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GRIEF AND LOSS

GRIEF AND LOSS. A Healing Culture. for All Staff. Goals. 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. Background.

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GRIEF AND LOSS

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  1. GRIEF AND LOSS A Healing Culture for All Staff

  2. Goals • 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

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

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

  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. 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)

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

  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 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

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

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

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