GRIEF AND LOSS

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

2. Goals • 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

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. Life and Loss 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 ~

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. 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 Different Kinds of Losses

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. 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 We Must Hurt to Heal

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

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

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. Disenfranchised Grief • 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)

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 GriefWhat 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 ExerciseHow 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.php/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/frontend/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. Grief Support Facilitator Brings the Team Together • 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

42. Grief Support Facilitator Shares Information Regarding Loss • 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

43. Shares Information Regarding LossWhat to Say Words to use Avoid • died • death • passed on • long sleep • pushing up daisies • kicked the bucket • went to sleep and died • went to the hospital and died

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. Grief Support Facilitator Supports the Grieving Process • 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

46. 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 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

47. Supportive ActionsListening Actions • 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

48. Supportive ActionsListening Responses • 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 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