Valerie Gaus, Ph.D.; Daniel Steil, B.A.; Kimberly Carberry, C.S.W.
Adults with developmental disabilities may be particularly vulnerable to maladaptive grief reactions for several reasons. Many have long histories of living in institutions or residential schools which have exposed them to traumatic losses. Being placed outside their parents' homes has led them to feel the loss of a family unit, separation from early caretakers and the loss of some personal freedoms ((Dubovsky, 1994). Through their institutional placement years, they continued to suffer multiple losses as staff members frequently turned over. The deaths of family members may have been experienced as especially traumatic as well. For some the death of a parent may have been the actual precipitant of institutional placement, compounding the feeling of being abandoned. For others, a family member may have passed away during the institutional years, causing them to miss the chance to "say goodbye" or to be excluded from the grieving rituals carried out by the rest of the family (e.g., attending the funeral).
As suggested by numerous writers on grief (Kubler-Ross, 1975; Worden, 1982), every loss in a person's life can cause the pain and sadness of previous losses to resurface. These authors have also suggested that the unsuccessful resolution of past losses may interfere with a person's ability to move forward in forming new relationships. In her seminal book "On Death and Dying", Kubler-Ross (1969) described the stages of grieving that people go through following a loss: 1) Denial, 2) Anger, 3) Bargaining, 4) Depression, and 5) Acceptance. Rarely do people go through the stages in linear fashion. Rather, moving back and forth between stages is typical. Most contemporary authors and clinicians would agree that regardless of how a person mourns he or she must come to some acceptance of the loss before progressing to forming other beneficial relationships.
Individuals with mental retardation may need help and guidance through the grieving process when a loved one dies (Deutsch 1985; Hollins, 1990; Warren, Bradbury, & Bruno, 1991). Cognitive limitations may interfere with their ability to effectively express feelings or to grasp the abstract concepts related to death. Baseline levels of maladadaptive behavior may increase in frequency during these times. This paper will describe the treatment approaches used for two different developmentally disabled adults who were suffering from the effects of losing family members. Both individuals live in an ICF for dually diagnosed adults. Mary lost her mother 16 years ago, while John lost his mother six years ago.
CASE STUDY 1 - MARY
Mary is a 39 year-old woman who has lived at the YAI Levittown program for dually diagnosed adults since 1989. She exhibits some autistic features and functions in the mild range of mental retardation. She also meets the criteria for bipolar mood disorder. Mary and one older sister were raised by both parents. Her father passed away when she was 21 and her mother when she was 25. Her mother's death resulted in her placement in a developmental center where she displayed such severe aggression, she was transferred to the Regional Behavior Treatment Unit in Wassaic. Currently her only family contact is with her older sister, who has no developmental disability (e.g., earned a Master's Degree) but also suffers from bipolar mood disorder, resulting in several psychiatric hospitalizations each year.
Mary presents as very hyperactive, pacing incessantly. Her attention span is very short and she spends most of her free time perseverating loudly on a limited number of topics. As a form of self-stimulatory behavior, she repeats questions and answers on issues from her distant past. She frequently attempts to engage staff members in the question and answer ritual by asking them to repeat, verbatim, the answers to the questions. The content of the questions varies depending on her mood state. When she is in a positive mood, she focuses on her sister and may giggle when she hears the answers to her questions. When she begins to enter a depressive episode, the focus shifts to her dead parents. Her level of agitation increases during these periods as reflected by increased crying, louder voice volume while verbalizing and an increase in severe incidents of aggression and self-injurious behavior.
Mary's history at YAI has reflected deterioration in functioning during the summer months each year, a time when depressive episodes are more likely. Figure 1 shows that severe incidents peaked during July, August and September of 1992 and again in 1993. These incidents included physical aggression, self-injury and feces-smearing. One severe incident in June of 1993 was reported when Mary jumped out a second story window and broke her foot. A team meeting in the spring of 1994 focused on this pattern and her history was reviewed. Her father died in August of 1980 while her another died in September of 1983. She did not attend either funeral. The hypothesis that her deterioration was centering on the anniversaries of these deaths was explored. The team recommended a proactive approach for the upcoming summer which would provide Mary with grief counseling. It was decided that she would respond best to a concrete task around which counseling would be centered. Because she had not attended any funerals, a visit to the cemetery where both parents were buried was planned for June. Counseling began three days before the visit to allow enough time for her to consider it, but not enough for her to become overwhelmed by anxiety. She was asked if she wanted to go, why she wanted to go, and what she might like to bring. She was also reassured that she did not have to go and could change her mind any time. During the actual visit, she approached the gravestones calmly and read the names and dates out loud several times. She stayed about 5 minutes and asked to leave. During post-visit counseling, she expressed being pleased with the visit and asked to go again. A similar approach was used again in August, when Mary was able to visit the graves with her sister.
Figure 1 shows that in the high risk months July, August and September) of the following years (1994-1998), the frequency of severe incidents was relatively low compared to other past summers (see Figure 1). It is important to note that Mary's agitation and destructive behavior are part of a complex behavioral/psychiatric disorder, which results from multiple factors. It is therefore impossible to be certain that the grief counseling caused Mary to improve. It is possible, however, that the risk for a major depressive episode was reduced by the support of the team through the anniversary of the deaths of her parents.
CASE: STUDY 2 - JOHN
John is a 44-year-old male who functions in the mild range of mental retardation and also meets the criteria for generalized anxiety disorder. He has lived at the YAI Levittown program for dually diagnosed adults since 1989. John has many adaptive living skills, but his history of temper tantrums and self-injurious behavior has led him to live in more restrictive environments.
John was raised at home by both parents. In 1970, at age 16, he was placed at a developmental center because his severe temper tantrums were difficult to manage by his parents. He continued to have frequent contact with his family, however, making many weekend visits to the home of his parents or sister. He has had several unsuccessful placements in group homes before coming to YAI. At the end of John's third year at YAI, his mother was diagnosed with cancer and died within a few months. His family kept him involved as she worsened, explaining to him what was happening and arranging several visits. The last six weeks of her life coincided with the holiday season, as she died in late January of 1993. He attended the funeral with his family and several peers.
After the funeral, he stopped talking about his mother and seemed to return quickly to his routine. Figure 2 shows the frequency of severe incidents of agitation and self-injury, which rapidly declined in the months after the loss. Episodes increased through the following holiday season, however, and peaked after his female counselor of five years left his day treatment center in March. John, who is very verbal and usually able to express negative emotions, often changed the subject if counselors suggested he was having difficulty because of his mother. Finally, during the holiday season in late 1994, he expressed a desire to visit his mother's gravesite.
Arrangements were made for John to visit the grave with his father near the second anniversary of her death. Neither man had visited the site previously. Figure 2 shows that anxiety peaked for John during the weeks leading up to the visit in early February but declined afterwards. Visits have been arranged quarterly in the years that have followed. John has had several more peak periods of anxiety, but none have been as severe or prolonged as the time around the first anniversary of his mother's death.
Both case studies are about individuals with complex developmental and emotional disabilities. Each has a history of severe maladaptive behavior, which is likely to be caused by many factors. The bereavement process may exacerbate behavioral symptoms as suggested by these case histories. Clinicians should always consider and explore loss and grief histories when assessing behavior problems. Guidance through the bereavement process may have beneficial effects in reducing the risk of major depression or decreasing anxiety symptoms
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Dubovsky, D. (1994). Loss and grieving: A lifelong process for consumers and families. Paper presented at the annual meeting of the National Association for the Dually Diagnosed, Salt Lake City, UT.
Hollins, S.C. (1990). Grief therapy for people with mental handicap. In A. Dosen, A. van Gennep, G. Zwanikken (Eds.) Treatment of Mental Illness and Behavioral Disorders in the Mentally Retarded. Leiden: Logon.
Kubler-Ross, E. (1969), On Death and Dying, New York: Macmillan.
Kubler-Ross, E. (1975), Death: The Final Stage of Growth, Englewood Cliff, NJ: Prentice Hall.
Warren, B., Bradbury, S., & Bruno, P. (1991). On death and dying: The grieving process. Info Fact OMRDD. Series 91-1.
Worden,J. (1982). Grief Counseling and Grief Therapy. New York: Springer.
For further information contact:
Valerie Gaus, Ph.D.
Young Adult Institute
2 Meridian Road
Levittown, NY 11756