Grief and Loss in Individuals with Dual Diagnosis: A Guide for MH and DD Professionals

1. Grief and Loss in Individuals with Dual Diagnosis:A Guide for MH and DD Professionals Lara Palay, MSW, LISW-S

2. Special thanks to Dr. Julie Gentile, MD; Carroll Jackson, LISW-S; and the staff of Hospice of the Western Reserve for their contributions, comments and expertise in the preparation of this material. Acknowledgments Mental Illness/Developmental Disabilities Coordinating Center of Excellence

3. “As any poet or psychologist will tell you, memory is both the curse of grief and the eventual talisman against it; what at first seems unbearable becomes the succor that that can outlast pain.” -Gail Caldwell, New York Times, 2011 Mental Illness/Developmental Disabilities Coordinating Center of Excellence

4. DSM IV-R criteria (“mental retardation” no longer current language) Mild 50/55 – 70 points 85% of individuals with MR are in the Mild range Moderate 35/40 – 50/55 points 10% of individuals with MR are in the Moderate range Severe 20/25 – 35/40 points 3-4% of individuals with MR are in the Severe range Profound <20/25 points 1-2% of individuals with MR are in the Profound range Mental Illness/Developmental Disabilities Coordinating Center of Excellence

5. Co-occurrence of mental illness and developmental disability (DD) is not only possible but common. Research indicates that the prevalence of mental illness in this population is higher than that found in the general population. Estimates vary, but incidence is somewhere between 40- 70% (in the general population rate is approximately 19%). Mental Illness/Developmental Disabilities Coordinating Center of Excellence

6. How do individuals with dual diagnoses grieve losses? In much the same way all people grieve. “The response of people with learning disabilities to bereavement is essentially the same as in non-disabled people”. Oswin,1991 Mental Illness/Developmental Disabilities Coordinating Center of Excellence

7. Why is it important to focus on grief and loss in individuals with dual diagnoses? Because it affects their functioning. “There is higher incidence of psychiatric illness following bereavement because of impaired adaptive functioning”. McLoughlin, 1986 Mental Illness/Developmental Disabilities Coordinating Center of Excellence

8. Approximately 50% admissions to hospitals were related to grief or loss issue Ambivalent relationships may be related to more complicated grief processes Marked behavior and mood changes following death; 50% of pts with severe behavior problems had loss of a close contact prior to onset; most caregivers minimized or misunderstood reaction Dodd et al, 2005 Mental Illness/Developmental Disabilities Coordinating Center of Excellence

9. Do individuals with dual diagnoses get to participate in healing rituals to deal with grief? Not often. Only 16% of bereaved clients had opportunity to visit grave or place were ashes were scattered Only 16% of clients received formal session(s) of bereavement counseling Hollins et al, 1996 Mental Illness/Developmental Disabilities Coordinating Center of Excellence

10. What does this mean? Non-involvement [of people with I/DD] in rituals is striking Increased scores of aberrant behavior in bereaved group clearly indicate significant/disturbing impact of loss of an important attachment figure “In summary, [there were] significantly more cases of psychopathological morbidity in the bereaved group” Hollins et al, 1996 Mental Illness/Developmental Disabilities Coordinating Center of Excellence

11. And finally… 72% of institutional staffers felt clients had not been affected in any way by bereavement Hollins et al, 1996 We treat grieving individuals with dual diagnoses differently, and that’s a problem. But often we don’t even see the problem. Mental Illness/Developmental Disabilities Coordinating Center of Excellence

12. Rando’s Six Tasks of Grieving Mental Illness/Developmental Disabilities Coordinating Center of Excellence

13. Recognize(avoidance phase) Recognize the loss acknowledge the loss understand that it has happened Mental Illness/Developmental Disabilities Coordinating Center of Excellence

14. React, Recollect and Relinquish (confrontation phase) React to the separation Experience pain Feel, identify, accept and give some form of expression to all the psychological reactions to the loss Identify and mourn secondary losses Mental Illness/Developmental Disabilities Coordinating Center of Excellence

15. React, Recollect and Relinquish (confrontation phase) con’t. Recollect and re-experience the deceased and the relationship Review and remember realistically Revive and re-experience the feelings Relinquish the old attachments to the deceased and the old assumptive world

16. Readjust and Reinvest (accommodation phase) Readjust to move adaptively into the new world without forgetting the old Revise the assumptive world Develop a new relationship with the deceased Adopt new ways of being in the world Form a new identity Reinvest in life Mental Illness/Developmental Disabilities Coordinating Center of Excellence

17. How might these tasks present challenge for individuals with dual diagnoses? Mental Illness/Developmental Disabilities Coordinating Center of Excellence

18. Recognition These individuals may lack opportunities to participate in rituals that facilitate recognition (funerals, viewings, sitting Shiva, mourning clothes, covered mirrors, other outward reminders, etc.) This may be made worse if others fail to recognize the individuals’ loss (special status of griever, cards/notes) Mental Illness/Developmental Disabilities Coordinating Center of Excellence

19. Reaction The individual may lack language for feelings, or may have been discouraged from expressing feelings. Family and caregivers may misunderstand that having dual diagnoses does not prevent understanding a loss. Mental Illness/Developmental Disabilities Coordinating Center of Excellence

20. Relinquishing This may be difficult depending on the individual’s developmental stage or understanding of object permanence. Mental Illness/Developmental Disabilities Coordinating Center of Excellence

21. Readjustment The individual may lack support, help with building new skills and understanding new assumptions about the world. He or she may struggle to adapt to real secondary losses related to the role the person played in life, or struggle to adjust to a new environment. Mental Illness/Developmental Disabilities Coordinating Center of Excellence

22. Reinvestment The individual may be less likely to form significant attachments to others, especially with staff turnover, lack of social connection, and other isolating factors. This is also challenging if the individual lacks training and the chance to practice relationship skills. Finally, lack of support in finding meaning (attending church, participating in charity work, pursuing goals) can make this task hard to complete. Mental Illness/Developmental Disabilities Coordinating Center of Excellence

23. How can mental health and DD professionals support grieving individuals with dual diagnoses? Suggestions for each task of grieving Mental Illness/Developmental Disabilities Coordinating Center of Excellence

24. What needs to be in place? Mechanisms and rituals for grief (as for everyone else) Supportive people recognizing and understanding grief (including examining one’s own grief issues!) Help with building language, especially for feelings Help with skills and opportunities for later tasks Intervention as needed for complicated bereavement Mental Illness/Developmental Disabilities Coordinating Center of Excellence

25. Recognition Participation in family and social events and rituals. Encourage flexibility with staffing to allow for individual to decide when he or she needs a break, or wants to leave early, etc. Prepare the individual thoroughly with social stories, role-playing, etc. Encourage recognition from others (cards, flowers). Assist in understanding of length of each task/phase of grief. Explore using visible signs of grieving (picture of loved one on door, e.g.) Mental Illness/Developmental Disabilities Coordinating Center of Excellence

26. Reacting Feelings, feelings, feelings! Identify words and signals for emotions, and encourage the individual and his or her supporters to practice using them. Point out when feelings rise and fall. Remind the individual that these feelings, though painful, do not last forever or destroy the individual. Help the individual breathe and watch the feeling come and go. For coping with anger, consider the following model: I’m angry… I miss (feel sad about)… I wish… Instead of having what I wish for, I can…

27. Recollecting and Re-Experiencing Encourage stories, remembrances (do not push) Encourage creation of mementos if these have been lost (scrapbooks, memory boxes, draw pictures, write stories) Make visits available to meaningful places Work on anniversary and other rituals to mark place of loved one (mom’s picture at birthday table, special candle, etc.) Mental Illness/Developmental Disabilities Coordinating Center of Excellence

28. Relinquishing Explore concepts of death as the individual understands it. Repeat ideas such as loved ones are gone but still in one’s heart, etc. Think about questions of self and role: Am I still the (son, daughter, sibling, friend)? Who will love/take care of me? Help the individual to build the skills needed in new environments or with a new conception of self Explore and help the individual to understand the new assumptive world (for example, “Things will not always stay the same, but I can cope with change”.) Mental Illness/Developmental Disabilities Coordinating Center of Excellence

29. Reinvestment Encourage efforts to build emotional connections with others Help to find meaningful activities or involvement (volunteering at charity, involvement in spiritual community) Continue to explore ideas of identity, spirituality and purpose Mental Illness/Developmental Disabilities Coordinating Center of Excellence

30. Remember that losses can come in many forms, especially for individuals with dual diagnoses, including Separation from family/family home Medically ill parents/caretakers Separation from neighbors and friends Divorce/relationship instability Abandonment by family Isolation because of sexual identity Language barriers Mental Illness/Developmental Disabilities Coordinating Center of Excellence

31. To be in control To have a sense of purpose To reminisce To know the truth To be in denial To be comfortable To touch and be touched To laughter To cry and express anger To explore the spiritual To have a sense of family What are the rights of the people you work with?(Smith, 1997) Mental Illness/Developmental Disabilities Coordinating Center of Excellence

32. To be in control Control is often a central issue for people with dual diagnoses. These individuals often do not feel they have control of “normal” aspects of daily life: Where to live, with whom to associate, what work to do. People with dual diagnoses often feel control is outside them and may need to be encouraged to assert their own wishes and goals. Mental Illness/Developmental Disabilities Coordinating Center of Excellence

33. To have a sense of purpose For some individuals, this a regular part of life that can be enhanced or re-connected with, just as other people do. For others, life may lack purpose. Lack of access to meaningful work, lack of social/romantic/sexual outlets, lack of full participation in society can be longstanding contributors to this feeling. Caregivers need to be alert to opportunities to find purpose. Mental Illness/Developmental Disabilities Coordinating Center of Excellence

34. To reminisce Sometimes, people surrounding an individual with dual diagnoses seem to think that the individual doesn’t remember loved ones as typically-developing people do. These individuals are sometimes told “not to dwell” on losses or grief, or in fact on any negatively-perceived emotion. Reminiscing may be made harder if few possessions, keepsakes or mementos remain, as these individuals sometimes have to move frequently and live with little space for personal belongings. Mental Illness/Developmental Disabilities Coordinating Center of Excellence

35. To be in denial Family and caregivers may find it difficult to let the individual be in denial. They may be inclined to “make them face reality”. Supporters will need patience and sensitivity to discern if the individual truly does not comprehend and needs to be told in simpler or more concrete terms, or is choosing to deal with the truth gradually in his/her own way. Mental Illness/Developmental Disabilities Coordinating Center of Excellence

36. To know the truth On the opposite end of the spectrum, some family members or caregivers may wish to “protect” an individual with dual diagnoses. As noted above, lack of acknowledgement of grief, and possibly lack of preparation, can significantly contribute to emotional or psychiatric disturbance. People with dual diagnoses will generally understand death at a level comparable to his or her developmental age. (con’t.) Mental Illness/Developmental Disabilities Coordinating Center of Excellence

37. (con’t.). He or she may have been discouraged from talking about death, or have had questions brushed aside. Supporters will need to explore the individual’s basic understanding and beliefs, and consider doing some preparation or education, using role plays, social stories, story cards, etc. Mental Illness/Developmental Disabilities Coordinating Center of Excellence

38. To be comfortable Roommates, favorite staff, personal items and objects may help the individual to be comfortable. In palliative care for individuals approaching the end of life, a prescriber may encounter multiple psycho-tropics. Individuals with dual diagnoses are at greater risk for poly-pharmacy. Consultation with a dual diagnosis-trained psychiatrist may help. In prescribing for pain management, watch for over- or under-medication, which is common with this population. Mental Illness/Developmental Disabilities Coordinating Center of Excellence

39. To touch and be touched Human touch is as important for these as for any individual. Touching and hugging may be very familiar or unfamiliar, depending on the setting in which the individual lives (family home, group home, developmental center, etc.). However, be cautious of known traumatic stress that may make touch scary or triggering for an individual. Mental Illness/Developmental Disabilities Coordinating Center of Excellence

40. To laughter Yes! Mental Illness/Developmental Disabilities Coordinating Center of Excellence

41. To cry and to express anger “Negative” emotions such as sadness and especially anger may be uncomfortable for caregivers and family members. Individuals with dual diagnoses are often discouraged from expressing these emotions and may have been distracted, invalidated, minimized or shamed. These individuals may also have issues communicating feelings due to lack of an emotional vocabulary, or general problems with verbal expression. Mental Illness/Developmental Disabilities Coordinating Center of Excellence

42. (con’t.). Supporters may need to give explicit permission and encouragement to notice, name, explore and express feelings. Teaching names and gradations for feelings will be helpful. For individuals with expressive language or speech issues, consider drawing, sculpting, collages, play therapy techniques or music as means of expression. Mental Illness/Developmental Disabilities Coordinating Center of Excellence

43. To explore the spiritual Individuals with I/DD may or may not have access to his or her preferred form of worship. Explore his or her beliefs and encourage or facilitate expression and connection whenever possible. Mental Illness/Developmental Disabilities Coordinating Center of Excellence

44. **For spiritual work** Consider exploring issues of spiritual pain that others may ignore (Groves and Klauser, 2005): Relatedness pain Forgiveness pain Meaning pain Hopelessness pain Mental Illness/Developmental Disabilities Coordinating Center of Excellence

45. To have a sense of family If the individual is losing a parent or other caregiver, he or she may be understandably nervous about the impact on her or her living situation. In some instances, the family may try to shield the individual from gatherings or rituals that they deem “too upsetting”. Consider gently encouraging the family to explore ways to include the individual, perhaps with flexible participation, modified settings and/or lots of rehearsal and preparation (see below). Mental Illness/Developmental Disabilities Coordinating Center of Excellence

46. Additional Issues Mental Illness/Developmental Disabilities Coordinating Center of Excellence

47. Be careful with language and euphemism about dying, and encourage family and caregivers to do the same. Expressions like someone “got sick” or “went to sleep” can be taken literally, causing anxiety and distress (“If I go to sleep, I will die”). When dealing with feelings associated with grief, the individual may tolerate small doses of feelings and not stay deep for very long. Do not underestimate this as not needing to work through emotions. Small steps may be needed. Mental Illness/Developmental Disabilities Coordinating Center of Excellence

48. Who am I without…(my loved one)? Who am I not? What can I do (without my loved one)? What can I not do (without my loved one)? What do I feel? (also: How can I feel safe? How can I have my anger?) How can I make myself feel better? How do I feel better without my loved one? Four Basic Issues in Trauma and Grief(adapted from Duane Bowers, LPC; 2010) Mental Illness/Developmental Disabilities Coordinating Center of Excellence

49. Do not ignore elements of trauma! What were circumstances of the loss and the aftermath of the loss? Did the individual experience intense fear or a threat to his or her well-being? If so, there may be traumatic stress related to the loss, and this may need to be treated first to allow grieving to occur. Mental Illness/Developmental Disabilities Coordinating Center of Excellence

50. Research suggests that individuals with dual diagnoses are at very high risk for traumatic stress. Some researchers estimate that more than 90% of individuals experience some level of trauma in their lives (Sobsey, 1994). Trauma-informed care, particularly helping individuals to feel safe and in control, is a universal precaution for this population. Making sure someone feels safe and in control of his or her own life will not hurt anyone who does NOT have a trauma history. Trauma-Informed Care: A Universal Precaution Mental Illness/Developmental Disabilities Coordinating Center of Excellence