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SUPPORTING A GRIEVING PERSON WHO HAS A DEVELOPMENTAL DISABILITY Understand what grief is. The loss of a loved one or close friend is a very profound emotional experience. Even the loss of a neighbor, co-worker, or acquaintance can cause short-term emotional trauma and may have a longer lasting effect. Grief is the mental anguish that accompanies loss, and people with developmental disabilities (no matter how severe) do experience grief. Competent support of a grieving person is beneficial because:
Keep in mind the special needs of the grieving person. Consider these specific factors and the unique assets and needs of the grieving person:
Consideration of these factors will guide you in every step that follows. Be honest about the death. Do not deny, hide, or minimize what happened, or how it happened. Provide as much detail as the person can comprehend. It may be useful to take him to see the places and talk to the people where pivotal events occurred. Help him ask questions. You can figure out how much he already knows or understands by asking him to draw a picture or tell a story, or act out a story with puppets, about the death. Reviewing facts and details is an important step in accepting what happened. The person may want to tell the story over and over. Be clear about what’s going to happen next. What is the immediate effect of the loss on this person? Exactly what will happen to her daily routine-- where she lives, goes to school or work, her friends? Explain any changes (no matter how small) that will need to be made. Give her choices wherever possible. Reassure her that she will continue to be taken care of in the specific ways she is used to, but perhaps by a different person. Then prepare her for the funeral and mourning activities. Where will she need to go? Who will be coming from far away? What exactly will people be doing and saying? Include the person in mourning. Funerals and mourning rituals vary widely across cultures and religions. Provide opportunities for the person to meaningfully participate. There are dozens of ways she can contribute. For example, she can make a small board or poster of mementos of the deceased person, including photos and small items glued on, with written captions (dictated or actually written by the grieving individual). She could also select or make a small item to be buried with the lost individual. Telling a brief personal story at the memorial might be an option, or dictating it ahead of time to someone who will read it to the larger group. Offer the person a small possession of the deceased, a tangible and special reminder; ideally, the person should select the item as a keepsake. Help the person express feelings. Death elicits more than sadness. A person might also experience anger at the loss (or at doctors or others), envy of other people who don’t have the same loss, guilt at having contributed to the death in some way, regret at actions or words one said or failed to say, fear at what lies ahead for the deceased person or oneself, loneliness, and many other emotions. Sometimes a person feels the death is a punishment for something he did in the relationship. Counseling can aim toward absolving the person of unrealistic quilt, expressing and dissipating anger, and gradually resolving the other distressing feelings. Sometimes grief is experienced in physical ways, such as nausea, shortness of breath, heavy sighing or overall weakness. Disrupted sleep and eating patterns are common. Help the person understand that sadness is not only a feeling and a thought, but also a bodily reaction. Sadness and loss rarely go away, but with effective support, the person can experience moments of those feelings and still maintain their daily functioning and love of life. (See the module, Feelings.) Look for other sources of support. If the deceased person was a teacher, job coach, or counselor, help the grieving person locate and talk to some of the other people who experienced this loss. A group discussion or project (such as a letter to the family or poster collage) can decrease the feeling of isolation, or being alone with the loss.
Be alert for behavioral expressions of grief. The following behaviors may occur for the first time, or increase in frequency or severity:
Return to the normal routines. This does not mean that the person will feel normal or act normally. It means that life goes on, even when a person is very sad. Help the person to maintain continuity in relationships, routines, and familiar environment. Avoid additional changes in home, work, care providers, and leisure activities. The sadness and other feelings will continue to resurface for many months, both in direct comments and indirectly, such as in anger, withdrawal, distressing dreams, and possibly a reluctance or refusal to trust or get close to other people. Keep "processing" the feelings (acknowledge, express, let go, etc.). Commemorate the loss. Anniversaries are not just for birthdays and weddings. When the date of someone’s death rolls around again on the calendar, a person can re-experience the grief. Support providers should be alert to emotional and behavioral reactions around this date. Repeating or revisiting the above activities can help. Assist the person in creating a personal ceremony or recognition on the anniversary date. Visiting the grave is an obvious activity for reflection. But consider a life-affirming activity, such as helping the person volunteer time or donate a small amount of money to a cause that was close to the heart of the deceased person. Think about commemorating the person’s life by creating an anniversary ceremony for his birthday. Resources for more information:
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