1. GRIEF AND LOSS A Healing Culture for All Staff

2. Raise awareness and understanding of loss and grief and the healing that can be achieved in a supportive environment. How can we support the healing process Goals

3. Background More individuals with I/DD are experiencing the deaths of parents, siblings and peers. Staff serving individuals with I/DD may have long term relationships with individuals who age and die.

4. Background Grieving not well recognized In the past often thought incapable of grieving Recent bereavement associated more psychiatric problems and problem behaviors * Grief of staff who lose clients is not well recognized or discussed *(Dowd, Dowling, & Hollins, 2005).

5. Contemporary View of Grief With the proper supports, individuals with disabilities can live fulfilling and relatively independent lives. They can handle painful experiences and master abstract concepts of death and loss. Experiencing and remembering are comforting and life-enhancing

6. Loss, Mourning, Grief Bereavement Loss is when you are deprived of someone or something of value Mourning is the outward, social expression of loss Grief is the emotional response to loss—or potential loss Bereavement includes grief and mourning Adapted ELNEC, 2005

7. Myths About Grief Myth 1: We only grieve deaths. Reality: We grieve all losses. Myth 2: Only family members grieve. Reality: All who are attached grieve. Myth 3: Grief is an emotional reaction. Reality: Grief is manifested in many ways. Myth 4: Individuals should leave grieving at home. Reality: We cannot control where we grieve. Myth 5: We slowly and predictably recover from grief. Reality: Grief is an uneven process, a roller coaster with no timeline. Myth 6: Grieving means letting go of the person who died. Reality: We never fully detach from those who have died. Myth 7: Grief finally ends. Reality: Over time most people learn to live with loss. Myth 8: Grievers are best left alone. Reality: Grievers need opportunities to share their memories and grief, and to receive support. Hospice Foundation of America

8. Reality of Grief Grief is a natural and normal response to a loss The loss may have already occurred or may be anticipated Responses are emotional, cognitive, physical, social and spiritual Intense feelings and emotions are normal

9. Grief reactions related to Chronologic age Developmental stage Cognitive level Socialization Culture Past experiences Relationships between individual, family members, caregivers, health professionals ELNEC, 2005

10. Coping with Grief Means Understanding and making sense of a loss Identifying & expressing feelings and emotions Remembering the person’s life Continuing on Adapted: Hill, M. Drawn together. www.DrawnTogether.comwww.DrawnTogether.com

11. Grief can be “Normal” Complicated Disenfranchised ELNEC, 2005

12. Normal grief What’s “normal” but Can include: disbelief anger guilt sadness preoccupation with the death Sleep loss or excessive sleep Weight loss or gain

13. Stages of Grief Notification and shock Experience the loss Reintegration Stages of adaptation (Harper) Intellectualization Emotional survival Depression Emotional arrival Deep compassion ELNEC, 2005

14. Emotional Cognitive Physical Social (Behavioral) Spiritual Grief Responses

15. Panic Anxiety Depression Frustration Anger Blaming of others Hopelessness Emotional Responses

16. Cognitive Responses Difficulty concentrating Forgetfulness Loss of skills Disorganization Memory Problems Focused on loss/feeling life is not real

17. Physical Reactions Appetite Changes (up or down) Changes in Sleep Patterns Illness/Pain symptoms upset stomach, headaches, aches, numbness Inactivity/Hyperactivity Repetitive Motions Frightening Dreams

18. Social Responses Separating from others Anxiety and fear – what is going to happen next Aggression Change in performance at work, school … Over protective

19. Spiritual Responses Questioning and challenging faith Feeling the presence of the deceased Visiting with the deceased Fragility of life is realized

20. Grief Experience loss at various times in their lives Separation from or death of a loved one Moving away from families – one home to another Separation from or death of a roommate or staff member Isolation from family, friends, community Limited independence – dependent on others Most experience multiple losses in their lives Many experience unresolved grief (multiple losses spanning years) Increased risk of long lasting or complicated grief

21. Grief is not socially recognized The loss is not recognized Griever not recognized as someone who can or should grieve Circumstances of the death may lead to stigma Sheltered from “upsetting events” No education on the life cycle Not informed or involved during illness, death, life changes Excluded from rituals Individuals with I/DD* and caregivers (health care, home aides, homemakers, etc.) recognized as experiencing disenfranchised grief *Harvey (2004) Disenfranchised Grief

22. Complicated grief Long period of time Significantly interferes with life activities Intense symptoms (ex: suicidal thoughts or acts). Factors include: Suddenness or circumstances of the death Gender of mourner Relationship to the deceased Previous psychiatric history or substance abuse* (http://www.cancer.gov/cancertopics/pdq/supportivecare/bereavement)

23. Grief and I/DD Complicated and disenfranchised grief may be present because: Grief not recognized Poor sense of time – loss experienced over and over Few relationships Ability to intellectualize the grief Ability to express emotions

24. Personal Exploration 1. Describe the very first loss you experienced. 2. Were you able to share your concerns about your loss? 3. What is your greatest fear concerning loss? 4. How do you respond to others who are experiencing loss? 5. What is a good helping relationship? 6. What is your greatest asset that you bring into a helping relationship? Husar Bereavement Care

25. Staff Roles NorthPointe has three levels of grief support 1. All Staff Completed Grief & Loss: A Healing Culture 2. Grief Support Facilitators Completed Grief & Loss: Moving through the Grieving Process Completed Enhancing Community Based Options for End of Life Care 3. Grief Therapist Licensed Psychologist, LCSW, LPHA

26. Offer support Listen Direct and honest Notice changes – verbal and non-verbal Know when to ask for help All Staff Role

27. Grief Support Facilitator Role Shares information regarding loss or death Assists in making arrangements Brings the team together Supports the grieving process Notices changes – verbal and non-verbal Engages community supports Knows when to ask for help

28. Grief Therapist Role Provide therapeutic counseling Stress reduction Coping Acceptance Revinvestment of energy Works with the team Provides suggestions for the team Supports caregivers

29. Supportive Actions Be honest, include, involve Listen, Be There Respect photos and other mementos Minimize change Avoid assessment Support the observance of anniversaries LISTEN, LISTEN, LISTEN OBSERVE, OBSERVE, OBSERVE Managing Grief Better: People with Intellectual Disabilities, Sheilla Hollins

30. Communication Be direct and honest Communicate in a private place Repeat the message Don’t be afraid to set limits on time and place Be supportive

31. What to Say died death passed on long sleep pushing up daisies kicked the bucket went to sleep and died went to the hospital and died AvoidWords to use

32. Listening Skills Listening to someone who is crying is difficult, but important Calm down someone who is hysterical Don’t change the subject or distract the griever Don’t give advice or quiz for details Husar Bereavement Care

33. Listen for content AND the feelings underneath the content Pay attention to non-verbal communication Relax, be yourself Tolerate silence Listening Skills Husar Bereavement Care

34. Nod, smile, intermittent eye contact Pause Casual Remark -“I see” “Uh huh” Echo- repeating back the last few words Listening Responses Husar Bereavement Care

35. Listening Responses Clarify- asking for more information Paraphrase- summarizing what you heard Interpret the speaker’s ideas within context Husar Bereavement Care

36. Support Structures Complex Needs/Limited Communication System Environment based strategies Security Stability Comfort Routine Continuity Relaxation Support Sensory Activities Coping with Grief and Loss, Scope 2007

37. Organizational Support DSP Training Grief and Loss – A Healing Culture Individuals We Support The Life Cycle Workshops Remembrance Workshops (for individuals and staff) Dr. Sue Radtke A Day of Remembrance for residents and staff – celebrating lives At Killian Center (following loss) At homes (following loss)

38. Supportive Actions Be honest, include, involve Listen, Be There Respect photos and other mementos Minimize change Avoid assessment Support the observance of anniversaries LISTEN, LISTEN, LISTEN OBSERVE, OBSERVE, OBSERVE Managing Grief Better: People with Intellectual Disabilities, Sheilla Hollins

39. Supportive Activities Memory Box Few items of deceased are kept Memory Book Photos, Pictures of favorite things Painting or collage Tape of favorite songs Poem or Song Helps remember the person, but also provides comfort Calendar Upcoming events they can look forward to Explore a new leisure activity

40. When to seek professional help Excessive periods of crying Frequent behavioral outbursts Extreme change in behavior Withdrawal or isolation for long periods Lack of interest in activities previously enjoyed Frequent nightmares/sleep disturbances Frequent headaches/physical complaints Fluctuation in weight Apathy, numbness and general lack of interest in life Negative thinking or lack of interest about the future

41. Grieving Process Resources Resource Room Library Lessons In Death and Dying Helping People with Developmental Disabilities Mourn Enhancing Community Based Options for End of Life Care

42. QUESTIONS & IDEAS