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Grief and Loss in Individuals with Dual Diagnosis: A Guide for MH and DD Professionals

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Title: Grief and Loss in Individuals with Dual Diagnosis: A Guide for MH and DD Professionals


1
Grief and Loss in Individuals with Dual
Diagnosis A Guide for MH and DD Professionals
  • Lara Palay, MSW, LISW-S

2
Acknowledgments
  • Special thanks to Dr. Julie Gentile, MD Carroll
    Jackson, LISW-S and the staff of Hospice of the
    Western Reserve for their contributions, comments
    and expertise in the preparation of this
    material.

Mental Illness/Developmental Disabilities
Coordinating Center of Excellence
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  • As any poet or psychologist will tell you,
    memory is both the curse of grief and the
    eventual talisman against it what at first seems
    unbearable becomes the succor that that can
    outlast pain.
  • -Gail Caldwell, New York Times, 2011

Mental Illness/Developmental Disabilities
Coordinating Center of Excellence
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  • DSM IV-R criteria (mental retardation no longer
    current language)
  • Mild
  • 50/55 70 points
  • 85 of individuals with MR are in the Mild range
  • Moderate
  • 35/40 50/55 points
  • 10 of individuals with MR are in the Moderate
    range
  • Severe
  • 20/25 35/40 points
  • 3-4 of individuals with MR are in the Severe
    range
  • Profound
  • lt20/25 points
  • 1-2 of individuals with MR are in the Profound
    range

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Coordinating Center of Excellence
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  • Co-occurrence of mental illness and
    developmental disability (DD) is not only
    possible but common.
  • Research indicates that the prevalence of mental
    illness in this population is higher than that
    found in the general population. Estimates vary,
    but incidence is somewhere between 40-
    70 (in the general population rate is
    approximately 19).

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  • How do individuals with dual diagnoses grieve
    losses? In much the same way all people grieve.
  • The response of people with learning
    disabilities to bereavement is essentially the
    same as in non-disabled people.
  • Oswin,1991

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  • Why is it important to focus on grief and loss
    in individuals with dual diagnoses? Because it
    affects their functioning.
  • There is higher incidence of psychiatric
    illness following bereavement because of impaired
    adaptive functioning.
  • McLoughlin, 1986

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  • Approximately 50 admissions to hospitals were
    related to grief or loss issue
  • Ambivalent relationships may be related to more
    complicated grief processes
  • Marked behavior and mood changes following death
    50 of pts with severe behavior problems had loss
    of a close contact prior to onset most
    caregivers minimized or misunderstood reaction
  • Dodd et al, 2005

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Coordinating Center of Excellence
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  • Do individuals with dual diagnoses get to
    participate in healing rituals to deal with
    grief? Not often.
  • Only 16 of bereaved clients had opportunity to
    visit grave or place were ashes were scattered
  • Only 16 of clients received formal session(s) of
    bereavement counseling
  • Hollins et al, 1996

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  • What does this mean?
  • Non-involvement of people with I/DD in rituals
    is striking
  • Increased scores of aberrant behavior in bereaved
    group clearly indicate significant/disturbing
    impact of loss of an important attachment figure
  • In summary, there were significantly more
    cases of psychopathological morbidity in the
    bereaved group
  • Hollins et al, 1996

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Coordinating Center of Excellence
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  • And finally
  • 72 of institutional staffers felt clients had
    not been affected in any way by bereavement
  • Hollins et al, 1996
  • We treat grieving individuals with dual
    diagnoses differently, and thats a problem. But
    often we dont even see the problem.

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  • Randos Six Tasks of Grieving

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  • Recognize (avoidance phase)
  • Recognize the loss
  • acknowledge the loss
  • understand that it has happened

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  • React, Recollect and Relinquish
    (confrontation phase)
  • React to the separation
  • Experience pain
  • Feel, identify, accept and give some form of
    expression to all the psychological reactions to
    the loss
  • Identify and mourn secondary losses

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  • React, Recollect and Relinquish
    (confrontation phase) cont.
  • Recollect and re-experience the deceased and the
    relationship
  • Review and remember realistically
  • Revive and re-experience the feelings
  • Relinquish the old attachments to the deceased
    and the old assumptive world

16
  • Readjust and Reinvest (accommodation phase)
  • Readjust to move adaptively into the new world
    without forgetting the old
  • Revise the assumptive world
  • Develop a new relationship with the deceased
  • Adopt new ways of being in the world
  • Form a new identity
  • Reinvest in life

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  • How might these tasks present challenge for
    individuals with dual diagnoses?

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  • Recognition
  • These individuals may lack opportunities to
    participate in rituals that facilitate
    recognition (funerals, viewings, sitting Shiva,
    mourning clothes, covered mirrors, other outward
    reminders, etc.)
  • This may be made worse if others fail to
    recognize the individuals loss (special status
    of griever, cards/notes)

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  • Reaction
  • The individual may lack language for

    feelings, or may have been discouraged from
    expressing feelings.
  • Family and caregivers may misunderstand that
    having dual diagnoses does not prevent
    understanding a loss.

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  • Relinquishing
  • This may be difficult depending on the
    individuals developmental stage or understanding
    of object permanence.

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  • Readjustment
  • The individual may lack support, help with
    building new skills and understanding new
    assumptions about the world.
  • He or she may struggle to adapt to real
    secondary losses related to the role the person
    played in life, or struggle to adjust to a new
    environment.

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  • Reinvestment
  • The individual may be less likely to form
    significant attachments to others, especially
    with staff turnover, lack of social connection,
    and other isolating factors.
  • This is also challenging if the individual lacks
    training and the chance to practice relationship
    skills.
  • Finally, lack of support in finding meaning
    (attending church, participating in charity work,
    pursuing goals) can make this task hard to
    complete.

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  • How can mental health and DD professionals
    support grieving individuals with dual diagnoses?
  • Suggestions for each task of grieving

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Coordinating Center of Excellence
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  • What needs to be in place?
  • Mechanisms and rituals for grief (as for everyone
    else)
  • Supportive people recognizing and understanding
    grief (including examining ones own grief
    issues!)
  • Help with building language, especially for
    feelings
  • Help with skills and opportunities for later
    tasks
  • Intervention as needed for complicated bereavement


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  • Recognition
  • Participation in family and social events and
    rituals. Encourage flexibility with staffing to
    allow for individual to decide when he or she
    needs a break, or wants to leave early, etc.
    Prepare the individual thoroughly with social
    stories, role-playing, etc.
  • Encourage recognition from others (cards,
    flowers).
  • Assist in understanding of length of each
    task/phase of grief.
  • Explore using visible signs of grieving (picture
    of loved one on door, e.g.)


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  • Reacting
  • Feelings, feelings, feelings! Identify words and
    signals for emotions, and encourage the
    individual and his or her supporters to practice
    using them.
  • Point out when feelings rise and fall. Remind the
    individual that these feelings, though painful,
    do not last forever or destroy the individual.
    Help the individual breathe and watch the feeling
    come and go.
  • For coping with anger, consider the following
    model
  • Im angry
  • I miss (feel sad about)
  • I wish
  • Instead of having what I wish for, I can

27
  • Recollecting and Re-Experiencing
  • Encourage stories, remembrances (do not push)
  • Encourage creation of mementos if these have been
    lost (scrapbooks, memory boxes, draw pictures,
    write stories)
  • Make visits available to meaningful places
  • Work on anniversary and other rituals to mark
    place of loved one (moms picture at birthday
    table, special candle, etc.)

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  • Relinquishing
  • Explore concepts of death as the individual
    understands it. Repeat ideas such as loved ones
    are gone but still in ones heart, etc. Think
    about questions of self and role
  • Am I still the (son, daughter, sibling, friend)?
  • Who will love/take care of me?
  • Help the individual to build the skills needed in
    new environments or with a new conception of self
  • Explore and help the individual to understand the
    new assumptive world (for example, Things will
    not always stay the same, but I can cope with
    change.)

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  • Reinvestment
  • Encourage efforts to build emotional connections
    with others
  • Help to find meaningful activities or involvement
    (volunteering at charity, involvement in
    spiritual community)
  • Continue to explore ideas of identity,
    spirituality and purpose

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  • Remember that losses can come in many forms,
    especially for individuals with dual diagnoses,
    including
  • Separation from family/family home
  • Medically ill parents/caretakers
  • Separation from neighbors and friends
  • Divorce/relationship instability
  • Abandonment by family
  • Isolation because of sexual identity
  • Language barriers

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What are the rights of the people you work with?
(Smith, 1997)
  • To be in control
  • To have a sense of purpose
  • To reminisce
  • To know the truth
  • To be in denial
  • To be comfortable
  • To touch and be touched
  • To laughter
  • To cry and express anger
  • To explore the spiritual
  • To have a sense of family

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  • To be in control
  • Control is often a central issue for people with
    dual diagnoses. These individuals often do not
    feel they have control of normal aspects of
    daily life Where to live, with whom to
    associate, what work to do. People with dual
    diagnoses often feel control is outside them and
    may need to be encouraged to assert their own
    wishes and goals.

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  • To have a sense of purpose
  • For some individuals, this a regular part of
    life that can be enhanced or re-connected with,
    just as other people do. For others, life may
    lack purpose. Lack of access to meaningful work,
    lack of social/romantic/sexual outlets, lack of
    full participation in society can be longstanding
    contributors to this feeling. Caregivers need to
    be alert to opportunities to find purpose.

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  • To reminisce
  • Sometimes, people surrounding an individual with
    dual diagnoses seem to think that the individual
    doesnt remember loved ones as typically-developin
    g people do. These individuals are sometimes
    told not to dwell on losses or grief, or in
    fact on any negatively-perceived emotion.
    Reminiscing may be made harder if few
    possessions, keepsakes or mementos remain, as
    these individuals sometimes have to move
    frequently and live with little space for
    personal belongings.

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  • To be in denial
  • Family and caregivers may find it difficult to
    let the individual be in denial. They may be
    inclined to make them face reality. Supporters
    will need patience and sensitivity to discern if
    the individual truly does not comprehend and
    needs to be told in simpler or more concrete
    terms, or is choosing to deal with the truth
    gradually in his/her own way.

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  • To know the truth
  • On the opposite end of the spectrum, some family
    members or caregivers may wish to protect an
    individual with dual diagnoses. As noted above,
    lack of acknowledgement of grief, and possibly
    lack of preparation, can significantly contribute
    to emotional or psychiatric disturbance. People
    with dual diagnoses will generally understand
    death at a level comparable to his or her
    developmental age. (cont.)

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  • (cont.). He or she may have been discouraged
    from talking about death, or have had questions
    brushed aside. Supporters will need to explore
    the individuals basic understanding and beliefs,
    and consider doing some preparation or education,
    using role plays, social stories, story cards,
    etc.

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  • To be comfortable
  • Roommates, favorite staff, personal items and
    objects may help the individual to be
    comfortable. In palliative care for individuals
    approaching the end of life, a prescriber may
    encounter multiple psycho-tropics. Individuals
    with dual diagnoses are at greater risk for
    poly-pharmacy. Consultation with a dual
    diagnosis-trained psychiatrist may help. In
    prescribing for pain management, watch for over-
    or under-medication, which is common with this
    population.

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  • To touch and be touched
  • Human touch is as important for these as for any
    individual. Touching and hugging may be very
    familiar or unfamiliar, depending on the setting
    in which the individual lives (family home, group
    home, developmental center, etc.). However, be
    cautious of known traumatic stress that may make
    touch scary or triggering for an individual.

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Coordinating Center of Excellence
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  • To laughter
  • Yes!

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  • To cry and to express anger
  • Negative emotions such as sadness and
    especially anger may be uncomfortable for
    caregivers and family members. Individuals with
    dual diagnoses are often discouraged from
    expressing these emotions and may have been
    distracted, invalidated, minimized or shamed.
    These individuals may also have issues
    communicating feelings due to lack of an
    emotional vocabulary, or general problems with
    verbal expression.

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  • (cont.). Supporters may need to give explicit
    permission and encouragement to notice, name,
    explore and express feelings. Teaching names and
    gradations for feelings will be helpful. For
    individuals with expressive language or speech
    issues, consider drawing, sculpting, collages,
    play therapy techniques or music as means of
    expression.

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  • To explore the spiritual
  • Individuals with I/DD may or may not have access
    to his or her preferred form of worship. Explore
    his or her beliefs and encourage or facilitate
    expression and connection whenever possible.

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  • For spiritual work
  • Consider exploring issues of spiritual pain that
    others
  • may ignore (Groves and Klauser, 2005)
  • Relatedness pain
  • Forgiveness pain
  • Meaning pain
  • Hopelessness pain

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  • To have a sense of family
  • If the individual is losing a parent or other
    caregiver, he or she may be understandably
    nervous about the impact on her or her living
    situation. In some instances, the family may try
    to shield the individual from gatherings or
    rituals that they deem too upsetting. Consider
    gently encouraging the family to explore ways to
    include the individual, perhaps with flexible
    participation, modified settings and/or lots of
    rehearsal and preparation (see below).

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  • Additional Issues

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  • Be careful with language and euphemism about
    dying, and encourage family and caregivers to do
    the same. Expressions like someone got sick or
    went to sleep can be taken literally, causing
    anxiety and distress (If I go to sleep, I will
    die).
  • When dealing with feelings associated with
    grief, the individual may tolerate small doses of
    feelings and not stay deep for very long. Do not
    underestimate this as not needing to work through
    emotions. Small steps may be needed.

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Four Basic Issues in Trauma and Grief (adapted
from Duane Bowers, LPC 2010)
  • Who am I without(my loved one)? Who am I not?
  • What can I do (without my loved one)? What can I
    not do (without my loved one)?
  • What do I feel? (also How can I feel safe?
    How can I have my anger?)
  • How can I make myself feel better? How do I feel
    better without my loved one?

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  • Do not ignore elements of trauma! What were
    circumstances of the loss and the aftermath of
    the loss? Did the individual experience intense
    fear or a threat to his or her well-being? If
    so, there may be traumatic stress related to the
    loss, and this may need to be treated first to
    allow grieving to occur.

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Trauma-Informed Care A Universal Precaution
  • Research suggests that individuals with dual
    diagnoses are at very high risk for traumatic
    stress. Some researchers estimate that more than
    90 of individuals experience some level of
    trauma in their lives (Sobsey, 1994).
    Trauma-informed care, particularly helping
    individuals to feel safe and in control, is a
    universal precaution for this population. Making
    sure someone feels safe and in control of his or
    her own life will not hurt anyone who does NOT
    have a trauma history.

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  • For someone with traumatic stress, a
  • loss can revive old feelings of fear, sadness,
    anger or powerlessness.
  • Agitation, irritability, hyper-vigilance,
    avoidance and withdrawal are normal and to be
    expected. Help family and caregivers to ensure
    the individual feels safe, loved and in control
    will usually help to reduce these behaviors over
    time.

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Complicated Bereavement Some Considerations
  • Grief, like many other universal human
    experiences, is not an illness. With support and
    compassion from others, most people, with or
    without disabilities or mental illness, will
    grieve and eventually return to a normal range of
    feelings, functioning and attachments. In
    situations where grieving is prevented, delayed
    or otherwise obstructed, however, complicated
    bereavement can occur.

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  • Categories of Complicated Bereavement (Rando,
    1994)
  • Absent Mourning
  • Delayed Mourning
  • Inhibited Mourning
  • Distorted Mourning (angry type guilty type)
  • Conflicted Mourning
  • Unanticipated Mourning
  • Chronic Mourning

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Absent Mourning
  • Absent mourning requires complete shock or
    complete denial
  • This is unusual in general population the
    incidence is not known in people with
    developmental disabilities
  • What looks like absent mourning is more likely to
    be inhibited mourning

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Delayed Mourning
  • Delayed mourning is a predictor of future
    complicated mourning
  • This may occur due to factors such as lack of
    supports (a high risk in people with DD)
  • Mourning may be experienced later, either
    deliberately (when ready) or when triggered by
    other losses

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Inhibited Mourning
  • Some elements of inhibition are often experienced
    in uncomplicated mourning as well
  • Often inhibition is incomplete some parts of
    loss are mourned while others are not
  • This may manifest as physical complaints or
    psychological problems

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Distorted Mourning
  • Over-activity without sense of loss
  • Display of symptoms belonging to deceased
  • Psychosomatic illness
  • Alteration of relationships with others
  • Extreme hostility to particular others
  • Wooden, formal appearance without
    schizoaffective illness
  • Lasting loss of social interaction
  • Self-harmful actions
  • Agitated depression (italics mine)

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Conflicted Mourning
  • Conflicted mourning may follow initial absence of
    grief or even feelings of relief
  • There are two recognized types of conflicted
    mourning
  • Extremely angry type
  • Extremely guilty type
  • This often occurs with conflicted relationships
    and unresolved emotional issues (i.e., the death
    of an abusive parent)

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Unanticipated Mourning
  • Unanticipated mourning results from a sudden,
    unexpected death
  • This can also occur after an untimely death
    (young age, e.g.)
  • Denial may be a very prominent feature of this
    type
  • It may present as features of obsessive/compulsive
    disorder, hysteria, anxiety or bipolar mood
    disorder, including temporary psychosis
  • In assessing unanticipated mourning, consider
    co-occurring trauma depending on the cause of
    death, proximity of the mourner, etc.

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Indicators of Complicated Bereavement
  • Pattern of vulnerability to, sensitivity toward
    or overreaction to experiences involving loss and
    separation
  • Psychological and behavioral restlessness,
    oversensitivity, arousal, over-reactivity and
    feeling geared up always needing to be
    occupied as if to avoid feeling
  • Unusually high death anxiety focusing on self or
    loved ones.
  • Excessive and persistent over-idealization of
    deceased or of relationship with deceased

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Indicators, Continued
  • Rigid compulsive or ritualistic behavior that
    interferes with individuals freedom and
    well-being
  • Persistent obsessive thoughts and preoccupation
    with deceased, elements of loss
  • Inability to experience emotional reactions to
    loss typical to bereavement and/or
    uncharacteristically constricted affect
  • Inability to articulate (within capacity)
    existing feelings and thoughts about deceased and
    loss.

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Indicators, Continued
  • Fear of intimacy in relationships with others,
    starting or worsening after death, seeming to
    indicate fear of loss
  • Pattern of self-destructive relationships
    starting or worsening after death, including
    compulsive care-giving and replacement
    relationships
  • Self-defeating, self-destructive, or acting-out
    behavior starting or worsening after death
  • Chronic feelings of numbness, alienation,
    depersonalization, or other feelings/affects that
    isolate mourner from others
  • Chronic anger, irritability, or combination of
    anger and depression

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Considerations for individuals with DD
  • If you suspect an individual may be suffering
    from complicated bereavement, consider these
    possible factors first
  • Difficulty with emotional expression or lack of
    outlets and support for expressed emotion
  • Developmental age and understanding of death vs.
    denial
  • Reliance on caregivers vs. compulsive
    care-giving and replacement relationships
  • Co-occurring OCD or OCD features

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  • Feelings of isolation due to actual isolating
    circumstances
  • Difficulty articulating abstractions such as
    depersonalization
  • Co-occurring mood disorders undiagnosed or
    exacerbated by loss
  • Collateral or everyday losses that are
    unacknowledged

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  • Taking these considerations into account, it may
    be appropriate to arrange a referral for expert
    grief counseling if indicators of complicated
    bereavement are present.

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Whats not Complicated Bereavement?
  • These experiences can be misconstrued as CB, but
    in fact are common elements of uncomplicated
    (normal) grieving (Rando, 1994)
  • Recurrence of feelings, issues and unresolved
    conflicts from past losses that were not dealt
    with previously
  • Feelings other than sadness (anger, guilt), and
    reacting to the loss behaviorally, socially and
    physically-not just emotionally
  • Feeling that part of oneself has died with the
    deceased

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  • Feeling sorry for oneself
  • Having a continued relationship with the deceased
  • Maintaining parts of ones environment to
    stimulate memories of the deceased
  • Feeling more vulnerable about ones own death or
    deaths of loved ones

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  • Taking action so others will not forget the
    deceased
  • Feeling reluctant to change things/have things
    changed that the deceased was part of or knew
    about
  • Experiencing some aspects of mourning that may
    continue for many years if not forever, and/or
    mourning that does not decrease linearly over
    time (italics mine)

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  • Feeling resentment that others are living while
    ones loved one has died, or that others are not
    mourning.
  • Experiencing temporary acute upswings of grief
    long after the loss

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  • Suppressed grief suffocates it rages within
    the breast, and is forced to multiply its
    strength.
  • Ovid, Tristium, V, 1, 63.
  • Remember facilitating the experience and
    expression of grief can make a profound impact on
    the lives of people we serve and support.

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Citations
  • American Psychiatric Association, Diagnostic and
    Statistical Manual of Mental Disorders, 1994.
  • Bowers, Duane, LPC Trauma, PTSD and Traumatic
    Grief, presentation, 2010
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