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When a member of your family or a friend of the family (i.e., teacher, coach, etc.) has been diagnosed with a terminal

illness, it is important to integrate the experience with your children so they understand. Often times, a child's

fantasies and fears are worse than reality.

• When speaking with your child about a terminal illness use correct medical terms. Don't over explain, but be

honest. If the patient has changed in physical appearance, such as noticeable weight loss, explain to the child

why this has happened prior to visiting the patient.

• When the patient is in a hospital or nursing home, describe to the child what he or she may see. Offer the

choice of a phone call, letter, or drawing if he or she seems reluctant to visit.

• Reassure your child that nothing they did, or did not do, caused the illness. Some children feel guilty for things that have nothing to do with the illness.

• Children are very sensitive to the emotions of adults, and will respond to your emotional status, as much as to

the knowledge that the person is very ill.

• Encourage communication. Do not assume lack of questions means lack of interest. Children are more likely

to express themselves through art, play, or action rather than words.

• Share your feelings to help your children understand his or her feelings. By sharing, you can reassure your

child that it is alright to have certain feelings. Children model coping skills and behavior from adults.

• Try to maintain a normal routine. Children need structure to feel secure during stressful times. They also

need to be involved in appropriate ways in order to not feel left out when the focus of the family is on the patient's needs.

• Encourage other family members, friends, and neighbors to provide support and structure for the child when

you have to provide care for the patient.

• Do not let the child assume the caretaker role. Some children will try to take care of the parent. Reassure

them that there are things that they can do to help, but they are not expected to assume adult responsibilities.

• Communicate with your child's teachers and others about the change in your child's life. They may be able to provide them extra support and personal time.

• Children cope best by understanding. Providing some of the answers will prepare your child for the changes occurring in his or her life.

• A Social Worker who is trained in dealing with grief can help provide families information on helping your child

based on their developmental stage. They can also help by allowing the children to ask emotionally sensitive

questions they might be afraid to ask from family members because of the fear of making someone upset.

Nycitteogaid 7a/1k, o6 Citielitooctbudawit gitie4 . Accept the reality of the death.

2. Experience the pain of the death.

3. Adjust to the environment in which the deceased is missing.

4. Relocate the deceased within one's life and find ways to memorialize the person.

Adapted from J. William Worden's Four Tasks of Mourning

cowl/Lai, lam& la copyitute, gue4 1#1, ckehttit,

I. Adults' inability to mourn.

2. Instability of family life after death.

3. Prior experience with loss or death.

4. Making the child a confidant.

5. Keeping a child from the funeral.

6. Number of children in the family.

Adapted from Children & Grief: When A Parent Dies. J. William Worden, Ph D. and When A Student Dies: A School Mourns, Ralph A. Klicker.

AtictitiVutt PeriOUltta

Books for Children: • Clifton, Lucille. Everett Anderson's Goodbye (young boy experiences grief following the death of his father).

Ages 3-9, death of a parent.

• Silverman, Caroline. Help Me Say Goodbye: Activities for Helping Kids Cope When a Special Person Dies. (A workbook style book that is good for journaling and drawing) ages 3-11.

• Brown, Laurie Krasny and Marc Brown. When Dinosaurs Die: A Guide to Understanding Death. (book

discusses as causes of death, what death is, and customs around death using cartoon dinosaurs). Ages 5-12.

• Heegaard, Marge. When Someone Very Special Dies (workbook format dealing with lifecycle, grief

reactions, memories and coping strategies, in Spanish as Cuando Algyien Muy Especial Muere). Ages 5-10.

• Schweibert, P. and Deklyen (2006). Tear Soup. (Beautifully illustrated book about how grief is different for

everyone, each person must create their own "tear soup"). Ages 5-12 and 20+.

Books for Teens and Tweens: • Gootman, Marilyn. When a Friend Dies: A Book for Teens About Grieving and Healing. (From first

days to after death to the future).

• Hughes, Lynne B. You Are Not Alone: Teens Talk About Life After the Loss of a Parent. (From the

first days to after death to the future).

• Wolfelt, Alan. Healing Your Grief for Teens: 100 Practical Ideas.

Books for Parents and Adults of Grieving Children and Teens: • The Dougy Center (2000, 2004). 35 Ways to Help a Grieving Child. • Fitzerald, Helen. The Grieving Child: A Parent's Guide. or The Grieving Teen. • Kilcker, Ralph. A Student Dies, A School Mourns: Dealing with Death and Loss in the School

Community. Brunner-Routledge.

• Rubel, Barbara. But I Didn't Get to Say Goodbye (A book for parents

and professionals helping child suicide survivors; portions may be

read aloud with older children) Griefwork Center Inc, New Jersey.

4Ik

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Child Speak for Death and Mourning Rituals

Children are very literal and yet have a rich fantasy life. Language skills are still developing long into adolescence and young adulthood. They also learn myths from other kids in the neighborhood, their family, and their schools. Keep this in mind when you are trying to explain death and mourning, rituals. Use simple and honest language and try to let them lead with any questions they may have.

Ashes What is left of a dead body after cremation; is white or gray in color, and looks

and feels like tiny rocks or chunky sand (also called "cremains").

Burial Placing the body (inside a casket or urn) into a special place called a cemetery.

Casket A special box (usually 4 sides) for burying a dead body. (In movies it can be

called a "coffin" when it has six sides).

Cemetery A place where many dead bodies and ashes are buried. (One child called it the

"people park" because it often looks like a park with grass and trees).

Columbarium A small building at a cemetery where ashes are placed.

Cremation The process of turning a dead body into ashes. The body is placed in a special

box at the crematorium, and it is heated until it turns into ashes.

Dead When a person's body stops working. It does not see, hear, feel, eat, breath,

etc. anymore.

Funeral A ceremony where friends and family get together for a time to say goodbye to

and remember or share memories of the person who died. Sometimes the

body can be viewed at the cemetery.

Funeral Home A place where bodies are kept until they are buried or cremated. Sometimes

the funeral or viewing can happen here.

Grave The hole in the ground where the body is buried at the cemetery.

Headstone The sign that marks the place where the body is buried or ashes are placed. It

is often made of stone or metal and may be engraved with the person's name,

date of birthday and date of death. The "head" is not placed inside the stone

(also called the grave marker).

Hearse The special car that takes the dead body in the casket to the grave (often at the

cemetery).

Memorial services See funeral for definition of ceremony. Usually the body is not viewed at this

ceremony (also can be called a 'celebration of life').

Obituary A short article in the newspaper that tells about the person who died.

Pallbearer The people who help carry the casket at the funeral.

Scattering When the ashes of the cremated body are emptied onto a special place (in the

air, water, or on the ground). Can be a ceremony with family and friends.

Urn A special container that holds and protect the ashes of the cremated body.

Viewing The time when people can see the body of the person of the person who died

and say goodbye.

Adapted from Worden, J. W. (1996), Children and Grief: When a parent dies. Pages 140-147. Guilford Press, New York, NY.

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Coping with Illness and Death For Children Ages 0 to 5

Children have been referred to as the "silent grievers." As adults we tend to want to protect them from the pain of loss. However, that is not always

possible. When a loss occurs in a child's life, the experience can be seen as

an opportunity to teach children effective coping skills and the reality is that they will experience more loses throughout their lives. Knowing how to support children through grief can be difficult, especially if you are also

grieving. The following is information that can help you support the grieving children in your life.

Infants or Very Young Children

Infants and children under the age of 3 years do not understand death in the

same way adults do. Still, they need to be told that the loved one is very sick, but not with something that you get over, like a cold or sore throat.

The goal is to take advantage of the time they have left with the child and to

keep the child's routine as normal as possible so that the child feels loved,

safe, and cared for. As death nears, it helps children to know that their

loved one will be in bed more and won't be able to play or even talk much.

It doesn't mean that they are mad or doesn't love the child. Gentle cuddling,

hugging, or holding hands may be possible.

Any questions the child asks should be answered as honestly as possible, in

words that child can understand. As the child gets older, he or she will be

able to understand in more detail what happened with the loved one.

Possible approaches for working with children ages 0 to 5:

✓ Have a loved one or trusted adult who is a regular part of the child's life

spend time with the baby or child daily.

✓ Keep the baby or child near the loved ones or regular adult caregiver if

possible.

✓ Get your relatives, nanny, or day care providers to help maintain the

baby's or child's routine.

✓ Record lullabies, stories, and messages for when the loved one will not be there.

✓ Cuddle and hug often.

✓ Arrange visits to the ill loved one while in hospital for cuddling and comfort.

Children Ages 3-5

Generally children younger than 5 are not yet able to understand that death

is permanent, and that it happens to everyone. Children at this age may expect that someone who has died will come back. They can't understand the finality of death. It often takes time and growing up for them to realize that the loved one they loved will not return. So when a child asks if they

can draw a picture to "give mommy for Christmas," they are only expressing what they cannot understand. Do your best to try to give them accurate information which they can build on as they get older.

When death is very close, the child should know that at some point the loved one will die and the body will

be taken away soon after. If you say things like "mommy will go to sleep," the child will realize at some point that mommy didn't wake up. Children told these kinds of stories can become afraid to go to bed at night, so

it's important to tell the truth and use the right words.

Possible Approaches for Working With Children Ages 3 to 5:

• Keep explaining changes that are caused by cancer and its treatment (again, without being too optimistic or pessimistic). Remember that the child may be able to say back to you what they heard the first time or

two, but this doesn't mean they understand it.

✓ The child will probably show more fear and anxiety when away from the main caregiver. The child will need a consistent substitute caregiver when the main one cannot be present, and will need to be assured

that they will always be cared for.

• Get your relatives, nanny, or daycare providers to help maintain the child's routine and provide daily care.

Be sure the caregivers know about the family situation.

✓ Have a loved one who is a regular part of the child's life spend time with the child every day.

✓ If a loved one is in the hospital, plan short visits with fun activities that include the loved one. Be sure that the child has toys and understands which of the usual things that the loved one cannot do. Explain any differences in how the loved one looks before the visit.

• Use play and artwork to show a child the complicated things that are happening in the family.

• Set up a regular time when you are not rushed each day, so the child can ask questions and share feelings.

• Long emotional displays from a loved one can frighten a child at this age; but assure the child that it's okay

to express intense feelings for short times. After such feelings are expressed, it's common for the child to

change the subject or go off to play.

✓ Arrange for one family member or trusted friend to take a special interest in each child.

✓ You can use examples of animals or insects that have died to show the child that there is no movement

and that living creatures don't come back after death. You can also point out that the animal doesn't feel pain after death.

Describe the funeral or memorial ritual for the child and tell them

what others will do and how they may feel. The child may want to give something to the loved one, by placing it in the casket, the ground, or the cremation urn. If the child wants to do something

like this, explain how this would work. You may also want to

assign a caretaker to take the child outside for a break during the

service, since it is likely to be too long for most pre-school

children to sit through.

After death, the child may feel upset that the loved one doesn't come home day after day. They may ask the same questions over and over, like, "Where did he go?" Offer the child things that seem important from the loved one who died, such as special belongings, clothes, or gifts they may have left for the child. Be prepared for trouble sleeping, and the child being clingy and not wanting to sleep alone. These usually get better over the course of a few

months. If they are available, it may help the child to go to

bereavement groups with other children.

(Excerpt from Helping Children When a Family Member Has Cancer: Dealing with a Parent's

Terminal Illness, American Cancer Society. To obtain the full document contact your

Heart 'n Home Social Worker.)

Ele Hospice &

Palliative

Care, LLC

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"I believe that

imagination is

stronger than

knowledge - myth is

more potent than

history - dreams

are more powerful

than facts - hope

always triumphs

over experience -

laughter is the cure

for grief - love is

stronger than

death." - Robert Fulghum

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Coping with Illness and Death Children Ages 6 to 8

Children have been referred to as the "silent grievers." As adults we tend to

want to protect them from the pain of loss. However, that is not always

possible. When a loss occurs in a child's life, the experience can be seen as an

opportunity to teach children effective coping skills and the reality is that they

will experience more loses throughout their lives. Knowing how to support

children through grief can be difficult, especially if you are also grieving. The

following is information that can help you support the grieving children in

your life.

Children ages 6 to 8 are able to understand death, but they may see it as a

monster, ghost, boogey-man, or some other such creature. Death may take

the form of an outside person who can come to catch them and if they run

fast enough, they can escape. Children in this age range worry about

monsters under the bed, witches, or devils and it is often hard to reassure

them that such creatures don't exist. They may also think that another loved

one could have prevented the illness or death from happening. They may

blame themselves that the loved one died.

Children at this age may come up with their

own explanation of things, like why a sick loved

one won't play with them, "Mommy doesn't love me anymore because I told her I hated her." It's

important to explain changes right away.

"Mommy can't play with you because she's sick. She

loves you a lot and still wants you to have fun." Once the child believes their own interpretation, it can be difficult to change

their mind and it requires lots of repetition and reinforcement. It is

sometimes very frustrating and painful to try to persuade a child that a loved

one has really died. Be patient with yourself in these discussions—don't be

hard on yourself that somehow you can't get through a child's normal defense

against such a difficult reality.

Possible approaches for working with children ages 6 to 8::

✓ Keep the child up to date about the terminal illness and be sure to explain

what the child sees and hears. You may need to keep repeating this

information.

✓ Prepare children for hospital visits and explain what they will see. Give

more information and offer time for questions after.

✓ Answer all questions honestly, including, "Will mom (or dad) die?" Get

help from the Social Worker and cancer care team if needed.

✓ Tell the child when death is getting close. If possible, allow the child to

visit one more time. Describe the loved one's condition and make

suggestions as to what the child might say or do. Just touching their loved

one can mean a lot to the child.

Children Ages 6 to 8 Continued

✓ Find out if the cancer center has special support groups for kids

who have lost a loved one to cancer.

✓ Children this age are likely to be upset by a loved one who has a

prolonged show of sadness or strong anger. Loved ones need to

have their emotions fairly well controlled for talks with the child,

but expect that the child can become highly emotional. Assure the

child that it's normal to be upset, sad, or angry, and that you still

love and care for them.

✓ Give the children permission to ask questions and express feelings

they think might upset others.

• If a loved one has trouble listening to the child's distress because of

their own, get the help of family, friends, social workers, or other

professionals to talk with and listen to the child.

✓ If the children are having trouble with school, explain that it is

normal for school performance to suffer a bit when a loved one is

in the hospital and that you are not upset with them.

✓ Tell the child that it is hard for everyone in the family, but that you

are there for them.

✓ Assure children that this is not their fault - they didn't cause the

cancer or the death.

✓ Tell the child's teachers, coaches, and other school staff about the

family's cancer situation.

✓ Arrange for the child to stay in school and keep other activities on

schedule as much as possible.

✓ Support the child having fun, despite the loved one's illness or death

- make sure they don't feel guilty about it.

✓ Set up regular substitute caregiver when the loved one is away or

Reassuring Children: Something to Treasure

Children in this age range want to know that their loved one cared for

them. Some want to hug the loved one or hold their hand. Some are

comforted by exchanging gifts or cards with the loved one. These small

gestures can become treasured memories for the child. They want to

feel loved and cared for.

After death, it often helps to give the child something that belonged to

the loved one to help them feel connected. Some children may want to

write a letter or select a special item to send off with the loved one.

(Excerpt from Helping Children When a Family Member Has Cancer: Dealing with a Parent's Terminal Illness,

American Cancer Society. To obtain the full document contact your Heart `n Home Social Worker.)

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Coping with Illness and Death Children Ages 9 to 12

Children have been referred to as the "silent grievers." As adults we tend

to want to protect them from the pain of loss. However, that is not

always possible. When a loss occurs in a child's life, the experience can be seen as an opportunity to teach children effective coping skills and the

reality is that they will experience more loses throughout their

lives. Knowing how to support children through grief can be difficult,

especially if you are also grieving. The following is information that can

help you support the grieving children in your life.

Children ages 9 to 12 years old may have feelings of sadness and loss during terminal illness and after a loved one's death. They may even feel

embarrassed about their outbursts of strong emotions. Children at this age are able to understand serious illness and the finality of death, as long

as they are given clear information all along. This doesn't mean that the child won't still have a fantasy sometimes about Mom or Dad coming back

from death, but with gentle reminders they usually can accept the reality.

The child will need detailed, concrete, and complete information about

the loved one's illness and its treatment to understand what's going on. Understanding doesn't come in one brilliant flash, but slowly over time,

when the truth has a chance to sink in and the child can more easily

tolerate the loss.

Possible approaching for working with children ages 9 to 12:

✓ Give fairly detailed information about the terminal diagnosis: name of the disease, specifics, symptoms, and as much as possible about what

to expect.

• Explain what the child sees. Answer questions honestly.

✓ Assure child the illness (or death) is not their fault.

✓ Tell the child that the uncertainty is stressful for everyone, with

reminders that the family is strong and will get through this painful

time together.

• Have the child visit the loved one in the hospital. Explain the terminal condition and treatment Suggest topics to discuss. It is helpful if children this age can meet medical staff (i.e. nurses, doctors, etc.) and explore the hospital. Prepare the child for any differences in how the loved one may look before you go.

✓ Help the child stay involved in after-school activities, sports, and keep

him or her in contact with friends. Remind the child that it's okay to

have fun.

✓ Inform the child's teachers, coaches, and other school staff about the family situation.

✓ Explain that it's good if the child is interested in helping with the loved

one's care, but keep in mind that the child cannot be in charge of the

care.

"There are things

that we don't

want to happen

but have to

accept, things

we don't want to

know but have

to learn, and

people we can't

live without but

have to let go."

— Unknown

Ages 9 to 12 Continued

✓ Encourage the child's interest in reading or writing about cancer

or its treatment and their personal response to the loved one's

illness.

✓ Arrange for one family member or trusted friend to take a special

interest in each child.

It is better for the child if he or she is prepared for the loved one's

death. Afterward, the child may cry, scream, laugh, or want to be

alone for a time - any of a range of emotions is possible. Or, they

might want to avoid any strong emotions, but will express their

feelings in other ways such as by being messy or stubborn or arguing

a lot. Children this age may want to take active parts in the funeral or

put special items in the casket.

After the loved one's death, the child may have trouble sleeping.

Some find it comforting to have clothing or

other items that had belonged to the loved

one, especially during the first year or so.

Most like looking at pictures of their loved

one during happier times and hearing stories

about them. Routines are important, so try

and get back to them quickly. Help the child

get back to school and their usual activities at

least by the time all the ceremonies are over.

"I believe that

laughter is the only

cure for grief. And I

believe that love is

stronger than death."

- Robert Fulghum

Normal Grief Reactions

v Difficulty realizing that death is FINAL. v Feelings of helplessness and hopelessness.

v Curiosity about physical/biological aspects of death.

v Increase in risk-taking and self-destructive behaviors.

v Often feel responsibility and guilt. v Anger; aggression; fighting; oppositional behavior.

v Tend to emotionally distance themselves. v Withdrawal from adults.

v Physical symptoms (headaches, stomachaches,

sleeping and eating disorders, hypochondria). v v

Depression; sadness.

Lack of concentration and attention. v Wide mood swings. v Identity confusion; testing limits .

It is important to remember that just like adults, children do not know how to work through all the intense

feels that come with grief. They are trying to figure their grief out. Know what is normal to expect from

grieving children is important. It is also important to remember that when behaviors become destructive

children need the adults in their lives to hold them accountable and protect them.

Do not be afraid to set limits and give consequences when necessary. This sends a message that they are

important and are cared for.

(Excerpt from Helping Children When a Family Member Has Cancer: Dealing with a parent's Terminal Illness, American Cancer Society. To obtain the full document contact your Heart 'n Home Social Worker.)

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Coping with Illness and Death For Teenagers

Children have been referred to as the "silent grievers." As adults we

tend to want to protect them from the pain of loss. However, that is

not always possible. When a loss occurs in a child's life, the experience

can be seen as an opportunity to teach children effective coping skills

and the reality is that they will experience more loses throughout their

lives. Knowing how to support children through grief can be difficult,

especially if you are also grieving. The following is information that can

help you support the grieving children in your life.

Adolescents may have a particularly tough time with the loss of a loved

one. If you think about what a teenager needs to accomplish in growing

up, this is easier to understand. The task of the teenage years is to

achieve a separate identity from a child's loved ones and discover

themselves as young adults. The struggles that go on between loved

ones and their teenagers are a normal and necessary part of gaining a

new identity.

Teenagers often behave in opposite and unpredictable ways - one day

they feel independent and the next they retreat into the safety of

childhood. As every parent of a teenager knows, it can be a delicate

balancing act between giving a teenager enough independence to learn

and experience the world while trying to protect them from what they

are not yet mature enough to handle. These struggles go on in every

household. Teens are old enough to know that their lives will greatly

change due to their loved one's illness and death, and they struggle to

deal with this unmanageable threat. They may cope in ways that are

hard for a loved one to deal with, such as refusing to talk about the

illness or trying to take control. Others may adapt, try to get closer to

them, and/or try to restore order to the home. As the loved one gets

sicker, the teen may want to sit with them for short times each day.

Some teens may want to be as far away as possible from their sick

family member and thoughts about their death. Most want to spend

time with the loved one, but still have some time to be a kid. It's okay

for the teen to help out, but they should not be in charge of their loved

one's care.

Possible approaches for working with teenagers:

✓ Give detailed information about the terminal diagnosis such as the

name of the cancer, symptoms, possible side effects of medicines,

what they might expect, and other information if they are

interested.

✓ Keep the teen up to date with what's happening with the treatment. Answer all questions honestly, even as death approaches.

✓ Have the teen visit the loved one in the hospital. Suggest ideas for

topics they may want to discuss with the them.

"Perhaps they are not stars, but

rather openings in heaven where the love of our lost

ones pours through and shines down upon us to let us know they

are happy."

- Eskimo Proverb

Teenagers Continued

✓ Tell the teen's teachers, coaches, and other school staff about the family situation.

✓ Discuss any spiritual concerns related to illness, death, and dying.

✓ Explain that even though the loved ones have less time for the children during severe illness, they are still

loved and valued.

✓ Arrange for as normal a life at home as possible.

✓ Don't expect the teen to take on caregiving and other difficult tasks.

✓ Talk with the cancer care team about your family situation and see if you can get other help.

✓ When possible, let the teen help choose where to go after school and have a voice in whose care they

prefer when a loved one can't be there.

✓ The teen may feel bad about having fun when a loved one is sick or dying. Be sure that the teen knows their loved one is aware that having fun and spending time with friends are important parts of their lives,

and there's no need to feel guilty about it.

✓ Encourage teens to keep up their usual involvement in school and other activities.

✓ Ask a relative or trusted friend to take a special interest in each teen in your family.

✓ Teens may try to protect loved ones by trying to hide their sadness, anger, or fears. Check in with your

teens often and let them know that everyone has feelings that can be confusing and overwhelming. Tell the

teen it's okay to ask you questions and express feelings that they think might upset others.

Teens have a grown-up understanding of death and what it means.

After a loved one dies, some teens cry or get very angry, while

others want to spend time alone. Some need to be around friends and talk. The teen needs to know that there is no right way or

wrong way to grieve and they can deal with it in their own way.

There will be a lot of changes, though. It helps to keep a regular routine with friends, activities, and school.

Because of the turbulent nature of this stage of growth, a loved one's

death during the teen years can result in difficulty for the child to

achieve an identity separate from the loved one. This doesn't mean

the child is forever damaged, but that it will be important for them

to have relationships with other adults so they can continue to develop a sense of self. The teen may regret arguments with the loved one, disobedience, and other issues. There may be guilt over what the teen said or didn't say to them. Sometimes it helps for the teen to write a letter to the loved one saying all these things they didn't say before, and all the things they want to say to their loved

one now. For many teens, it helps to talk to an adult who can listen without judging them. There are also support groups and websites that are just for teens - these can be valuable as safe outlets for feelings and good sources of support and encouragement.

(Excerpt from Helping Children When a Family Member Has Cancer: Dealing with a Parent's Terminal Illness, American Cancer Society. To obtain the full document contact your Heart 'n Home Social Worker.)