Key Points

• Grief is the emotional response to the loss of a loved one.
• Mourning is the way we show grief in public.
• Bereavement is the period of sadness after a death of a loved one.

Grief is the emotional response to the loss of a loved one.

Common grief reactions include:

• Feeling emotionally numb.
• Being unable to believe the loss occurred.
• Having anxiety from the distress of being separated from the loved one.
• Mourning along with feeling depressed.
• A feeling of acceptance.

Mourning is the way we show grief in public.

The way people mourn is affected by beliefs, religious practices, and culture. Grief and mourning are closely related.

Bereavement is the period of sadness after a death of a loved one.

Grief and mourning occur during the period of bereavement. People who are grieving are described as bereaved.

Key Points

• There are three types of grief: anticipatory, normal or common, and complicated.
  • Anticipatory grief occurs before death.
  • Anticipatory grief does not affect everyone.
  • Normal or common grief begins soon after a loss and symptoms go away over time.
  • Normal grief is different from major depression.
  • Complicated grief lasts longer than normal grief.

There are three types of grief: anticipatory, normal or common, and complicated.

Anticipatory grief occurs before death.

Anticipatory grief is grief that occurs leading up to a death. It may be felt by the person dying or person's family. When a patient experiences distress, pain, and medical complications, it can add to anticipatory grief. Anticipatory grief is different from grief that occurs after the death.

Anticipatory grief does not affect everyone.

Research has shown that about one in four patients with incurable cancer feels anticipatory grief. Anticipatory grief is less likely to occur when the patient and family accept death. Talking with someone who is trained in grief and bereavement may help patients and their family come to terms with impending death.

Normal or common grief begins soon after a loss and symptoms go away over time.

Normal grief occurs in most people who have experienced a loss. During normal grief, the bereaved person accepts the loss and continues with daily activities even though it is hard to do. Common emotional reactions include:

• Emotional numbness, shock, disbelief, or denial. These often occur right after the death, especially if the death was not expected.
• Anxiety over being separated from the loved one. The bereaved may wish to bring the person back and become lost in thoughts of the deceased. Images of death may occur often in the person’s thoughts.
• Distress that leads to crying; sighing; having dreams, illusions, and hallucinations of the deceased; and looking for places or things that were shared with the deceased.
• Anger.
• Periods of sadness, loss of sleep, loss of appetite, fatigue, guilt, and loss of interest in life.

Grief bursts or pangs are short periods (20-30 minutes) of very intense distress. These bursts are caused by reminders of the deceased person, such as during holidays, the anniversary of the loved one’s death, or when giving away items that belonged to the person. At other times they seem to happen for no reason.

In normal grief, symptoms will occur less often and will feel less severe as time passes. Recovery time will vary with each person. For most bereaved people, symptoms lessen between 6 months and 2 years after the loss. Although many bereaved people have similar responses as they cope with their losses, there is no typical grief response.

Normal grief is different from major depression.

When a person grieves they can have symptoms that overlap with major depression, such as sleep problems, feelings of guilt, repeated thoughts, and lack of interest. Normal grief is different from major depression in the following ways:

• Painful feelings come and go instead of being constant.
• There are feelings of emptiness rather than sadness or not feeling pleasure.
• People have good self-esteem and do not feel worthless or badly about themselves.
• If there are thoughts of suicide, they are focused on the deceased person, such as a wish to join them in death, instead of thoughts about oneself.

A bereaved person can be diagnosed with major depression if they have symptoms that occur outside of the normal grief process.

Complicated grief lasts longer than normal grief.

Complicated grief is when symptoms don't improve and last for a long period of time, cause extreme distress, affect multiple areas of their lives, and decrease the ability to take part in daily activities.

Key Points

• There are factors that affect the response to grief.
  • The personality, age, and gender of the bereaved may affect whether they are more likely to experience depression with their grief.
  • Culture and religion play a part in grief and bereavement.
  • Coping skills and mental health history affect the response to an expected or unexpected loss.
  • Social support for the bereaved.

There are factors that affect the response to grief.

A person’s grief is affected by their:

• Personality, age, and gender.
• Cultural and religious background.
• Coping skills and mental health history.
• Amount of support they have.
• Social and financial position.
• Relationship with the person who died.
• The deceased's cancer experience and the way the disease progressed.

The personality, age, and gender of the bereaved may affect whether they are more likely to experience depression with their grief.

Studies have found that people with certain personality traits are more likely to have long-lasting depression after a loss. These include people who are dependent on a loved one (such as a spouse), and people who deal with distress by thinking about it all the time.

In general, younger bereaved people have more problems after a loss than older bereaved people do. They have more severe health problems, grief symptoms, and other mental and physical symptoms. Younger bereaved people, however, may recover more quickly than older bereaved people do, because they tend to have more resources and social support.

Men have more problems than women do after a spouse’s death. Men tend to have worse depression and more health problems than women do after the loss. Some researchers think this may be because men tend to have less social support after a loss.

Culture and religion play a part in grief and bereavement.

Grief occurs in all cultures. However, some cultures have different beliefs about death that affect the attitudes and practices of the bereaved. They use what will best meet their needs to deal with death.

Some studies show that religion helps people cope better with grief, while other studies show it does not help or causes more distress. Regular church attendance and social support from a religious setting are linked to positive grief outcomes, such as coping and understanding the loss.

Coping skills and mental health history affect the response to an expected or unexpected loss.

It may seem that any sudden, unexpected loss might lead to more difficult grief. However, studies have found that bereaved people with high self-esteem and/or a feeling that they have control over life are likely to have a normal grief reaction even after an unexpected loss. Bereaved people with low self-esteem and/or a sense that life cannot be controlled are more likely to have complicated grief after an unexpected loss. This includes more depression and physical problems.

Social support for the bereaved.

Lack of social support increases the chance of having problems coping with a loss. Social support includes the person's family, friends, neighbors, and community members who can give psychological, physical, and financial help. After the death of a close family member, many people have related losses. The death of a spouse, for example, may cause a loss of income and changes in lifestyle and day-to-day living. These are all related to social support.

Key Points

• Normal grief may not need to be treated.
• Cognitive behavioral therapy may help people with complicated grief.
• Depression related to grief may be treated with drugs.

Normal grief may not need to be treated.

Most bereaved people work through grief and recover within the first 6 months to 2 years. Researchers are studying whether bereaved people who have normal grief would be helped by treatment. They are also studying whether treatment might prevent complicated grief in people who are likely to have it.

For people who have serious grief reactions or symptoms of distress, treatment may be helpful.

Cognitive behavioral therapy may help people with complicated grief.

Cognitive behavioral therapy (CBT) helps a person learn skills that change negative thoughts and behaviors about grief.

A clinical trial compared CBT to counseling for complicated grief. Results showed that patients treated with CBT had more improvement in symptoms and general mental distress than those in the counseling group.

Depression related to grief may be treated with drugs.

There is no standard drug therapy for depression that occurs with grief. The decision to treat grief-related depression with drugs is up to the patient and the health care professional.

Clinical trials of antidepressants for depression related to grief have found that the drugs can help relieve depression. However, they give less relief and take longer to work than they do when used for depression that is not related to grief. Some clinical trials have found that psychotherapy while on antidepressants can improve depression and reduce the intensity of grief.

Key Points

• Children have a different grief experience than adults.
• Several factors can affect how a child will cope with grief.
• A child’s understanding of death and the events near death depend on their age and developmental stage.
• There are three common worries children coping with a loss have about death.
  • Did I make the death happen?
  • Is it going to happen to me?
  • Who is going to take care of me?
• Talking honestly about the death and including the child in rituals may help the child cope with the loss.
  • Explain the death and answer questions.
  • Use the correct language.
  • Include the child in planning and attending memorial services.
• There are books and other resources with information on helping a grieving child.

Children have a different grief experience than adults.

Children do not react to loss in the same ways as adults. These are some of the ways children's grief is different:

• Children show grief once in a while and for a short time span. A child who grieves may be sad one minute and playful the next. Often families think the child doesn’t understand the loss or has gotten overit quickly. Usually, neither is true. Children’s minds protect them from what is toomuch for them to handle.
• The bereavement process maycontinue as the child gets older. Children will revisit the loss repeatedly, especially at important times, such asgoing to camp, graduating from school, getting married, or having children.
• Grieving childrenmay not show their feelings as openly as adults. Grieving children may jump rightinto activities instead of withdrawing or showing grief.
• Children cannot think through their thoughts and feelings like adults. Children may have trouble putting their feelings about grief into words. Strong feelings of anger and fearsof death or being left alone may show up in the behavior of grieving children. Children often play death games as a way of working out their feelings andworries. These games give children a safeway to express their feelings.
• While grieving adults may withdraw and not talk to other people about the loss, children often talk to the people around them (even strangers) to seehow they react and to get clues for how they should respond to the loss.
• Children mayask confusing questions such as, "I know grandpa died,but when will he come home?" This is a way of testing reality and making surethe story of the death has not changed.

Several factors can affect how a child will cope with grief.

Although grief is different for each child, several factors can affect the grief process of a child:

• The child's age and stageof development.
• The child's personality.
• The child's previous experiences with death.
• The child's relationship with thedeceased.
• The child’s surroundings.
• The cause of death.
• The way the child acts andcommunicates within the family.
• How stable the family life is after the loss.
• Howthe child continues to be cared for.
• Whether the child is given the chance toshare and express feelings and memories.
• How the parents cope with stress.
• Whether the child has ongoing relationships with other adults.

A child’s understanding of death and the events near death depend on their age and developmental stage.

Infants

Infants do not recognize death, but feelings of loss and separation are part of their awareness of death. Children who have been separated from their mother may be sluggish and quiet, may not respond to a smile or a coo, may have physical symptoms (such as weight loss), and may sleep less.

Age 2-3 years

Children at this age often confuse death with sleep and may feel anxiety as early as age 3. They may stop talking and appear to feel overall distress.

Age 3-6 years

At this age children see death as a kind of sleep; the person is alive, but only in a limited way. The child cannot fully separate death from life. Children may think that the person is still living, even though he or she might have been buried. The child may ask questions about the deceased (for example, how does the deceased eat, go to the bathroom, breathe, or play?). Young children know that death is physical, but think it is not final.

A child may think death involves "magical thinking." For example, the child may think that his or her thoughts can cause another person to become sick or die.

Grieving children under 5 may have trouble eating, sleeping, and controlling their bladder and bowel.

Age 6-9 years

Children at this age are often very curious about death and may ask what happens to the body when it dies. Death is thought of as a person or spirit separate from the person who was alive, such as a skeleton, ghost, angel, or bogeyman. They may see death as final and scary but as something that happens mostly to old people (and not to themselves).

Grieving children can become afraid of school, have learning problems, show antisocial or aggressive behavior, or become overly worried about their own health and complain of imaginary symptoms. Children this age may either withdraw from others or become too attached and clingy.

Boys may become more aggressive and destructive (for example, acting out in school), instead of showing their sadness openly.

When one parent dies, children may feel abandoned by both the deceased parent and the living parent, whose grief may make him or her unable to emotionally support the child.

Age 9 and older

Children aged 9 and older know that death cannot be avoided and do not see it as a punishment. By the time a child is 12 years old, death is seen as final and something that happens to everyone.

There are three common worries children coping with a loss have about death.

Did I make the death happen?

Children often think that they have "magical powers." If a mother is irritated and says, "You’ll be the death of me" and later dies, her child may wonder if he or she caused the mother’s death. Also, when children argue, one may say (or think), "I wish you were dead." If that child dies, the surviving child may think that those thoughts caused the death.

Is it going to happen to me?

The death of another child may be very hard for a child. If the child thinks that the death may have been prevented (by either a parent or a doctor) the child may fear that he or she could also die.

Who is going to take care of me?

Since children depend on parents and other adults to take care of them, a grieving child may wonder who will care for him or her after the death of an important person.

Talking honestly about the death and including the child in rituals may help the child cope with the loss.

Explain the death and answer questions.

Talking about death helps children learn to cope with loss. When talking about death with children, describe it simply. Each child should be told the truth with as much detail as he or she is able to understand. Answer questions in a way the child can understand.

Children often worry that they will also die, or that their surviving parent will go away. They need to be told that they will be safe and taken care of.

Use the correct language.

When talking with the child about death, include the correct words, such as "cancer," "died," and "death." Other phrases such as, “he passed away,” “he is sleeping,” or “we lost him,” can confuse children.

Include the child in planning and attending memorial services.

When a death occurs, children may feel better if they are included in planning and attending memorial services. These events help children remember the loved one. Children should be encouraged to take part when they feel comfortable doing so and not be forced. Before a child attends a funeral, wake, or memorial service, give the child a full explanation of what to expect. A familiar adult or family member may help with this if the surviving parent's grief makes him or her unable to.

There are books and other resources with information on helping a grieving child.

The following books and videos may be helpful with grieving children:

1. Worden JW: Children and Grief: When a Parent Dies. New York, NY: The GuilfordPress, 1996.
2. Doka KJ, ed.: Children Mourning, Mourning Children. Washington, DC: HospiceFoundation of America, 1995.
3. Wass H, Corr CA: Childhood and Death. Washington, DC: Hemisphere PublishingCorporation, 1984.
4. Corr CA, McNeil JN: Adolescence and Death. New York, NY: Springer PublishingCompany, 1986.
5. Corr CA, Nabe CM, Corr DM: Death and Dying, Life and Living. 2nd ed.,Pacific Grove: Brooks/Cole Publishing Company, 1997.
6. Grollman EA: Talking About Death: A Dialogue Between Parent and Child. 3rded., Boston, MA: Beacon Press, 1990.
7. Schaefer D, Lyons C: How Do We Tell the Children? Helping ChildrenUnderstand and Cope When Someone Dies. New York, NY: Newmarket Press, 1988.
8. Wolfelt A: Helping Children Cope with Grief. Muncie: AcceleratedDevelopment, 1983.
9. Walker A: To Hell with Dying. San Diego, CA: Harcourt Brace Jovanovich, 1988.
10. Williams M: Velveteen Rabbit. Garden City: Doubleday, 1922.
11. Viorst J: The Tenth Good Thing About Barney. New York, NY: Atheneum, 1971.
12. Tiffault BW: A Quilt for Elizabeth. Omaha, NE: Centering Corporation, 1992.
13. Levine JR: Forever in My Heart: a Story to Help Children Participate inLife as a Parent Dies. Burnsville, NC: Mountain Rainbow Publications, 1992.
14. Knoderer K: Memory Book: a Special Way to Remember Someone You Love.Warminster, PA: Mar-Co Products, 1995.
15. de Paola T: Nana Upstairs and Nana Downstairs. New York, NY: GP Putnam’sSons, 1973.

Your Feelings

Denial

You may have trouble accepting that your friend or family member may not recover. You may think that if she keeps getting treatment, something may finally work, or that a new discovery will be made. There's nothing wrong with being hopeful.

Try to listen to your loved one and the doctor to really hear what they're saying. Denying the facts about the cancer may make the patient feel that you don't really understand what's happening. Again, it's okay to deal with things at your own pace. But be aware of the effect this may have on others.

Grief

Grief is the process of letting go and accepting and learning to live with loss. Part of the grieving process is feeling extreme sadness. You may feel sad about the losses you've experienced and the life you used to have.

You may begin to feel the loss of your loved one even before he or she dies. This is called anticipatory grief. It's normal to feel sad about the changes you are going through and the losses you are going to have. Common causes of grief include:

• You may have expected your life with your friend or family member to be different than what you’re faced with right now.
• You may be feeling sad over the unknowns in the future.
• You may be grieving the future loss of your loved one and all the changes involved.

Once your loved one dies, grief will become more intense. Everyone is different in how they grieve and in what they grieve for. Let yourself grieve in your own way and time. For example some people:

• Don't show as much emotion as others when they grieve. They may cry less than you would expect.
• Withdraw and keep to themselves. Even if they're in public, they may be less talkative than usual.
• Try to stay busy. They show their feelings by doing things, rather than talking about them.
• Show their anger more often. They may seem more short-tempered than you're used to them being.

Understand that these feelings of grief are normal. And grief can come up at times when you're not expecting it. Although it can come and go in intensity, grief can last for many months and will vary in intensity. If you feel the need, seek help from hospice staff, a mental health expert, or a support group as you go through the grieving process.

Ask for Help from Others

You may be faced with new challenges and concerns now that your loved one has advanced cancer. If the illness has been going on for a long time, these challenges may wear you down even more.

Many caregivers say that, looking back, they took on too much. They wish they had asked for help sooner in sharing tasks or seeking support. Many people probably want to help but don't know what you need or whether you want help. And as the cancer progresses, you may see changes in the support you get from others. For example:

• People who have helped before may not help now.
• Others who have helped before may want to help in new ways.
• People who haven't helped before may start helping.
• Agencies that couldn't help before may offer services now.

Accepting help from others isn't always easy. When tough things happen, some people think they can handle it on their own. But things can get harder as your loved one’s cancer progresses. As a result, many caregivers have said they feel stretched to the point that they can't do it anymore. As simple as it sounds, it's good to remind others that you still need help.

Remember that getting help for yourself can also help your loved one as well as other friends and family.

Keeping a Balance with Visitors

You may have many more people calling you or coming by to visit than ever before. Many caregivers say they feel very blessed when people show they care. But even though you might be very thankful for their love and support, there may be times when you need some space.

Some things you can do if you need time to yourself or just with your family are:

• Let your voicemail pick up the messages.
• Answer your phone in shifts. Let family members or friends be in charge of calls for a few hours.
• Put a sign on the door of your home or hospital room thanking people for coming by and letting them know your loved one is resting. Leave room for a note if they want to write one.
• Have a friend in your home handle visitors while you can be in another part of your home taking care of your own needs.
• Set up a website to keep people up to date and let them leave messages. Examples can be found at Caring Bridge or Lotsa Helping Hands.
• Go to a place where you can’t be reached for a while.