunity for family and friends to share messages of love with the person who is dying. Invite children to share what they would like to do and give them options such as: holding hands, snuggling in bed or simply sitting beside the bed or in another part of the room. Being present at the death can bring closeness, comfort and closure and can highlight the reality and finality of the end of a life.

Not having children present at the death: This may be a family member’s preference or a child’s decision. Sometimes this means that children will be elsewhere — at a close friend or family member’s house enjoying some time for play. This is where it helps if a plan is made in advance for how they want to be told about the actual death. Children can benefit from having the opportunity to see their parent’s body in the hours following death if the child chooses to do so. Some children have a strong desire to see the body one last time as a way of saying goodbye.

Children in the building, but not at the bedside: This option allows children to be close to their loved one when they are dying but provides distance if they are not comfortable with being beside them for the death.

It is important to let the children know when death is imminent so that they have the option to say goodbye one last time before the death. After the death, ask children if they want to see their loved one’s body to say goodbye and touch them one last time.

Unable to be there: We can’t always know exactly when death will happen so it may happen when everyone is sleeping or during the three minutes someone was in the bathroom. Regardless of why children weren’t able to be there, it’s important to give them the opportunity to express their feelings about that. If this happens, ask children if they’d want to spend some time with the parent’s body after death. This also offers children a chance to say goodbye and helps them understand that the death has happened.

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A Note About a Home Death Since medical professionals will not be present all of the time, there is a chance that the death may take place in their absence. In the event that this happens, there will be instructions about who to contact and how to make the appropriate arrangements. There will likely be a period of time where the body will remain in your home. This can provide an opportunity for family and friends that were not present at the death to view the body and say goodbye. Children can be welcomed to spend time with their loved one’s body at this time too.

Explaining That Death has Happened When the death has taken place, help support children’s understanding that their loved one has died by using simple, clear statements, such as: • “ Mommy/______ has died.”

• “ Mommy is dead. Her body has stopped working and will never work again. ”You can extend these statements to include: • “ Mommy’s body doesn’t need food or water, or a blanket to stay warm. Her body no longer feels anything because Mommy died.”

It is important to use clear and simple language and avoid euphemisms such as “passed away”, “drifted away” or “gone to sleep”. These types of statements may sound gentler but they can be confusing for young children and can cause fear of sleep, or an expectation that their loved one can return if they are only “away” for a short time.

Children may express a wide range of emotions when learning this news. Unless the child asks for time alone, stay with the child and provide comfort but don’t try to distract or change their reaction in any way. Let them know that they have every right to feel the way they are feeling.

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7. AFTER THE DEATH SUPPORTING CHILDREN AFTER A LOSS takes time, patience and understanding. Meet me where I am. Help me understand. Provide me with comfort and support.

Children may ask questions at any stage of the illness regarding what life will be like after death. These are some of the areas and circumstances you may need to explore and explain to children: •F or young children, understanding the finality of death will take time.

The “new normal” without a loved one’s physical presence unfolds and evolves slowly over time. Even with information and preparation through a long illness, the death of a parent can still come as a surprise for children.

Some children experience a period of shock or numbness during the first few months after the death, when it may not seem real to them yet.

• I mmediately after death, amidst all the important planning that needs to take place, the immediate family needs to make time to be emotionally available to the children, answer their questions, share feelings and be together without the distractions of phone calls and well-meaning guests.

•C hildren should have opportunities to play with friends and family, both at home and out of the home. Children have a natural tendency to feel profound sorrow one moment and then run off and play and genuinely enjoy life the next.

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Finding ways to balance positive and fun distractions with time to feel and process grief and the necessary planning will be of great benefit to everyone.

The Ceremony: Funeral, Memorial or Celebration of Life There are many ways to include and involve children in the formal proceedings after their parent’s death. Some people may struggle with whether children should be present at a funeral, shiva, or memorial.

With preparation and support, children of all ages can benefit from being included regardless of whether the ceremony involves a religious-based funeral or a secular one, and whether it takes place at a home, a funeral home, or the graveside. Some simple ways to include children in death ceremonies include: • Photo collages of them and their loved one • Drawings/paintings/art work • Video collages/montages of photos and videos of them and their loved one • Selecting meaningful songs/music • Decorating photo frames for sharing photos of their loved one • Setting out art supplies for creative expression (markers/paper/stickers) • Sharing family photo albums • Speaking/giving a speech/singing a song • Placing flowers • Writing something that someone reads out Discussing plans and explaining the details of what will happen at the funeral, memorial or celebration is helpful for children and can help prepare them for what to expect if they are unfamiliar with these experiences.

This should include: • Funeral service plans including location, funeral home, house of worship, cemetery, event space.

• Let children know the facts about why, where, when and what will be taking place.

• Share how long it will take to get there, and how much time you expect to be there.

•O pen or closed casket: If it is an open casket, children can be invited to see their loved one’s body,and place something in the casket, like a card, letter or goodbye item. Let them know that the person’s face and body may look different than what they are used to. The skin may be lighter and not as soft.

The person’s face may have make-up on. “If you want, you’ll be able to see her body in the casket. It’s safe to touch her or kiss her if you want to. She’ll 37

probably feel cold, and her skin may not feel as soft as usual. She may look like she’s sleeping, but she’s not — her body has died. You may not be able to see her legs because they are usually covered when someone is in a casket.

But even if you don’t see them, they are there.”

Invite children to ask questions. Keep in mind that even for closed casket services, most funeral homes will allow for family members to have a private viewing, which allows children to have a final opportunity to see their family member’s body if they choose. If they choose not to view the body, let them know that’s okay too.

Visitation Schedule There can be numerous visitation times planned for friends, relatives and colleagues to come pay their respects, connect with the family and celebrate the life of the person that has died. Consider visitation timing and appropriate ways in which children can be included. Prepare them for the fact that they may see a lot of adults crying because they are sad. They may also see people laughing and smiling as they share stories and wonderful memories. Make sure you plan for supervision and have someone who can be with the children during the visitation to offer quiet activities, like colouring and books to read should they need a break from the social interactions during visitation. While this should be someone who the child is comfortable with, it is ideal if the person is outside the immediate family so they don’t have to leave if the child needs a break.

Cremation If the body will be cremated, use child-friendly language to explain what that means, such as “Very hot/high heat will turn the body into ashes, which look like grey sand.” Clarify that the cremation will not hurt their loved one because the body has died and no longer works so it no longer feels anything.

Decisions about the appropriate place to keep and/or spread the ashes can be determined at a later date, and may take time to decide.

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Burial and Graveside Service When burial at a cemetery is planned, let children know that their loved one’s body does not feel anything and the burial will not hurt them. If there are traditional burial practices such as shovelling earth onto the casket once it is lowered into position, invite children to participate. Having child-size shovels available is helpful. Depending on the time of year and the expected weather on the day of the ceremony, it will be important to ensure that the children are appropriately dressed so that they can comfortably and safely participate.

Discuss the cemetery and burial site as a place to visit in the future.

Realistic Expectations No matter what type of ceremony, be realistic with your expectations of the children. If the service or proceedings will be long, ensure the children are prepared for that and have a plan for them in case they are unable to sit through the whole service. Many funeral homes, churches and houses of worship have a room available for families close to where the ceremony will take place. Consider arranging for a quiet activity to be set up in this room should the children need to excuse themselves from the service. Make sure there are friends and/or family that can help supervise/occupy the children.

Many friends and family members may share their feelings about children’s level of involvement at various events and ceremonies following the death. Certainly, consider all the possibilities and personal feelings, but speak with the children directly to determine the best way forward to help them be and feel included and supported at this important time. Even once plans are made, try to be flexible and patient if anything needs to change.

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8. GRIEF AND BEREAVEMENT A CHILD’S GRIEVING PROCESS after the death of a loved one is something that will unfold over the rest of their life. This grief and the grieving process will grow and change many times over many years.

Everyone experiences loss differently and everyone will grieve differently to a degree as a result of that. Let children know that it is common to feel a wide range of different feelings when someone they love has died. It is important to explain that it is natural to have feelings such as sadness, worry, anger and loneliness after the death. They may have feelings of confusion and frustration about all the big changes in their life after the loss. It is also natural to experience feelings of happiness, gratitude and joy when sharing an activity with friends or family.

Staying connected Children naturally keep a close connection to a loved one who has died and they benefit from other adults in their life openly sharing stories and memories of the person as well. Developing routines and rituals for sharing memories helps children to maintain this connection. When a parent dies, it is the responsibility of the family and community to help keep the child connected with their parent, and to help the child to develop a “new normal” 40

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in their life. This “new normal” involves the parent not being physically present yet remaining an important part of the child’s life.

Adults can model remembering by sharing their stories of the person who died and inviting children to also share their own memories. Many children welcome hearing both recent memories about the loved one, as well as older memories from before they were born. Most children also like to hear stories about what their family member was like, what they liked/ disliked (favourite foods, music, places), and what life experiences they had before the children were born.

While some children may want to share their own memories of their loved one, others may choose to just listen. Continue to provide opportunities to share memories without any pressure on children to have to contribute until they choose to do so. If children express that they don’t want to hear stories about the person who died right now, gently let them know that if they feel differently about this down the road they can let you know and you will always welcome the opportunity to share these stories with them.

“It is the responsibility of the family and community to help keep the child connected with their parent” Children benefit from having the opportunity to grieve and remember with the adults in their lives. Some activities that can foster this include: •P icking out a special piece of clothing or item that belonged to their loved one. (For very young children, adults are encouraged to put something special aside for them) • Selecting a favourite photo of their loved one to keep in their bedroom •P lanting “forget-me-not” flowers, or their loved one’s favourite flowers in the garden or in small flower pots •M aking playlists of songs that remind them of the person, or of songs their loved one enjoyed • Providing a notebook or sketchbook for children to draw or write in •C reating a memory book where children, family members and friends can share memories •S electing a T-shirt that was their loved one’s and inserting a pillow to create a unique “hug” pillow •E xploring children’s books together that talk about feelings, loss, death and dying. Many bookstores carry a wide range of these books for children of all ages, as do local public libraries 41

It is key that grieving children have the support of caring adults who are emotionally available to them and who understand that grief is a healthy response to loss. As children grow and develop, it is natural for children’s grief to come to the surface at various times as their understanding of the death and how it affects them changes. As they revisit their grief at various developmental stages their support needs will change too — for example, peer support often becomes more important to children as they get older.

There are excellent literary and web resources available for supporting grieving children and teens. Some communities also have organizations and programs designed to provide teens and children with in-person grief support. Family physicians, palliative care teams, cancer centres, schools and child and youth mental health organizations may be able to recommend such resources.

Moving forward after a significant loss can be a challenge. Many people find that it helps to focus on just taking one step at a time. With loving support, and examples of healthy grieving by the key adults in their lives, children can integrate their loss in a way that allows them to stay closely connected to the person who died and to live a meaningful and fulfilling life.

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TALKING TO KIDS ABOUT METASTATIC BREAST CANCER

Rethink Breast Cancer’s mission is to empower young people worldwide who are concerned about and affected by breast cancer through innovative education, support and advocacy.

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TALKING TO KIDS ABOUT METASTATIC BREAST CANCER