Months and Years after Death

It is extremely rare for mothers and fathers to experience grief the same way for many reasons.

If you work or have contacts outside the home, you may use others rather than your spouse as a sounding board for your grief. Sometimes this is out of concern about hurting your spouse by bringing up the subject of your deceased child. One parent may need to memorialize their child more than the other does, which can lead to conflict. Parents may also put undue reliance on the truism that after one year (going through all family holidays/events), things will be much better.

This may or may not be the case. While the second year may be better, the painful memories are not gone. A bitter surprise is those events that only happen every other year (alternating holiday visits to grandparents for example). Some families actually find the second year harder, perhaps because their child’s death now seems so final. For others, it may be because friends and family lessen their support if they don’t know how much the hurt continues or how best to help. After a few months, many parents feel that others don’t want to hear about their dead child anymore. Certainly, by the second year there is a sense that parents should be moving on - or if they truly are moving on, that the pace should be faster. By the second year, others want grieving parents to focus on their remaining children and the future.

However, one way that some parents have that found allows them to remember and talk about their dead child with not only the approval of their friends and family but, indeed, with their blessing, is an annual “event” in the child’s memory that benefits an organization or service that your family and the community value. Many parents find that talking about their child for the three months it takes to organize the walk/run/golf tournament and for the month afterward when people are still remembering the wonderful good the event will do for others is exactly what they need to keep their child’s memory alive in a constructive and acceptable way. Activities like this help to allay parents’ great fear: that their child will be forgotten.

Finding ways to work through your grief may require the help of a psychologist or other mental health professional, a clergy person, or a support group. Your own children’s cancer center, your local children’s hospital, or your hospice agency is likely to have support groups for parents. If they have not told you about this service, ask. As you talk with people or search online, you will find that there are bereavement groups that are specific for children’s cancer and others that are for parents of a child who has died at any age from any condition. When you consider joining a bereavement group, understand that the first group you attend may not be the “right” group or you may not be ready for a group. If your experience does not feel right, you may want to try another group or wait a few months to attend again.

You may find medication for anxiety or depression helpful but you should never feel that medicine is being forced on you, so you will “get over it” quickly. You may want to discuss your options with more than one professional. If you do decide to start medication, be sure that it is carefully and regularly monitored. Often, physicians will recommend that a psychiatrist monitor the medication because a psychiatrist is trained to prescribe the best drug at the best dosage for you, while minimizing side effects. A psychiatrist can also help you come off the medication safely when it is time to do so. Medication, alone, is rarely prescribed. Instead, it is used in conjunction with counseling to help you make the best use of the recommendations you and your counselor discuss.

The sadness that you are facing as parents is true for your surviving children as well. The memories linger for them, too, and they also see those memories reflected in your face, your actions, and your tears. They may need help from a professional. Or, they may need help from a support group of kids their own age who have shared their experience. They may need medication, although this is rare. Probably the most common help comes from friends, especially if the child is older. Offering a consultation with a professional grief counselor is likely to be met initially with disdain and the quip that they don’t need or want that kind of help---they're not crazy!. It may take many months, but older children or young adult siblings may eventually decide to see a counselor or join a group. In general, openness about the child who has died, pleasant remembrances through pictures of activities and trips, and frequent mentions of the child by name all serve to keep memories alive.

Idealization of the dead child (“If Mary were alive, she would always…” or “If Tommy were alive, he would never….”) are not only unfair but probably unrealistic as well: who knows what Mary or Tommy might have done. But your surviving child lives with these impossible comparisons with no way to prove that they are at least as good as your dead child unless you consistently remind yourself to cherish the unique and good qualities of each, individually. Your children’s pediatrician can be an independent judge of how your children are doing. Ask for his or her expert opinion and referral for you for parent counseling or for one or more of your children if there is concern about how he or she is coping.

Complicated Grief

Grief is an unavoidable and normal experience especially associated with the loss of a cherished person. Bereaved parents may feel deep sadness, anger, or guilt. They may ruminate about the events leading up to the death of their child and blame themselves or others for it. They may have symptoms typical of major depression in the first few months after their loss. They may also have hallucinatory experiences such as hearing their dead child’s voice or seeing his or her face in a crowd. Such experiences are thought to be the result of yearning or a persistent, often wistful or melancholy desire or an intense and overpowering longing for the return of their child.

These symptoms are usually normal responses to the loss. They call for comforting and sometimes explanation, but not treatment. But, if the symptoms persist and become increasingly debilitating, the condition turns into what is often referred to as unresolved, protracted, traumatic, or complicated grief. It has features of both depression and post-traumatic stress disorder (PTSD). The most characteristic symptoms are intrusive thoughts and images of the child, denial of the death, imagining that the dead person is alive, desperate loneliness and helplessness, bitterness, and wanting to die.

The risk of developing complicated grief depends on how traumatic the death is perceived to have been. For example, parents who are able to take their child home or who have made an unambiguous decision to provide comfort care only have been found in some studies to be less likely to develop complicated grief. Parents who have proceeded with aggressive treatment but who have also made the decision for DNR/DNI/AND in the terminal stages of the disease, are also less likely to develop complicated grief. In brief, the disorder is more likely to occur after a death that is traumatic - apparently sudden, violent, or unexpected.

Attending or not attending the funeral, talking or not talking about the dead child, joining a group or not joining a group, taking medication or not taking medication are all personal choices defined, in large part, by who each of us is and how we deal with adversity, disappointment, and sadness. Some people take a long time to return to their usual level of functioning after the death of their child, brother or sister, or grandchild. Experts used to talk about a year; now they know that two years might barely be enough. Some people take longer. However, as long as they are moving forward and looking toward each new day with the hope and expectation that it will be better than the day before, they are considered to be coping with their grief. When this forward movement stops, when life does not seem worth living, when the sadness continues to move deeper and deeper, a diagnosis of complicated grief is considered.

Treatment is usually a combination of antidepressant or anti-anxiety medications and psychotherapy directed at helping the parent relive the experience so that he or she can better understand why there is such an overpowering feeling of unresolved guilt or blame. The parent is also guided toward beginning to think about how to enjoy other activities, rather than dwell on the loss, without feeling as if he or she is being disloyal to the child who has died. The good news is that effective treatment is available and you, as a parent, are encouraged to examine how you and your spouse or partner, your surviving children, and others in your family are coping with the loss you have all sustained. Seek out help for yourself or anyone else whose sadness is profound and unremitting.