1. GRIEF AND LOSS Moving Through The Grieving Process for Grief Facilitators

2. Raise awareness and understanding of loss and grief and the healing that can be achieved in a supportive environment. What is the process of grieving, supports that can support healing, and your role 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. There are things that we don’t want to happen, but have to accept… Things we don’t want to know, but have to learn… And people we can’t live without, but have to let go ~ unknown author ~ Life and Loss

6. Personal Exploration 1. Describe the most painful 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? Adapted Husar Bereavement Care

7. 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

8. 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

9. Loss “Loss is a far more encompassing theme in our life. For we lose not only through death, but also by leaving and by being left, by changing and letting go and moving on.” ~ Viorst, J. (1990)

10. Different Kinds of Losses Loss of Relationship- death, divorce, pet breakup, illness, adoption, miscarriage Loss of Significant Person- death, divorce, illness, relocation, military duty, missing person Loss of Safety- vulnerable feelings after rape, robbery, betrayal, unanticipated events, crises, traumatic events or disasters Loss of Role- occupation, job, relationship e.g. parent, child, friend Loss of Trust- loss of trust in a parent, a loss of trust in God, loss of trust in a relationship Loss of Plans, hopes and Dreams for the Future- adoption, miscarriage, abortion, stillbirth, infertility, relationship, job career Loss of Innocence- early sexual experiences, advertising and media influences children to grow up too soon

11. How do we Approach Loss and Grief? It is important to approach loss and grief not from an intellectual but from an emotional perspective Cannot resonate with broken hearts and broken dreams from an intellectual perspective “If you approach grief from a conceptual, intellectual perspective, you leave the griever with much understanding - but very little recovery.” ~James, J, & Friedman, R, 2009 “Grief is about a broken heart not a broken brain.” ~ James, J, & Friedman, R, 2009

12. We Must Hurt to Heal When we run away, our grief remains unhealed Time will never heal grief What we do with time will lead to healing We need to work it through We can’t get over it, but we must go through it

13. 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

14. 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

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

16. Five Stages of Grief Denial: “This can’t be happening to me.” Anger: “Why is this happening? Who is to blame?” Bargaining: “Make this not happen, and in return I will ____.” Depression: “I’m too sad to do anything.” Acceptance: “I’m at peace with what happened.”

17. The 4 D’s in Dealing with Grief Denial Drugs Diversions Distractions These keep people from going to the scary places of grief

18. At the loss of a Loved One What People Need 1.Permission to grieve 2.Hope 3.Comfort/support 4.Understanding grief cycle What They Don’t 1.Sermonizing 2.Bible quoted to them 3.Told what to feel 4.Indifference

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

20. Staff Grief and Loss A series of losses may occur; there may not be time to recover from one loss before another occurs Staff need support Staff need to understand and work through their own grief Support among caregiving team members is important ELNEC, 2005

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

22. 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

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

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

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

26. 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

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

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

29. 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

30. 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)

31. Unresolved Grief What can it do? Repressed, unrecognized or unresolved grief can cause personal anguish increased anxiety multiple physical complaint functional impairment strained relationship marital discord disrupted sleep impaired childhood increased substance abuse– tobacco, alcohol, drugs, tranquilizers clinical depression increased mortality from heart disease and suicide

32. Tasks of Mourning Task I: To accept the reality of the loss Death is final Reunion is impossible, at least in this life Distortions in the form of denial or minimizing the impact of the loss Task II: To experience the pain of grief Important to feel physical, emotional and behavioral pain associated with loss Avoidance of feelings prolongs grief Worden, J.W. (1982)

33. Tasks of Mourning Task III: To adjust to an environment in which the deceased is missing or to adjust to an environment after loss Child may need to learn to turn to others beside a parent for help Task IV: To withdraw emotional energy and reinvest it in another relationship note written by a teenager to her mother after the death of her dad “there are many other people to be loved, and it does not mean that I love Dad any less” Not feeling like they are dishonoring, abandoning, forgetting the deceased Worden, J.W. (1982)

34. Tasks of Mourning Exercise What would interrupt/interfere To accept the reality of the loss To experience the pain of grief To adjust to an environment in which the deceased is missing or to adjust to an environment after loss To withdraw emotional energy and reinvest it in another relationship

35. Tasks of Mourning Exercise How can we work through barriers to healing To accept the reality of the loss To experience the pain of grief To adjust to an environment in which the deceased is missing or to adjust to an environment after loss To withdraw emotional energy and reinvest it in another relationship

36. NorthPointe Protocols Policy - Procedure Staff Training (handout) Grief and Loss – A Healing Culture Grief and Loss – Moving Through The Grieving Process Enhancing Community Based Options for End of Life Care Individuals We Support The Life Cycle Workshops (SCOPE) http://www.scopevic.org.au/index.p hp/cms/frontend/resource/id/130

37. NorthPointe Policy Review Policy - Procedure

38. Training/Workshops Review The Life Cycle Workshops (SCOPE) http://www.scopevic.org. au/index.php/cms/fronten d/resource/id/130http://www.scopevic.org. au/index.php/cms/fronten d/resource/id/130 Inservice Hospice Grief and Loss

39. 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

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

41. Co-facilitates the team meeting Supports individual to identify loss, grief, death and dying support needs Supports individual and team to identify ways to support the individual Documents team decisions and is responsible for implementation Grief Support Facilitator Brings the Team Together

42. 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 Grief Support Facilitator Shares Information Regarding Loss

43. 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 Shares Information Regarding Loss What to Say

44. Grief Support Facilitator Assists in Making Arrangements Helps to prepare end of life plan Coordinates with Hospice Contacts memorial site for service, viewing, burial Helps to organize memory album, pictures for service Prepares announcement Organizes memorial activities, i.e, life celebration

45. Listen Be honest, include, involve Respect photos and other mementos Minimize change Avoid assessment Support the observance of anniversaries Provide structure as needed Listen Adapted Managing Grief Better: People with Intellectual Disabilities, Sheilla Hollins Grief Support Facilitator Supports the Grieving Process

46. DO’S Listen – seek a private place Mention the person by name – it personalizes the loss Be genuine with expression of your feelings Encourage them to resume their normal activities, especially for adolescents peer group very important Be prepared to attend to individual’s spontaneous expressions of feelings Set limits, as needed Grief Support Facilitator Supports the Grieving Process DONT’S Be judgmental, criticize or blame Tell them how they should feel Lie or tell half truths Use euphemisms like “gone away”, “resting”,“sleep”, etc… Be afraid to tell the individual that you don’t know all the answers Avoid the individual – change subject Minimize the loss Attempt to become a substitute for deceased Pressure the individual to talk

47. 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 Listen for content & the feelings underneath the content Pay attention to non-verbal communication Relax, be yourself Tolerate silence Husar Bereavement Care Supportive Actions Listening Actions

48. Nod, smile, intermittent eye contact Pause Casual Remark -“I see” “Uh huh” Echo- repeating back the last few words Clarify- asking for more information Paraphrase- summarizing what you heard Interpret the speaker’s ideas within context Supportive Actions Listening Responses Husar Bereavement Care

49. Supportive Actions Structures for Complex Needs/Limited Communication System Environment based strategies (build into plan) Security Stability Comfort Routine Continuity Relaxation Support Sensory Activities Coping with Grief and Loss, Scope 2007

50. Supportive Activities Express feelings through drawing, coloring, journaling Go through picture albums, have individuals talk about their memories, Make collages, write poems Create a memory box Create a scrap book Tape of favorite songs Writing letters to the deceased loved one Create a calendar of upcoming events that they can look forward to Explore a new leisure/fun activity Have a life celebration

51. Grieving Process Activity Activity 1: Masking Tape Art with Frame Place pieces of masking tape on paper Each piece represents a memory Color over the top of paper/tape however they want Remove tape Explain how you have something new yet still have your memories Activity 2: Molding Clay Activity Have individuals chose 2 different colors of molding clay Have individuals use/shape 1 color to represent them and 1 to represent the person they lost – they can shape however they chose Ask individuals to share their story Have individuals blend the two shapes together in any way they wish Share how they have created something new, yet the person is still with them (blended colors and shape)

52. 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

53. Grief Support Facilitator Engages community supports Identified additional resources needed Hospice Bereavement Groups Ministry/Spiritual Counseling Family Assistance

54. Community Resources Lake County Hospice Inservice Care Bereavement Counseling Free for 1 year post loss Expressive Art Bereavement Counseling Program Deacon Bob (non denominational services/supports) Support Groups – Compassionate Friends, Willow House, Hospice Dr. Radtke Inservice, Consultation, Counseling

55. Touches base with individual(s) regularly Monitors for changes in grief reactions Monitors for signs of complicated grief Talks to other support staff for observations Grief Support Facilitator Notices Changes – verbal and non-verbal

56. Excessive periods of crying Frequent social (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 Grief Support Facilitator Know When To Call the Grief Therapist

57. Additional Program Examples “Drawn Together”: art therapy workshop program for families to honor loved ones and share memories www.DrawnTogether.com Picturing Death: reflection and exploration, through pictures and writing, of personal meaning about loss, grief, and end of life http://www.deborahboardman.com/tpdp/ MAP Foundation: from Great Britain; looks at art and journaling http://www.mapfoundation.org/about.us.html http://www.mapfoundation.org/about.us.html Easter Seals: Enhancing Community Based Options for End of Life Care http://www.nxtbook.com/nxtbooks/nhpco/productcatalog2010/#/66 Supporting People with Disabilities Coping with Grief and Loss http://www.qppd.org/downloads/DealingWithGrief.pdf

58. Additional Resources Local and State Organizations Chicago End of Life Care Coalition http://www.cecc.info/aboutus.php Illinois Hospice and Palliative Care Organization http://www.il-hpco.org National Organizations & Resources Aging With Dignity http://www.agingwithdignity.org/ National Hospice and Palliative Care Organization http://www.nhpco.org National Pain Foundation http://www.painconnection.org National Consensus Project http://www.nationalconsensusproject.org/ Resources for Health Professionals Including Nurses, Physicians End of Life Nursing Education Consortium (ELNEC) http://www.aacn.nche.edu/elnec/ End of Life/Palliative Education Resource Center http://www.eperc.mcw.edu/ Hospice and Palliative Nurses Association http://www.hpna.org/ Stein, G. L. & Esralew, L. (2004). Palliative care for people with disabilities. In J. Berzoff & P.R. Silverman (Eds.), Living with dying: A handbook for end-of-life healthcare practitioners. Columbia University Press

59. References Dodd, Dowling, & Hollins (2005). A review of the emotional, psychiatric and behavioural responses to bereavement in people with intellectual disabilities. Journal of Intellectual Disability Research. Vol 49(7) 537-543. End of Life Nursing Education Consortium (2005). Promoting palliative care in advanced practice nursing: Graduate education training program. Harvey, John H. (2004) Disenfranchised Grief: New Directions, Challenges, and Strategies for Practice Omega: Journal of Death and Dying. Vol 49(2) 2004, 185-187 Hill, M. A. Drawn together: A group art therapy workshop program for grieving families. www.DrawnTogether.comwww.DrawnTogether.com National Cancer Institute (2005). (http://www.cancer.gov/cancertopics/pdq/supportivecare/bereaveme nt)

60. QUESTIONS & IDEAS