Originally Published: 6/14/93
A hundred years ago, death and dying were events shared by the family of the deceased or terminally ill. If a person didn't die at home, he or she was likely indigent, mentally ill and confined to an asylum, or imprisoned. Today, the dying are likely to be sequestered from their family in intensive care units that only allow one adult to visit with the patient for a very short time - "being strong" and withholding a public display of emotion at funerals is encouraged, bottling up feelings that may burst forth on an anniversary or birthday years later.
As a result, dying is much more emotionally traumatic than it needs to be, for both the 
patient and his or her family. This is especially true for the parents and siblings of a child who is terminally ill or has recently passed. In the event of a terminal illness where a child is cared for in the home, a normal home life must be maintained, to the greatest extent possible, for the benefit of both the ill child and the family.
patient and his or her family. This is especially true for the parents and siblings of a child who is terminally ill or has recently passed. In the event of a terminal illness where a child is cared for in the home, a normal home life must be maintained, to the greatest extent possible, for the benefit of both the ill child and the family.
“The worst thing we can do to the terminally ill child and the rest of the family is to make a morgue out of the house while the child is still living. Where there is laughter and joy, shared love, and little pleasures, the day-to-day difficulties are much easier to bear.”
In her book "On Death and Dying," Elizabeth Kubler-Ross suggests making the child's siblings a part of the dying process to help them understand and accept the impending death of a brother or sister. "They may help to make yarn handicrafts...run a tape recorder with favorite music, or they can serve one meal a day as long as the little patient can still eat." Also, tip-toeing around the house, speaking in hushed tones, and avoiding the sick room can be detrimental to the well-being of the patient. [1]
Children who are not included in the last few weeks of a sibling's life will often begin to manifest abnormal behavior, especially if the parents try to ease their own conscience by lavishing the sick child with gifts or attention. Citing the case of "Billy", whose brother was dying of cancer, Kubler-Ross noted that the otherwise healthy boy intentionally injured himself, began to wet the bed, and misbehave in school in an attempt to gain attention. Billy was especially cruel to a handicapped fellow student.[2]
Abnormal behavior can also be seen in children who have lost a sibling suddenly and feel "forgotten" while their parents cope with the shock of such an event. It is not uncommon for child to have nightmares, become hyperactive or destructive, or do poorly in school. Having become temporarily anti-social, a child may lose friends, exacerbating his or her isolation at a time when they need someone to talk to the most. “The children need a friend, someone who will listen and talk to them 
at this time. They need extra patience, tutoring, and support rather than ridiculous expectations like the all-too-frequently-heard remark, “You should be over that by now.”” [3]
at this time. They need extra patience, tutoring, and support rather than ridiculous expectations like the all-too-frequently-heard remark, “You should be over that by now.”” [3]
Most experts agree that it is a mistake to exclude a child from the mourning process; even though the death of a sibling is a stunning event, it is a family affair that must be shared by all of its members. “A child wants to belong...it can be damaging to his emotional development to exclude him from the sorrows of life.” Families become closer and learn to grow from the “love and caring that surfaces during a crisis.”[4]
To ease the pain inherent in the death of a loved one, it helps to talk with the child about the meaning of death; explaining, according to the family's religious beliefs, what happens to the "person" after the body has ceased to function. Helpful activities could include “preparing a scrapbook that commemorates life with (the deceased); making sure the child has a picture...available; carrying out a project...related to one of the interests of the absent person.”[5]
Saying goodbye to a deceased child, even a stillborn infant, is a process that while it can be extremely emotional and difficult to endure, is a necessary first 
step in the healing process. Family members should be allowed to rock their stillborn baby; sing a favorite lullaby, bathe the dead body and comb his or her hair, dress the child, and drive the loved one to the mortuary.
step in the healing process. Family members should be allowed to rock their stillborn baby; sing a favorite lullaby, bathe the dead body and comb his or her hair, dress the child, and drive the loved one to the mortuary.
Siblings especially need time alone, preferably in the company of a parent, with their dead brother or sister to say their final farewell. This is the time for the parent to encourage and answer the many questions a child will inevitably have. Often, a child will sneak a favorite toy or other meaningful artifact into the coffin for the deceased to take with them on their journey.[6]
Some experts believe that the period of grief following the loss of a loved one can be separated into three distinct stages: shock, preoccupation with the deceased, and resolution.[7]
“Shock” can last anywhere from one day to two weeks and is described as a defense mechanism used by the mind to “protect the bereaved from experiencing the overwhelmingly painful reality of the loss too quickly or too intensely.” Family members feel frustrated, helpless, dazed, and confused while their mind adjusts to the loss.
“Preoccupation with the deceased” can last from three weeks to six months, and may 
return on special occasions such as birthdays or anniversaries. This phase can be characterized by “vivid” nightmares, crying spells, and auditory or visual hallucinations in which the bereaved believes that they hear or see the deceased.
return on special occasions such as birthdays or anniversaries. This phase can be characterized by “vivid” nightmares, crying spells, and auditory or visual hallucinations in which the bereaved believes that they hear or see the deceased.
“Resolution” occurs when those close to the deceased begin to accept the loss as a part of life. They can once again remember, without an excessive amount of discomfort, the good times shared with the departed. Family members begin to rebuild their lives and move on, resuming favorite activities or discovering new ones.
Others hold that the period of mourning is individualistic and can not be ascribed to a timetable. Some people may cope with the death of a loved one rather quickly, while others may experience profound depression, guilt, and anger for as long as three years. “There are a number of psychological, social, and biological processes that interact and make it difficult to define a normal reaction to bereavement.”[8]
Kubler-Ross breaks down grieving into a 5-step process with distinct, linear stages:
1. Denial and Isolation
2. Anger
3. Bargaining
4. Depression
5. Acceptance
Coping with death is not an easy process for anyone who loved the deceased, no matter how good the advice or how knowledgeable the expert. The passing of a loved one should be marked with rituals and memorials that comfort those who are left to remember the soul who has left this world for planes unknown.
We may scream and cry, beat our chests and rend our clothes, or we may pretend to ourselves and others that it really doesn't hurt that bad. And whether our grief endures or is mercifully brief, in the end, we are left to deal with death in our own way.
References