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GRIEF AND LOSS Moving Through The Grieving Process for Grief Facilitators – PowerPoint PPT presentation

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Moving Through The Grieving Process
for Grief Facilitators
  • 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

  • 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

  • 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).

Life and Loss
  • There are things that we dont want to happen,
    but have to accept
  • Things we dont want to know,
  • but have to learn
  • And people we cant live without,
  • but have to let go
  • unknown author

Personal Exploration
  • 1. Describe the most painful loss you
  • 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
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

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

  • 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.

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
  • 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

How do we Approach Loss and Grief?
  • It is important to approach loss and grief not
    from an intellectual but from an emotional
  • 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

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 cant get over it, but we must go through it

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

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

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

Five Stages of Grief
  • Denial This cant be happening to me.
  • Anger Why is this happening? Who is to blame?
  • Bargaining Make this not happen, and in return
    I will ____.
  • Depression Im too sad to do anything.
  • Acceptance Im at peace with what happened.

The 4 Ds in Dealing with Grief
  • Denial
  • Drugs
  • Diversions
  • Distractions
  • These keep people from going to the scary
  • places of grief

At the loss of a Loved One
  • What People Need
  • Permission to grieve
  • Hope
  • Comfort/support
  • Understanding grief cycle
  • What They Dont
  • Sermonizing
  • Bible quoted to them
  • Told what to feel
  • Indifference

Coping with Grief Means
  • Understanding and making sense of a loss
  • Identifying expressing feelings and emotions
  • Remembering the persons life
  • Continuing on - reintegration
  • Adapted Hill, M. Drawn together.

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

Grief can be
  • Normal
  • Disenfranchised
  • Complicated
  • ELNEC, 2005

Normal grief
  • Whats normal but
  • Can include
  • disbelief
  • anger
  • guilt
  • sadness
  • preoccupation with the death
  • Sleep loss or excessive sleep
  • Weight loss or gain

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

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

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

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

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

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

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)

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//

Unresolved GriefWhat can it do?
  • Repressed, unrecognized or unresolved grief can
  • 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

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)
Tasks of Mourning
  • Task III
  • To adjust to an environment in which the deceased
    is missing or to adjust to an environment after
  • 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)
Tasks of Mourning Exercise What would
  • 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
  • To withdraw emotional energy and reinvest it in
    another relationship

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
  • To withdraw emotional energy and reinvest it in
    another relationship

NorthPointe Protocols
  • Policy - Procedure
  • Staff Training (handout)
  • Grief and Loss A Healing Culture
  • Grief and Loss Moving Through The Grieving
  • Enhancing Community Based Options for End of Life
  • Individuals We Support
  • The Life Cycle Workshops (SCOPE)
  • http//

NorthPointe Policy
  • Review
  • Policy - Procedure

  • Review The Life Cycle Workshops (SCOPE)
  • http//
  • Inservice
  • Hospice
  • Grief and Loss

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

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

Grief Support Facilitator Brings the Team
  • 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

Grief Support Facilitator Shares Information
Regarding Loss
  • Be direct and honest
  • Communicate in a private place
  • Repeat the message
  • Dont be afraid to set limits on time and place
  • Be supportive

Shares Information Regarding Loss What to Say
Words to use
  • died
  • death
  • passed on
  • long sleep
  • pushing up daisies
  • kicked the bucket
  • went to sleep and died
  • went to the hospital and died

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

Grief Support Facilitator Supports the Grieving
  • 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
  • DOS
  • Listen seek a private place
  • Mention the person by name it personalizes the
  • Be genuine with expression of your feelings
  • Encourage them to resume their normal activities,
    especially for adolescents peer group very
  • Be prepared to attend to individuals spontaneous
    expressions of feelings
  • Set limits, as needed
  • 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 dont
    know all the answers
  • Avoid the individual change subject
  • Minimize the loss
  • Attempt to become a substitute for deceased
  • Pressure the individual to talk

Supportive ActionsListening Actions
  • Listening to someone who is crying is difficult,
    but important
  • Calm down someone who is hysterical
  • Dont change the subject or distract the griever
  • Dont give advice or quiz for details
  • Listen for content the feelings underneath the
  • Pay attention to non-verbal communication
  • Relax, be yourself
  • Tolerate silence

Husar Bereavement Care
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 speakers ideas within context

Husar Bereavement Care
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
Supportive Activities
  • Express feelings through drawing, coloring,
  • 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

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
  • 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

Grieving Process ResourcesResource Room Library
  • Lessons In Death and Dying
  • Helping People with Developmental Disabilities
  • Enhancing Community Based Options for End of Life

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

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

Grief Support Facilitator Notices Changes
verbal and non-verbal
  • 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 Know When To Call the
Grief Therapist
  • 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
  • Negative thinking or lack of interest about the

Additional Program Examples
  • Drawn Together art therapy workshop program
    for families to honor loved ones and share
  • Picturing Death reflection and exploration,
    through pictures and writing, of personal meaning
    about loss, grief, and end of life
  • http//
  • MAP Foundation from Great Britain looks at art
    and journaling http//
  • Easter Seals Enhancing Community Based Options
    for End of Life Care http//
  • Supporting People with Disabilities Coping with
    Grief and Loss http//

Additional Resources
  • Local and State Organizations
  • Chicago End of Life Care Coalition
  • http//
  • Illinois Hospice and Palliative Care Organization
  • http//
  • National Organizations Resources
  • Aging With Dignity
  • http//
  • National Hospice and Palliative Care Organization
  • http//
  • National Pain Foundation
  • http//
  • National Consensus Project
  • http//
  • Resources for Health Professionals Including
    Nurses, Physicians
  • End of Life Nursing Education Consortium (ELNEC)
  • http//
  • End of Life/Palliative Education Resource Center
  • http//

  • 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.
  • National Cancer Institute (2005).